We had a busy day with Jenelle yesterday and fortunately it was appointments that kept us busy and not the ER! Our day started out with a trip to the GI Doctor. As I said previously, Jenelle has not gained weight in 15 months, and has not grown in height in almost 12 months. They agreed that a G-tube is necessary. Some of you have asked, so I'll try to describe a G-tube; it is a tube that is inserted directly into her stomach so that food can be provided via a tube, and not by mouth (think Terri Schaivo). The GI Nurse Practioner said she felt we could probably get by with minimal use of the tube for distribution of meds and nutrition in the mornings and evenings, and give "oral" foods during the day when meds are not being given. She didn’t think it would take long to catch Jenelle up on her weight but could not give us an estimate of how long Jenelle would need the tube. That has been my biggest concern because I have been told hat once a child is on a G-tube, it is hard to get them off it. We are now waiting for insurance authorization to set a date for surgery (out patient) but were told Jenelle could have the procedure in the next 10 days. While she is having the surgery for the G-tube, they also want to run a test and biopsy for reflux. This may require a 24 hour stay in the hospital because a probe needs to be inserted into Jenelle's upper GI tract to measure PH readings and look for cell damage from stomach acid, if any. So technical!
Yesterday afternoon we met with Regional Center for Jenelle's bi-annual IFSP (Individual Family Service Plan.) This was actually Jenelle's last IFSP as she will be transitioned to our local school district in October when she turns 3. When that happens, we'll be dealing with the world of "IEP" (Individual Education Plan - those of you in special needs education know what I'm talking about!) We have a new case worker, and from what I'm hearing from other families, we've been very lucky to have had our first case worker for so long. I was very happy with this "new" case worker because she had already prepared contracts to keep all of Jenelle's therapies the same, and was quite open to our request to have Jenelle evaluated for Speech Therapy. Usually Regional Center only pays for a child to get Speech Therapy if the child is at the developmental level of 18 months (which Jenelle is not on paper). However, she agreed that we certainly had reason to request an evaluation because Jenelle has been showing more signs that she understands words and knows people by name. It would be wonderful to get this therapy started prior to her entering the school district in October, so I hope that works out. We will meet again in 3 months to have Jenelle evaluated by the school district, and get that process started.
Jenelle started back to school this week and seems very happy to be back in her old routine. She has been having more bouts of giggling to the delight of her teachers and caregivers. Unfortunately our worst complaint of late is insomnia again! Poor Jenelle can't seem to find a way to get sleep when we put her into bed, so of course, we are sleep deprived as well! I spoke to UCLA today about it and they wanted to check her Dilantin levels, but felt is may be the culprit. Other than that - no complaints as our lives are slowly getting back to normal, whatever that is for the Currans!
We thank you all for the continued prayers and wish you all a wonderful and safe Memorial Day Weekend. Our next appointment is with our Kidney Doctor on June 1 - I'll keep you posted!