He Maketh No Mistakes

Look out world!

2012-01-24T22:06:00.002-05:00

Look out world! Here she comes! Haddie rolled from her belly to her back tonight! It was also her first time in the pool - she really liked it!

Haddie rolling

2012-01-23T19:28:00.002-05:00

I didn't want to post this in the middle of all Dillon's medical stuff...

A few days ago Haddie started rolling from her belly to her back!

Jay learned to walk in the hallways of the PICU and Haddie learned to roll in the room on the Pulm floor. What's with my kids hitting milestones while Dillon is in the hospital??

I am so excited to see her growing but I'm enjoying every minute of her being a baby - next time I blink I think she'll be getting married! :o)

Home Sweet Home

2012-01-23T08:48:00.002-05:00

Dillon came home Sunday afternoon!

We are so happy to be home together. We have a lot of catching up to do this week! Laundry, dishes, grocery shopping, school, cleaning, etc etc etc. But it is good to be home to do all that.

I recalculated Dillon's feeding pump numbers yesterday to be sure he is getting the full amount. It seems it is going to take time to get used to this pump. It keeps stopping on us and doing weird things.

Thank you to everyone who told us they were praying. It made our time there easier to know that people were lifting us up in prayer. And the days when I was most discouraged many people called or wrote little notes of encouragement. Thank you.

I will try to keep people updated as he continues to get better. Please pray with me that when they retest him in several weeks they will find that he is not aspirating so he doesn't have to be on the pump 23 hours a day!!

Thanks!!

Day 10 at CHOP

2012-01-20T18:07:00.002-05:00

Another day, another blog.

Today was another good day. Dillon has been great all day. They started him on 18ml per hour instead of the 36 that would be a full amount. He has handled his food fine all day. On rounds the doctor said we would probably go home on Monday. Then later she came in and said that as long as he stayed stable we can go home on Sunday.

We placed calls to get him a food pump so he can go home on continuous food. They plan to keep him this way until he is fully recovered and able to see GI for a repeat milk scan or probe to see if he is aspirating.

The nurse/doctors sent the prescriptions to the pharmacy already so the medicines will be ready when we are. He will be going home on 2 antibiotics through G-tube, one inhaled antibiotic and hyper tonic solution.

Dillon got a bath, had his teeth brushed good and was sitting in his chair for a while this afternoon. Right now he is resting in bed. His heart rate has been below 120 almost the whole day. (Other than when it took 4 sticks to get some blood!) His oxygen has been 97-100 most of the day. Do you know how unusual it is to see 100 on ROOM AIR for Dillon?!?! I really think cleaning his lungs out and the antibiotics are helping him already. I am excited to see if this continues. I am also praying he won't be aspirating when we get the repeat tests!

Thank you again to everyone who has helped, called me, emailed me, sent ecards to the room, made meals, etc. This has been a hard time for the whole family but it is good to see the light at the end of the tunnel.

Day 9 at CHOP

2012-01-19T22:28:00.005-05:00

I came in this morning with all the kids to find Dillon without any clothes on, stiff as a board, bright red cheeks, dark brown being vomited out, and heart rate over 200.

My heart sank.

My adrenaline sky rocketed.

I literally dropped everything and started trying to help him calm down. I went to find the nurse and was told that he had a fever and they were going to give him Tylenol. I was told he had a fever in the night of 103 and his capillary refills were a good 3 seconds and then on rounds the doctors were saying they were afraid he was septic (infection in the blood - very dangerous) so they were going to start him on vancomicine - a very strong antibiotic. I was so heart broken. We were supposed to be going home tomorrow and now they think he is septic! The Attending is so sweet she saw I was confused and upset and came in right away to talk with just me. I just started to cry. She gave me a hug and just talked to me. It is so hard to watch your little boy go through so much. It is so hard to be thinking he is getting better and going home then told that it could be weeks before he goes home!

Right after I got there and started to help him, everything started to calm down. his heart rate came down, his fever came down (by 2 degrees which Tylenol doesn't normally do and it came down before the Tylenol should have kicked in), everything calmed!

A doctor came in tonight and said when Dillon wasn't doing good last night they someone asked about it being a seizure - but she was the one who admitted me and was able to tell them very clearly that she knew it was not even though it looks like one b/c we had a big long discussion about it. More like - I told them I would bring legal action if they drugged him again for something I have clearly told them it wasn't. She was so happy that she was able to prevent him from being drugged unnecessarily. I am so thankful she was here last night and remembered and BELIEVED me! :o)

They wanted to draw blood from his artery but after two different doctors were digging in his arm I said they needed to stop and just draw it from a vein. The phlebotist got it right away no problems at all. Of course Dillon was not happy with every one sticking him.

A sweet friend came up to help and spent most of the day here. Other people called to tell me they were praying for us. One of Dillon's therapists came. It turned out to be a great day! Dillon's heart rate was below 130 most of the day, no more fever, no red cheeks, nothing! I asked his nurse if the antibiotic helped that fast but she said he had calmed down BEFORE his first dose!

My friend took the boys home and is keeping them tomorrow for us. They are excited to play with her. I think they are tired of the hospital after two days! :o)

They didn't feed Dillon all day today so tomorrow they will try to start his food again. That, and his temps, will determine when we go home.

Thank you to all who have been praying. It started as a bad day but it turned out to be a good day because of so many friends encouraging me and all the prayers for Dillon!

Day 8 at CHOP

2012-01-18T18:43:00.003-05:00

Let's see, what happened today...?

All four children were with me here at the hospital. The boys needed to be with me here, but that has made it more stressful. But I love them and since I have been missing them so much I am happy they were here.

One of Dillon's nurses came for a visit and spent some time with us, that was a blessing. It is always good to have visitors when you have been here this long.

Dillon had his sweat test today - I had warned them he doesn't sweat and they were not able to get enough sweat to test

Dillon has been upset all day and had a kind of bad day since he now has a BAD diaper rash.

GI wants to do the J-tube but they feel it is reasonable to get a repeat milk scan and probe done when he is back to baseline so we can see what he is normally doing. I asked if he is always aspirating why has it been 2 years since we were here for an aspiration pneumonia. They don't know.

I got to talk to a good friend on the phone for over an hour and be encouraged by her.

Its been discouraging today. After 8 days in here I am exhausted, run down, still trying to remind myself to drink enough to be nursing Haddie and I am just tired. I really want to go home, I am glad they are saying we should be going on Friday. Not thrilled with decisions we need to make about the feeds and not thrilled that he will be going home on 3 antibiotics. But I just can't wait to get home.

I had one friend ask me questions about my post yesterday in a very kind loving way to which I explained my reasons for not liking immunizations. I had another person leave me a comment that discouraged me more. But whenever someone does that it is neat to see how God used 3 other people to encourage me today. I am already emotionally tired from watching them have to prick Dillon and squeeze several mls of blood from his toes - twice today, pull his 2nd IV and place the 3rd, take the 5th or so blood draw, and talking to doctor after doctor after doctor. Trying to remember everything they are telling me, and trying to figure out the long term effects of the different things. I hope my blog isn't seen as negative and bringing people down. That is not the desire of my heart. I was, and still am, upset but I think any parent would be. I may need to clarify that I was not "shaking in anger" like this person thought, I was shaking and crying because I don't like to stand up to someone. I was scared what would happen because I told him to leave I didn't know if my Attending would be mad at me or not, but I knew I could not listen to him blame me for Dillon's bronchitis which has nothing to do with immunizations. I even asked a doctor today if he would have had that one would it of made a difference in him getting sick and he said no. I am so thankful for that friend who called me and just chatted, encouraged me to always be an advocate for my son, and talked about how God's has been working in her life recently to encourage me. I am thankful for the other people God brought into my life today to just encourage me to be Dillon's advocate. I say all this to say I really appreciate your prayers for me right now. It's been a long few days. My whole family is feeling the effects of it as Jay asked Daddy the other day "Did you have to be away from home a lot when you were a kid too? I don't want to be away, I just want to go home and be normal."

We are going to sleep with the kids at a local hotel tonight so we will be close enough in case there is anything wrong with Dillon. I'm going crazy in this room! :o) But worse yet, I go crazy when I am not with him to make sure he is healthy and safe!

Dr. Paul Offit

2012-01-17T20:09:00.004-05:00

Day 7 at CHOP was probably the hardest day yet. Not because Dillon is declining, not because he had a bunch of test or even surgery. Today was hard because of a Dr. Paul Offit. Here's how it happened:

When the doctors did the scope on Dillon they took samples directly from his lungs to culture and see what bacteria was in there. The results were positive for several things; including staph, e coli, something that is often immunized against, and something the attending didn't even know what it was. No one knows how he got these bcteria in his lungs. The doctors contacted ID doctors (Infectious disease) to make sure the two antibiotics Dillon is on are enough to kill all these bacteria.

The ID fellow came in and talked with me about how they wanted to stop all antibiotics since he is so good clinically and does not seem to be reacting at all. She said they think his plastic bronchitis was because he is not immunized. She wondered why we do not immunize him and if I immunize my other children. I told her how I knew of someone who had a son with brain damage and it was made worse - both clinically and on a brain MRI - after an immunization. I also told her how Truett went from smiling and sitting up on his own to staring right through us, not smiling, took over a month to start to sit again, and how his hand shook and he couldn't find his mouth to feed himself snacks anymore after an immunization.

She told me to ask her attending if I have any questions since he knows all about vaccines and dedicated his life towards them. I didn't say much since I didn't feel I have any questions. I am comfortable with our decisions.

After she left I knew they were going to keep pushing the vaccine thing so I started to do some research again to pass the time. My mother in law sent me an article that someone "just so happened" to send to her this morning on Hep B vaccines. I posted a quote on my facebook and some friends and I started talking. A friend "just so happened" to send me a link that had resources about what is in vaccines and the effects of them. I "just so happened" to find a link on there for a video that I watched.

The video was from CBS news questioning how independent are these groups that claim to unbiasedly test vaccines to know if they are safe. CBS found that the American Academy of Paediatrics takes hundreds of thousands, even millions, of dollars from the drug companies that make the vaccines. One company even funded their headquarters!

There was one doctor named that was well known to advocate for the vaccines. He is from... you guessed it... Children's Hospital of Philadelphia. He sits on a board here that is funded by a drug company in the amount of 1.5 million dollars! He owns a patient for a vaccine that the royalties sold for 185 million. CHOP made about 150 million off of it and the doctor made somewhere around 6+ million (according to other articles I was reading). This doctor was also quoted to have claimed that it is safe for a baby to be given 10,000 vaccines at once!
Please watch the video - to see for yourself and to make sure the terms I used were all correct. The video can be seen here: http://www.cbsnews.com/stories/2008/07/25/cbsnews_investigates/main4296175.shtml

After watching this video I couldn't believe what I heard. I thought to myself - humm I wonder if I could find this guy here and ask if he would be willing to get 10,000 vaccines at once so I could see that it really is safe.

About 20 minutes later, guess who walked into Dillon's room. THAT same doctor, Dr. Paul Offit! As soon as he said his name I knew who he was. He said again how they don't want to treat him with antibiotics and then started right into vaccination speech.

He told me that I am "putting him in danger by not immunizing him." I knew I would not be able to talk with him so I said You can leave. I also told him that I don't need a doctor to come tell me I am putting my son in danger when everyone is surprised at how healthy he is, how he coughed up the mucus plugs that healthy children can't cough up, how his lungs looked better than they thought. I told him I just saw a video about him. Again I told them they needed to leave the room. I followed them out of the room and Dillon's nurse and I both heard him say in the hallway "Well, that was fun."

I then told his nurse what just happened as I was shaking. A social worker was just bringing me some meal vouchers and I told her that something just happened so she told me that she would probably get a page to come talk with me so we chatted for a few minutes. I also asked the attending from the floor to come in so I could explain why I told this doctor to get out.

One thing I can't quite figure out: If I "put him in so much danger" by not immunizing him and that is what supposedly caused this bronchitis... why did he want to stop treatments? Why did my attending seemed shocked when I told her he wanted to stop the antibiotics and had to go get him to sign off that she CAN continue to treat him?

I was shaking for a while and felt terrible! I never told a doctor to get out of my room before. But I will not have a man, who is basically a politician being paid to push an agenda, tell me that I am putting my son in danger! He knows nothing about me, Dillon or what we do for Dillon. I do not believe I am putting him in danger by not injecting him with 55 vaccines that contain mercury, formaldehyde, anti-freeze, animal feces, animal blood products, etc. in them.

Dillon is extremely healthy for how severely disabled he is and I will not have a doctor tell me I am putting him in danger! How dare this doctor try to bully me into doing what he wanted! Attack me as a parent when all I want is to treat my son as naturally as possible to preserve his liver and kidneys so he can have a long healthy life.

There is a lot of info on Dr. Paul Offit if you google him. Some good, some not so much. I understand he is working to try to make kids healthier. I don't doubt his intentions are probably good. I do question at what point does money skew your view? How much money does it take? Dr. Paul Offit claims money, even his 6+ million hasn't skewed his position. Maybe he just has poor bedside manner to talk to parents like this. I'm not sure, what I am sure of is Dr. Paul Offit won't be seeing my son again.

Day 6 at CHOP

2012-01-16T17:23:00.002-05:00

Still here! Unfortunately....

Day 6 was uneventful. Dillon is doing well. They took blood from him and had PT and OT come see him. He had to go from 36ml down to 30ml an hour for his food because he continues to vomit. Tomorrow morning at 10:15 he is scheduled for the upper GI. From there we will hopefully know what we need to do to help his aspirations. From my view point I think the best answer will be to do laparoscopic surgery and fix his nissen. I don't know if that is going to be possible or not, but that is what I think is the best long term solution and am praying toward that end. However, God knows what I don't and we do want to pray that God's perfect Will will be done for Dillon in this situation.

I am so thankful for the many wonderful friends we have that are helping with Jay and Truett while we are up here. It is making this so much less stressful! I am so glad they are able to go to our friend’s house and have fun each day instead of going crazy up here with me! :o)

I am also thankful for the visit from one of Dillon's nurses today and from the clinical care coordinator from one of the agencies. It is nice to have some people to talk to.

They said on rounds today to plan to be here till Wed or Thursday. :o(

Thank you for prayers! We appreicate them and know God hears. God has protected him every step of the way. Even though I don't like being here I am so thankful Dillon is stable - at least I am not worried if he is going to make it or not. And in this place that is something you don't take lightly. I'm sure there are many parents right now who are in that very situation. Will you stop and pray for the other kids up here too? God knows and loves each and every little child in this hospital.

Update Day 3

2012-01-13T21:37:00.002-05:00

Dillon's upper GI was not done today because he had to stay NPO for the scope, which was more important to get done. They took him down around 1:30 to the OR. Dillon came back to the room from his scope around 6. His lungs looked a lot BETTER than the doctor thought they would compared to how bad his CT scan looked. There was some scars, which she thought there would be. There were no more bronchial tree plugs but they did clean out a lot of mucus, they are planning that he will probably get a fever from it tonight and may have a hard time coughing it all up.
They took a sample from in his nose and in his lungs to culture. They want to treat him with antibiotics for 3-4 weeks and may have to be on low doeses 3 times a weeks from now on, we'll find out more in the days to come. But praise the Lord his lungs were better than planned. She took pictures for me like I asked so I will try to get those soon. He is still resting pretty good from the drugs.
Thank you all for praying. I think we will be making some decisions next week about his G-tube feeds. Right now they do not feel it is safe to feed him like they normally do so they are feeing him 36ml an hour over 24 hours a day. On Tuesday they will hopefully do his Upper GI (despite what they say - parts of medicine DO take a holiday!). At that point we will know if his nissen is still working and if not if surgery thinks they can fix it again. If not, we may have to talk about a J tube. We have not liked the J tube before because it gets clogged all the time, it can only be placed by radiology and it means he will be on a feeding pump 20 our of 24 hours. I don't know if there is a third option or not yet.

Update day 2

2012-01-12T22:39:00.002-05:00

Today was a pretty busy day for Dillon here at CHOP. He was NPO (no food) most of the night/day. They took him around 1:30 for a chest CT scan. That came back showing more trees according to the resident.

Then they took him for a milk scan that was supposed to be 1 hour 5 minutes and it took 2 hours and 15 minutes. Thankfully, Haddie and I were with him the whole time. He was coughing so hard during it that they had to keep changing the bedding underneath him. They also had to keep cleaning their cameras because if the radioactive stuff got on a camera it could break it! The guy was teasing that we are going to get a bigger big for all the laundry Dillon was making but can you imagine if he broke their camera!!?? :o)

The problem was they were seeing the radioactive material on the bed and it would look like it was in him. But this meant that he was coughing up the radioactive material....not good. The test results came back that he is refluxing and aspirating his milk. Not good again. I guess we will be talking with the doctor tomorrow to see what we need to do for the reflux/aspirations. I am not sure if treating the reflux will solve the aspiration problem or if he will still be aspirating on just his secretions. He should not be able to reflux if his nissen was still in place - but we won't know about that until tomorrow when they do an upper GI. Blah.

