Compared to Daddy

Mom K pulled out her notes from when Josiah was little. She has a lot of them but I am pulling a few things to put in here.

Daddy at 5 months compared to Truett at 4 months:
Daddy: "His hair falling out a lot now in his bath water and when he lies down."
Truett: His hair has fallen out in a line around his head.

Daddy: "He has rolled over a couple of times but is not real good at that yet."
Truett: Rolls all the time now. He made a giant circle around our floor yesterday as he rolled from back to belly to back to belly, etc.

Daddy: "He can sit up with support."
Truett: He is not sitting up at all yet.

Daddy at 3 years compared to JayDonn at 3.25 years:

Daddy: "Josiah has some pretend cats, dogs, birds and a boy he calls his brother Tommy."
JayDonn: Jay had a pretend friend, I can't remember his name. but his friend was around almost a year ago. He was green and had wings, and only came out when the neighbors were making loud noises.

Daddy: "Can make Ezra laugh a lot by pulling on him or half sitting on him but sometimes gets too rough."
JayDonn: All I can say is DITTO! Jay does the same thing to Truett. And he laughs but then Jay will get rough and I have to step in to keep everyone happy.

Daddy: "Usually gets 1-2 reminders a day - often for disobedience and talking sassy."
JayDonn: Well pretty much the same thing! Disobedience and talking sassy are his biggest problems.

Daddy: "Loves to chew gum."
JayDonn: Everyday he asks me if he can have more of Grandma's gum, or anyone else who ever had gum that he knows of. He almost always spits it in the trash rather than swallowing it.

Daddy: "Likes to make up words."
JayDonn: molly-golly-sholly-folly-crawly, etc He rhymes words and totally makes them up. It is so funny!

Daddy: "Shows an independent spirit and often needs rebukes for talking sassy."
JayDonn: I don't think I have ever met a more independent child than Jay. He has told me not to come get him from class, that he "can do it" about everything!!, he has tried to ride his bike by himself to walmart to buy a fish, etc.

Daddy: "Likes to talk."
JayDonn: From the moment he wakes till the moment he falls asleep it is non stop!

Too funny how much my boys are like their Daddy. Mom K didn't remember things like the gum or making up words, but that is exactly what Jay does.

Drugs - I can't stand drugs!

This morning the nurse told my mother in law that Dillon's ketones were at 40. She didn't know if that was good or not but knew that I said to tell me if they were less than 80. I'm glad she remembered to tell me! It is very important! Dillon's ketones should be "large" or 80-100. We check them by a urine strip and it changes color; the darker the purple the better. Mom K tested herself this morning and thought it was between 40-80 based on the shade of purple. I tested this afternoon and thought it was close to 40 as well.

We called the doctor and he said if they go below 40 we have to call, if they are still at 40 tomorrow we have to call, if we see any increased seziure activity we have to take him to the ED (emergency department).

The fear is that when there are less ketones in the brain he is not in full ketosis. This means he could go into a prolong grand mal seizure that could be life threatening. So far there is no increase in his seizures, Praise the Lord!!

One of Dillon's nurses started looking some things up for me since there has been no change in his diet or what we are doing with him besides the new pain medication he is on. She believes the valium may be throwing off the diet. I am not sure yet. But here is some things I am finding that disturb me greatly:

