Friday, October 17, 2008

How's Emily?

Emily had her fasting test for hypoglycemia last week. She, of course, tolerated it like an angel. She's not one to fuss over being hungry, but still, she went 9 hours with no food! After 9 hours, her blood sugar had dropped just below 50, and her ketones increased to 2.6. At that point they took about 10 vials of blood for testing, stopped the fast, started her feeding again, and gave her some sugar water. We stayed overnight and were discharged on Thursday afternoon. We are continuing her 24 hour feeds for now and will get some results at her follow up appointment in November.

We are slowly increasing her Zonegran dose and trying B6 vitamin. She has responded tremendously to the Zonegran!! She has been having spasms about every other day now and the last few times were very mild, just a few small jerks. She has also been doing much more physically. The most amazing thing is that she is now rolling on to her side!! Both sides! She is also holding her head a bit when being supported in a sitting position. She is tolerating more time in her KidKart and rocker chair. She has also been looking/following objects more, especially using the light box. But she also enjoys watching her mobile and the pumpkin reflector necklace I hung on her crib.

This video is from last week and it just shows how much more she is vocalizing lately. While on the Vigabatrin, she stopped making sounds altogether so it is like music to hear these noises again!. Lots of smiles and laughing too! (You can hear Brenna a few times, but it's mostly Em!)


Anonymous said...

Oh, Emily we are so happy for you! We love you so much! It was a joy to hear you laughing and see your smile when your big brother Drew was spinning the lightbox.

Keep up the good work little one! We are praying for you.

Love, MeMe and PePe

Mandie said...

She is simply an amazing child! I know you all must be so excited. I hope she keeps up the good progress. God Bless you!!!

Reagan Leigh said...

That is SO awesome!! I'm so glad to see Emily finally getting some relief from those seizures!! I know how it is to feel like they are just never going to get better. Seizures (and more specifically infantile spasms)are a horrible thing for a child to have to deal with. Reagan likes that same twirly thing on her light box. She'll reach out and stop it with her hand, which is huge for her! Hang in there...things finally look like they are on the upswing for little Emily!

KRISTA said...

Hi Aimee--It was music to my ears too! Emily really seemed to enjoy the interaction too! It was the first time that I think I've seen her on video. She does look like Brenna & Carter--it was the first time that I've noticed that as well! So wonderful to hear she tolerated the fasting too! What ap precious family you have!

Nancy, Jeff, Connor & Porter said...

What a trooper Emily is!! I hope that she continues to show some improvement on the new med. I'm sure it is so wonderful to hear her little voice and to see her responding more to the world around her!

Heather said...

Yay for Emily! What a sweet sweet voice! So glad she's having improvement with her meds.

Nicole said...

Go Emmy...Go Emmy...Go Emmy! What a beautiful laugh! We're so thrilled to hear her beautiful voice and to see her light up with joy.

Love, Aunt Nicole, Uncle Joe & Sierra

Anonymous said...

What a sweet smile!!
jobie and marley

Kim said...

I had to comment and say that Emily's voice sounds exactly like Julia's! By the way her head shape is looking terrific, the helmet must have really done it's job!

(momamia2007 from BBC)