They also had me sign the paperwork tonight for taking him to the OR tomorrow afternoon for the scope. I still remember the first time I had to sign papers for a surgery for him. It was to place a broviac when he was just a few days old. I don't know how many I have signed since, but it still is always a chilling moment as I sign my permission for them to take him into the OR, put him under, and breathe for him so they can do something to his body that shouldn't have to be done to any little boy. But - God is good and every time he has handled the anesthesia well. The plan will be to remove the breathing tube right away unless they feel he has swelling and needs it to be left in longer.

From what I have read about this cast or plastic bronchitis we are blessed beyond measure that he has not been in a life and death situation with it, especially with all his medical issues. He is a fighter, he is so strong to have coughed these "rubber like" things up. We are blessed that, even though it is extremely rare, his doctor had seen it before and knew what it was right away and knew what actions needed to be taken to ensure his safety.

Thank you Lord for answering my prayers. After he coughed something up the first time, his nurse and I were talking and I said "Let's just pray that if it is something serious he will cough something up again so we can figure this out." Literally 2 hours later he coughed up the bronchial trees! We both knew right then that something wasn't right because it was clearly an answer to my prayer! So although it is not fun to be here and I miss my boys terribly, I am thankful for friends that are so kind to watch them, and for doctors who are doing their best to figure out the cause as well as the solution.... but I still can't wait to get home!!! :o)

Dillon is at CHOP

2012-01-11T21:32:00.005-05:00

Where to start?!?! At the beginning is usually the best place. This is what I took to the doctor today...

12-17-11 – Coughed up Substance #1 – white worm like pieces up to ½ inch long. Vomited then a minute or so later he coughed it up while lying on his stomach. I had called the on-call doctor and she told me to keep it in the fridge till Monday. When we took it in on Monday they said it had been too long so they wouldn't even test it. *Not a happy Momma

12-18-11 - Fever in the night up to 101 heart rate over 200
12-19-11 - Coughed up Substance #2 – 2 long twisty things, not pure white like the first thing. About an inch long each while still all twisted together. Lying on his belly. No vomit. Ran this up to the doctor right away. They cultured it and it came back positive for normal flora (bacteria), rare budding yeast, and moderate white cells. But they forgot to identify it! **REALLY not a happy Momma!!

Constipated for 4 days – which has not happened since July when we started Miralax
12-21-11 - Took BM sample with tan round things in it to doctor. Very unusual for his BM to have anything like this in it since h is always on the same formula there is never any substances in it.
12-23-11 – Diarrhea
Constipated for 4 days then the next day had BM then another one that was watery, the next day had a BM then one that was watery
1-6-12 – Coughed up more of substance #1. Lying on his belly, had vomited prior to coughing it up. At this point I called Pulm doctors and THEY could not figure out how to have someone in pathology identity this thing. I was going CRAZY, I know something is not right and no one seems to be taking me serious. Then, Josiah's aunt volunteered to come from WV to get the sample and take it back to the lab where she is working towards her PhD in neuroscience.

I will interject here - while I was going crazy and wanting to pound my head on the wall - God was working all things for good. He had a plan that I did not foresee. Josiah's aunt received Jesus Christ as her Saviour in the car on the way up with my Mother-in-law. Praise the Lord! His ways are not our ways, but His ways are so much better.

Other non-baseline things that have been going on this whole time include:
· For over a year now Dillon has wanted to rest/sleep on his back rather than belly. Since this has all been happening the nurses have had to put him on his belly or he is very upset.
· Agitated more, heart rate going high even at night, not sleeping well, irritated during the day
· Not tolerating stander – heart rate goes as high as 245
· Flushed face constantly
· Vomiting more
· Vomiting the dark brown blood sometimes
· At least 7 times of going 12+ hours without urine
· PT noticed on 1-9-12 that his left leg from the knee down was swollen or had extra fluid
· Switches between no secretions at all – no coughing/drooling for the entire day to drool just pouring out of his mouth nonstop soaking towel after towel – but meds are the same

Monday Aunty Helen was able to tell me that the second thing was a bronchial tree mucus plug. http://library.med.utah.edu/WebPath/LUNGHTML/LUNG051.html I called Pulm and they said they couldn't fit him in before next week so we made an appointment for next Wed.

Then on Tuesday she was able to give me more answers, that the white things were mucus mixed with lipids (fat). When i told our doctor he wanted me to call Pulm right away and get him seen sooner. When they found out this info yesterday they suddenly were able to squeeze him in today.

The doctor said she was planning to put him on a nebulizer to break up some secretions, etc. But when she saw these pictures she said "I know what this is. This is cast bronchitis. How do you feel about being admitted?"

ummm Not too good! :o) No, we decided we would take weeks to get all the tests done or admit Dillon and get everything done in 3-5 days and keep him safe. So he got admitted. They already did a chest X-ray, and took nasal secretions to test. They are planning to do bloodwork tonight, they are not feeding him in the night so he can have a CT scan of his lungs and a scope done tomorrow (to see how much fat is in his lungs, how many plugs and hopefully find out where it is coming from ie previous aspirations or is he continuing to micro-aspirate.)

So that's where we are. A very sweet lady from church let me drop the boys off with her tonight and is going to keep them. I am home with Haddie for now and will go up tomorrow morning so Josiah can get to work.

WAY Behind!

2012-01-01T13:21:00.013-05:00

Wow, am I ever WAY behind in my blogging. For those who read my blog, sorry! With four little ones it is somehow getting harder and harder to find time to blog! Imagine that! :o) Get ready to go on a fast forward trip over the last two months with me in pictures!

JayDonn has completed 57 days of homeschool! He has learned "The Lord's Prayer", 9 Bible verses, working on Psalm 100, almost every lower case CURSIVE letter (he already knew all the letters in print), he learns about our community, our country, does art projects, and Daddy has even started him on piano lessons that he practices every day. This day he was allowed to do school in a dress up outfit just for fun!
I really wanted the stickers for the back of my van, it took quite some looking but we finally found one with a boy in a wheelchair! I love my family!

My GramMa - who Haddie is named after - came to spend about 2 weeks with us. While she was here we got to go back to where she used to live. It just so "happens" to be 5 minutes from the church we are helping to start! The church in this picture is where GramMa was saved by grace when she was 12 years old! Praise the Lord - where would I be today if this church wasn't preaching the gospel to young children all those years ago? How will your service for God today effect the next 50+ years??

We were blessed to have both my GramMa and Josiah's Grandma with us for Thanksgiving. As well as Dad and Mom, Hannah and Todd. 4 Generation photo with Josiah's Grandma.

4 Generation photo with my GramMa (minus my Dad - who couldn't be here)

GramMa and GramPa started some churches during their ministry so while she was here, GramMa took some photos in the building we are in right now with Greater Philadelphia Baptist Church. I had not thought to take these photos so I'm glad she did! This is a another church building that we are renting for the time being until we are able to get our own building ready. Please pray with us that we can get into our own building soon. We are limited as to the times of our services, etc at this building and it would be a blessing to get into our own "home".

Josiah and I are working on getting the preaching on video to be able to upload them to the Internet. Since we rent this building we have to set up and take down every service.

Josiah also gets to play piano for the congregation on Sunday nights.

Pastor Matt Manney... and Truett....no Truett was not up there helping him preach! This was before service. We praise the Lord for the work that is being done, the lives that have already been changed by God's saving power, and pray for more people to come and hear the Gospel!

Daddy and Mommy enjoying our little girl - she sure loves her Daddy - see how she looks at him!?!

Great GramMa with her little name sake!

Jay is such a good big brother! He was so gentle with her (and no - I did not let him walk around like this - he just wanted to try). Haddie just was not very happy at the moment.

This was the night GramMa came - notice Haddie's pants? Both of their middle names are "Love" so I thought they were perfect for the occasion.

I don't know why this is turned - Dillon has been doing better with lifting his head since he got the pool. The more he is in it the more he does this, if we go several days without getting him in he doesn't do as well.

Again - blogger? Why are you turning my photos? This was when we took GramMa back to the train station to go home.

The girls! Great GramMa, granddaughter, and great granddaughter. :o) We had a wonderful time with GramMa here and hope she can come see us again.

December!!!

This is the first attempt at taking a pair of jeans and turning it into a skirt for Haddie! I am happy with how it turned out and looking forward to making these for years to come! It is good that my kids are little because by the time the skirt will fit her in the waist the length should be long but not to her ankles.

Mommy and her Girley Girl!

This outfit was given to her by her Eco Mummu (Great Grandma) in Canada.

My husband worked very hard and made our house looking amazing for Christmas - but best of all it is a great testimony as he brought attention to what Christmas SHOULD be about....

The sign on the side says "Jesus The ONLY Way Truth Life"

For God so LOVED the World he gave his only Begotten son that whosoever believeth in Him....

...should not perish but have ever lasting life! This is why we celebrate the Baby Jesus - because he humbled himself more than our minds can comprehend to be born on our wicked sinful world and let his own creation KILL him to take our punishment! And all he wants is for us to acknowledge our sinful soul and ask for his gift of his own blood.

The star is on top of a tree about 50 feet high that Josiah climbed up.

Christmas Eve we were working together to build a manager.

Based on the cultrue of the Bible times, we tried to make this manger as realistic as we could. There were no hotels at this time. Everyone had a guest room that family would stay in when they came into town and that was called an "Inn" Since there was so many people in for the census, the guest room was taken. The animals were often kept in a short room below the house to protect them from thieves and also to use their body heat to help warm the house as people slept. It is very possible Joseph and Mary were staying in this short room below the house since the guest room was already occupied. Christmas day! Let me tell you - it is HARD to get these four ll looking good and at the camera at the same time! This was the best shot I got!

Hadassah Love's first Christmas! At her 3.5 month check up she was 11 lbs - so she is still a petite little girl - despite the chubby cheeks! Normally babies double their birth weight by 4 months - that would mean Haddie would have to gain 2 pounds in the next week! LOL

Dillon loves his little sister!

Haddie opening a gift from Great GramMa - she actually got the ribbon off all on her own!

My wonderful sweet Husband and I. (ignore Jay's head!)

He is such a little ham!

Merry Christmas and Happy New Year Everyone!

Make-a-Wish Endless Pool!

2011-11-10T22:02:00.003-05:00

Make a wish had approved Dillon for an endless pool to do therapy in. It was our desire to enclose the pool so he can use it year round instead of 3 months a year. The Lord provided the pool and the funds to do the enclosure....

We got to use the pool tonight for the first time! Amazing! God is SO GOOD to us. Dillon LOVED it! He was moving and kicking and going all around the pool on his own. With his neck ring we don't even have to hold him (we just have to be near if he coughs to make sure his head doesn't go under a little) so he can swim around the whole pool himself! I will get more pictures and videos, I just wanted to get a few from tonight!

And I'll say now - Blogger has really been upsetting me by flipping my pictures when that is not the way I uploaded them and I do not know how to switch it back....

I took these in the last few days as it was finishing up...
Filling it up....

Dillon and Daddy in the pool for the first time!

Jay going in - he was scared at first but then he had fun. He even swam for a few second without anyone holding him (his swim suit has floatation things in it)

Poor Truett was scared. As long as he was splashing Daddy, holding on to someone and holding his ball he had fun though!

We are so grateful God has provided these things for Dillon and our family to use. It was so great to see Dillon "free" in a way he can't be anywhere else. I am so excited to see if he will get stronger from his time in the pool.

Happy 2 month Haddie

2011-11-09T22:42:00.002-05:00

My beautiful Haddie girl is 2 months old today. To celebrate her I finally got her to smile for the camera. It took a while because she kept looking at it strange. Finally, with Jay's help, we got it! I love you Haddie!

You can watch it here!

Happy 2 month birthday haddie girl!

SNOW!!

2011-10-29T22:27:00.002-04:00

That's right SNOW in October! Lots of snow!

Truett, Jay and I went out this morning when it was just starting to fall then the boys went out with Daddy in the afternoon and made some snowmen. I did get pictures, they just aren't on the computer yet.

Looking forward to a good night's sleep then getting up to go to Greater Philadelphia Baptist Church. We are helping Pastor and Mrs Manney with the church plant in Clifton Heights. We have been there for a few weeks and are excited to see God working already!

http://greaterphiladelphiabaptist.com/

What a day!!

2011-10-11T18:10:00.003-04:00

What a day this has been! I couldn't let it go without documenting it in my blog!

We started today off with heading to DuPont for an ortho appointment. Dillon has been having stronger, longer seizures and crying out in pain. I have noticed he is holding his legs in weird positions sometimes too. So, naturally, I am thinking he is having pain from the hardware still in his legs from surgery 13 months ago. On the way down Dillon's pulse ox went as low as 79%. Thinking there was no way this was accurate the nurse turned off the machine and turned it back on. Suddenly he was at 100%. Weird! Ok... so the pulse ox isn't working quite right, continuing to DuPont!

Once there the doctor looked at him but didn't see any sign of pain (of course!) even though he was in a lot of pain for PT yesterday and cried out several times. So we went over for an X-ray.

His nurse took him back for the x-ray and after several minutes a nurse came out to get me and said to go on back. I was a little confused becuase I thought we were going to ortho when the x-ray was done. She then stated that Dillon was having seizures and that his nurse asked for me. I picked up the pace getting all 3 kid back with me.

On the walk back she then informed me they called a code on him. "WHAT? Why did you do that?" I asked. I get into the room and start saying "We know the pulse ox isn't working right!" over and over again as I put him on my lap to see what was going on. His oxygen was in the high 80's which is a little low but not CODE BLUE low! So I started to figure out what happened. Apparently he was at 95 so the nurse took him off for the X-ray but then saw his tongue was dark. (She had never seen this before, I have seen this even when his oxygen is high 90's) so that concerned her and she put the pulse ox back on and it read 77. Even though she knew it had been acting up there was the chance it was right, so she sat him up and he started coughing up lots of secretions. She was asking the x-ray tech to give her the suction machine, etc. They asked her if she needed help. Thinking they meant more oxygen and/or getting me she said "Uhhh sure" Next thing you know the loud speaker is say

"CODE BLUE ORTHOPEDICS RADIOLOGY"

A moment later there are 20 people trying to cram into this tiny little x-ray room! The main doctor came in sat down beside me (I was still holding Dillon) and start talking to me. He was asking what was going on, what his baseline is, he even introduced himself to Dillon! He sat beside me the whole time, calm and relaxed. They listen to me as I explained what the issue was with the pulse ox. Nurses were listening to him and checking his capularily refills but no one was going crazy. Finally the doctor started yelling out the hallway to everyone else to calm down, it is ok, we aren't going to be doing CPR, everything's ok, etc. I asked them to compare my pulse ox to theirs and sure enough mine was reading 3-5% lower the entire time - which makes a huge difference. So even if Dillon did drop (which I think he did until he coughed up a plug) he probably was not as low as it seemed.

The doctor then started to explain that normally the patient is sent to the ER and I said "Oh, please, don't" and he quickly finished with that he looks fine, I seem comfortable with him, so he would let me make that call. He said "Well I have never released a patient from a code blue to the waiting room, but go ahead." :o) He also asked me if I have medical training, I said No I'm a Mom. I told him I could be a nurse if only colleges give credit for life experience! He said they should hire me on the ICU. :o) One of the other doctor said I looked familiar, she used to work at CHOP in the ICU/Pulm floor so she probably met us there.

After some laughs and being thankful everything was good, we went back to ortho. The ortho doc said his hips look ok so it may be intermittent pain, but to just press on. If he cries out in the stander, keep him in, if he cries out during range of motion, give him some time then continue. I'm sure this is because the doctor knows these kids will learn they have a way to get out of what they don't like and will do it every time from then on. Dillon would totally be able to provoke seizures if it meant he got out of standing, or learn that yelling gets him out. So we have to keep going to help him get the necessary benefits from the stander.

WHAT A DAY! They LITERALLY called a CODE BLUE! wow! I'm just thankful he is ok. We got a new pulse ox machine already today and are planning to buy a finger spot check pulse ox so we will have something to compare to if this ever happens again. All in all it was a "good experience" the doctors listened to me, they stayed calm, they didn't over react. It went as good as it could have possibly gone, but I am glad to be home editing pictures on picnik instead of sitting in an ICU room tonight!

3 weeks already?

2011-10-01T20:04:00.002-04:00

I can't believe my little girl is already 3 weeks old. I have taken quite a few pictures, had lots of kisses and even more snuggles with her in these last 3 weeks.

Haddie is alert for much longer periods of time now. When she is awake I try to give her something to look at like Dillon's light box, high contrast pictures, or color pictures with a black background. She seems to enjoy it!

Today I put her on her belly and she rolled to her back! I'm quite sure it was by accident, but that's ok it is still good practice.