1. These drugs have sedative and anti-anxiety properties as well as being anti-epileptic. They are in fact only fairly week drugs against epilepsy, while their tendency to produce sedation and dependency greatly limit their usefulness. In practice, these drugs should never be used as a first choice, but rather reserved for those situations where epilepsy remains uncontrolled despite treatment with adequate doses of other anti-epileptic drugs. VALIUM (Diazepam, Roche Products Pty Ltd) (Great he is on that one, has been for 2.5 weeks and will be for the next month probably! Good thing we are trying to wean him back on how often he gets it already)
2. These drugs were widely used in the 1950's and 1960's, but are now considered to be obsolete. They are not very effective in suppressing seizures, but they frequently cause slowing of the intellect and depression. Withdrawing these medications can be extremely traumatic, with anxiety, restlessness, tremors, insomnia, and an increased risk of convulsions being prominent as the drug leaves the system. PHENOBARBITONE (various manufacturers) (No he isn't on this one now, but this is the one they put him on a a 12 hour old baby and had him on for months after birth! Love it!)
3. This is about Valium and the keto diet: Tablets 2mg Lactose, Maize starch, Pre-gelatinised starch No quantitative data provided. (meaning there is strach and sugar in it which are normally not good for the diet and may be enough to throw it off!)

Will find more and post more later.... Until then please pray Dillon does not have any complications with his diet and that we can get him back into ketosis! Thank you!

Dillon update

Well on Tuesday we took Dillon to the doctor, and just as I guessed, he has pneumonia. His lungs sounded horrible! The secretions were so thick he couldn't cough it up. At one point, before we took him in, we had him on CPAP with 3 liters of oxygen and he was still holding his oxygen too low. He did cough up a large amount and then started to do better, I think he cleared a plug out of his lungs. He started on an antibiotic and by the next day he was doing much better.

The next day he had his follow up at CHOP for othro. They took new X-ray and said the bones look great. The hips are right where they should be and everything is going good. We have another appointment in a month in which time they will do another X-ray and will probably take the brace off.

We are working on trying to decrease his pain medication a little so he is only on what he needs. He is on Tylenol and Oxicodon at the same time then Diazapam. We were giving one then 3 hours later another. We are now trying to wait four hours in between each med. We let him sit outside one day in his wheelchair for lunch to enjoy the sun and wind. Today Josiah, JayDonn, Truett, Mom K, Dillon and I went on a walk to the park right up the road. We had a picnic and Jay played a little then we walked back. Dillon's heart rate was pretty high by the time we got home and he is resting now. I think he does like to feel the sun and the wind, though.

Last night we (Josiah, Mom K, Truett, and I) met up with some of my extended family who was coming into Lancaster for a Sight and Sound production of Joseph. It was pretty neat. It has been over four years since the last time I went.

Mom K is planning to leave on Tuesday, after being here for 2.5 weeks. We couldn't have done it without her! We have had 3 nights I think since we got home from the hospital without night nurses. The agency is part of the problem. They knew we didn't have a nurse for several days but no one told me so I didn't know to try to find a replacement. Please continue to pray for me as I am finding new nurses and deciding what to do about people who have major communication errors (that is the politically correct way of saying it, but not how I feel like saying it!) I have a new agency starting on Tuesday night and a few new nurses. Hopefully we can all work together to make sure Dillon's care is the top priority!

Jay never ceases to amaze me at all he says, does, his funny faces, etc. Truett is absolutely adorable. He is such a happy and content baby.

Well that should bring you up to date with the happenings around our house. We truly appreciate your prayers for Dillon. He is doing better than I could have imagined! God is good!

Tomorrow

Last night Dillon started on BiPAP and was taken down to CPAP today. Then his oxygen was taken from 2 LMP to 1LMP. They also started food again for him tonight. His heart rate went up a little, but nothing to major. Tomorrow they will probably "sprint" him. This means they will take him off of CPAP and just put him on oxygen for a few minutes at a time to see how he handles everything. They have put a patch behind his ear that is for motion sickness but has the side effect of drying up secretions. It seems to be helping so hopefully he will be ok without CPAP. He HAS to be on his back, which is the worse position for his secretions.

