Jenelle had her IFSP (Individual Family Service Plan) meeting with Regional Center last week (a bi-annual meeting to discuss services and progress) and there is not much new to report. Jenelle's Physical Therapist and Therapists at the Blind Children's Learning Center all submitted evaluations and Jenelle is still at a developmental level of a 3 - 4 month old. She has scattered skills that reach even to the 18 months mark (like waving, etc.) but according to the "charts" you have to master all the qualifications of a certain level before you move up a level. It used to depress me to hear all the things she "couldn't" do, but somehow over time you learn to see her accomplishments in a different way, rather than on the charts. Jenelle is spending 2 half days a week at Blind Children's and we are hoping to increase it to 3 half days by January. I spoke with her teachers after they submitted her evaluation, and we all agree she would benefit from the extra therapy.
Jenelle is still having daily seizures, including some long ones that last many minutes. I spoke to Dr. Shields today about this and we decided to keep her on Lamictal, and take her off Vigabatrin. This wean will take 3 weeks. It seems all 3 of her medications aren't working and we certainly can't put her on a 4th medication. It is frustrating to see her seizing while on 3 medications, but I realize the importance of taking things one step at a time. She is somewhat stable on the Lamictal and at least she isn't having grand mals as frequently as before, so we'll take this time to get her off the other medications that aren't working before we move onto a new one.
As far as my dealings with the HMO appeal are concerned - I got a call last Friday wherein they "approved" Jenelle to see Dr. Shields at UCLA about UCLA's Ketogenic program! (sense my sarcasm?) I then informed the woman that Jenelle was already under the treatment of Dr. Shields, and that we'd been on their waiting list for over a year now, and that their program was closed to new patients. She then assured me that she would look into the program in Pasadena. I haven't heard anything since. As for the Metabolic and Mitochondrial Specialist at UCSD (whom I had voluntarily given up on seeing) - they called me yesterday to see if I'd be interested in having Dr. Haas review Jenelle's medical records. If upon review the doctor wants to see Jenelle, we can make arrangements for a "one time" appointment for a $160.00 "deposit." At the appointment, the doctor would evaluate Jenelle and would make written recommendations for tests that we could give to our Pediatrician to be done through her office (thus through our HMO!) I sent copies of her records last night and will check on them in a few weeks. In addition, I decided to file an appeal for UCSD as well - it can't hurt at this point!
And finally, Jenelle said the words I've been longing to hear all of her life… "mum….muh!" When she first said it, I was on the phone with my sister so she got to verify that indeed we heard the words correctly! She said it four times in a row, and once again the following morning, and again two nights ago in front of Brett. I honestly don't think she has made the connection that I am "mum muh" or that she is saying it with any meaningful purpose towards me, but it is a wonderful sound none the less. :) Now we need to work on "Daddy!" Also last Wednesday, her teacher informed me that Jenelle sat up in a "side sitting" position unassisted for 20 seconds! This is great improvement - Let's hope this strength continues so that she can sit up by Christmas!
Have a Happy Thanksgiving and thank you for the continued prayers! I'll keep you posted!