All but the last two nights, Haddie has been sleeping about 5-6 hours at night. The last two nights she has only gone 3 hours, maybe she is getting ready for her one month growth spurt...? She is still so tiny and petite! Although I must admit Haddie seems to be getting a little double chin and a nice round belly! Her face shape and the double chin remind me the most of Jay! I think they will look the most alike.

Today was a busy day. Josiah had to get up around 4am to do some work on the computer then went to a men's book study at church while I got all for little people up and going. Then he did some yard work. To give him time to do some school, I had him teach me how to use the riding mower. Well, I mowed the yard, and he didn't get any work done because, imagine that, 4 kids take up your full attention! LOL Then we went to Clifton Heights to hand out fliers for the new church. I don't know how many we got out but we were out for about an hour. Jay pushed Truett in the stroller and ran up to many of the doors to give them a flier. I had Hadassah in my sling and Daddy pushed Dillon. Then the men prayed for the ministry at the church and we came home. The boys are in bed early since we have to leave tomorrow morning about 7am to get to church in time. Haddie is acting like she hasn't had food in hours (its been about 30 minutes!) and Josiah is working on school. I guess that leaves me with needing to get off the computer and go do some house work and prepare everything I can to make getting ready in the morning as easy as possible....

Haddie's first week!

2011-09-16T22:33:00.012-04:00

Waiting for Baby to make his/her arrival
Right after Hadassah was born!

Daddy and his little girl!

Jay's first time holding his little sister
Truett trying to explore his little sister
Grandpa S holding Haddie for the first time
Grandma S holding her
Daddy, Mommy, and our little girl!
Our first family picture with our whole family!
Grandpa and Grandma K's meeting their first granddaughter!
Dillon and his little sister
Jay holding HIS baby
Getting dressed in her take home outfit

They MADE me leave in a wheelchair because our car seat was not a carrier.
The car seat Daddy got for Haddie
Helping Truett with Haddie

Welcome Home Haddie!
The hand prints are of each of the family members here for her birth and when we brought her home. Dillon, JayDonn, Truett, Grandpa and Grandma S, Grandpa and Grandma K, Uncle Ezra and Aunt Gina, Uncle Dan and Miss Evelyn, Aunty Hannah, and of course later Daddy and Mommy added ours.

Aunt Gina sharing Haddie with Jay.
Snuggle time
Haddie's rose! At our church they have the fathers come up and get a rose and tell the church the names and ages of the other children then all the stats on the new baby. We got a blue ribbon with Truett and this time got a rose with a PINK ribbon!

Everyone on the Kuenzi side (don't know why blogger turned it)
Schnarr side
Aunt Hannah made Haddie her first skirt!
Truett holding Haddie in the little bed we made her for downstairs
Kissing her....AGAIN!

Jay helping with her sponge bath
Truett helped too - he made sure the floor was good and soaked.

alcohol for her cord (my doctor said he is old school and still likes to use it - it isn't going to hurt anything so why not)
Can you guess who bought her this shirt? "Grandma loves me"
Daddy and Mommy went out for dinner before Grandpa and Granda leave, so of course she is the only one who got to come with us.
Haddie's hand in Dillons
Haddie's hand in mine
Jay and his beloved little sister

Seriously, can one have too many pictures?????
I love this one! Dillon loves having her lay with him

Haddie with one of Dillon's nurses
Grandpa and Grandma bought Jay a skate board, he did very well with it.

Haddie has had a fun first week. She slept 5 hours in a row the first few nights then was sleeping 3 hours during the night. She has gone shopping, to Dillon's acupuncture, the doctor (at her first visit she was 6lb 2oz), out to eat and lots of other things.

We are enjoying our precious little gift from God.

It's a GIRL!

2011-09-10T03:37:00.004-04:00

(Sorry I wrote this Friday night - but just saw that it didn't post!!!)

Psalm 37:4 Delight thyself also in the LORD; and he shall give thee the desires of thine heart.

We would like to announce the arrival of

Hadassah Love Kuenzi

Born September 9, 2011

At 12:07pm

Weighing 6lb 7oz

Length 19in

Head circum 13 1/4

at Paoli Hospital with Dr. Anne Bussard

Hadassah Love - our little girl! We fell in love with you the moment we saw you. Your Daddy is totally smitten with you and has already said he is going to have to be careful not to spoil you too much so that you will grow up to be a godly young lady. Your big brother Jay is also smitten by you! This letter is to you Haddie, so you will know why Dad and Mom choose your name.

Before we were married, Mom was reading the book of Esther in her devotions and saw that in Esther 2:7 Queen Esther's Hebrew name was Hadassah. Mom called Dad and told him about the name. At first he wasn't sure of it, but the next time we talked he had changed his mind and he did like it. So before we married we both liked the name Hadassah - if we ever had a girl. We have waited through your three big brothers to finally get to name a little girl!

Queen Esther is a woman we would challenge you to be like. She had boldness, but grace. She was outspoken, yet respectful. She took a stand for what was right, although putting her own life at risk. Queen Esther knew the power of God, but she also knew the power of prayer and fasting. She was faithful to God, she was faithful to her people, but she was also faithful to her husband. Hadassah means myrtle flower which is sweetness. Queen Esther lived her life in a way that was a sweet savor to Almighty God. Haddie, we want you to grow up to be a woman who will follow God, do whatever He asks of you, and remember that God created you for "such a time as this".

The middle name Love is from your Great Grandma Schnarr. When she married, she took her maiden name as a middle name since she was not given one at birth. Great Grandma Schnarr is also someone we would challenge you to be like. She is an example of a proverbs 31 woman. She faithfully stood by her husband and supported him through their ministries. She loved poeple, even the people who opposed her husband. She helped Grandpa as he Pastored church, was a missionary, and even when he was a painter/paperhanger. Great Gramma is sweet and strong at the same time. While Mom was pregnant with you, Great Grandpa went Home to Heaven after fighting horribly painful cancer. Great Gramma stood by him every step of the way and is now going on without her husband of 52 years, trusting God every step of the way. Great Granma was a big part of your Mom's life when she was growing up and taught her many things. They shared a love for ice cream and other sweet things, but also a love of spending time together. Great Gramma would come to every important school event, take Mom to church sometimes, played games with her, rubbed her hands and feet at night as they sat together watching a movie or TV. Great Gramma is also a prayer warrior and prayed for Mom to be saved, until one day at 18 she finally did see her need for salvation and trust Jesus Christ as the only way to have her sins forgiven. Great Gramma's influence has made a difference in Mom's life and that is why we wanted to remind you of her by the middle name of Love.

We love you little Haddie, and although we will not be perfect parents we will try to raise you to remember to serve God first with your life and to always look to him for direction and wisdom just like Queen Esther did.

Love,

Daddy and Mommy

Birth story:

Thursday I saw the doctor again and for two weeks waqs 5cm and 80%. We had decided not to induce, because we wanted to let you grow if you still needed to. After my appointment (I think the Dr did something to try to jump start labor) I was miserable. I was having contractions more often, but not regular. My stomach was sore, and you were as active as ever. The next morning Daddy had to go to work early and the nurse (Miss Jeniffer) came at 8 so we could attend the first MOMS meeting at church. Jay, Truett and I sat down to eat some cereal I noticed my contractions were coming pretty regular so I started to time them. After 6 in a row about 4 minutes apart I called Daddy at work and asked him to come home. I also called a friend, Stacey, from church and asked if she could come sit with the boys. We left for the hosptial shortly after. We arrived around 9:30am, just over an hour from my first contraction. The contractions were still pretty light at this point. They got me in the room and all hooked up and said I was about 6cm and within 30 minutes they broke my water. They checked me again and I was 7cm then the next check - after the contractions were very painful I was almost ready. Several more minutes went by and they brought in the chart with all the supplies and the bright light and all and I kjnew it was almost time! The doctor came in and I pushed through two contractions. Then one more push as I helped lift you up to my chest! (You were the only one I got to do this with) You were laying with your tummy to mine and we didn't know who you were for a few moments. Then as we turn you Daddy and I both saw and said "Its a GIRL!" You were born at 12:07, with just under 4 hours of labor.

We adore you! We helped to dress you after your first bath in your little pink outfit with pink socks and a pink head band! It is so weird to say "she" and "her" I called you "buddy" and then realized - you're not a buddy! :o)

No Baby Yet

2011-09-06T23:03:00.003-04:00

Hi Everyone,

I know people keep checking to see if there is a baby yet, so I just thought I would tell you that we are STILL waiting! I am 39 weeks 3days... which is 5 days longer than I have ever been pregnant before!
I really don't know what this lil one is up too or when he/she will decide to stop hiding in the my nice quiet safe belly and come meet his/her older brothers...but I'll let you know when the time comes.

Thank you for continuing to pray for a safe healthy Baby and a safe healthy Mommy.

Every day Jays tells the Baby to come after dinner. One of these days he is bound to be right! Although instead of thinking that is is about to happen at any moment I find myself thinking that this baby is never going to come! I have to remind myself now that it REALLY WILL happen pretty soon!

I'm a mess! :o)

39 weeks!

2011-09-03T09:44:00.002-04:00

I am 39 weeks today! I have never been 39 weeks pregnant before!

This baby seems to be taking his/her good ole time! On Thursday the doctor said I was 4-5cm and 80%. At 39 weeks the doctor was willing to induce and we were thinking of doing it. josiah's first answer to me was, are you sure this is safe for the baby? Are you sure there is no risk to the baby? Mom K and I stopped and prayed for wisdom in knowing what we should do as I started to research it. At first I was reading all minor, rare side effects to the Mom and I was sure we could do it. Then we prayed again and I started finding the side effects to the baby. Josiah and I then decided against being induced for now at least. I already have precipitous labor which means my labors are less than 3 hours and the contractions are stronger, longer, and closer together than normal. Pitocin makes them even stronger, longer and closer yet.

I had pitocin with Jay's birth b/c my water broke and 8 hours later I still was not having any contractions, but he was born with his face as gray as gray could be. But it all made sense as I was reading about pitocin it said that when you have contractions the blood (and therefore oxygen) supply to the baby is cut off. So when I had almost back to back contractions with only extremely short breaks in between for 30-45 minutes so it would have been decreasing the blood and oxygen supply off for most of the labor time. I read a lot about how women are given pitocin then later the baby goes into distress and then they need a c-section and the doctors say "wow, we saved that Mom/Baby" but the truth is the baby went into distress only because of the extra stress from the pitocin which was given often just because the labor was taking longer than the doctors wanted.

We decided it was not worth any risk to the baby to try inducing him/her early. We are going to wait a little longer and see what happens. This baby is only about 6 pounds so maybe he/she needs more time to grow and get stronger. If it is necessary to start my labor at some point that will be different, but we see no reason to try to induce - risk any possible harm to the baby - for our convenience.

This just means we have to trust God to work out the details of when this precious little one arrives. We don't have family here the whole time so working everything out so we will have someone to care for the other 3 kids so we can quick run to the hospital. Mom K is planning to leave sometime between the 4-6 depending on her back (she hurt it while trying to pick Jay up and is not able to sit/walk very well - please pray for a quick full recovery for her). My parents will be coming the 9th, if the baby is born already. Otherwise it will be the 10 or 11 until other family arrives.

So we are waiting, waiting, waiting......

I can't wait to see if I have a fourth little man or a little lady!

Our 6th Anniversary

2011-08-24T16:03:00.006-04:00

Josiah and I celebrated 6 years of wonderful marriage on August 20! I am so blessed to be married to Josiah! I love you Dear and am so thankful God brought us together. As you sang to me on our wedding day, "Only God could love you more!"

The boys playing dress up

My tiger

and my lil skunk

Josiah went out and bought me roses Saturday morning!

i don't know how this one turned out like this but I love it!

I never took pictures of my engagement and/or wedding ring with flowers so I thought I would do it this time.

Josiah had to work for several hours in the morning/afternoon but then we went to a park to take some family pictures

Our family - who would have thought six years ago that we would be sitting here with three wonderful little boys and another child on the way

Dillon and his youngest sibling

Jay kissing the baby

Truett is a BIG brother? Wow that is crazy, he is still a baby himself!

Family! Thank you Lord for my wonderful family - I love them all so much!

Grandma and her boys

Brotherly love! Jay hugging Truett and Truett looking at (and sometimes kissing) Dillon

37 weeks with Baby #4! I can't wait to meet him/her - but I'm glad he/she waited till after our anniversary! :o)

Daddy kissing our sweet lil one!

I love my husby!!

Walking to the car

Our back seat. Here soon there will be another car seat where Grandma is sitting

Grandma and her favorite 5 year old!

Josiah being silly right before we went out for dinner. Mom watched the boys so we could enjoy a dinner out alone. Thank you Mom!

Lighthouse and Beach

2011-08-13T11:01:00.006-04:00

Last weekend we went to a light house and the beach with the boys. these pictures are in the wrong order, but it wasn't worth the time it would take to change them all around! :o)

Daddy and Truett after cleaning all the sand off of him

Here's all that sand....

Dillon LOVED the water. He was actually standing mostly on his own. All Josiah had to do was hold his head and shoulder. Sweet boy!

Mommy and her boys!

Isn't he adorable?!

Daddy and Jay going to the water!

I love this picture of Dillon! He was enjoying the breeze, wind, smells, etc.

Josiah is the best Daddy! He had to DRAG Dillon's HEAVY chair all the way to the water and back. It was a lot of hard work, but he did it so Dillon could enjoy it too.

We actually did the light house first, but again these pictures are reverse too.

The view...

Josiah went up afterwards, by himself b/c Jay wouldn't go up again. We had planned for Jay to come with me and then with him...

Dillon was there, but of course he didn't get to go up

The light and reflectors

I didn't say it was the smartest thing for me to do - but I did go up. I didn't know it had 228 steps to get up! I was so tired and my legs hurt so bad the next few days that I could hardly walk! No more lighthouses for me - at least not till this baby isn't in my belly anymore!

Once he was up, Jay LOVED it! he was running around the outside and enjoying the breeze and the view!

The only problem was the 228 steps! He was terrified! the steps had grates and I think he thought he would fall through them. At every landing he would go up against the side and not move. I had to carry him up a few steps to get him to start walking again. It was horrible!

This was at the bottom before he realized he was terrified! :o)

Last weekend

Baby #4 updates

2011-08-13T10:53:00.005-04:00

34 Weeks pregnant with Baby #4

I know my shirt looks silly, but I love how this skirt shows my belly just jumping out!

At my 35 week check up with the doctor I measured a week behind so they sent me for an ultrasound to make sure everything is good with Baby.

here is what they found:

Baby is a tiny Baby at only 5lb 1oz and in the 22% (normally babies at almost 36 weeks are about 6 lbs) His/her head is 31 cm (which is the 6%!) and most babies at birth are 33-35cm. This could make my already fast labors even faster! IKES! Please pray for a safe and healthy Baby, delivery and that Josiah would be there 9not at work).

Baby #4's profile. His/Her face is up against the placenta so that is what you see in front of his/her nose and mouth.

Thank you for praying for us as this Baby will probably be born within the next 2 weeks. Again my labors are fast (Truett was 2 1/2 hours) so please just pray that even if this Baby comes in the car that Josiah would be with me and that everyone will be healthy!

Will keep you updated as anything happens!

Truett's Toddler bed

2011-08-05T21:04:00.003-04:00

The day we took Dillon down to CHOP's ER we put the boys down for a quick 10 minute nap. Thankfully that is all they were in there for instead of a few hours like normal! Josiah went in and said Truett's leg was stuck through the crib again and this time it was purple! I decided it was time for him to move to a Toddler bed before it loses a leg! I wanted to make the change right away so he will be used to it before the baby comes.

He LOVED his new bed! (This is one I trashed picked - cleaned up and added one bracket to the side rail!)

Going to sleep for the first time...

I checked on him one time and this is what I found...

Then later I found this....

He has done very well with it. I have had to teach him during nap time not to get up and play, but he is getting MUCH better. He has rolled out a few times in the night but I just kiss him and put him back in and he goes right back to sleep. He LOVES waking up in the morning and being able to play with Jay in their room till it is time to get up. In fact I think they were up around 5:30-6:00 this morning! (yes I had some tired cranky boys on my hands today)

The only other thing we are still working on learning is that blankie stays in the bed and does NOT come down with him! He laughs at me every time because he knows he isn't supposed to have it!

Make-a-Wish

2011-08-05T20:48:00.003-04:00

Make a wish approved Dillon for a therapy pool. We had never heard of Endless Pools before they told us about it so we decided it would be the best "wish" for Dillon since he enjoys aqua therapy so much. At first they wanted us to go on a Disney vacation, but that would not be for Dillon. We first started talking with them almost 3 years ago and it is finally happening!

Here is our backyard before...