Tomorrow they are also planning to remove his epidural which has been working to keep him numb from the waist down. This was to keep the medication from effecting his lungs (breathing). Tomorrow when they take it out they will probably have to increase the other pain medications - which comes with the risk of depressing his respiration. Please pray he will be able to breathe with enough medication to manage his pain. Please pray for wisdom for Josiah and I in knowing if he is in pain and needs more medicine. The doctors/nurses are being great at asking us how we think he is doing since we know him best. It can be hard to tell with Dillon since he can't tell us and I don't want him to be in any more pain than necessary. I am praying God would give me extra wisdom in knowing exactly what Dillon needs or doesn't need.

Everyone at CHOP has been great so far this time. I took in note cards that explain what is and what is not seizures and so far everyone seems to be listening to us. This is a huge improvement! Please pray they would continue to listen to us - the LAST thing Dillon needs right now is to be drugged to a state of unconsciousness over something that is not a seizure!

The swelling in Dillon's left foot was doing a little better. It was finally warm again today instead of being ice cold. They are checking it every 4 hours with a Doppler to make sure they can hear the pulse in it. The nice thing about the brace over the cast is they have loosened some of the straps right now while he is swollen and they can make it tighter as the swelling decreases.

I am so afraid of the pain he might be in as he wakes up and is taken off more of the pain medicine. It breaks my heart to know he might be in horrible pain - and that I caused it. I handed him over to the doctors to cut his bones in half! But, Josiah keeps reminding me, he was in PAIN before the surgery. Every single day he was hurting and he was bruising himself on his wheelchair from pushing so hard against it. So my biggest prayer is that this will offer him some long term relief. I know the next 6 weeks are going to be hard but it will have been worth it if it helps him to not be in pain afterwards! I know he will probably have to have this surgery one or more times again in the future, but I am going to do everything I can to prolong the next surgery!

Thank you so much for praying for him. I believe he is surpassing everyone expectations due to prayer! God is helping my little man fight. Thank you!

Truett Rolled!

Tonight Mom K, JayDonn, Truett and I went to church then came home. Josiah doesn't have to work tomorrow so he is staying at the hospital with Dillon.

A few days ago Truett rolled a few times from his stomach to his back - which of course is the easier of the rolls. Tonight he rolled from his back to his belly! Several times! He is laying in Dillon's bed and rolling around as he sucks his thumb. Good job Truett! He is about 3.5 months old.

The hourly updates from the surgery

Well I tried to get these in the right order, but they're not. Oh well at least they are all there with the times and everything. I had updated facebook every hour when they gave up updates so I didn't want to lost that information. One thing that wasn't on there, because I wasn't told was Dillon did have a blood transfusion (about 200cc of blood).

Surgery update

Dillon is out of surgery. Will try to update tomorrow. Surgery went from 10:50am untill about 8pm (about 9 hours!). They had to do the most invasive procedures on the left hip. This means they had to do an extra incision and dig out the hip socket and even cut the pelvis bone and use part of the femur bone to change the angle of the pelvis. He is still intubated in the PICU and on a LOT of sedation drugs. he is having a lot of little seizures though. He is such a little fighter - he is still waking up, opening his eyes, lifting his arms in the air, coughing against the breathing tube to clear secretions up and out of the tube, breathing "above" the tube (he is doing the work not the tube) etc. They gave him more sedation drugs to calm him down. Please continue to pray for him.

Will post more tomorrow. Thank you!

Surgery!

Friday Sept 3 Dillon will be in surgery. He has to be at CHOP by 6:15am for a 5-8 hour surgery.
Here is what he is having done:


a. Bilateral femoral osteotomy - this is where they are cutting both femurs, re-angling the bone and putting them back together with large “L” shaped plated and screws
b. Cutting both Iliopsoas tendons
c. Pulling the left hip back into place, if it does not go in on its own they may need to cut additional muscles, dig tissue out of the hip socket and/or cut the pelvis and use part of the femur to re angle the pelvis.
d. Injecting dye into both hip socket to exam the degree of damage
e. Releasing un descended testicles
f. Double hernia repair


I wanted to finish catching up before now but didn't have time with all the pre-op stuff. Ohj well, will play catch up later. Please be praying! He is going to be in a lot of pain and mad that he will be strapped to a brace afterwards for 6 weeks!

