Monday, October 4, 2010

What's new in Matthew's world

  • Going off the diet has been hard on Matthew. While his Gastrointestinal system thanked us greatly, his brain did not. He was having in an upwards of 25-30 seizures a day. We tried a new seizure med, and it didn't touch them; in fact it made them worse. So we're weaning off that and waiting for some lab work to come back to see what the next course will be for Mr. Matthew. Weirdly, around Wednesday, we saw a drastic decrease in seizures, for no apparent reason. We wonder if his body was going through withdrawals, or if they will pick up again, like they were before.
  • Since being off the diet, Matthew has put on over 2 pounds. He is 25 lbs 10 ounces. And I can tell! He is getting HEAVY!
  • Going hand in hand with the stopping of the ketogenic diet; we have been able to take Matthew off 3 medications he was having to take because of side effects of the diet. That is a very welcome thing!
  • Matthew currently has a horrible cold. At first we thought it might be allergies, but now, I've got the sniffles and a sore throat. Bummer.
  • Matthew is finally getting teeth! As of last month, he was only sporting 4 little front teeth, and was breaking through a molar. Today, he has the two on top, 5 on the bottom, 1 molar on top that is poking through and the molar on the bottom. The bad part is the molar on the bottom came in VERY crooked. We now have an appointment to see a special needs dentist in December to talk about his particularly peculiar mouth. He doesn't even seem too extra fussy about it.
  • We are working on oral feeding again. He currently gets 4 "bites" a day. He HATES silverware, but doesn't mind mommies finger too much, so that is what he is using for his utensils. Baby steps, baby steps.
  • Matthew has all of the sudden found his voice again. He is cooing a lot and such a happy guy, even sick with a cold. We went out to a camp out this weekend (more on that later this week) and while singing worship songs around the campfire, Matthew could NOT stop smiling and "singing" along. He absolutely loved it.
  • We have increased his standing time, and braces wearing time. He is currently in his stander 1 hour a day, and in his AFO's (ankle-foot orthotics.."foot braces") 4 hours a day. He doesn't seem to mind one little bit, and we are seeing the benefits of stretching his heel cords in his braces. We can now get his feet almost at a 90 degree angle. {Tight heel cords are one the things that easily happen to children and adults who are not walking or upright}
  • We are in the process of changing home health companies, because our favorite nurse left to go to another company. We found out last week that we too, can change companies and follow her. We are so happy!

6 comments:

Kristen said...

That is a pretty amazing list of positive things. Such a bummer it had to be traded for more seizures. Praying there will be something that can give Matthew all of that minus the seizures. 25-30 a day is a lot!!!!

I'm so happy to read the Soldatke's were able to camp out. Mike and I have been praying for that specifically for your family. God is good!

Diane said...

That picture just made my day and put a smile on my face. Sorry to hear about the increase in seizure and hope the change in meds will help.

Chrissy said...

Hi Soldatke's!

I just love the picture of Matthew with the Fruit Loops shirt!...it was fun getting to "catch up" the other week!...I hope that I can come hang with your little man soon! Hugs & prayers! Chrissy :)

Keeslermom said...

UHG! Fix one thing, watch another drive off a cliff! Glad to hear he's feeling cheerful, and making happy boy noise.

Michelle said...

Thanks for the update :-)

What a wonderful smile that boy has! Hopefully the seizures calm down and stay that way, but the rest is really great news. And I'm really happy that Mommy has been able to sleep in her own bed for such an extended period!

Lisa said...

That picture is fabulous! he is beaming!!

I was in the ER with Elisabeth yesterday and it had me thinking of Matthew and his arm and I was wondering how he is. So thanks for all these updates!

:)