Day 1

Day 2

Day 3

Day 4

The pool should go in on Monday-Wed then 2 more days of cement work. Make a wish provided the pool, and we are waiting for approval for the funds to do an enclosure around it so he can use it YEAR ROUND! What a blessing! I can't wait to use it with him as often as we can - in our own back yard! The pool is 7 feet by 14 feet. It is not a swimming pool, but it is great for therapy. It has a current that will allow us the same movement without need a huge pool!

Adenovirus

2011-08-05T20:40:00.002-04:00

About 8 days after Dillon came down with adenovirus, Jay sat down at lunch and said "I'm not hungry." I felt his head and sure enough he was feverish. Over the next several days his fever would go up and down. At one point it went up to 104.7! The problem was it would be staying low enough to not medicate then all of a sudden jump up! Jay didn't want to drink anything becuase he said everything tasted like tomatoes. It was like pulling teeth to get him to drink. I was exhausted! At one point I fell asleep on the sofa next to him holding his cup of chocolate milk! (No, I didn't spill it, thankfully!)

About 6 days later Truett started running fevers, but he loves to drink so his fevers only went to 102. Truett was over it in about 3 days.

Dillon had another fever after we thought he was over it then it was done. Josiah, however, came down with pink eye in both eyes, just like Dillon had. His eyes are STILL bright red!

Praise the Lord - I did not get sick! We had a lot of people praying and for this I am thankful because with all the times my face was coughed in by Dillon, the slobbery kisses from Truett and Jay coughing or just being close - I should have come down with it.

Dr. Gleman said it is transferred by secretions so we think Dillon got it from school. Possibly because the teachers kiss all 11 medically fragile, drooling, coughing kids on the cheek one after another. I have asked the teachers not to do this again so hopefully he won't get another horrible virus. He missed 3 of the 5 weeks of summer school because of this virus. He wills tart again August 30, hopefully we can see how he does at school this time if he actually goes! :o)

I am SO glad this virus is gone! Dillon is almost back to normal with his oxygen, he is still needing a little more than before the virus but at least he is better.

At CHOP

2011-07-18T08:38:00.002-04:00

Friday night Dillon was resting on his belly, Daddy, JayDonn and Truett were sitting together and sore pregnant Mommy took a bath. After I got out of the bath I went to check on Dillon and he was burning up! The nurse had just arrived for the night so I guessed his fever was about 102 and asked him to check it. Sure enough it was 102! Saturday was not a good day either. I left Dillon on CPAP for most of the day because his heart rate was so high. He kept running fevers too. I was trying to let him body fight whatever it is as long as it stayed below 101. I also held back some of his food for fear he would aspirate it.
Saturday night into Sunday the nurse called me because his secretions were tinged pink. I am pretty sure he had been coughing so hard and we had to suction so much his throat bled a little. He did vomit some for the nurse too. Then about 5:30am the nurse called me again. Dillon heart rate was 180-200, his fever was up to 102 again, and he was coughing like crazy. I held him and tried to calm him down. I stayed home from church while Josiah took the other two boys. Dillon's Tylenol and robinol kicked in and he calmed down.
He was quiet for a couple hours, then it all started again. His fever was back up to 102, coughing non stop, heart rate 180-210, moaning and groaning. I had given 200ml of water slowly by gravity and he did ok with that, but when I gave 60ml of formula over an hour or more he started vomiting. He had not had a bowel movement in 3 days so when he started vomiting up dark dark brown stuff I talked with my mother in law (my own personal nurse consultant!) she suggested we take him in to the ER to make sure there was not a blockage.
A sweet friend from church (the one who watched them for my birthday) has been telling me for almost a year to let her help me with the boys. She has 4 boys herself and can understand how much it is to juggle everyone. So she was the first one I thought to call for the other boys. We took Jay and Truett with an overnight bag to church to meet her there and then headed down to the ER.
We arrived around 5:45p,m and checked in. We told them he was not in respiratory distress and explained what was going on. The receptionist told us to have a seat but the nurse standing there said ummm no we need to move them up, walked over and took us right into triage. While we were still going over everything they already came in to bring him to his room. We went right back and everything started. After getting some history, the resident asked me "Are you a medical person?" I laughed and said "No, I'm a Mom." He replied that I seem to know a lot and that he would gather all the medicine info from me since I know about it and said some parents don't know their child's care that well. (I don't understand that, but that is a soap box I won't get on right now!)

They pulled fluid out of his belly and confirmed it was BLOOD! They didn't know where the blood was coming from but think it could be from the stress of coughing. They said they probably won't look into it more because that would be invasive. They will just watch and make sure it doesn't look like an ulcer or something.
They decided to start and IV and get some blood (of course). Normally Dillon is a very hard stick and even the IV team has had trouble in the past. I prayed with Dillon before they came in and posted it to facebook so others could pray too. The nurse was able to get it on the FIRST stick! It could several minutes for the blood to drip out to get the amount the needed. They got everything the needed and started the IV fluids.
They also deep suctioned to get a culture from his nose, the straight cathed him to get a urine culture, Xrayed his bowels and his chest, and I think that's it! :o) That's enough anyways!

The Xray of his bowels should there was not a blockage, but there is calcification from his constant constipation problems of stuff that never came out.

They told us the Chest X-ray was "very concerning" that his lungs are filled with "stuff" I asked, "by stuff do you mean fluid?" He said the radiologist wasn't sure what it was. It wasn't pneumonia like he had always had and the "stuff" was all in the center of his chest near his heart. They said they were assuming it was a different type of bacterial pneumonia and wanted to hit it with a strong antibiotic then send him to the PICU. Again, I posted to facebook what was going on and asked everyone to pray. Family and friends got their churches praying and their family and friends praying.

Around 1 am we got up to the PICU. Josiah finally went home a little after. The doctor here on the floor then told me that she compared the Xray to a healthy lung Xray from around the time of his surgery last Sept and think it looks very similar to that. She said she does not think it is bacterial and is not going to do an antibiotic. She thinks his lungs just always look that way - everyone's lungs have a different look. And I wouldn't be surprised if his lungs do look different because of his history of pneumonia. So she said if he did well during the night we will talk about when we can go home! She also said the 3rd day (Monday) of a virus is often the worse so he is in the right place in case he has problems. I think he actually had this most of Friday and Saturday and that yesterday was his 3rd day!

Last night they had him on CPAP like he is at home and was able to take off the oxygen with it. He is still on CPAP for now but they should be taking him off soon. They checked his stomach content and there is still blood but not as much and since he hasn't had anything to flush it out with they aren't worried. They started his 9am feed. His heart rate is down to the 115-130 again. He did not have a fever through the night. They will be making rounds on him soon and I will find out more of the plan of action from here.

I spoke with Jay this morning and he is having a great time playing with the people he stayed with. He saw the have a pool and trampoline and sandbox and is just excited. He told Daddy yesterday that he is "happy we are taking Dillon tot he hospital, but he will miss us." He asked Daddy how long he would be staying with them and Daddy told him maybe a couple of days and he was okay with that. He is so mature for four years old. He understood that Dillon needed to go and that he would have more fun going to our friend's house than he would coming here with us. He said he would pray for Dillon. My little boy is much more a little man than I think sometimes. Truett is fine of course since he has his big brother to play with. She is going to keep today, and take them with her to VBS tonight (Jay's first VBS) then we will get them from her tomorrow. Thank you Lord for great friends who are willing to help out in such a way! It is hard for me not to see them, but this is best. It is much more fun for them and much less stressful for me! Thank you Angie!!!

All I can say is Thank you for praying and that prayer works! God hears His people and answers! There is no good explanation for why 1 radiologist, 1 attending doctor, and 1 resident all looked at his Xray and were concerned and then another Doctor looked at it and said he is ok. I believe God is healing my little man thanks to everyone taking him to God in prayer. I think we will get to go home tomorrow if he continues to do well. Please keep praying for him!

Pampered Chef Catalog ONLY party

2011-07-14T07:23:00.002-04:00

Hi Everyone!
I went to a Pampered Chef party this week and saw there are quite a few items I would really like to get. I am learning slowly in life that quality really is worth spending a little more! So I decided to have a catalog only party!

If you have been wanting something from Pampered Chef or would like to look through the catalog please go to this site by CLICKING HERE. If you go to "Shop Online" please make sure you see my name on the right side as the Host. Anything you order would go towards my party then!

Thank you so much! Let's face it a lot of people reading my blogs are Moms - busy Mom and are probably like me and would appreciate things that make our life easier. One of the items I really want is the Deep Covered Baker! My friend who had the Pampered Chef party says she puts 3 raw chicken breasts in it with a little olive oil and microwaves it for 5 minutes and the chicken is done and tastes good! you can also bake things in a lot less time with it! Definitely something that would save me time and help when I lose track of time to still get dinner on the table before church!

I hope you can find something that will make cooking even more fun and easy!

Vacation Pictures

2011-07-08T19:17:00.009-04:00

Vacation pictures!

Truett with Great Grandma K

Mom has a picture of Josiah just like this.... I guess boys love an open fridge

4 Generations (I'm only in this one to get the baby in there with them!)

Putt Putt with Great Grandma

LET ME OUT!!! I want to come play too! (Truett's face pressed up against the screen door)

Aunty Hannah out on the blow up boat on the morning of Jay's birthday.

Josiah relaxing on the boat

Jay waiting in the window for Grandpa and Grandma S to arrive

waiting....

Truett's big smile (that's because he is so hyper on sugar!) LOL

Jay's cake! I had asked him before what type of cake he wanted and he said cookie cake. Grandma saw a way to make a train cake so we asked which one he wanted.... NEVER ask a question like that! The answer : A cookie train cake! Of course! Why didn't I think of that! So this is what we came up with....

My birthday boy!

I can't believe it was four years ago that he was born. The moment he was born he let out this hardy scream... Josiah and I both started crying and saying "He's crying! He's crying!" Since he was born so fast they literally pulled a doctor in from the hallway to deliver him that we had never met so she knew nothing of our history with Dillon. She was looking at us a little strange when we were so happy to hear him cry!

Truett bragged an apple from the cooler and walked around eating it! It was so cute

Jay feeding the ducks

Grandpa S and Truett
Grandma S, Mommy and Truett - I think we were looking at the ducks here. Truett LOVED watching the ducks swim beside the boat
Grandma S and Dillon
Jay helping Grandpa S drive the boat
Swimming! We decided not to put Dillon in since he had a hard week and it wasn't worth upsetting him. Jay was scared to death. Truett was a little scared but would calm down and enjoy it a little. Grandpa K got in for a few seconds and that was enough for him. Grandma K is scared of water and didn't go in, but the rest of us enjoyed swimming!
Dillon with my sunglasses on

Mommy and Truett

I don't know why this is flipped, but if you look right in the middle you can see the bald eagle! It was so cool to see a bald eagle in the wild!
Dillon loved the boat ride, his stats were the best that they were the whole vacation while we were driving around and he could feel the breeze and the vibration! Truett and Dillon enjoyed a nap!
I think this one is Josiah out on the inter tube
Me
My Mom
My Dad

Dillon's first days of School

2011-07-08T18:59:00.005-04:00

Dillon's first day!

Sitting with all his supplies waiting for the bus to come. This is what he has to have with him every day. This does not include the nurse's stuff and her lunch bag!

Our little boy is growing up!!!

Don't let the smiles fool you, we were both sad to see him get on the bus!

The big boy!

Here's the bus!

Being strapped in, just like in our van

They're taking my baby away!!!!!!!!!!!!

He actually did very well on his first day. He could do his stander or get his PT or OT because of paperwork not being done on time, but he didn't get upset of have seizures or anything. The night before he left I kept whispering to him that if he did horrible he would get to stay home with me.... I don't think he wants to!

Jay was sad that he didn't get to see Dillon get on the bus since he was still sleeping so he asked me to wake him up from his nap so he could see Dillon get off the bus. I told him he would have to go to bed early if he wanted me to do that. Normally he goes to sleep around 2 and Dillon was due to be home around 3:30. So right after lunch, about 12:30, he willingly went to bed. We waited outside for the bus to come....

While we waited he kissed the baby - I don't know why I look HUGE in this picture, I'm really not THAT big!!
Jay was so happy to see Dillon come home!

Dillon's second day went well too. He was cooing during circle time and during the tactile time. His nurse is so sweet and sends me one or two messages during the day to let me know how he is doing so I won't worry. Maybe he has an independent streak in him like my other two and likes to finally do something on his own! I don't know but so far he seems to enjoy it. It will be interesting to see if he likes it once his therapies start and they make him "work!" He won't be able to go on Tuesday because he has a neurology appointment that has been scheduled for about 8 months!

Thank you everyone for praying for me. It wasn't as hard as I thought it would be so I know people were praying for me! I had a peace that I didn't think I would have. It was weird without him but I was okay. I am dealing with mixed feelings about it. I enjoyed having the time to talk more with Jay (normally I talk a lot with the nurse so he got my full attention) but I feel bad about liking the time without him. I know Jay feels the same confusion as I do from things he has said. Even though he hasn't voiced it in this way I can tell he is feeling it. The second day he was excited to get Dillon off the bus again because, as he said, "I love Dillon!"

4th of July!

2011-07-08T18:48:00.004-04:00

Happy 4th of July (ok I'm late but these are our pictures!)

I already updated with what we did so these are the pictures....

Truett's first time seeing fireworks... He wasn't scared at all - he loved them!

He would blink every time they made the loud BANG but he wasn't upset he was laughing!

Dillon stayed in the car seat in the truck but with his window down and facing the fireworks. He slept through it all!

"School" on Tuesday!

2011-07-04T22:49:00.003-04:00

Tuesday July 5, Dillon gets picked up at 7:45am for his first day at Easter Seals Classroom A. I need lots of prayer! I really don't want him to go. Everyone keeps saying it is because I "have too much on my plate" or that it is a "break you need" etc. No one is telling me they think DILLON will benefit so I am not confident this is a good choice. He is going every Tuesday and Thursday for the next 5 weeks, with his nurse from home going with him. He won't come home until 3-3:30pm!!!! That is a long day! Especially for someone like Dillon who shuts down after 45 minutes of therapy!!!

Please pray Dillon will be ok and that I will be ok. I haven't been without him like this ever before and I feel like I am "just sending him away" since that is what everyone keeps saying to me. If I thought he were going to benefit and learn and improve there it would be different, but I think everyone wants this for ME not HIM.

I just need God to calm my heart and help me to give this a chance. I also need it to be clear at the end of the 5 weeks if this is something we should continue with next year or if it is better to have him home. I know I WANT him home more than anything, especially since I will be homeschooling the other kids, but I need the data to back me up on it so it isn't just an emotional decision. OR I need the data to show that he is doing great at school and it really is benefiting HIM to continuing going.

My heart is a mess already - I just need to rest in God tonight and tomorrow.....

I'll let you know tomorrow how it went.

Catch up without pictures

2011-07-04T19:17:00.004-04:00

Let's see here, catching up on all the happenings! I left my camera in the van which is in the shop so I will do a quick catch up and then do pictures later.

