So, Dr. Le Pichon called us back today. He basically said the reason he didn't call was because the results were exactly what he'd told us on Monday. He said there was "marked improvement" from the first EEG to the second. Between the bursts of super high voltage brain activity (that's the problem) he saw normal activity. I guess that's really good news. We're upping the dosage of ACTH again and we'll be back at the neurology clinic for EEG #3 on Tuesday of next week. After that we're supposed to meet with Dr. Le Pichon, so hopefully we'll have more good news to share.
The folks at Johnson County Infant Toddler services came out yesterday. These good people specialize in helping little ones with disabilities maximize their potential. Well, the evaluation went well, and the lady told Jody that Kylie was on par or ahead of the game in her development. So that was good news that she's not already delayed! However, that also means that they won't be back out until we call (because she is delayed or because a doctor gives us some not so good news). We'll hope neither of those happen!
More news to come after our trip back to Children's Mercy on Tuesday.
We can't even begin to thank everyone who has come over to help with the baby, helped with stuff around the house, brought us dinner and most importantly, all of you who have been praying for our family. Thank you.
Team Kylie
Click on the link above to donate to Team Kylie - an annual fundraiser for the LeAnn Britain Infant Development Center at Shawnee Mission Medical Center. Last year, Team Kylie raised $615.
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Click above to visit the Mae Blossoms Facebook page
About Me
- MJStump
- We decided to start this blog when we discovered we would be expecting our first baby. It seemed like a great way to keep track of how things were going until our little princess arrived, and all the memories we would create there after. To our surprise in April 2009, our blog quickly transformed to all the medical happenings with Kylie when she was diagnosed with Infantile Spasms (a rare, and catastrophic form of epilepsy in infants). We have continued to give updates on what a miracle Kylie has become and all the progress she has made. She means more than anything to us, and we love that we are parents to a beautiful and amazing little girl!
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1 comment:
Jody, I am so sorry I didn't return your call... I never check that phone. Plus, my daughter has had influenza B and pneumonia this past week, so craziness! If you didn't find out the medicine thing, all you do is pull the syringe back, pulling in the same amount of air as the medication you are drawing up. Shoot that air into the medication vial, then pull back the syringe to get the medication out. I always alcohol the med vial before touching it with the needle. Really, I feel bad that I didn't get that message earlier. I saw that Kylie is doing better though, that's great! Oh, I resigned from work on Friday... thinking of working at a clinic for the uninsured, less fortunate. I'm still praying for Kylie.
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