Will update tomorrow if possible.

Nursing problems

We have been having a lot of problems with our nurses, I would appreciate prayers in this area. I am having to learn how to be a “manager” and check up on people. I have never held a position like this before so I am totally out of my comfort zone with this. But for Dillon’s sake I have to do it.

I found out a nurse was signing off on giving a medication for months and he didn’t even know where it is in my house! Needless to say I fired him, but as far as I know the agency still hasn’t fired him and told him the reason I fired him was just because I found someone who could work more days. Why didn’t they tell him I fired him because he falsified documents? Why didn’t they report him to the nursing board? Why didn’t they fire him? I don’t understand how they are “upset” at what he did but take no action about it. The medication he wasn’t giving for months was throwing Dillon’s diet off and causing him to have a lot more seizures everyday than he would have been having! This nurse was also told 4 times not to turn the volume of Dillon’s oxygen monitor to the lowest setting. It alarms for a reason, it is loud for a reason. If it is going off you need to hear it, I just don’t understand people….

Another nurse, from another agency, fed Dillon way too early one night and he projectile vomited – I know because I was here and saw it. When I asked her if she fed him early she said yes 9and she fed him in about 10-15 minutes even though I told her it had to be done over 30-45 minutes). When I told her she can’t do that she said “I am an adult too you know. I am not a child.” To which I replied that she needs to read her nursing instructions because they are there for a reason – his protection! The next morning I read her nurses note and it said that she fed him at 12 and gave meds as ordered. She said nothing about feeding him too early and too fast, nothing about the vomiting (which he did aspirate on and I had to give natural antibiotics to clear him up). We reported this to the agency and they did an investigation and she no longer works for them. (At least this agency takes falsify documents seriously!)

Other nurses keep calling off – usually at the last minute. Even when they do call off with a few hours notice we are almost never able to find a replacement. A nurse just today gave one night notice that she is quitting (because she never wanted night shift and the agency knew this – I told them myself – but they still kept her on anyways.) So now, we have 11 nights open for the month of September that we are *trying* to fill.

There have been even more problems though. As I started looking back – no one has been doing range of motion and everything I read about Dillon’s upcoming hip surgery is that it is preventable if people were doing range of motion. He may still have needed it, but not this young. Having it this young ensures he will need to have it one, two or more times in the future. Why aren’t the nurses doing range of motion on an immobile patient? I thought that was standard procedure. I now have it doctor ordered to be done every shift.

The agency thought it was ok to have a nurse who worked all day at another job come to my house that night, knowing that she was then going to work all the next day. I don’t see how that is possible unless you are sleeping somewhere and I don’t want them sleeping while caring for Dillon. He needs them to protect him or he gets eye infections from secretions, struggles to breathe when the CPAP comes out of his nose, gets pneumonia from lack of infection control and cleanliness, etc.

Nurses have not been giving Dillon oral care (I know have that dentists ordered to be done every shift as well), changing supplies, cleaning supplies, etc. His oxygen humidifier has rocks of calcium in it because no one ever cleaned it. That means he is breathing in oxygen that has that built up in the water. I made a HUGE paper (about 3 feet long on the inside of the closet door where his supplies are neatly organized into individual baskets) with when supplies should be changed and people are still looking at the list and deciding what to change and what to ignore. I really don’t know what else I can do other than to clone myself and do it all myself.

I started to interview and orient the nurses myself. Which was going great – I had the best night nurse I have had in a while this way. But she was the one who didn’t want nights and just quit. I am trying to take a more proactive approach to it all. I am now asking them if they completed the cleaning list I have posted beside his bed, if they are checking his ketones, if they changed the supplies, etc in the morning before they leave. I am doing what I can even though it is so hard for me, because Dillon needs me to.