My 26th Birthday (June 22)! Josiah planned for a sweet dear lady from church to come over Tuesday night (since we have church on Wed) and watch the boys for us. We went out to Cheesecake Factory and sat outside. I decided even though it was a little warm I wanted to sit out side because that is something Dillon wouldn't handle well and normally we wouldn't be able to do it. We were right by the door too so every time the waiters went in and out we got a gust of cool air. Then we got a piece of pina colada cheesecake to go. We drove around on the back roads and finally ended up at a retreat that Josiah thought was bigger than it was, but it was pretty and quiet. We walked some of the trails until I was too tired then we took our time driving back. For some reason there were a lot of songs on that night on the radio that talked about being lame. I had never heard this one before and it brought tears to my eyes. Click here to listen to it: Slippers with Wings Although my presents didn't come on my birthday Josiah did get me several things. First - he got me a prepaid phone for when Dillon starts at Easter Seals. It is only to be used for emergencies with Dillon so only Josiah and the two day nurses have the number, but at least if he aspirates and needs to be brought home they can reach me no matter where I am. Second and Third - he got me two games. One is a card game called Discipleship plus and the other is a board game called Decalogue about the 10 commandments. Fourth - he got me the new Bible cover I have been wanting. It is an organizer Bible cover, I love it! I love to write in my Bible so it is great. It even has a place to store my pens and I have a very important pen in there... Right before my Grandpa went Home to Glory he gave me one of his special Bible marking pens that even has his named on a tiny piece of paper taped to the side of it. Every time I open my Bible cover, I see that pen and I think of my Grandpa and want to make sure I am living my life to make him pleased. Here is a link for what the Bible cover is like (except the inside of mine is pink) in case you are looking for one, but shop around online for a better price than this site.
Approved!! Finally it was approved that we could take a nurse with us on vacation. In the five years of Dillon's life we have not been able to go on a vacation where everyone actually got to sleep! Someone always had to do his night care and then was exhausted the next day. After 4 or 5 appeals and the insurance company telling us that one of us can stay up all day and one of us all night, a third party review board finally approved 9 hours a day for the night time care so we can sleep! Praise the Lord! Of course, the insurance company sent us a letter saying just because they are doing it this time doesn't mean they will ever do it again. But I figure if the third party review board said this is the standard of care for the industry it should be easier to get it approved again in the future. Then a few days before we were to leave3, our nurse was selected for jury duty! He told the Judge what his plans were and she said don't worry about it then he was selected, and supposed to sit from Thursday-Tuesday. Well Thursday morning after being there for a few hours he found out the case settled and he was able to go with us!
Vacation! We left Saturday morning for WV. We took Josiah's truck so that we could take our bikes and a bunch of stuff. Dillon aspirated very bad on the way down. He coughed for over 30 minutes without stopping! He just hasn't been good for almost a month now, but I am having to take my inhaler and my allergy medicine a lot too so I am sure it is allergies. While we were there we went out on the river in a blow up boat (PA tried to fine us 75 for taking a blow up boat out on a lake since it wasn't titled - in WV they don't care!) We went on bike rides, etc. More to follow....
Jay's 4th Birthday! Wed was jay's birthday. We started it by going out on the blow up boat with Daddy, Mommy, Jay and Aunty Hannah (she had to work a lot while we were there so we wanted to be sure he got some time with her on his birthday!) Then my parents arrived in and spent some time with us. We started Jay's cookie train cake and went to church. After church we decorated the cookie train cake and sang and ate it! Yummy!
Boat ride! The next day we rented a large pontoon boat for 8 hours on a huge lake (about 12 miles). We spent all day out on the boat! It was beautiful! Dillon was the best out on the boat than he was the whole time! He loves the breeze and the vibration of the boat! Most of us jumped in the lake and went swimming. We had a great time. We BBQ lunch on the dock and went back out. Then we used a rope and a inter tube meant for being pulled and rode behind the boat. Since it was a pontoon boat it couldn't go fast enough to really knock anyone off, but it was fun. I only went once because with my growing belly it was hard to lay on it comfortably! Josiah had a blast! My Dad tried knocking him off and when my dad was out on it Josiah tried to knock him off!
Shooting! After the boat Josiah and I went with Hannah and her boyfriend Todd to his grandparent's house out in the boonies and shot a 22 rifle. I only shot once but the guys shot more. Hannah and I had a great time talking with his Grandma, who is hilarious!
We came home Friday - to being locked out of our house. We knew before we left that it happened but we had to call a locksmith to let us in. We had keys but it was to the door that the previous owners had trouble with too and sometimes it doesn't work. We also locked a door that we knew we didn't have a key too because we thought we would go in the other door (the one the key wasn't working to). Needless to say we got our locks all fixed.
Picnic! Saturday was a picnic with the deaf people at church. Since I am learning sign language it was neat to go. I thought it went from 11-4 but really it was 4-8 so we ended up killing time by driving around where we used to live, seeing our old houses, etc. Then we went to the picnic and had a great time, Jay got to fish a little in their pond and helped catch some. He loved it!
And that bring us to 4th of July! We stayed home today and just did things around the house, We had a small BBQ, played outside, played a board game from my birthday, and are about to do some sparklers with Jay then maybe head out to watch some fireworks in the truck someplace (or maybe we will just watch from home, not sure).

Will post pictures and videos later!

Dillon's 5th Birthday

2011-06-17T22:42:00.009-04:00

Dillon the Birthday Boy!

Yes, even on his birthday we made him do his ROM (range of motion) and his stander!

Miss Julie, his nurse, gave Dillon a T-shirt and Short set and special toothpaste that is supposed to be better for him on the ketogenic diet.

Jay helping me make Dillon's ice cream cake - of course every other minute I heard "Can I lick that now?"
We decorated the backyard so that we could have a BBQ and enjoy the beautiful - not hot - day with him.
Dillon by his table with his presents and party stuff. The cake isn't out there yet... it IS an ICE CREAM cake! :o) Daddy and Mommy got him a giant exercise ball to be used for his therapy. Jay got Dillon some glow bracelets that we had fun using once it got dark. Truett got Dillon a 4 pack of play-doh for his occupational therapy.
While I was decorating I suddenly hear this little voice... can you see him?
Here's a closer view in case you couldn't find waldo! He woke up from his nap and heard us in the back yard so instead of coming down he decided to try to carry on a conversation with us from his bedroom window.
Mommy and Dillon! I wanted a quick picture before the wind blew everything away!
I LOVE LOVE LOVE Dillon's freckles! The more he is in the sun the more he gets - just like his Mommy!
Dillon's ice cream cake! His name is written with the hot fudge that is in between each layer of ice cream. YUM YUM
Jay being goofy when Daddy got home from work.
Daddy and Truett
Mommy, Daddy and Dillon - wow has he changed in the last five years! He is HUGE now! :o) I guess that is what babies do - they grow up!
Truett was so tired so he was in bed already - so here is Daddy with his oldest two boys.
I love this picture - except for the lantern in the background. I love my Dillon Boy!
Another picture I love! I think you can see how much Dillon and Daddy look a like with this one.
Me and my Big Boy!
Snuggle time!

Love his chubby little hands. his hands and feet are chubby but that is the ONLY chub on this boy! His legs and stomach are so thin!

I tried to get a picture of the three boys after Truett woke up and it was a disaster! I couldn't get them to hold still... and look normal at the same time!

I do like this one though. Even though you can't see Truett you see them having fun and enjoying each other!

It was a good day over all. It is always emotional if I think about it - so I just don't think about it. I just rejoice in having my Dillon here for another full year and praying that God will allow us another healthy year with Dillon.

Videos:

Grandma K asked Jay to give Dillon 5 kisses for her so he did. She is still on the phone in this video in case you hear her.

Singing Happy Birthday to Dillon!

Dillon trying a taste of his ice cream cake! He didn't seem to appreciate it too much!

5 years ago...

2011-06-15T22:50:00.005-04:00

5 years ago…

June 16, 2006 was a beautiful late spring Friday morning when the young soon-to-be-Mom woke up and started getting ready for work. After her morning retinue she waddled to the car and drove the 15 minutes to work at Sherwin Williams, where she had been working for nearly two years. The manager was already there when she clocked in at 9AM and started helping customers. The store was usually slow, which was an advantage as the pregnancy was making it difficult to walk around all day and carry paint cans. The only thing out the ordinary was the unusually sharp back pain the mom was experiencing all day long. Shifting in her chair, walking around, stretching, nothing seemed to relieve the back discomfort. The midwife had told the Mom the last week that she was 2 cm dilated and moving towards having the baby in the next couple days. The Mom was taking Red Raspberry throughout the day at the midwife’s instruction to help her labor be more effective and thereby, hopefully, quicker. Since the soon-to-be-Grandparents live out of state and needed to rent a car for the trip to see the new arrival; the midwife thought it would be acceptable to start Castor oil to begin labor the next morning. After receiving all the necessary instructions on the phone the she began to get excited thinking the baby would be born in the next couple of days!

All day the manager was hoping the expectant Mom would go into labor while at work. She thought it would be so much fun to close the store down with a sign posted on the door “Sorry we’re closed! Employee went into labor – at hospital!” At 2pm when her shift was over, they were both a little disappointed that didn’t happen. Driving home from work she decided to stop at the health food store, Queens, just blocks from her house for the Castor oil. Unfortunately, they did not carry the ingestion kind. From there she went to CVS and was able to buy the proper one. She arrived home and put it in the medicine cabinet, little did she know it was about to stay in that spot for months, never to be touched again!

Around 3pm the expectant Mom felt a funny pain in her stomach. A few minutes later she felt another one. She decided to call her Mom and get her opinion on what was happening. Her Mom started timing the pains and sure enough they were coming 7 minutes apart and getting stronger and stronger. At first she was talking and walking right through them. Within a short amount of time the pain was stopping her in her tracks and she was unable to talk during them. By 4pm the Grandma suggested calling the soon-to-be-Daddy home from work. Not wanting him to miss work, they discussed if this was really necessary, but finally decided it was best to have him home, even if the birth was going to be a while. She called her husband and work and told him he should head home as soon as possible. The time was coming! She called her Mom back and continued to talk with her while Daddy drove his motorcycle home from work. By 5pm the contraction were coming every 4 minutes.

The experienced Mom told the inexperienced Mom to call the midwife. But the she was trying to follow the Midwife’s instructions – which say to wait for the contraction to be 5 minutes apart for 2 full hours before calling. The expectant Mom didn’t want to be “hyper” or “annoying” but the experienced Mom explained that the contractions were moving faster than most people’s and the call was important. With her loving husband home, they called the midwife and she said she was already at the hospital so to come on in and be checked out. Of course, the Daddy is a cool, calm sort of guy so he wasn’t rushing or scared. He decided it was finally time to pack his bags! And then he felt they would appreciate a shower before going to the hospital. So with contractions coming every 3-4 minutes they quick washed their hair and headed out the door.

About half way to the hospital the cell phone rang. It was Anne, the Mom’s best friend. She was asking the Mom if she wanted to plan to go yard selling the next morning. It was then the next contraction hit and the Mom moaned loudly and handed the phone to the driving Daddy. They laughed a little as Anne figured out yard selling was NOT going to be on the agenda for the next morning!

They continued driving and the laboring Mom was amazed at how slow her normally speed-demon husband was driving! She was thinking this was finally a GOOD time to be speeding, and yet he wasn’t! He even stopped and motioned people out in front of him! But the contractions were hurting too much to get into a discussion about it. The one way streets also caused a little frustration as the husband went the wrong way and had to circle around a second time to finally arrive at the hospital around 6pm. He sweetly dropped her off at the front door where a young lady was in a wheelchair waiting for her ride to take her home. The hospital volunteer asked her to sit on the bench instead and gave the wheelchair to the Mom who could hardly stand at this point. The midwife arrived in the lobby about the same time as the husband got back from parking the car. They started towards the elevator. The Mom reassured the Midwife that she did NOT take the castor oil as they talk about earlier in the day. They were laughing together at the timing of the whole situation.

Arriving into the midwife room on the labor and delivery floor they found the Mom was 8 cm and broke her water. The monitor showed the baby had a good heart rate and everything was going smoothly. The midwife came back in 20 minutes and found the Mom was already 10cm and should start pushing. She told the Mom the baby should be here within the next hour. They decided to go into the warm water as it was the Mom’s hope to deliver the baby in the water. She read of the more soothing effect it has for the baby making a transition from the warm womb to the loud, cold world. She also read of the pain reducer it had for the Mom since she planned to have the baby with no pain medication.

After about 30 minutes in the water the Midwife suggested getting out. It helped the pain but wasn’t helping this Mom push the baby. They went into yet another room with a bed, a birthing ball, a stool and some other supplies.

While on the bed in this room, the Mom was told they were having trouble getting the baby’s heart rate because he/she was moving too much. The Mom was reassured by the fact that in checkups they often were “chasing” the heart beat even though Mom felt no movement. She continued concentrating on labor and didn’t worry about it. After 10 minutes the midwife and two nurses said they might need to do an internal monitor to get the heartbeat. It was just then the nurse was able to get a heartbeat and everything returned to normal. Her back was still in immense pain and her supportive husband was pushing all his weight on her lower back to help with the pain. The midwife was saying it was “back labor” and that the baby was face up. The Mom was getting tired and the bright light shining in her eyes were annoying, so she closed her eyes. The midwife yelled at her “I know you hate me right now but open your eyes!” The Mom almost responded “I don’t HATE you!!” But then realized the midwife was trying to use physiology on her and help her get through it so she remained quiet but opened her eyes and kept pushing. At some point the midwife finally saw that this inexperienced Mom was trying to push in between contractions when there wasn’t as much pain. She explained this would not work and how to do it properly.

Trying many different positions that were not comfortable they finally moved to a stool. During this time the baby must have flipped because the back pain stopped and it was just normal birthing pain. Dad was sitting behind her holding her up and the baby was about to be born! The Dad started to get very excited as he saw a head of dark hair! The midwife wanted the young Mom to feel her baby’s hair, but she wanted to just concentrate and get through it. The young Mom saw scissors being brought over and was afraid they planed to cut her and started saying “I’m pushing! I’m pushing! Don’t cut me!” The midwife chuckled a little and said “No, this is to cut the Baby’s cord with!” The Midwife continued helping the baby’s head even though she was inflicting more pain than the baby was!

At 8:10 in the evening, just 5 hours after the first contraction, the baby was born! Mom and Dad were so excited! The miracle of birth just happened and it was THEIR baby! The new Mom was asking over and over “Is it a boy or a girl?!” The midwife told Dad to look. “It’s a BOY!” He exclaimed! They were thrilled! “I knew it!” said the Mom. The midwife had the baby on the Mom’s chest and was rubbing him with the blanket. She then held up the cord, clamped on either side, for the Dad to cut. She handed him the scissors and told him to cut it. He wanted to make sure it was in the right place so he asked where he should cut. Joy unexplained was in these parents heart!

“Cut it NOW!” came the stern reply. Suddenly the new Mom stopped and thought about the weird silence. The baby wasn’t crying. “Why isn’t he crying?” she asked over and over again. Her husband tried to reassure her that it was going to be okay. The midwife took him across the room and where the nurses were rubbing him. After a few moments a nurse walked out of the room carrying her precious little bundle, who still was not crying. The midwife explained that the new little boy was not crying because he was not breathing. She left the room shortly afterward. At some point the couple realized the baby was limp, lifeless, not moving and very gray. It did not register with them at first because of the joy of having their first baby in their arms and having never seen a birth before they didn't know what to expect from a new baby.

The calls started. The paternal Grandparents were traveling out of state, so without a cell phone, they were not able to be reached. The wife called her Father, who was at a Family Night at his church in Ohio. “Hello?” came the cheerful answer as he was awaiting the news of his first grandchild. “He’s not breathing!! They don’t know why, but he isn’t breathing. Please pray!” She didn’t even say “It’s a boy!” The plea for prayer was much more important. After a couple of minutes of explaining what was happening, her Father hung up and stopped their whole church and asked them to go before God’s throne to intercede for his grandson’s very life as they stood around the bonfire.

They could not get a hold of Anne and their Pastor was coming home from a camp meeting so they called another church member and again explained what was happening. Immediately she sent an email out to every church member asking them to join in pleading for his life.

Over the next hour and a half the midwife came in and out of the room saying things like “I don’t know what happened, his heart rate was good, his color was good, he just isn’t breathing.” And probably most insulting was the questions to the Mom who just went through labor without pain medication “Did you take anything today?” Of course the Mom said “Only the red raspberry you told me to take.” The next question was shocking if not appalling… “No, I mean like narcotics. I have only seen this before if the Mom was on narcotics.” The Mom who had never tasted a sip of alcohol, never smoked a cigarette, and had to be in desperate pain to even take Tylenol could not believe the implications being made.

Finally after an hour and a half they brought the wheelchair in to take her to see her son. She was thinking everything is going to be okay now, he just needed a little help breathing at first, no big deal. As she was being pushed out of the room she looked at her husband and said “That wasn’t so bad, I could do that again!”

As they waited outside the “NICU”, which was a tiny little room normally used as a closet and storage area, their Pastor and his wife and their daughter (who was good friends with the Mom) had arrived and were waiting to talk with them. The Pastor stood waiting to see the newborn with the couple. While waiting for permission to go in, they heard a nurse in the room say “Oops! Well I don’t know! I have never done that before!” All three of them commented on how weird that comment was and wondered what it meant as their son was the only one in the room with the nurses. The midwife stopped at the end of the hallway, waving her peanut butter crackers in the air, said “Good bye, I’m off to the other hospital to go deliver another baby.” And with that, she was gone.

At last they got to see their little boy. Their heart were broken at the sight of him with a breathing tube down his throat and sticky leads on his chest. His eyes were closed and he was lying completely lifeless. Even his umbilical cord was gone and in its place was an arterial line (IV into an artery). It was explained to them that they could not hold him because if that arterial line was bumped out of place he could bleed to death. They did not have a chair high enough for the Mom to sit beside him and see him so she sat for the next 8 hours on a hard bar stool.

The hospital staff forgot to bring the Mom food so the husband ran out at some point to the nearest fast food joint and got some for them. The couple was constantly asking questions about his ventilator and the setting he was on. Over the next several hours they were able to wean down his oxygen and remove the breathing tube. At one point he tried to cry but only shook and made a tiny little sound. That was the only sign of life he showed, though. Still thinking he was okay now that he was breathing on his own; Dad went back to the room and started to sleep. About an hour later, at 6am, the Mom finally gave in to her need of sleep and sadly left her newborn to go sleep in the same hospital bed as the Dad.

