Wednesday, December 16, 2009

The good with the bad.....

Some days seem so good and almost easy, I forget that for a second about our challenges. Other days are so hard that I can not stop thinking about the hard plate that Bubba has been dealt. Every once in a while I experience both things in one day. Monday was one of those days.
It started out great! After school we went with Nana to Disney Land for FHE. Things were GREAT!
We enjoyed the Christmas decorations and....

we rode some of our favorite rides.
Align Center
Collin was in awe of Christmas time Small World.

Regan and Nana fought over popcorn!

Nana went with Collin and I on Big Thunder Mountain for the first time.
I LOVE this picture because you can see pure joy on BOTH of their faces!!
Nana was so happy to see him so happy! :)
Collin LOVES roller coaster!!!
Regan found a REAL reindeer!!

We didn't stay long, it was a school night. We had a BLAST!!! Then on the way home Collin started making noises. I looked back and before Nana even knew what had happened I jumped over my seat and held his sweet little head as he vomited and seized. Collin had seizures until I gave him an injection when we got home. It is hard to think that this HAPPY little boy could so quickly be over taken with pain. That is one of the hardest parts of TTD. Most days are good days that we are "waiting" to turn bad. We just don't ever know how each day will turn.

I took Collin into the doctor on Tuesday. I LOVE his neurologist!! She is one very caring woman. Collin's seizures and pain are getting out of control. So, we decided to start him on a new treatment plan. Two new medications. One for the pain and one for the seizures. I left her office excited and feeling hopeful. Collin still wasn't feeling well so we spent the rest of the morning just the two of us.

This morning I gave Collin his first dose of one of his new medications. (I have to give them to him two weeks apart so that if he has a bad reaction, we know which one is causing it.) Today was his seizure med. I gave it to him with his other morning medications just as the doctor told me to. He seemed to be doing good. So, I went ahead and took him to school. I was at the kids school helping the principle in her office when Collin's teacher came running in to tell me that something was wrong with Collin. I hurried down and got my baby. It seems as though he was having a hard time with the new medication. He was out of it and when they went to put him in his stander he went limp and his eyes rolled around in his head. I took him home so that I could monitor him. I am afraid that it might have affected his blood pressure. This is the hard part about new medications..... you never know how they will effect him. He HATED the way he felt today. He was not a happy boy. It broke my heart.

I am going to give him a break from the new medications and let him finish this week at school. Then when he is home for the next two weeks we will start again and see how things go. Here is to better days! He has sure earned them. Please keep him in your prayers as we start this new treatment plan.


arroyo fam said...

all of you will be in our prayers for sure! Yesterday was funny. Lanie was eating lunch and out of the blue started talking about Collin. she insisted that Collin was home hanging out with you and she wanted him to come over. I kept telling her he was at school all day but she kept saying, "No, Bubba's at home!" So she needs to get a Bubba fix sometime soon. = )

KraftyKy said...

I don't like using the word "hate" but I just hate knowing what your sweet family has to endure on a daily basis. No child should go through what Collin has to. It must be so frustrating. I will keep all of you in my prayers. I pray that you find the right medications to keep Collin as comfortable as possible without any more nasty side effects.

I hope the kids have an awesome Christmas break. Merry Christmas!

zuniga family said...

Julie, I don't know how you do it! You are one amazing mother and no matter how bad your days get, it seems like you are still upbeat and positive! I admire you!

And don't even get me started on that sweet little boy of yours! WOW! What an amazing example of smiling through the tough times and even forgetting those tough times!

And your daughter, she is just the cutest, sassiest thing I have ever seen! She is so photogenic!

Kristi said...

You know, sometimes it is so hard for me to understand why people, especially children, have the trials they have. My heart breaks for little Collin. For you guys too! I know that you are some special people because there are not many people that could handle your trials! You guys are in my prayers!

Katie said...

Julie, you guys are always in our prayers no matter what. We will definitely pray for Collin as he starts his new meds. love you! PS-that close-up pic of his face on Big Thunder is priceless!