Please pray for me in this area that I would speak with wisdom as I handle different issues that arise. Pleas pray I would know when to keep a nurse and when to fire a nurse. Please pray that God will direct me to ask the right person the right thing if something isn’t being done that should be etc. Please pray we would finally get some nurses who aren’t trying to come here and sleep but that would actually love Dillon and want to take care of him.

Corvettes for Kids

Corvettes for Kids was on August 8, 2010. It was a humbling experience. Corvettes for Kids pick one child each year to be their “spokes child” and this year they chose Dillon. They have a Corvette show with a silent auction, a live auction, food, games, etc all to benefit the kids. This was their 25th year and this year their total raised for all the years went over one million dollars.

These people are all volunteers and do it just because they love helping the children with medical issues get the things that insurance won’t cover. When I pulled up and saw the huge school yard filled with over 200 corvettes, knowing they were there to help DILLON – MY Dillon – it was humbling. God is amazing how he always provides for us by using generous people. People are amazing for giving of their time, energy, and money to help. Friends of ours from church spent time getting companies to donate items for the auction and then they came to the event. I know I keep using this word, but it is the best word for it – humbling. To know our friends, family, and strangers gave of their time to help us…. Thank you.

Thank you to everyone involved in the event!!!

P.S. It worked out that Josiah’s parents and sister were able to come for the weekend. It was the first time Hannah got to see Truett so that was great too.

Our new house

I haven’t updated my blog in a long time! I need to catch up. I am going to do multiple entries so they are organized better. After my birthday, our nurse of 5 days a week for a year and a half had to sudden quit due to medical issues in her family. We miss her a lot!

First things first - our new house. We moved on July 3 and the days following. My parents were still here for it and were a big help. We hired my Dad to paint the outside of our old house to get it ready to go on the market. It looks so much better than it did. The move went well, the unpacking however is slow. We are mostly unpacked now, but there are still things that I don’t know what to do with them. The house has a good size front yard and a fenced in back yard – which is great for Jay! There is a garage that connects to the breezeway and then right into Dillon’s therapy area where we spend most of our day. It has tile floor, which I have a love-hate relationship with. I love that I can clean Dillon’s secretions off of it, but I hate that the moment I sweep and wash the floor there is still stuff there! This room is big enough for his stander, patterning table, incline ramp, mattress, wheelchair, liquid oxygen tank, cupboards with his therapy supplies, a loveseat and his area to lay on the floor. It has a fireplace in it, although I am thinking we won’t be able to use it with his huge liquid oxygen tank in the room.

Then there is a kitchen off of the therapy room, which I am using right now. It is a large eat in kitchen with a door to the back yard. This floor also has a totally awesome bathroom. The previous owners had the bathroom redone by HGTV and it has heated floor, a heated towel rack and water temp that is pre-programmable (which means it will remember Dillon’s temp so no one will make it too hot or too cold). Then down a few steps is where Dillon’s bed, dresser, medical supplies, nurses writing areas, my computer, Jay’s school stuff, and laundry is. Up a few steps from the therapy area is the other kitchen (which I currently don’t use at all) and a formal dining room and living room is then up a few more steps are the three bedrooms and a bathroom. Our bathroom isn’t as cool as Dillon’s, but it is pretty big and we have a nice bathroom set in it which helps off set the blue bath tub and blue tile. :o)

In our back yard is a big fig tree, it produced SO many figs this year and they are delicious! I had never had a fig before now, but they are so good! It is so much fun to walk in your back yard, pick fruit off the tree and eat it!

We are so thankful God provided this new home for us to live in. It is been a huge blessing to us!! Now if only we could sell (or rent) our old house that would be perfect!

upstairs kitchen (the one I am not using yet)

formal dining room

foyer

"Dillon's" kitchen

Dillon's bathroom

Dillon's bathroom

Back yard

Front yard

Happy 3rd Birthday JayDonn!