It was around 7am they knew their lives were about to change forever. The doctor walked into the room and woke the exhausted parents up with a harsh statement. “Your son just had a seizure. They are transferring him to St. Christopher’s Hospital for Children in Philadelphia. The transport team will be here in about an hour. Go back to sleep, you’re going to need your rest.” And turned and walked out of the room. Behind her, the new parents started crying and holding on to each other. How did this happen? He was breathing and seemed ok an hour ago? What is going to happen? Is he okay? GO BACK TO SLEEP, are you kidding?!

The ever rational husband said he was going to run home and grab some clothes and supplies. Since they had planned an early release, they thought they would be in the hospital for 4-6 hours after the birth and did not pack enough stuff. He assured the terrified Mom he would meet her at the hospital shortly. The paperwork was done to release Mom from the hospital and almost an hour on the dot the transport team was there. She walked behind a transport Nurse and EMT as they wheeled her tiny little man in an incubator down the hallway and out to the awaiting ambulance. Her mind was in a fog, she couldn’t believe what was happening. She couldn’t believe her little man was intubated again and just lying there so helpless. During the ambulance ride she was fighting sleep as much as she could. The transport nurse was a kind and gentle lady. She pulled out some blankets for the Mom to use as a pillow. She assured Mom to try to rest a little during the drive. When they arrived everything seemed like a dream, no make that a nightmare. The Mom felt as though she was a little lost puppy looking for his way home. They told her to wait alone in this tiny little room outside the NICU as they got him set up inside.

Within a short time, her husband arrived and was by her side as they walked each step of the way through the next 5 weeks… and has never failed to walk with her and help her every step of the way in the last 5 years.

Happy Birthday my precious Dillon! You are a miracle! Your life is a miracle. The doctors thought you were going to die, human reason says you shouldn’t be alive right now. The length of time you suffered through lack of oxygen (about 45 minutes before birth and about 45 minutes AFTER birth) says you should have left this earth long ago!

And yet here you are celebrating your fifth birthday – 5 full years and going stronger than ever! Thank you Dear Lord for never leaving us, for walking with us through every trial, for being our strength when we have no strength, for loving me even when I was angry at You, and most of all, thank you Lord for allowing us to be a picture of Your Grace and hopefully be a blessing to many lives as we continue to love and care for the special blessing you gave us.

About 2 hours after Dillon's birth...

Daddy and Dillon, again about 2 hours old

About 1.5 days old at the other hospital

This little video was taken in the NICU, it was one of the first times Dillon started to move. Daddy was working everyday so I took the video for him to see Dillon.

And now??? Check out his 5 YEAR OLD PICTURES by clicking here

Truett Walking

2011-06-04T20:17:00.003-04:00

Just in the last week Truett is really taking off with walking so I had to get a video of his first few, uncertain steps. Once I turned the camera on he took more steps than he has ever done before!

Here is the video!

It won't be long now!!

And his fourth tooth broke through this week!

Jay's school

2011-06-04T20:14:00.003-04:00

Its been about 1.5 weeks (or maybe more, I don't know) that I taught Jay his vowels. I only taught him one day for a few minutes. Then I didn't talk about it again until I surprised him with a little "test". Out of the blue I asked him to go to the white board and write the vowels....
The only one he needed help remembering was E. Then the next day I taught him long vs short vowel sounds, he did amazingly well! (better than me - trust me!) One the road to full time reading!

Enjoying Summer

2011-06-04T20:02:00.004-04:00

Some pictures of our family enjoying the summer!

Truett watching Daddy and Jay play... he wants to go and do everything they do together!

Standing in the driveway

Jay and Daddy playing

Friends of friends gave his car to Jay last year near the fall, he was afraid of it last year but this year he is loving it! And of course Truett goes along for the ride!

2 years ago Grandpa and Grandma gave Jay this from sprinkler and again he was terrified of it, but this year it has been fun.

... Especially with how hot it has been this last week!

They had a lot of fun!

I am surprised Truett just sat there for a long time and let the water spray him!

Today we thought was a church activity to pass out info about the church then a picnic after wards at a park, but that is NEXT week! So we found another place to go since we were all in the car with the picnic!

Jay took a picture of Daddy and Mommy for us.... don't we look great?!?! Best picture of me ever!

Memorial Day Picnic

2011-06-04T19:53:00.004-04:00

This year we went to the church picnic again for Memorial day. It was SO HOT! We didn't think Dillon would last out there for more than a few minutes... but my ever thinking Husby had a great idea....

A box fan running off of a battery! In the shade of a tree, with the fan blowing on him, Dillon lasted several hours before he reached his limit. As soon as we put him down this huge branch fell out of the tree and almost impaled him! It just missed him and fell in between Dillon and Jay. Weird, but he was ok.

Truett HAD been wearing size 6 month jean shorts, but as we were eating I looked down to where Truett was standing and the shorts were on the ground. They completely fell off him, so I didn't even bother trying again!

Jay - the silly monkey!
Wow - here's a first! Josiah playing volleyball! I HAD to get a picture of him playing sports at a picnic!
We had a great time, and I'm not going to lie, I enjoyed the benefits of Dillon's fan too! It was HOT that day! Thanks Dillon and thank you Daddy for your great ideas!

Waterway babies neck collar/pool

2011-06-04T19:48:00.002-04:00

This is Dillon's new little pool! It came with the neck collar for babies and/or special needs children. It is AWESOME! All the neck collars that CHOP tried were horrible, nothing actually held his head. The therapist at DuPont told me about this one so we ordered it for Dillon. It actually works! It holds his head above the water!

The little barrel pool and the next collar are only 100 plus shipping - I HIGHLY recommend this for any premature baby or special child. It fits right in our bathroom (although I moved it outside hoping the heat would keep the water warm). Everything for our special kids is SO expensive, but I thought this was a good deal to be able to do aquatic therapy no matter where you live!

Video can be seen here. (Don't mind Truett in the background he was past nap time)

New Life Verse

2011-06-02T16:28:00.002-04:00

Several years ago while in church I saw the verse in the Bible Luke 22:42 "Saying, Father, if thou be willing, remove this cup from me: nevertheless not my will, but thine, be done." From that time on I used that as my "life verse" meaning I often used that to find comfort with the situation we have on a daily basis. I felt a burden lift from my shoulders as I saw that it was ok to ask God to change the way Dillon was. I was relieved that even Jesus asked God for there to be another way. But - I also understood that meant my attitude also had to be but whatever Your will is, I will accept.

Last night I was in church, in the deaf class, where I have been attending the last several months to learn sign language. We had a guest speaker in and as he was reading one verse, my eyes moved across the page and I saw a totally different verse that captured my heart. Philippians 1:12 "But I would ye should understand, brethren, that the things which happened unto me have fallen out rather unto the furtherance of the gospel;" I am ready to move from my life verse being one of asking God to change things to now saying THIS my life verse! I KNOW the reason God allowed Dillon to be brain injured is for the gospel to go to people who might not have received it any other way! It is for the countless number of people we have come in contact with only because of Dillon. It is for the countless number of people who will take the story about Dillon that wouldn't take anything else that has Bible verses telling them of their need for salvation! I can honestly say the things that have happened unto our family is for the FURTHERANCE OF THE GOSPEL and if that was good enough for Paul to accept his beatings, stonings, prison and ultimately his death - it is good enough for me to accept Dillon's physical condition!

Truett

2011-06-01T21:42:00.001-04:00

Truett took 7 steps today at Dillon's acupuncturist! This is the most he has ever done! Go Truett!! I can only imagine what it is going to be like in about 2 months.... ahhhhhhh :o)

Jay and the Baby

2011-05-23T22:21:00.002-04:00

Tonight I had Jay feel his baby brother or sister moving for the first time! The baby is strong enough now that he could easily feel him/her.

Two videos...

Video of Jay and Baby moving 1
Video of Jay and Baby moving 2

Jay's Reading and Writing

2011-05-20T20:12:00.002-04:00

Here are some of the words jay was writing on his white board tonight. He decided to write "cat" and 'dog" then I told him to write "God" and "frog".

Then I walked out of the room and he came and told me he wrote "lost God" (don't ask me why - I have NO idea, but that isn't the point....) He actually wrote God and lost all on his own!

This picture is sideways (again another thing I have no idea why). Jay started playing and just writing letters randomly so I told him to write a real word that I could try to read. So what does my not even 4 year old try to write....

dinosaur!

He told me he wrote Dinosaur before I even saw it and sure enough that is what it looks like he tried to do!

And ok - I am sure not everyone wants to watch these, but I want to keep them for me! And I'm sure the Grandmas want to see them....

Here are a bunch a videos of Jay reading....
(it was the first time Jay EVER SAW these 4 books! I have never read them to him and he has never opened them before)
Book 1
Book 2
Book 3
Book 4
Reading game (I didn't get to record when he read "Daddy will be home soon." Perfectly - all by himself)

Good job Jay, I'm so happy you love to read and are working so hard. One day you will look back on this blog and see how well you were doing 5 weeks before turning 4! Mommy loves you Jay!

Dillon's new wheelchair

2011-05-19T15:07:00.004-04:00

The first wheelchair took 2 years to get approved by insurance. This time we started the process in February and we picked up the new chair TODAY!

I was SO nervous about the new chair, just not knowing if it would work for Dillon. Would he be comfortable in it? Would it fit in the van with a child in a car seat behind him? Would he hate the new chair? etc etc etc

It is Awesome! He did GREAT! We had to put him in and out about 5 times as adjustments were made and his heart rate stayed below 120! Then for over an hour on the way home, he did GREAT!!!!!!!! His heart rate was below 125 the whole time. I KNOW it looks so tight and constrictive, but I think he is much more comfortable being supported instead of limp and moving when he is unable to hold himself or put himself in a better position.

Here is his new GRASSHOPPER GREEN wheelchair! (Don't you love the color I picked out for him - such a little boy color!)
Going into it for the first time...
I love that it even has his name on the back. The oxygen tank holder is pretty high on this chair and since he hasn't been needing oxygen I will probably ask for the smaller tanks so the don't stick up in the air so far.
You can see it tilts back on the "rocking chair" like prat so if he needs to go back. The downfall to it as you tilt him back your handle goes way down (you'll see what I mean in the lower pictures)
Looking good with his new headrest. It comes from the back and down the front of his chest to keep him from tilting his head back and resting it on his back. He puts himself in a very bad position that would cause some issues if he continued to do that all the time so this is much better. It will also help him breathe better.
The red block slides up the head rest to keep his chin up which helps with his breathing, plus will keep him from making the horrible noise he makes sometimes when breathing. It also helps him from pulling his head out of the head rest and getting it stuck down on the side of the chair (which he does all the time while driving and is why I cannot go places with him alone.) It will also keep him safe if we were in an accident because his head won't be thrown about as would have in his old chair. Again, I know it looks horribly uncomfortable, which is why I was so nervous, but he really seems to like it. It HAS to feel better knowing you are safe and secure than feeling like you are falling all over the place!

See? When the tilt is down it handle is so low Truett can push him! I don't know HOW Josiah is supposed to push if Truett can!

Praise the Lord! We were approved with out a fight by the insurance at all! It came quickly! AND HE LIKES IT!!!!!! I am floating on cloud nine right now!!!

HAPPY 1st BIRTHDAY TRUETT!!!

2011-05-16T19:42:00.011-04:00

Happy 1st Birthday Truett!

It's hard to believe it has been a whole year already! It has been a busy year, since Truett's birth we have moved, Dillon had major surgery, we went to Va a few times to see my Grandparents, we went to Va for my Grandpa's Homegoing service, we have been approved for a new wheelchair for Dillon, etc. Times flies!

Josiah left last Friday for Texas for his brother's law school graduation. Congrats Ezra! So that meant a whole weekend alone with all three kids! We did good, we all went to Walmart (Dillon in his wheelchair, Truett strapped to me, and Jay being my helper with a bag on the back of Dillon's chair to hold our groceries.) Then we walked to a flee market and had hot dogs. We did well even going to the early service at church (starts at 8:30), but we were missing Daddy!!!

Today we started off with a night nurse needing to call off last night (it was the first time this nurse has called off) so we had a new nurse that we had never met. She seemed to do well with Dillon. The only problem was Dillon hasn't had a bowel movement in over 5 days! I saw this yesterday and had tried to do something for it, but nothing worked. I was starting to think we might need to take a trip to CHOP but I asked this new nurse to run to CVS before the end of her shift and get me some stuff and THANKFULLY it worked (just a little, but it did work)!

Through out the night I heard Truett cry a little off and on. He doesn't normally do this so I was thinking "Oh no, is she going to be sick for his birthday?!" At 6:30 when he cried and didn't stop I went into the room and he had his leg stuck in the crib. Based on the red mark I would guess it had been there for a while. So he was up and had milk and cereal, and of course the Jay was up and eating too. WAY too early! Truett went back to bed till noon so that gave Jay, Dillon and I time to prepare for his birthday.

(I don't know why a few of these pictures are flipped - it is blogger changing them for some reason.)

Dillon wrapping his gift for Truett

Jay wrapping his hand picked gift for Truett

Truett loved the balloons we blew up for him! He played with them ALL day!

Of course Dillon had to get in on the fun too!

Jay and I actually did the cake around 8 am but it ended up being an all day project... you'll see why

Enjoying the butter cream frosting we made...

Iced cake with butter cream frosting

I bought fondant on Friday so we would have it. I have never used it before so I didn't know how hard it should be. As I opened the package I saw it had a whole in it. Sure enough it was ROCK SOLID! We ended up having to run back to the store, thankfully they let me exchange it for a new one that was not rock solid. Jay is helping to roll it out.

covering the cake with the fondant

all trimmed up

Then we took the left over fondant and colored them 4 different colors with food dye. This took the longest. Jay helped me cut all the stars out and I put them on after he was napping.

Truett's cake with the candles! I am pleased with how it turned out since it was my first time working with fondant. I am excited to keep practicing (don't worry I will have TONS of birthdays over the next 18 years to perfect my skills!!)

Truett's presents! Daddy finally got home from Texas, too! It wasn't until almost 6pm, but he would have been at work all that time anyways. I am so thankful he was able to get home for all the fun!

Family picture

I think Truett thought the candles were the food!

The three boys!

Mommy and the boys

Daddy and the boys

Eating his cake and ice cream too.

YUMMY!

Why doesn't Mommy normally let me eat with my hands?

Think he liked it?!

A present from Dillon's nurse

Dillon and his baby brother

Can you guess who picked this one out?

Other than the balloons, this was his favorite present...

A basketball from Dillon!

I love this little man so much!

Adorable!

I really think the balloons were his favorite!

Mommy and the One Year Old!

Happy birthday boy!

How nice of Daddy to give Truett a phone for his birthday...

Happy Birthday Truett!!!!!

Click HERE to watch Truett with his balloons
Click HERE to watch Truett playing with the basketball
Click HERE to watch us singing to Truett
Click HERE to watch Truett eating his cake and ice cream

Mother's Day!

2011-05-14T21:21:00.003-04:00

Mother's Day 2011!

Mother's Day this year was a good day. Josiah and Jay got up early and made me chocolate chocolate chip muffins. (I pre-heated the oven, set out the box, bowl, measuring spoon, egg, muffin tin, cooking spray...but THEY made them!) And oh were they YUMMY!! While they made the muffins I got the stew in the crock pot.

We went to church then came home and had stew. I told Josiah I didn't want him to take me out because the restaurants are always so busy! The kids had a nap and Josiah and I soaked up some sun. Then after evening church Josiah took us out to Olive Garden.

He also bought me some chocolates, starbucks drinks, and potted flowers.

He is a sweet heart!

Some cute Jay sayings:

The night before...
Daddy: Jay do you know what tomorrow is?
Jay: Yes, Mommy told me - Mother's day.
Daddy: That's right, so we have to show Mommy how special she is.
Jay: Why?

After morning church... Jay brought Mommy a Chocolate bar
Mommy: Thank you Jay!
Jay: Thank you Mommy for....ummm... I don't know. Ummm Thank you for washing my clothes!

(Daddy had told him to say thank you to Mommy for something nice I do for him and he thought of it all on his own. At first I thought he just forgot the exact words Daddy told him to say so that was even more sweet!)

I can't believe this was my 6th Mother's day! I include the one where I was 8 months pregnant with Dillon - so 6 years now! I love my boys with all my heart. I can't wait - next year will be a Mother's Day with our whole family in the picture.

Teen Activity

2011-05-14T21:11:00.002-04:00

Josiah helped with a teen activity last Saturday. He was a chauffeur for 5 teens. He took them into Philly to a nice restaurant and brought them home. The church also bought all the drivers a wonderful meal. But I just HAD to post these pictures because he looks so funny!

Isn't he adorable?! He looks like a secret service agent!

Due date

2011-05-14T20:37:00.001-04:00

Acupuncture

2011-05-06T17:18:00.002-04:00

After two years of letting Dillon be a pin cushion, and me being terrified of needles I finally let the acupuncturist put 2 needles in me! Remember now, I am the one who has had 3 children naturally because the thought of a needle in my back is worse than labor! I passed out when I was in labor with Jay because they had to put an IV in my hand. I DON'T do needles!

