Wednesday, February 13, 2013

Dillon's new switch!

 
Part one of two of Dillon's new switches came today! I am so excited to use them! This is not the piece Dillon will normally be touching, this is just to record our voices in to allow him to socially interact! This is all the ideas from the communication clinic at DuPont... THANK YOU!

 
 
This video just touches my Mommy heart! THIS is what DuPont wants for Dillon...ok so they want him to touch the switch without help, but it IS his first night with it! I just LOVE how Truett took to it and is answering him, playing with him, hugging him etc. THIS is social interaction!! Oh, how I PRAY Dillon can learn to socailly ineract with us!!
 
If you remember to please pray that Dillon will be able to learn social interaction I would appreciate it. DuPont's experts say there is no possible pathway for Dillon to make choices to communicate with us. Which is exactly as I expected. But they do believe he MAY be able to learn that touching his switch allows him to interact with us and causes us to ineract with him. If you see Dillon from now on, you should see him with his switch! (Except during preaching at church - he doesn't need to socially interact during the preaching! :-) )
video

Friday, September 21, 2012

Haddie playing piano

Haddie loves to play the piano now that she is just tall enough to reach it...





Here are two videos of her playing too:

This one is with her standing and reaching for the keys

This one is sitting down playing


Hadassah's First Birthday!!

Happy 1st Birthday my Precious Girly Girl!
Sunday the 9th (I am just late on blogging)
 
Hard to bleieve this was a whole year ago! I was so thrilled when I saw God gave me a beautiful little girl! Thank you Lord, it has been a wonderful, crazy year with my girl!
 
 
Happy Birthday Princess!
Haddie's Great Grandma was able to be with us for her birthday. This is the Grandma Haddie is named after. Her middle name "Love" is also Grandma's middle name.
 Hadassah's birthday Party! (Don't know why Blogger likes to flip my pictures)
Her cupcakes that I made. Jay wanted me to do a 3-D crown cake but this was much more in my abilities! ;o)
Dassah and her birthday candle! (her eyes are puffy because she had pink eye that the kids came down with 2 days after being at CHOP for Dillon's procedure)
Mommy and her girl! I love you Hadassah - so much!
The birthday party! Only Haddie was looking back at everyone...
Enjoying her birthday cupcake! I had to shove her fingers in the icing then shove them in her mouth for her first bite, then she had no problem with it. She actually didn't get too messy. She ate all the icing first then I had to show her that the cake was something to eat as well. :o)
Starting to get her sugar high by this point...
Yummy! Starwberry cake with homemade icing.
Definatley on a sugar high! She has never had any where near this much sugar before.
Haddie and her Great Grandma. We had such a good time with you GramMa! We love you, thank you for taking the time to come see us!

 
We had cupcakes after church that night too because Haddie shares a birthday with Mrs. Manney, the Pastor's wife.

She LOVES playing with her Daddy!

This is such a sweet picture! I just love seeing the two of them together!
 
It was a nice first birthday. I want to take her for pictures but was waiting until her eyes cleared up completely.
 
 
Haddie girl, You are an amazing daughter. You have your guardian angels working over time! You have an incredible pain tolerance and an adventurous spirit (bad combination!). You have the most beautiful smile and a quiet little laugh. You make the funniest faces and are so laid back and easy going. You are a peanut, at not even 15 pounds you are nowhere near the bottom of the weight charts! But your personality is way above the chart! I have started telling people that little girls are not made of sugar and spice and everything nice, they are naughty and mischievous! You are more spice than sugar most of the time, but sometimes you can be so sweet! You are starting to learn to hug and burp your babies, but then you just toss them aside to go play trucks and cars! I thank the Lord for giving our family a sweet little girl. You completed our family and are the princess in our family. Your brothers adore you and you them.
Happy birthday my sweet Hadassah Love!


Tuesday, September 04, 2012

Not refluxing!

The GI doc called to tell me that the biopsy results came in and, since I didn't let them put him on reflux drugs like he wanted, he can say Dillon is not refluxing! Praise the Lord! His tissue is not inflamed at all so they know he isn't refluxing. If he were on drugs they wouldn't know if it was due to the drugs or if he really isn't but sine he was drug free they know for sure.

Thursday, August 30, 2012

What we have been up to...

Life happens, fast!

