Tuesday, June 24, 2008

Pediatric Hematologist AT LAST

Pediatric Hematologist AT LAST is finally this week. We are finally going on Thursday less than 48 hours away.

I know we will not get any more results than what we know already but they will be doing some additional blood tests to try and figure out why Sean's protein levels are low and they said probably some additional testing that we have not done yet.

There are so many I just don't know where they will start. It could be several gene mutations and or it can mean nothing. Having this on my mind for that last couple of months has been very stressful.

Finding out all of this is such a short period of time is very stressful. We found out he suffered an in-utero stroke, closed lip schiz. (where his brain is not connected), told that he has right sided hemiplegia cerebral palsy, told that he has epilepsy and is having complex partial seizures, that he has low protein levels, and oh by the way he will always have to be on the seizure medication.

I know I hope and hope to get answers with each visit we go to but hearing from this doctor for some reason I will feel better. We will see how I feel AFTER we go.

Monday, June 16, 2008

Itchy red bumps

Itchy red bumps, sounds fun right. Our poor little guy has them all over the place. They started on Saturday morning on his little bottom. It started with three and then they multiplied through out the day. They then went to his legs, thighs, hands, arms, mouth, tongue, hips, chin, ears, waist, and genitals.

They are the worst on his bottom and the biggest. I of course did not take pictures of his bottom but here are a few. They don't seem to hurt when we touch them, but he has had a fever 102 or less and has no appetite. We are going to the doc tonight they didn't want us there during busy hours and we have to be seen outside the office all together.

So hopefully we will know what these itchy red bumps are. I think they may be the chicken pox's but I have no clue. Will update later after the doc tonight.

It is impetigo~ and we are now on antibiotics!

Monday, June 9, 2008

Doc follow ups and more


Well we have been super busy and I haven't had an opportunity to post in awhile. So I have a lot to catch up on.

First we went to the pedi neuro for our follow up appointment it went pretty well. We discussed the seizure meds, how he is doing, acting, and about his brain not being connected (closed lip schiz).

The neuro said that Sean will most likely have to be on seizure medications for the rest of his life. Between the stroke, and the closed lip schiz he doesn't see him growing out of the seizures. He said it may happen but in his past history children with both a stroke and the closed lip schiz usually stay on them for life.

He also said that Sean's brain can not reconnect on where it is apart now and that he will monitor him closely. He said unless he has another seizure we can come back in six months for a check up.
Second, we went to the eye doc for Sean. Although his right eye is still weaker and when dilated both of his eyes cross. They are better than they were six months ago. She said if they do not get better within the next 6 months we will need to do both the patch and glasses.

Third, we are waiting to hear from the pedi hemos office on when and who we will be seeing to follow up on Sean's blood work. Both mine, and my parents levels came back normal for protein c and protein s. The pedi neuro thought possibly that it could come from Patrick or he may need more time on getting his levels higher but he is sending us to the pedi hematologist to see what is going on for sure.

Enough about docs right. I feel like most of my posts are about docs, appointments and etc.

Sean, Patrick, and I played outside a lot this week and weekend and Sean loves every minute of it. Every time I hear him laugh, I smile, every time I see him smile, my heart melts, every time I see him do a new thing, I get stronger.