And guess what....

...it didn't hurt at all!!!

Really, it didn't! I just gave blood yesterday for a life insurance physical and that hurt! But this did not. And yes that is my 3 year old in the background with one in his head, eating an apple. He has had it several times, but this was my first.

:o)

another day outside

2011-05-06T16:19:00.002-04:00

A day outside enjoying the sun.

Dillon resting under his tent so he doesn't burn like a crispy critter...

JayDonn riding his bike down the sidewalk, a first for him! Yes, I bribed him by going to the corner with M&Ms and when he rode to me I gave him 2. But it showed him he CAN do it!
Truett riding his bike, in his very messy clothes. He also had a M&M so the beautiful colored drool is decorating his clothes.

Click HERE to watch Truett riding his bike.

Truett's first fat lip! If you watched the video you saw he got a little too excited to keep up with big brother and fell at the end - his little tooth cut his lip.

Mommy enjoyed the sun too! I love the warm weather - I just wish there was a way to clean the house while being outside....

What did everyone else do today with the beautiful weather?

Enjoying the Day!

2011-05-02T22:09:00.003-04:00

Look at those big eyes!

Dillon enjoying the evening in the back yard with the family

Truett's first time riding his bike - 11.5 months old. I think it is just the picture that makes him look fat b/c he really is NOT fat! :o)

I don't know why the picture won't turn right but a sleeping baby is a beautiful thing!

Is there anything more precious than this?!

Click HERE to watch Truett riding his "bike".

Blessing!

2011-05-02T18:43:00.002-04:00

Ever since he was born, Truett has vomited. Jay did it too, but when he went to table food is stopped. With Truett it didn't stop at all. He weight gain was so slow, he fell way off the charts. He was about 2 pounds UNDER the 5%. I know some 3-4 month old babies that are bigger than him at almost a year.

After the doctor appointment where we saw just how small he was I started counting calories. He gets more than he needs in a day, most days. So the only other thing I could think of was the vomiting. I took him off cow's milk and put him on goat's milk. It only got a little better. After talking with my sister about allergies, I took her suggestion. I started making his goat milk pretty hot. Presto! He has nearly stopped vomiting! Sometimes he still does a little, but NOTHING like what he used to do. He also gained more weight during the time of trying this.

I showed the doctor a list of family allergies and told him what I had found with the hot milk. He suggested we see an allergist to be sure he isn't allergic to milk, soy, etc.

Today was our appointment...

BLESSING: Truett is not "allergic" to milk or any of the other 7 main things (soy, peanuts, etc.) He must just have a GI intolerance, probably to one of the proteins in milk. They did the scratch test on his back. They poked him with 10 little tiny needles and it was so quick he stopped drinking looked at the nurse then went right back to his cup. I think a blood draw would have been more traumatic because he would not have liked the tourniquet, or them holding his arm still.

The doctor said this was the best answer possible! All we have to do is avoid anything that makes him vomit for 3 months then try again slowly. He will probably out grow it by 2-3 years old! Thank you Lord!!

She also gave me a few formulas she recommends for milk intolerant kids as they all need a little extra nutrients since they can't process the milk themselves. As long as we avoid certain things and he continues to gain weight we are fine. If he were to not gain enough weight she suggested seeing a nutritionist then maybe a GI doctor. But I think he will gain enough as long as we avoid the things that make him vomit non-stop!

Thank you Lord for answering another prayer!

Missions Conference 2011

2011-05-01T21:06:00.002-04:00

Josiah in his white China shirt and me in one of my dresses. And of course you can see baby popping out - at 21 weeks he/she is making him/herself known!

Missions Conference was so good, wonderful missionary that God has used to start many church in the jungle. So many AWESOME stories of him trusting God and his life being spared and people (including chefs and witchdoctors) being saved! He has had malaria over 40 times! Including cerebral malaria 4 times!! To God be the Glory!

Since tonight was the last night, some people dressed in international attire. We all wore our China clothes. Here is Dillon in one of the hats.

Hard to believe Truett wasn't even around when we were in China almost 2 years ago!!

Now Jay is wearing the outfit I got for Dillon and Truett is wearing Jay's old outfit.

Sweet little man!

Wow, Mission's conference was a blessing. If you haven't been to one, you need to! It was great - there were 7 (I think) different missionary families there. We had a brunch on Saturday where the ladies listened to the ladies give their testimony and the ment he men. Then we had brunch and got to sit with one of the missionary ladies and talk with her a little more. So encouraging!

Dillon's sleep study

2011-04-27T15:33:00.003-04:00

Dillon had a sleep study last night. The night nurse met us down there and took over so I could come home and sleep. I got a call about 11PM saying the doctor wanted the nurse to take Dillon down to the ER and that they were aborting the sleep study! Huh? He was fine when I left him!

His heart rate went high (which was still within the range I told them were cleared by cardiology). And keep in mind it started going up while they were attaching wire after wire after wire (that left nasty red marks all over his face, neck and chest... hum I wonder why he didn't like it!?)

Then because his heart rate was up from being mad he got a fever! Oh no - 99. No hospital considers 99, one degree higher than the patients norm, a fever.

Oh and let's not forget the Tylenol didn't work. When I asked the doctor how long ago it was given her answer was 20-30 minutes. I informed the doctor Tylenol usually takes 45 minutes or so to kick in and she needed to wait.

She said he was coughing up green stuff. My nurse said he never saw anything green.

And and let's not forget the increased secretions - which he is in between robinul doses at the time and I warned them he would have more in between doses.

And my favorite reason why he needed to go to the ER was "He is gagging on secretions and coughing." I informed the doctor that Dillon cannot swallow which is why we have a suction machine and he HAS to cough those secretions up.

She was convinced the study should be stopped because he was so ill and needed to go to the ER. I spoke on the phone with my nurse and he said Dillon was already starting to calm down, he also had told them Dillon did not need to go to the ER and that he was fine to continue the study once he calmed down from all the wires being placed.

They finally called me back at midnight to tell me they would continue. Then he must have done great because they never even put him on CPAP... during the whole night! If he would have needed it they would have put him on a low number and worked it up to where he needed - so I think he may not need CPAP anymore.... I can't wait for the results!

I really don't understand these CHOP doctors who don't understand special kids. How do they work at CHOP and be afraid of special kids? I told the doctor she clearly had not read his history if she didn't know that he can't swallow (which is kind of important when you are doing a sleep study to see how well a child is breathing) and that he is so sensitive to temp that a warm room can make his temp go up to 104. I think next time I go to a sleep study I will try to schedule on a night Dr. Shaw is not there!

Spring pictures and videos

2011-04-27T15:14:00.007-04:00

Jay was so afraid to ride his blue bike with brakes anywhere except the back patio. yesterday we tried riding in the driveway and we were not getting anywhere. So I took a chocolate chip cookie down tot he end, put it beside the light and told him he had to ride down to get it. Can you guess who rode down the driveway? And can you guess who isn't afraid anymore? I guess all it takes is enough, of the proper, motivation! He is now doing great on the bike! In the next week we will try the sidewalk! Oh no! :o)

Truett's and Mommy's hands

I know they are so close to the same picture, but I love them all! :o) Couldn't decide which ones were the best so I put them all in. That's a Mommy for you!

Click HERE to see Jay riding his bike in the drive way
Click HERE to see Truett crawling and standing in the grass.

Hope you are enjoying the spring weather as much as we have been this week!

Baby Kuenzi #4

2011-04-27T14:53:00.003-04:00

Monday April 25th we went for our ultrasound. I decided I did not want to find out what the baby is. I like to be surprised, I think it is better for several reasons. One being they guessed wrong with Truett and I don't want to have them be wrong again. Another is I don't want people to be "sad" for me if we don't get a girl, if we have 4 boys we will be thrilled to raise 4 boys for the Lord. Of course I would like a girl, but I don't want to EVER be sad over my precious gift from God and I don't want anyone else to be either!

Josiah decided that if I was going to be surprised, so is he! Yes! It is so much for to be surprised together!

The baby looks good, everything looks healthy. I tried to eat very little sugar/carbs that day so the baby wouldn't be too active for them but instead it was napping! They had to keep poking my belly with the ultrasound probe to get him/her to move. The doctor came in and said everything looked great. He even turned on the #D and gave us a few 3D pictures! This is an answer to prayer for me - silly as it is! I had wanted to do this so bad but it normally cost a few hundred dollars and I just couldn't do it right now - so God allowed us to get to see it a little and get a few pictures - FOR FREE! Awesome! Isn't it neat how our God cares about the little things our heart desires!
We didn't get too good of 2D pictures because the baby was looking at us and we couldn't get the profile, but here is the 3D. I think he/she has my nose! :o)

Happy Resurrection Sunday

2011-04-27T14:47:00.004-04:00

First an "old" picture. This was baby Kuenzi #4 at about 17 weeks.

I'm a few days late, but Happy Resurrection Sunday! We went to church in the morning and a quick lunch and little nap for the boys (Daddy and Mommy were mowing the grass) then back to church early to practice and do mic checks. Josiah sang in a men's group then the two of us were asked to give a short testimony about Dillon and how we are a "picture of Grace" because of him. I was nervous, of course, but I think it went well. Josiah spoke more about how it hit him when we got our first bill in the mail for 1.1 million and "Please pay in full." We saw we had to totally trust God for it. I spoke more about getting over my anger towards God and looked instead to see HOW it could be used for good as he promised. Praise the Lord!

Our family!

Click HERE to see Jay in his 3 year old march at church. They have the 3 year olds walk across the platform - just because they are too cute in their Easter clothes!

Fixing the sink

2011-04-27T14:44:00.003-04:00

Daddy and his boys fixing the kitchen sink. They changed the leaking facet to a new, wonderful, non-leaking one. Of course they all had to help Daddy!

Grandpa Schnarr's Homegoing

2011-04-15T15:04:00.004-04:00

My Grandpa has always been a big part of my life. At times, my family lived with my grandparents, other times we lived within 1 mile of them. All in all I think 13 of my 17 years at home were spent within a short distance to Grampa and Gramma.

Several years ago Grandpa started his fight with cancer. Recently, the battle was getting worse. As a family we went to visit them both in August and in November. I am so thankful for the time we had with them.

Sunday April 3 we got word that the hospice nurses thought Grandpa would pass within 24 hours. Every time my phone rang, I held my breath thinking it was THE call. The next few days were so hard. My Grandpa preached at my wedding, he was the one we would always go to with Bible questions, he knew everything! My first job was working with Grandpa and Dad with the painting and paperhanging business and then in rehabbing homes. I used to have to pick scraps of pasted coated wall paper from my hair because "somehow" it always seemed to fall on my head. I was the "gopher" for Grandpa for a long time until I was finally a painter/paperhanger as well. When I stopped to think of my memories with Grampa and Gramma I realized I have way to many to even write down. I have nothing but memories with them. They were always around and always a part of my life. They went to my choir events, church things, any awards ceremonies from school, they were there. If I tried to list them all the list would just go on and on. I can't say I remember any particular "gift" they gave me, because any of the tangible gifts they gave me were not as important to me as what they did give... they gave me their time, their prayers, their love, and a Godly heritage!

Grampa was saved (saw himself as a sinner and knew that only God could save him through Jesus' shed blood and resurrection from the dead) around 17 years old, went to Bible college and served God in full time ministry for over 40 years. He started a few churches, pastored a few others, was a missionary, etc. Grampa and Gramma spent their lives serving God and touching thousands of lives. Other men are still in the ministry today that Grampa mentored. One of Grampa's worse pain days ever his Pastor asked him what he was looking forward to about Heaven. His Pastor thought he would answer "No more pain." But not Grampa. His answer was that he is looking forward to not sinning ever again! He knew in his pain he had said hurtful things to people he loved and was tired of a sinful world, looking forward to never sinning again! There is no doubt, Grampa knew Heaven was his home based on the Bible promise that "Whosoever calleth on the name of the Lord shall be saved." Praise the Lord! Sunday night Gramma made sure we all got to skype with Grampa. Even though he couldn't talk she said he could hear and understand still.

Later that night, based on my understanding of his vitals, he slipped into a coma. He didn't wake up again. Late on the 5th and into the 6th my aunt, cousins, and other family were there with him and started singing hymns. They then played the song that became his favorite in the last few months, "I can only imagine". After the song my aunt told Grampa that everyone was alright, that if he was at peace with God stop imagining and make it reality. When he was ready go, make Heaven a reality. A few breaths later Grampa no longer had to imagine what Heaven is like. He was there!

We left on Thursday for the services. Friday morning was the viewing then the grave side. The memorial service was later that night. Praise the Lord one of our nurses was willing to go with us and help take care of Dillon so we could sleep at night. It was a huge blessing.

The services were hard for me, not because I don't know where he is, but because I will miss him. JayDonn kept reminding me that I will talk with him again and see him again - when I get to Heaven one day. Thank you Jay! I needed to be reminded of that! Josiah sang "Celebrate Me Home" at the memorial service. You can watch that by CLICKING HERE.

We will miss you Grampa, but we are celebrating you home! Not "good bye", but "we'll see you later!"

New due date

2011-03-10T22:15:00.002-05:00

This baby is doing well, I am finally not sick every single night! I am getting some energy back! yippee! They did move the due date from Sept 12 to Sept 10, not a big change but still. I reminded the doctor that I have fast labors and she said it is noted in my chart already! :o) They didn't seem to take me too serious when I warned them with Truett but when I only arrived 20 minutes before his birth I think they understand I wasn't joking! heehee

Dillon has been doing great. He is not on oxygen during the day and some nights he doesn't even need it now. Instead of my giant oxygen tank being filled every single week we are getting it filled every 3+ weeks! Thank you to everyone who prays for him, God has been helping him every single day. We are working on finding a place to take Dillon to get him fitted for contacts instead of glasses since it is impossible to keep glasses on him.

Nothing else has changed really... Have a good weekend everyone!

Announcing...

2011-02-15T12:55:00.000-05:00

Baby Kuenzi #4!

Due to arrive Sept 12. At 10 weeks old and about 1.5 inches I could see him/her stretching out his/her legs, flipping around and even holding and pulling on the umbilical cord! We were surprised Jan 31 when we found out that we were having another baby, but we are excited. This little one has made me more sick than any (or all 3 of the others combined!). I have lost about 5 pounds so far b/c I have not felt like eating. It is getting a little better as time goes on. I thought I was only 4-5 weeks but I was actually 8, now I am 10. We plan to find out if it is a boy or girl this time.

PT at CHOP

2011-01-27T17:58:00.004-05:00

Today was one of the "land" days for his PT at CHOP. Instead of being in the pool we worked with Dillon on land for the first time. He did....

GREAT!

Dillon did so good, I was so proud of him! He was trying to roll over, he stood up, he was wide awake and trying the whole hour! Great job Dillon!

Sorry the pics aren't the right way - it was going to take too long to mess with them! :o)

Here Dillon was "bridging" (if that's how you would spell it?) which is lifting his bottom off the mat. She was surprised and pleased that he was doing that right away.

Click HERE to watch the movie of Dillon trying to roll over.

Jay's Jabbering

2011-01-24T14:59:00.004-05:00

More of Jay's Jabbering for your entertainment:

It is a sweet and sad one...
The other morning Jay woke us up about 5am outside our door crying and saying "Mommy my ear hurts, can we pray about that?" It was so sweet and yet so sad! He had a double ear infection (his first ear infection ever). He was in SO much pain. I am so happy he knew the first thing we should do is pray. It was horrible. He was crying all morning, clinging to me, just laying on the floor trying to sleep all morning, waking up from his naps and screaming. he was reapeating over and over "It hurts me!"
But, by 1pm his ear infections were gone! (I'd say praying worked!) I gave him 2 doses of oil of orangenol, 2 doses of 50% peroxide 50% water drops in the ears, and the acupuncturist worked some points on him.
I saw how much pain he was in and realized that this is the pain Dillon is often in and can't even say anything until after the ear drum ruptures. Oh Lord, please give me wisdom to know right away if Dillon gets another one!
But it was amazing, by 1pm he was fine again and hasn't had any more problems. I did a few more drops in the ear to be sure it wouldn't come back but that's it!

__________________________

Jay woke up too early this morning so I told him to go back to sleep for a bit. A few minutes later I hear...

"Mommy, I prayed and asked God to bring the sun up and He answered already! I opened my window and it is up!"
Me, still trying to sleep: "That's good Honey"
Jay "So... can I get up now?"
Me to Josiah: "Oh boy, he is going to keep us on our toes!" :o)

Dillon update

2011-01-16T15:39:00.002-05:00

Dillon has been doing great overall. He has still been off oxygen during the day for the most part. A few times he has needed a little, but such a huge change from before!