June 29thwas JayDonn's 3rd birthday! Happy Birthday my Little man! You are so special, smart, sweet, loving, and you bring so much joy to my life. I am so glad God gave you to me. You are a challenge at times, but you also are so amazing at times. Someyimes I tell you that I got you from a funny farm because you are such a little clown. You mimic everything we say or do and even come up with your own sayings. Robin used to tell you "what a child!" so you now tell me "what a woman!" I never knew how smart a 2 year old could be until you. You are also so sweet with Truett. I like when you tell me "Truett is a cutie!" or "I love him." Everytime we pray you have us pray for Truett and Daddy. You do have a sweet heart and I can't wait to see what God is going to do with your life. I love you Jay!

For Jay's birthday my Mom bought things to have a party. We ended up having friends over and their two little boys. We went to a park up the road from our house and had a Thomas the Train party. My parents bought him a Thomas cake and a big number 3 pinata. Jay ate his dinner so fast, he didn't even make a peep. As he was chewing the last bite he started asking if he could have his cake now. After the cake the kids broke open the pinata, well Josiah actually had to break it or it would never of opened. Then all three kids played with the toys from it. It was a good day. It is so much fun to have a 3 year old!

I will have to post pictures and videos some other time, We are SO busy right now moving into our new house!!!! We got the keys on Wednesday and starting moving in the same day. It is going to be a long few days as we move. Thank you Lord for providing this house for us to have a home that is accessable to our whole family.

My 25th Birthday!

June 22 was my 25th birthday. It was a great day! I started it by remembering how just 4 years ago, on my 21st birthday was the first time I really held Dillon. He still had the breathing tube and tons of wires. We were in the NICU, unsure if he was going to live or not. Now, just four years later, Dillon is doing good and I was holding my third baby boy, who is as healthy as can be, on my lap in my home! God is good!

Dillon's nurse brought me a coffee and sticky bun, which made a yummy breakfast! So Robin and Jay sang Happy Birthday to me with a candle in my sticky bun!

That evening, I got to go out on a date with a wonderful man who is very romantic. My sweet husband had arranged a babysitter and when something happened he found another babysitter to watch all three boys! Thank you to the young lady who was brave enough to learn how to care for Dillon and took care of them! She did a wonderful job.



So, Josiah showed up in the evening with 25 red roses for me.

Then we went to a fancy restaurant here in Pottstown that we have been wanting to try, but it is expensive. It was very good. We split everything, including a yummy chocolate dessert. *forgot to get a picture :o(

Then we walked/drove around valley forge park. It is where George Washington was. There are still the old cabins...

And cannons....



The deer must know they are safe here because there were tons of them! This picture, though hard to see, was a Mommy and the smallest fawn I have ever seen! The fawn was still jumping as it tried to walk. It was so cute!

The deer let you walk within 50 feet of them, it was pretty neat!

It was a wonderful evening....and not bad at all considering Josiah only planned this around 2 pm that day! No, it wasn't that he forgot it was that his original plans were canceled! He had originally planned a hot air balloon ride for us!!! But due to the forecast of rain they canceled it. It did rain for just a few minutes but then was a beautiful evening....

Oh well maybe another time we can do the hot air balloon!

Thank you Dear for making my 25th birthday special! I love you!

Father's Day

This year for Father's Day we did a little something for Josiah on Friday instead. We were going to be about 25 minutes away from his work for a doctor appointment. So Jay colored a big sign for Daddy and we taped it to his car so he would find it when he got off work. Here are the pictures...

I don't know why Blogger is flipping this sideways.... but at least you can see it.

Happy Father's Day Josiah! We love you!

Dillon's Getting Glasses!!

