ER visit

Well we had a trip to the ER today - but it wasn't for Dillon! That's a first!

This time it was for Jay. After church he was running around with his friends and fell into the corner of a pew. I didn't see it happen but I heard him crying and running at me. I saw a little blood below his hands and didn't think it was too bad but by the time I moved a few feet with him in my arms blood was dripping everywhere. I quick grabbed one of Dillon's washcloths and put pressure on it. A moment or two later Josiah and I looked at it and knew he had to go to the ER for stitches. It was about an inch long and open pretty wide. He calmed down pretty quick when I explained to him that crying would make his blood pump more and make it bleed more. We put a gauze on it and started to go to the ER.

And for those of you who know me... yes I almost passed out. I had to sit with my head almost on the ground while Josiah took Jay to the van and brought me back my juice. I had to sit 4 times on the way to the van to keep from passing out too. Why does my body react to trauma like that??? Is there anyway to get over it and not pass out??

Anyways, Jay was great, he was calm and talking to us the whole way there. Thankfully they were able to glue it shut rather than stitch it. The nurse warned him that it would sting but he said it didn't. He was so brave! I am so proud of how well he handled it! He didn't carry on crying and screaming, he stopped within a few minutes of it and was perfectly calm the whole time!



In a week we can start putting vitamin E oil on it to help reduce the scar and were told to put sun screen on it good for the next two years!

Day of Pampering

Last Saturday I went with two friends from church to "A Day of Pampering" which is an event that was started by Joni and Friends and hosted by different churches. It is a day for Moms or Wives who are caregivers to a family member with disabilities.

It was AWESOME!

We started with some fruit to eat while we registered then went in for some songs. They had an "interview" time with 3 ladies who were at different stages of dealing with the disabilities. It was interesting to hear the different views. I can see how I used to be more like the one lady, but now 5 years into I have progressed some and was like the second lady, I think. Then we had the "Blessing of the Hands" this was a time where they read a poem - a great poem that I will have to type up later when I have time.

Then we went in for a lunch and then the fun began. There were haircuts, manis, pedis, massages, etc. All for free, you just go and wait in line or sign up and you can get anything you want done. It was such a great time of relaxation!

For those around here that may be interested in it there are two churches that do it:
Mannor Church (where I went)
and
Calvary Church

If you are interested make sure you find out when to register and register THAT day. Mannor church said within 24 hours of opening registration they were full and had a waiting list. They started about 7 years ago with only 20 ladies and now are able to take 152.

So I'm a little behind....

What's new? I always seem to be saying I'm behind! With four kids... what can I say?

Anyways, my sister and her family came for a visit. This was the first time the 7 cousins really had time to play together and the first time my sister and I had time together in about 8 years! We were so thankful to get the time to chat.

Truett (21 months) and M (22 months)

5 of the cousins

Aunty Hannah gave her this shirt, but she wore it the night they came.

We went to DC with them. This is the A family at the memorial at the Pentagon

S (3 years old)

I LOVE this picture of them!

Our family over looking teh Washington Memorial and the Capitol.

The kids had a blast together! I am so glad they had the time to make memories...

From right to left: H (5 months) J (4 yr) T (21 months) JD (4 yr) S (3 yr) M (22 months) D (5yr)

So yes those ages again are 5, 4, 4, 3, 22 months, 21 months, and 5 months - you can IMAGINE our trip in DC.... :o)

Look out world!

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

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

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

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

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

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

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

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

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

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

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!

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!

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

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!!

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!!

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?

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....