A teen girl from church came over this week so we could do Dillon's patterning. I am thrilled! I LOVED doing his therapy again because I know how good it is for him. If you live close and are willing to help or know someone who could help 1 or 2 times a month for 3 hours please let me know!! Thanks!

The most current update on Dillon is that he aspirated on Friday afternoon and is not feeling well. We started on the oil of oragnol right away. His oxygen levels are stable but his heart rate is 150-170s, which is high but not too high. Last night the nurse had to call me several times and have me come down for an hour to help calm Dillon becuase his heart rate was over 200.

Please pray this gets under control fast! I know Truett was sick and in the past when Jay had a cold it was RSV for Dillon so I am praying this will not turn into anything more serious and that we will be able to treat him at home. Thank you for praying with me!!

Jay update

2011-01-16T11:14:00.001-05:00

Jay is growing so fast! He is working on school books for 5-6 year olds even though he is 3.5. He does so well with school. He can write most of his letters, he knows all their sounds, he can read 3 letter short vowel sound words. He amazes me! I am getting ready to start an official "school" with him this coming week. Someone sent me this link: http://www.hubbardscupboard.org/literacy.html

on facebook and I really like it. I am using the 3 year old curriculum because I think it is important to strengthen his foundation knowledge of the Bible. So this week will be able creation. It is set up to do 3 days a week, I may try to do more or move faster through it since we don't need to work on the numbers 1-7 since he already knows them.

Truett's immunizations

2011-01-16T10:40:00.003-05:00

Truett. Well right after Truett learned to sit and had been sitting all that day and the next, he got immunizations at the doctor. He got the 3rd in the Hep B and the first time for a flu shot. I didn't really notice at first, but Josiah did. He stopped sitting, he stopped smiling, he would stare "through" people, he could no longer pick up a cheerio without shaking (if you saw the video I posted before you would have seen the way he was acting). It was scary!

Josiah and I have decided AGAINST any more immunizations for Truett since we saw it clearly hurt him. It set him back a month in his development and I think it changed him permanently to some degree. He was so advanced with his coordination (at 22 days old he was holding his head up so well, at less than 3 months he could play with toys and push the buttons to make music, he was well on his way to crawling, he was advanced) then all of a sudden he stopped and has had to catch up again. He is sitting again, but it took till just this week for him to crawl. His coordination is not what it used to be. He still struggles to feed himself cheerios when Josiah had seen him doing it no problem at all before this flu shot. We started looking into immunizations more and found they have

5,000 mcg 2-phenoxyethanol which is ANTIFREEZE!
aborted cow blood,
200 mcg FORMALDEHYDE!!
sodium phosphate monobasic monohydrate which is TOXIC,
250 mcg ALUMINUM
5,000 mcg YEAST
Neurotoxins
Cancer causing agents such as polysorbate, and the formaldehyde
Ground up animal carcasses
human blood
MRC-5 cells pieces of aborted human babies (varified by my sister's doctor who was one of the ones on the team that invented the incubators for pre-term babies!)
Potassium chloride used in lethal injections
Potassium phosphate a liquid fertilizer agent
Sodium borate used for cockroach control
Urea, metabolic waste from human urine
Soritol which is not to be injected - but is!

Media reports that 36,000 people die each year from the flu which is why it is worth the risk of the immunization. The truth is that about 770 people die a year from it. HUGE difference. They do not have any long term testing on the safety of the flu shot and the combinations of ingredients. They GUESS which strands to include in the vaccine before flu season even starts since it takes so long to make it so you are NOT getting the strands that are the real problem this year, you are getting what they guessed to be the problem.

I just have to put this quote in here for you to read I got from some of my research:

To reduce how virulent the viruses would be once injected into the body, the viruses are strained through animal tissue or human fetal tissue, especially from late term abortions. Other tissues that have been used are chicken embryo, calf serum, monkey kidney, embryonic guinea pig cells and cells from the dissected organs of aborted human fetus.

I have always been against immunizations but Josiah was for it because he didn't know all this. He didn't know that by the time the kids are 3 they have had over 31 immunizations! Each one contains some or all of those ingredients. Would any of you give your baby antifreeze to drink? NO! So why on earth are we letting them inject it into our children!?!?!?! I don't know but I am 100% sure the doctors hurt my little Truett with it and I don't want to ever get another one. Look into it. Do research and make a decision you feel is right. Josiah and I do not have peace about giving these anymore. I am just heart broken that it took Truett being hurt by it to get us on the same page and to stop getting them.

Honestly, please don't leave any comments for immunizations. I have done a lot of research on this, both in the past and again recently. I don't care if you are for it, you can deny the evidence of what immunization can do - as my doctor did - but I saw the PROOF of it! I saw my child regress, stop using major motor skills for a month, stop using the fine motor skills and never got it back, I saw him stop interacting with my husband and I the way he once did, and not get back to normal after it. So stop listening to the people who make money by convincing you they are ok and do research. If you wouldn't give your child antifreeze then why would you give them immunizations?

So Truett is now sitting again, and started crawling this week. He is always fussy though and loves to be held. He was sick last week which may be part of his fussing. I hope so, I hope this will stop and he will be more fun-loving and content like he used to be.

Aquatic Therapy

2011-01-16T09:41:00.002-05:00

I can only find one of my aquatic therapy pictures and it isn't loading. I don't know what's up with it. But Dillon is doing great! Every week she does better and better. The therapits has said a few times that she didn't think he would do this well. He tried to turn over in the water (rolling in the water is easier than on land, plus we help once he raises his arm to indicate he wants to). She put a mesh bag on one leg so he would get more input from the water on that leg and be thinking about it, while we were actually stretching the other leg.

I am so pleased with Dillon, I can't believe how well he is doing in there! I have always known he loves the water, but I am thrilled to learn how to use his love for water to help him!

Make a Wish has approved Dillon for an endless pool so we can do therapy with him every day! I am so excited! The only hang up is they don't pay to have it installed or the sunroom/enclosure needed so he can use it year round. So Josiah and I are trying to figure out what to do in that area. I am so thankful we will be able to do this therapy with him... soon... hopefully!

Family Arrives

2011-01-16T09:12:00.005-05:00

Josiah's family started arriving on the 30th. His parents, sister and her boyfriend, brother and his wife, other brother and his girl friend, and his Grandma all came.

Everyone, except Todd who had to go home early.

Aunty Hannah brought a gingerbread house to make with Jay. He had a blast!

We went to Philadelphia (Penn's Landing) for New Year's Eve to bring in the New Year for the fire works. The fireworks were cool, but there was some loud music. Dad and Mom had a good idea... to bring in the New Year we stood together and sang Amazing Grace! I don't know if any one even really heard us, but what a cool way to bring it in, and God heard!

I honestly can't remember the order of everything we did while they were here but it was fun. We went to Philly one day (Liberty Bell, Betsy Ross house, etc) We went to Lancaster one day. (Dillon stayed behind with the nurse as itw as cold and a lot of driving and just not his thing.)

We had fun playing games in the evening (even if the guys do cheat!) and talking with each other. Thank you everyone for taking the time to come here!

We took Grandma to this little Swiss place near us that makes their own ice cream and chocolates. They have their family history back to Switzerland on the wall. Grandma is from Switzerland.

Wow, another full year come and gone. We are now in 2011! I can't believe how fast time goes. I graduated high school in 2003! I got married in 2005! Wow! What did we do for Christ in this last year? What more can I do for Chirst in this coming year.

Christmas 2010!

2011-01-16T08:56:00.004-05:00

Christmas 2010, come and gone! Wow, can you believe it? This year it was just the five of us, I still am amazed at the fact that there are five of us! But anyways, my parents were unable to come for Christmas and Josiah's family came a few days after so we had a quiet day together.

We woke up, had some breakfast, read the Christmas story then opened one or two presents. Then through out the day the boys opened gifts slowly... so slowly in fact they even had some for the next day. We had a nice big lunch and just enjoyed the day together. We played, sang songs, watched a movie, etc.

Thank you Lord for another year to celebrate your birth. Thank you for being born, leaving a perfect throne in Heaven to come to this earth full of sin where you suffered for me. Thank you Lord.

Catch up - again

2011-01-16T08:53:00.002-05:00

It seems all I do on my blog anymore is "catch up". I'm sorry for those who do try to follow my blog that I haven't been keeping up. I will go through several different blogs so they are under the proper title so please bear with me!

Jay's Jabberings

2010-12-23T21:43:00.002-05:00

For your enjoyment these are brought to you by Jay:

Daddy: Do you know what that is? (pointing to a wreath)
Jay: A round Christmas Tree!

-------------------------------------------------------------------------

Jay praying before bed: And thank you Jesus that I could exercise in China and that Truett's umbilical cord fell off.

-------------------------------------------------------------------------

Jay praying before bed: And please help Mommy to get saved when she grows up so she can go to Heaven with you. (He has also prayed this for Daddy)

-------------------------------------------------------------------------

I know there are more, but I can't think of them. I will try to keep adding as I remember these cute little things.

Aquatic Therapy

2010-12-16T20:16:00.001-05:00

Dillon's first aquatic therapy went great! He did wonderful! He relaxed into the water and let the water stretch him. I learned how to move him and do some things with him. We got some great pictures - but the nurse accidently took the camera home with her so on Tuesday I can post them! :o) I think he is really going to enjoy aquatic therapy! (MY legs do NOT like it so much though!)

I can't wait to learn more (in two weeks we go again) Now I need to find an indoor pool nearby that would let me take Dillon in and work with him a few times a week...... any suggestions?

Daddy's Birthday

2010-12-15T16:04:00.002-05:00

Yesterday was Daddy's 28th birthday! Jay helped me decorate and make a cake. Then Jay sang Happy Birthday to Daddy. Click here to watch it.

Check out the video to see the card Jay made. I was upstairs while he was working on the card. I came down to see that he wrote " H P B" He knew those were some of the letters in Happy Birthday all on his own. Then I told him the letters to write and he wrote Happy Birthday all on his own! He is doing very well. He is reading some words now and is trying to learn more. Everytime I turn around he is reading a book now.

For Daddy's birthday Truett got Daddy a new tooth! His first tooth came through yesterday! One more is almost here, hopefully soon! He has been cranky and runny nose because of them! Click here for Truett's first cheerios

Happy Birthday Josiah! We love you!

Dillon's friend

2010-12-15T15:58:00.002-05:00

We went to Dillon vision class again today and his friend was there. Addison is a little girl who loves Dillon. She wants to be near him all the time and she wants to know all about him. Her teacher told me when she wasn't wanting to work this week the teacher told her she needed to do her work if she was going to play with Dillon since she talks about him a lot. She is a sweet little girl! :o)

JayDonn

2010-12-06T22:00:00.003-05:00

The other day in the car Daddy said something about Dillon walking one day. Without missing a beat Jay answers

"He will one day when we get to Heaven. Yes. He will."

Oh what a day that will be! I can't wait to see my baby run and jump and play and if I have to wait till I step into eternity to see it I will!

I really need to write these down as they happen because I forget by the time I go to write them in here!

Salvo Photography

2010-12-05T20:54:00.021-05:00

This was the first time we ever had professional pictures takes so I love them!!

My little goof ball...

Daddy and his sleepy boys

I wonder what he is thinking?

This was near the end of the photo shoot and Jay was getting hyper so he wasn't in this one!

Beautiful sleeping boys. I LOVE LOVE LOVE this one!

and I LOVE LOVE LOVE this one too!

I can't believe how much he has changed since these were taken a few months ago!

My sweet baby Dillon!

Too bad his hair isn't dark like Daddy's any more

This is my favorite family shot!

Can you tell who the clown in the family is?

Thanks Raquel for taking these!

Truett sat up!

2010-12-02T19:47:00.002-05:00

Truett sat up today on his own. I was upstairs and he was in the basement with the nurse when she called me to look quickly. There was Truett sitting up! Congrats baby Truett you are growing up! ok now you can stop! :o)

I didn't get the picture from the first time, but then later in the evening he did it again! Here are the pictures from the second time he sat by himself...

Pictures!

2010-11-30T14:28:00.022-05:00

Daddy and his boys after church
Mommy and her boys (no comments about how my hair is the same color as the tree....!!!)

Truett -ba-guett

Jay and his baby brother

Daddy reading to his boys, I am so happy Dillon was lifting his head and looking at his book!

Jay helping Daddy rake the leaves, I love how the rake is bigger than him!

After raking we had some fun!

Truett in the leaves

My three little men!

Ok so Jay loves to pick on his brothers.... at least it is done in brotherly love!

Praise the Lord! Dillon has been doing so good he was able to go out without pulse ox or oxygen or suction and I was confident he was ok. I love being able to take him without all those tubes and wires we can do so much more with him! I love you Dillon!

Mommy and her sweet Dillon boy

Thanksgiving Day with my grandparents, uncles, aunts, cousins and aunt's parents in VA. We had a great time seeing everyone! I am so thankful I have a wonderful husband that said we were still going even once our nurse canceled out. He stayed up 2 of the nights with Dillon and I was with him the last night.

Sitting around talking, having fun together!

Great Grandpa and JayDonn. We love you Great Grandpa!

Making Apple pancakes. It is a tradition in our family, Grandpa makes them for special occassions. Last time we went to VA Grandpa thought it would be the last time we got them, and he said that again this time - but I told him I don't believe that since he was wrong last time. Praying for you Grandpa. (My Grandpa has stage 4 cancer, but God is good and he is doing well and is mostly pain free right now!) This time I got to help with the pancakes and put my sweat and blood into them - literally... i shredded my finger and was bleeding! hahaha It wasn't bad just enough to get a bandaide for!

Truett kept crawling under Grandpa's chair and laughing about it.
Daddy and two of his boys

Grandma and I working hard in the kitchen....

....while Grandpa and the boys are napping in the living room.

Aunt Sherry holding Truett

Aunt Sherry Uncle Donn and two of thier children with Truett

Daddy was so tired from taking care of Dillon two night in a row and the day before that we got up at 4am to drive to VA.

Mommy and Dillon - Jay took this picture all by himself

Jay took this picture of Grandpa and Gramma all by himself too!

Josiah put lights on the holly berry tree outside Grandpa and Gramma's house. It looked so good!

Truett looks like he is trying to stand ;o)

Sitting up like a big boy!

Look at my little man go! 6.5 months old, crawling, sitting and grwoing up WAY too fast!

Mommy and Truett

Hope you enjoy these pictures of what we have been up to recently! I need to post some videos here soon but at least these are finally on!

Hope you all had a wonderful Thanksgiving and looking forward to the season of celebrating our wonderful Savior's birth!

He Maketh No Mistakes

Look out world!

Haddie rolling

Home Sweet Home

Day 10 at CHOP

Day 9 at CHOP

Day 8 at CHOP

Dr. Paul Offit

Day 6 at CHOP

Update Day 3

Update day 2

Dillon is at CHOP

WAY Behind!

Make-a-Wish Endless Pool!

Happy 2 month Haddie

SNOW!!

What a day!!

3 weeks already?

Haddie's first week!

It's a GIRL!

No Baby Yet

39 weeks!

Our 6th Anniversary

Lighthouse and Beach

Baby #4 updates

Truett's Toddler bed

Make-a-Wish

Adenovirus

At CHOP

Pampered Chef Catalog ONLY party

Vacation Pictures

Dillon's first days of School

4th of July!

"School" on Tuesday!

Catch up without pictures

Dillon's 5th Birthday

5 years ago...

Truett Walking

Jay's school

Enjoying Summer

Memorial Day Picnic

Waterway babies neck collar/pool

New Life Verse

Truett

Jay and the Baby

Jay's Reading and Writing

Dillon's new wheelchair

HAPPY 1st BIRTHDAY TRUETT!!!

Mother's Day!

Teen Activity

Due date

Acupuncture

another day outside

Enjoying the Day!

Blessing!

Missions Conference 2011

Dillon's sleep study

Spring pictures and videos

Baby Kuenzi #4

Happy Resurrection Sunday

Fixing the sink

Grandpa Schnarr's Homegoing

New due date

Announcing...

PT at CHOP

Jay's Jabbering

Jay woke up too early this morning so I told him to go back to sleep for a bit. A few minutes later I hear...

"Mommy, I prayed and asked God to bring the sun up and He answered already! I opened my window and it is up!"Me, still trying to sleep: "That's good Honey"Jay "So... can I get up now?"Me to Josiah: "Oh boy, he is going to keep us on our toes!" :o)

Dillon update

Jay update

Truett's immunizations

Aquatic Therapy

Family Arrives

Christmas 2010!

Catch up - again

Jay's Jabberings

Aquatic Therapy

Daddy's Birthday

Dillon's friend

JayDonn

"Mommy, I prayed and asked God to bring the sun up and He answered already! I opened my window and it is up!"
Me, still trying to sleep: "That's good Honey"
Jay "So... can I get up now?"
Me to Josiah: "Oh boy, he is going to keep us on our toes!" :o)