Dillon is getting glasses!! Crazy, I know! The doctor today said he definitely can see light (he blinked all four times the doctor put a bright light in his eyes). He said the optic nerve is slightly pale but if he saw the nerve without knowing the child he wouldn't be able to say if the child could see or not. This is good because it means the nerve is not so pale that he would know the child is blind. He said that Dillon is VERY near sighted so much so that if it were me I wouldn't be able to find the bathroom in the morning to get ready. He put a lens to my eye to show me what it would be like if I had Dillon's near sight. I could see a form in front of me but I couldn't make out any details of his face. It was all blurry!

So, he said not to get my hopes up but it is worth a try. He said that it wouldn't be fair to Dillon not to at least try. I am all in favor of this! He said it may not make a difference, but we are going to try. I KNOW Dillon can see better since we got back from China so please please please pray with us that this will help him even more! Vision would open up a HUGE world of communication with Dillon! One of my biggest prayer request going into China was that it would help his vision so we could communicate with him!!!! I am going next week to order the glasses then it should be a week before they come in and my follow up appointment is for July 15 to tell the doctor if we see any change.

I know so many of you joined me in praying for Dillon before China, many even prayed specifically for his vision to improve. It has, but will you continue to pray that these glasses might help a little more so that we might be able to communicate with Dillon? There is nothing I want more than to communicate with my little man for the first time!!

I know he said don't get your hopes up, but it is hard not to. I just have to keep going to the Lord and asking Him to help me with whatever His will is in this situation. I want Dillon to see better, but that may not be what the Lord wants. But I am certainly going to be praying and asking - A LOT!

Truett: Last night he ate at 10:30pm then slept till 4am then I woke him at 8:30am to eat again. Maybe he will sleep that good again tonight...?

Happy 4th Birthday Dillon!

Happy 4th Birthday my Dear Dillon!

It is so hard to believe that it was 4 years ago that my life forever changed. It was four years ago I felt a love for another person like I never imagined and it was four years ago that I felt heart break like I never could have imagined. The last four years have been full! I have learned a lot, I have changed a lot, I have grown a lot. Dillon has given me some of my happiest moments as well as my hardest. He has taught me things I wouldn't have learned any other way. It is another year and another tear for me today. I am so happy, and still so sad. It is hard to see him turn four and not have him running around asking me for cake or to open his presents. It hard to see him and know all he can't do and all that he has to do that no four year old should ever have to go through.
This past year was an amazing year. He went to China! We have seen a little improvement in his eyes and ears. He coos to get me to keep singing to him sometimes. He coos to get a toy sometimes. He has followed a toy with lights a few times. I believe he is more aware of what is going on around him, he know us. He knows more than most give him credit for! I came into the room without making any sound the other day and got right in front of him. He opened his eyes, looked right at me and then cooed! He knew I was there!

This coming year he is facing a major, painful surgery on top of all his normal therapies and struggles. But I am hopeful this coming year will also bring some of our greatest accomplishments with Dillon. We hope to move next month into a home that is more handicap accessible and has a therapy room where we will be able to leave all Dillon's equipment up all the time. Then I am going to pray we can find people to help with his therapy again so we can work with him. (I need one person a day for 3 hours). With the progress the stem cells have helped make in Dillon's brain our therapy, if done on a regular basis, may help him in ways it couldn't before!

Daddy and Mommy bought Dillon 5 little neon tetra fish for his birthday. I have my reasons for why I bought him this even though I am sure most people not understand that gift. Dillon wasn't having a bad day, but just not a good day. So we decided to give him a little tylenol to help any pain he seemed to be in with his legs. We weren't sure we were going to be able to do what we wanted to with him today. But about an hour later he was doing MUCH better so we decided to go ahead with plans...boy am I glad we did! Miss Jessica (one of Dillon's nurses), JayDonn, Truett, and I took Dillon to Monkey Joe's. It is a place with blow up slides. You will see in the pictures below.
I wanted to do something for Dillon's birthday that he could DO. I thought this was the perfect thing! What 4 year old boy doesn't like slides? Dillon seemed to like it. He stayed calm and relaxed, he didn't cough but maybe 2 or 3 times. The only time he had seizures was after I took him down the big slide for the first time. After that he even went down the big slide by himself and was fine. Miss Jess and I are pretty good at reading Dillon and he was enjoying it. We asked him a few times if he wanted to go on the slide and told him to say AHHH if he does and he did! I am so happy we were able to do something with Dillon on his birthday! It makes my Mommy heart so happy! Tonight Jay helped me make some chocolate cupcakes and we sang to Dillon. He was even cooing during our song. Several times tonight I asked him if he wanted me to sing to him and he cooed! Then as soon as I was done he would coo again, so I sang again!

