Wednesday we had a follow up appointment with Jenelle's G.I. Doctor. Jenelle now weighs in at 30 pounds, and is 39 inches tall! She's grown 3 inches since January! She is at the 25 percentile on the weight chart, and 75th percentile for height. All good news considering this time last year she wasn't even on the chart for weight. I talked a lot with the doctor about Jenelle's eating. I just can't get her to eat by mouth for me, and school reports good and bad days eating by mouth, but not enough food by mouth to sustain her nutrition intake. Thank God for the G-Tube - because of it she is thriving and progressing. Dr. Idries wants another swallow study and said if it appears that Jenelle is still aspirating and having swallow problems, she may want to prescribe more feeding therapy.
The doctor asked why I was so worried with Jenelle not eating by mouth. At this point with Jenelle not progressing much with her OT, it is very likely that she will be G-Tube dependent for the rest of her life, thus living only on formula. While it is now less stressful to feed her because of the G-tube, I explained that for quality of life reasons it would be nice if she could enjoy the taste of different foods and maybe learn to drink from a straw. The doctor agreed, which is why we are doing another swallow study and why she may push for more feeding therapy. Jenelle has been progressing so wonderfully lately, I've been telling friends that I'm actually looking forward to her next IEP, which isn't until August. Now that she has mastered sitting up and moving, next year we should work on eating and speech. I can tell she tries to talk sometimes, maybe someday we will actually get a real word out of her.
And finally we are completely off Topamax! I'm hoping that this will help her metabolic acidosis and help her progress more. We are seeing an increase in seizures, but I've held off in calling UCLA to see if the increased seizures would dissipate over time. So far, that has been the case and we are seeing less the longer she is off Topamax. Keep your fingers crossed for us!
Don't forget the 2006 Freedom Walk is coming! We are so excited to see the donations coming in, and I greatly appreciate the checks I've received in the mail! We have such a wonderful support group and we appreciate you all so much! If you haven't checked it out, click here to check out our team page, where you can make an on-line donation or join our team! I've noticed that during the day, it takes a while for the page to load on your web browser - so be patient. Or you can always access the Freedom Walk page at www.epilepsyalliance.org and do a search for Jenelle. Thanks again for your support!
That is all for now - I'll continue to keep you posted!