Friday, March 14, 2008

Spring Day! and Good News!

First, the Spring Day photos:

This is a toy Grandma Y let Jay borrow, he really likes it!My boys enjoying the first nice spring day outside

Can you tell he is going to get into a LOT of trouble this summer?

Dillon likes to soak up the sun!

We went for a walk after this picture. I held Jay and pushed Dillon in his wheelchair. I can't believe little Jay actually gets heavy :-)
Now for some good news: Yesterday, unbeknown to my GramaMa we had a doctor appointment. Well, she was praying that God would let Dillon do something that day very specific to encourage me...little did she know God answered her prayers! Here's how it started....
Mrs Y was at my house at 6 AM, the nurse helped us load Dillon and all his stuff intot he car. We woke Jay up, fed him a little and all piled into the van. JayDonn fell right back asleep and Dillon did not beep once the whole way to CHOP. We arrived early enough for me to get some breakfast (I won't tell everyone that Mrs Y told me she wanted to eat on the way so I didn't eat anything and then in van told me she already ate! heehee) If we left any later we would be late so we have to leave very early. At the appointment I had to write down all the medicines Dillon is on. Here is what I wrote "Shiff's multi vitamin, 10ml, 1xday". The pulmonologist came into the room to see Dillon on his belly lifting up all the way on his hands with his arms fully extended. His first words to me were "What have you been feeding him?!" I said, "It isn't what I am feeding him...look at the med sheet!" He was amazed that Dillon is not on medicine, and he thought it was great! Then after talking for a while he came back into the room with the other doctor (who has never seen Dillon). This time Dillon was on his forearms with his head all the way up and "looking" around. He was amazed. This time he said "I don't know what you are doing, but it is working! Keep doing it!" I responded by saying, "You wanna know a secret? I am masking him!!" You see this doctor did not want to help me learn how to mask so I did research myself and have started that. They then wanted to know what I was doing, how, how long, how many times a day, etc. But the bottom line is that he saw HUGE improvements and had to admit that my program is working! I LOVE IT!! God is so good! He then turned to the other doctor and said "You don't understand when I met Dillon several months ago he was...." and I jumped in with "a rag doll?" He said he would have used the word "hypo tonic not rag doll, but yes" Like I told him, if he would have said "rag doll" he would be insensitive, but I am Mom I can get a way with it and it IS the best way to describe how Dillon was. The doctors do not want to conduct another sleep study after all. They believe that since his outer muscles are getting stronger than his inner muscles should be too.

More good news: I had to call the neurologist today and tell him that I took Dillon off his seizure drug so the nurses can get an order for it. When I told him, he was thrilled for Dillon!! He told me that it proves that we know what is best for Dillon and that "I don't even need to see him anymore." WOW! Do you know the rarity of a neurologist saying a child with CP doesn't need to be seen??!?!?!?! He said he still will follow him and will help me on the phone whenever I need it, but since Dillon's seizures are more under control now then on the medicine and that he is starting to make some developmental progress, he is doing great. I was thrilled!

Two prayer request: 1. A friend's very pre-term baby came home from the NICU this week but had to be readmitted today for some breathing trouble. Please pray for Dad, Mom, and baby girl. She is one that is so faithful in praying for and asking about Dillon and a very good friend. Thank you!
2. I was told of a mom who has a 6 year old healthy child and a 5 year old severely disabled child. Her husband took his own life on Feb 25. They live somewhere in or near Philly. She was a stay at home mom (so NO income now to buy food, heat, electric or housing) and must figure out how to provide for her children. I don't think she has family near by. PLEASE pray for her, I am hoping she will visit my blog...and if she does I want her to know how many people will say they are praying for her - so if you are going to pray will you write a comment and tell me/her. Thank you!


Anonymous said...

Just a note to let you know we are praying for this Mom and her two children. Lord willing, we hope to see you all in person in a few days. With love and prayers,Dad, Mom, and Hannah from WV

Dear Abbi said...

Awww, your little men look like they enjoyed the sun!

We will pray for the mother that you mentioned. And for K&C, of course.

Anonymous said...

That is exciting progress! And always an encouragement to have a doctor acknowledge the progress. :-)
We are still praying!

Anne said...

You're right... Jay will definitely be getting into things this summer;o).

That was GREAT news about Dillon! What a mighty God we serve!

Anonymous said...

Dear Tiffany,

It is so encouraging to read about Dillon. I am jumping for joy in my heart right now. Dillon has come such a long way, and his doctors are baffled. I hope that they look at this program you are doing and give it a shot with their other patients. Dillon just blows me away with how far he has come...and it's because his Mommy never gave up on him. You are an inspiration Tiffany.

Love Kara