One day I noticed Haddie's finger looked a little swollen, I thought it was one she sucks so I dismissed any further thought. A few days later I looked at it again and realized that it is not a finger she sucks, it was the pointer and she sucks the middle two. So I asked a nurse what she thought and she said she thought I should call the doctor. The next day I got her in and they sent her across the street for X-rays. When the X-ray tech handed me copies of the films and said if you don't hear from your doctor within the next two hours I would call them... I knew it wasn't good. I got home and looked at the X-ray on my computer and did not need a radiologist to tell me it was broken. So as soon as I got the "offical" call I called DuPont Children's hospital. They got her an appointment for two hours later. Josiah came home from work to be with the other kids and Haddie and I went. They park your car for free (which I love!) and we were in, casted and back to the car within 45 minutes.

By the way - my best guess was that when she pulled my iPad down and it hit her head a few days before that it landed on her finger. It wasn't broken in a place where she fell they said something happened. That is my best guess. But she only cried for about 2 minutes


The next day she climbed up the steps for the first time so it didn't slow her down at all!

A few days later we were getting ready to go see family and our night nurse was going with us...until he was in an accident the day we were supposed to leave. Thankfully he was not seriously injured, but unable to go with us. We had a good time seeing many family members.

After coming home Haddie got her cast off, I kind of miss hearing the thud thud of where she was! Dillon was scheduled for a surgical procedure on Tuesday, and well.. it didn't go how I thought it would! He was supposed to get a scope down his throat, biopsy, and an impedience probe placed by GI and then ENT was supposed to look at his ears and possibly place ear tubes. The GI doc (different from my normal one) walked in and asked me if they drugged him because he looked so tired. I said no this is baseline for Dillon. Didn't he read the chart, or talk to my doc enough to know that Dillon is low function?? The ENT doc called out to me in the waiting room and told me if you think of your ear drum as a trampoline, Dillon's was almost flat from the amount of fluid on them so it was good we placed the tubes! then GI came out and told me that they put the scope down and got the biopsy done, but they couldn't get the impedence probe down . This was supposed to stay in him for 24 hours and measure reflux, both acidic and nonacidic to see if he is refluxing formula and/or secretions. The doc then tells me that it is like a piece of wet spaegetti and it was curling because of Dillon's narrow, floppy, obstructed airway! (No joke!) He said we would need IR (radiology) to place it and that it will only take 5 minutes but that we would have to reschedule. I asked him can't they get someone to do it while he is under? They said sorry he is already awake, you will have to reschedule this. By this time I am just shaking my head in amazement. This is CHOP the world's best children's hospital and no one thought ahead enough to know that they might need help to place this flimsy tube in a child like Dillon? And no one can get IR in there for 5 minutes to help out so a medically fragile child doesn't have to go back under another time?

Then in the PACU the nurse put the side of the bed down and caught Dillon's hand - with the IV - under it and hurt him pretty bad. Then, even though he was awake and oxygen and heart rate were good, his body temp was dropping. It went to 95.3 I think. They had to put a warming blanket on him to get it up after a good hour. Thankfully a teenage girl from church was with the the WHOLE time to help with the kids and was such a blessing! I couldn't have done it without her!

My mom kept reminding me that so many people were praying for Dillon and that God must have stepped in and stopped the probe for some reason. The next day Dillon vomited twice. I can count how many times he has vomited since January, and he did it twice in one day! That would have thrown off our probe study horribly! They would have thrown him on drugs and or a J tube for sure, and that isn't even normal for him! Praise the Lord for his intervention even though I couldn't see it at first!!! Next time I know to tell them that he might have those reactions after being under so we will be prepared for them.

The next day we also found a bloody spot on Dillon's scalp.....??? The nurse and I were trying to figure out what they could have done to him in the OR, dropped something on him? His nurse washed his hair really good the night before and didn't find that so it had to have happened in the OR. My mom suggested, and I think she is right, that they tried to place an IV in his head. Since he had at least 5 other marks from attempts I think that is what happened. You would think they would have told me that, though.

I decided to change to DuPont and try their GI, I have nothing but bad experience after bad experience with CHOP's GI so we will try DuPont. I called for a new patient appointment and got in for 2 weeks from now... that is awesome!


So that is a quick run down of what we have been up to. There is little time for blogging with 4 kiddies. I spent literally 4 hours on the phone today for Dillon about different things including trying to find someone willing to fit him for contacts so that he can actually try to use his vision. Wouldn't that be great?!?!