Over all it was a good day with Dillon. I don't know if he knew it was his birthday, but I do know he understood something special was happening with him today. He seemed to enjoy being the center of attention (typical 4 year old!)

Enjoy the pictures and thank you to everyone who wished him a Happy Birthday!

Dillon's accomplishments

I forgot to post this before, but on Monday Dillon did some great things. His vision teacher was here in the morning, around 8:30. We have noticed Dillon does better for the therapist when they come early in the day, and Monday was more proof of that. One time the therapist moved a light toy from mid line to Dillon's right. Although I was lightly holding his head to stabilize it, I did not move it, but he did! He moved his head to the right to follow the toy! He hasn't done that since, but at least there are times when the connections in his brain are working and he is responding to his environment. Then later in the same therapy session he let us put both his hands on a piano toy. He kept his hands open and relaxed and let me push one finger at a time to play music. He occasionally pushed his hands on his own. We asked him if he wanted more, but we got no response. So we said "OK the toy is going away" and took it away and all THREE times when doing this he cooed as soon as we took it away from him!!!

People keep asking me if we have seen improvement since China - well you tell me... I think we are seeing some real improvement. It isn't consistent but it is something!

Dr Appt and Chunky Monkey

Today we had an appointment in Philly for Dillon. This doctor has been with Dillon for around 3 years now, but he is in the army and is leaving this month to go to a military base out west. The appointment went well. They would like to get Dillon in again in the near future for another sleep study to see if he is still needing as much CPAP pressure and/or oxygen. Another thing they suggested is to see if my home care supply provider will get me a clavicle collar. This is the thing they put around your neck if you have been in a car accident. Their thinking is that if Dillon wears this at night it might eliminate the need for CPAP because it would keep his airway open. It is worth a try I think.

While we were waiting for the doctor, I saw a baby scale in our room. I couldn't resist! With clothes and a slightly wet diaper Truett weighs 9lb 13.5 oz! He is 3.5 weeks old and his birth weight was 7lb 2oz! I figure his true weight would have been a little less than 9.5lbs so that means he has gained over 2 pounds already! He is my little chunky monkey!

Videos and Pictures

Truett was smiling for Daddy, I didn't get the smile on picture but this one turned out cute anyways.
Grandma and Grandpa K came for a short visit this weekend because they went to a graduation of someone they know in the area. When they were leaving Grandma was trying to put Truett in her bag!

JayDonn took the book over and sat down to read to his brothers!

Doesn't he look just like the George on his shirt? :o)

This video was taken Monday when Truett was 22 days old. Look at how well he is doing with lifting his head! He like this position much better than flat on his tummy on the floor because he can see things. I like this position better because he lifts his head more since he has a reason to so he is strengthening his neck muscles.

First nap together

JayDonn and Truett are taking their first nap together. Truett is sleeping his first time in his big crib and JayDonn is in his bed across the room. Jay normally sleeps 2.5 hours and they made it the whole time! I had the baby monitor on so I have heard Truett make a few noises, but I don't think it woke Jay up. When Jay did get up he turned off his fan and AC (like he normally does) and came down stairs. He didn't wake Truett or anything. He is such a good boy!

The video is pretty dark and hard to see, but I wasn't about to turn on a light! It is black for the first few second because I started it before I went into the room.