Wednesday, September 15, 2010

Terrified

Nothing more, in less than 9 hours we see the neurologist. It isn't even the testing and I am so nervous. I just don't know how I am going to get through this.

Monday, September 13, 2010

Three specialist in one week

Last week we noticed Matt start squinting a lot, with his physical regression this is a pretty big deal. We don't know if the two are related but it they are, they both point to a brain tumor. Very scary!
I called the doctor at midnight the on Wednesday night when we noticed it. (In my defense I did just leave a message and didn't expect them to wake the doctor) Thursday we had an appt to see the doctor. There is actually a new doctor in the practice who we were meeting for the first time that I really liked. She seemed really concerned and sent us for blood work. She said we needed to wait to see the neurologist to get the scans because a neurologist would have a better idea of where to be looking and they want to do as few scans as possible because he has to be sedated.
She sent us to the hospital to get the blood work done so we could get the results sooner.
The blood work came back normal, so that is good. I am still very nervous about the scans. The doctor also referred us to see a ophthalmologist.
So tomorrow we are seeing the ophthalmologist, the Thursday we are finally seeing the neurologist. Then next Monday we are seeing a developmental pediatrician. The developmental pediatrician isn't because of the current issues, we have been on the wait list for a year and it is finally our time to see her, but it will be nice to get her opinion on the current situation.
I am a wreck this week, I can't wait to get past all of this, and I just pray that everything turns out okay.

Tuesday, September 7, 2010

Got this from Michelle.

The Good, The Bad, The Ugly

The Good
Matty - Matty is amazing and I love him so much more every day. He is so cute and loving. I am just so amazed by everything he does. Even when he is being bad, he is just so cute!
Matt's speech is getting so much better, I am amazed, in January he couldn't say 15 worlds and couldn't even point to one body part, and now tonight he said a 4/5 word sentence! So very amazing!
The power is back on, today we had no power for 7 hours, it really sucked and right now I am sitting at a computer, watching tv, with the lights and a/c on.

The Bad
So stressed out about Matt's regression, I am trying to keep busy so time can speed up and hopefully before I know it we will be seeing the nerologist.

The Ugly
Due to the stress in the bad, I haven't been cleaning my house and I have been stress eating. Neither one are very pretty.

Wednesday, September 1, 2010

A New Level of Stress

Last Thursday lingering thoughts joined together and I realized that Matt is regressing physically. The last few weeks I have noticed he has changed physically, I wondered how it was possible with him starting physical therapy, there is no reason he should be regressing. But he is.
He isn't as active as he used to be, he used to run around from the time he woke up to the time he went to sleep, now he sits around about 50% of the time. He even stopped liking the wiggles and I am wondering if it is because he want to get up and dance anymore.
He is have trouble walking, it started in April when he would get tired and now it is all the time. He has actually been casted for braces to try to help his walking.
His balance is getting worse, when he goes to stand up he falls down and when he is walking he falls down a lot.
He doesn't climb the baby gate anymore.
He only climbs the stairs about 70% of the time.
There is more but I want to move on.
On Thursday I called Matt's OT and I asked her what she thought, she told me I should call his doctor so I did. It was about 4:30 when I called and the doctor called me back about 7pm. We talked for a while and he seemed kind of worried and said he would put in a referral to a neurologist. He told me if there was a long wait he would try to get Matt a faster appt but he said it wasn't an emergancy but he did want him to be seen sooner. He even told me if I hadn't heard from the nurse by 12 noon the next day that I should call them.
The next day I called the nurse and she had put the referral in but the normal wait was not until December.
On Monday I got a call from the neurolgist's office and they set an appt for Sept 16... 15 days away now. It seems so long and I am so worried.
I know that there is a good chance it is nothing, I do have faith that everything will be okay, but I still have so much fear that things might not. I fear that it could be something bad, and I am even nervous just about the testing that my son is going to have to go through.
If you are reading this and you are a praying person, please pray for my son and please pray for me as I wait and worry the next two weeks.