His seizures have also been 10X better yesterday and today. I wonder if the fluid in the ears was causing pain and bringing on worse seizures....? Time will tell....

Thank you to everyone who prayed specifically for the procedure, and to everyone who just remembers to pray in general for us. God hears, and never ceases to amaze me at how He answers our prayers. Even when we don't realize it is an answer to prayer He still cares and helps us!

Friday, July 13, 2012

Chick Fil A

Chick Fil A had their annual day where if you dress head to toe like a cow you get a free meal with dessert! This was our first year doing it but it was a lot of fun so we will plan to do it next year too. Thank you Chick Fil A it was a lot of fun for our family!

JayDonn the cow

Dillon - my big boy cow

Daddy the bull (he made me add horns for him so he could be a bull) and Truett
Family picture
Baby cow sleeping on the way to Chick Fil A

Fourth of July

Haddie's first Fourth of July, she did great. The sounds didn't even seem to bother her. I don't know why the picture turned again... but that's blogger for you.

Some of the pictures I took


Dillon's nurse had her last day with us. She is stopping to have her lil baby soon. We can't wait to meet the lil princess! But we are going to miss Miss Ashlea so much!! She was with us for about one and a half years! We're praying for you and lil Princess Miss Ashlea, your going to be a great Mommy!

Jay's Birthday

Ok - so I'm a little late... two weeks late...but better late than never...

Happy Birthday to my little man who is growing up before my eyes! JayDonn you are a great kid, I love you. This last year was a big year for him. He graduated Kindergarten, is now reading books at 2-4 grade level, started a few days of first grade before his birthday, and the best part is Jay says he was saved this year! I have questioned him over and over again to see if he understands and it seems he does. And considering when I have pointed out his sins from the Bible and he responds so well, I believe he very well could be saved. We did not make a "big deal" because I want him to remember his heart and his decision not everyone making a "big deal" of it. As you can see, it has been a big year!

Jay's presents I got set up the night before...

I also put these streamers on his door the night before so when he woke up he would have a little surprise!


Getting ready to go to Burger King for his birthday lunch

The birthday boy!


We also went to get his K5 graduation pictures taken and then to a little cupcake place. His K5 grad pics are the cutest thing ever! Then later that night Daddy came home from being away all week on a business trip. We had dinner and cake and sang to him. He requested a angel food cake with fruit. I think I have pictures on my iPad so I haven't up laoded them.

Months ago Josiah bought tickets for Jonah since he knew this was a story Jay loves. It was a surprise for him, but they loved it!


After the show we went out to eat and walked around the trains.







I love this picture - how many more years will they walk hand in hand? Cherish the Moments...



Happy Birthday JayDonn!

Monday, July 02, 2012

My 27th Birthday!

For my birthday my Mom send Jay some money to take Mommy out on a date! So the day before my birthday we decided to do it right and really dress up! When I got dressed and came out of my room Truett saw me and said "Mommy! Pretty!!" And started to touch my dress. It was so cute. Daddy stayed home with the other three (or so I thought....) Daddy had Jay come to the front door and ring the bell....








Don't we make a cute couple? :o)


My little Man!

We went to the Cheesecake Factory! (Don't know why blogger flipped my picture again!)


The lady knew we were sharing our lemonade so she brought two straws!

Then we had cheesecake! Yummy! He was so sweet the whole time. He walked holding my hand, opened doors (the ones he could reach anyways!) and whenever he got distracted in the toy store (Cheesecake Factory is in the mall) and let go of my hand he would quickly come back and hold my hand again. It was such a sweet time just the two of us! I think it needs to become a tradition!


Then on my birthday I woke to find some potted plants. When Jay and I asked where/when he got them he finally told us he loaded the 3 kids up and went to the store for them while Jay and I were out at dinner. He is so sweet. That night the kids had an activity at church so we took Dillon and Haddie with us to this fancy little restaurant and had a very nice dinner. Of course the clouds opened up and dropped water on us as we were driving and unloading there so we were soaked, but it was still wonderful. On our way home Josiah stopped and got some ice cream and a a cherry Boston cream cake and they sang to me and we ate out cake. (Sorry the only pics we got were on Josiah's phone so I don't have them to post)

It was a wonderful birthday!