Wednesday, June 30, 2010

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.

Thursday, June 24, 2010

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!

Friday, June 18, 2010

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...?

Wednesday, June 16, 2010

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!

Thursday, June 10, 2010

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!

Wednesday, June 09, 2010

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.

Wednesday, June 02, 2010

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.