Thursday, November 13, 2008

Big changes this week

We have had a lot of changes come about this week. Matthew first- He had a pretty big cluster of seizures on Sunday while I was at work; so I had Steve bring him to the ER since I was working. He met me at work and we decided it was best to take him to the ER in Lincoln vs. Childrens. We figured they would just transfer us to Childrens', but the neurologist in Omaha didn't want to have us come up to Omaha. He said he couldn't do anything different for us than we could do at home. We also asked why we weren't starting ACTH, the most common drug used to treat infantile spasms. He was not very nice to us and told us that since he already had "problems" it wasn't worth trying to be that aggressive. OH, did that upset me! So Monday I spent the day on the phone, crying mostly. I talked with Matthew's pediatrician and she wants us to go to the St. Paul Epilepsy Clinic in Minnesota to get further (better) treatment. I did call the neurologist office on last Friday and Monday. I didn't get any call back on Friday and Monday I was only able to speak to the nurse. Tuesday, however, I was able to speak to Matthew's pediatrician again and she said that we couldn't get to Minnesota until the end of November or beginning of December. We were a little bummed. We just don't feel we can stand back and watch him have these spasms. From what we understand, as long as he is having these spasms, brain damage is occuring. So, to me, it feels of the utmost importance to get these stopped. But his pedi suggested we both call the neurologist in the morning and get some answers. Wednesday both of us called in the morning and guess what, I got a call from the neurologist HERSELF on Wednesday. Finally!!!! We talked at length and she answered a lot of my questions. First off, she took Matthew off the medication she started him on on Thursday because one of the side effects is anorexia and he had it, BIG TIME. He was barely eating and we still had to triple the medication. So we're going to option B; which is Klonopin. She said we should notice a difference by Monday. We're hoping! I also asked her why not ACTH. She said that in her experience, if you already have a brain malformation (which Matthew does, he has hydrocephalus, and an a thin corpus collosum) that ACTH usually doesn't work and it comes with a high list of scary side-effects. Now she was very okay with us going to Minnesota and getting a second opinion. In the mean time we're going to try different medications to cure them. So right now we're in the process of getting him seen in Minnesota. Whew!

Next; the other kids. With Matthew's health getting even MORE complicated and leaving me less time to teach the other kids, some of our very generous church family donated enough money for both of our children to attend our local church school. Now talk about humbling. It's something we would've never even thought to ask for, but God must've impressed someone that we needed this. I didn't even know we needed this. It was a very hard, tearful decision for me (it wasn't that hard for Steve) but we decided that it would be best to take advantage of this very gracious act. So, very quickly, my kids were enrolled. They started Tuesday. I think I spent most of Monday in tears. It was just such a overwhelming 4 days. I was sad, humbled, and relieved all in one emotion.
Micah and Megan LOVE school so far. It's been a bit of an adjustment, but they are doing well. The teachers have been very gracious to the kids. It really helps that they know some of the kids from church. Mason, Matthew and I are home everyday. I'm not Mason knows what to think yet with his brother and sister gone all day.

Wow, what a week. On top of everything I just told you about, we had OT (occupational therapy) Tuesday and Wednesday. Tonight Matthew and I are taking our second of three infant massage therapy class. Tomorrow we see Matthew's orthopedic doctor. The good news is, I don't have to work this weekend. I haven't had a weekend completely off since the middle of October. That will be nice! I'm looking forward to a restful weekend.


Kristen said...

I hope this weekend is restful for you. So much is happening and all at once. I understand how scary it feels when it seems everything is spinning out of control. I'm praying you can rest assure that God is watching over you all.

Lots of *hugs* and prayers!!

Keesler Chaos said...

We're going to miss all of you on Fridays! I will miss cuddling little Matthew, and Mac will miss Mason. We are praying this transition goes smoothly!