Miss Jennah is 5 years old!

First, I’d like to thank all of my readers for your friendship and continued support. We have several new friends who have started following our blog and many have requested an update on our little Miss Jennah. I haven’t blogged in nearly 5 months, which is kind of a good thing, because it means I haven’t been totally depressed or had much to complain about! But I do apologize to those of you who have long awaited an update.

A lot has happened since spring! Jennah finally returned to preschool after her brief sabbatical, just in time for graduation. Of course, she had a meltdown during the ceremony and we had to leave early … pretty much sums up her entire school year! Nonetheless, we will greatly miss her teachers, assistants, and therapist at Phantom Lake Elementary. They were all extremely supportive and put up with Jennah’s bad attitude on a daily basis. Our preschool experience was invaluable and I feel so blessed that we were able to come back to the U.S. and provide Jennah with these opportunities.

We started the summer off with the Northwest Run/Walk for Epilepsy. With the support of some really great friends and Snoqualmie Springs School, we were 2nd highest non-hospital team in Seattle raising over $2200 for Epilepsy Foundation Northwest!

We spent the summer at home as all anticipated travel plans were cancelled after our hospital stay in March. We wanted to allow Jennah to stabilize while we made medication adjustments and introduced a new medication, Baclofen, for spasticity management. Spasticity is basically her super-tight muscle tone, especially in the lower extremities. We want to treat this to avoid the severity of the impending scoliosis that is already occurring, and also to avoid deforming her bionic hips that were reconstructed only last year. It was a busy, but very fun summer, as we entertained friends and family from Dubai, Thailand, Texas and California! Jennah did have an increase in seizures with the summer heat, but overall, we were very successful in getting a good balance in her meds and have seen some noticeable improvements in her muscle tone.

Jennah celebrated her 5th birthday on August 1! I am so proud of our Little Miss Jennah … she has endured so much in 5 years: a complicated birth followed by 18 days in the NICU; 2 CT scans; 3 MRIs; at least 20 x-rays; approximately 10 EEGs, 6 of which were 24-hr monitored stays in the hospital; a VEP confirming her CVI; 2 swallow studies; a g-tube placement (3 days inpatient); two emergency room visits, both resulting in hospital stays; a 3-day ICU stay complete with intubation and central line placement following a grand mal/status epilepticus episode; a 14-day stay including a PICC line placement; a bilateral hip reconstruction (3 days inpatient) with 6 weeks in a full-body spica cast and 6 months recovery; and countless other pokes, tests, assessments and clinic/doctor visits. With all this, I count our blessings that this is all that we have had to endure. There are many others who have to go through so much more, those who have to use that CAP badge at Seattle Children’s much more than we do.

I am happy. Truly happy and feeling so truly blessed for how well Jennah is doing and for all that we have. As always, I am so thankful for my friends, family, and all those who support us and pray for us. Now it is my turn to return the support and prayers to a dear friend who is in surgery as I type. Also, to the moms of other children with special needs who I know are not doing as well right now … God bless you and give you all strength. Have faith. xo

Preschool Drop-out

… at least for the time being. Taking Jennah to preschool was the one most stressful events of each day and it’s only gotten worse. On the day of my last post, “Defeated”, I took Jennah to school and stayed with her the whole time as it’s now required that I stay, since there is not a full-time nurse at that school … or transfer to a different school. During circle time, she slept. Then she started seizing. I was already in a dumpy mood and could do nothing more than roll my eyes and think, “really?” I asked the teacher to get the Diastat ready, just in case. She knew exactly where it was kept and even got out a disposable mat; she was calm and well-prepared. This was reassuring. Luckily, her seizure ended in less than a minute, so no further intervention was required. Unfortunately, the seizure pretty much knocked her out for the rest of the day, so she slept through her therapy session and the rest of the school day. Great. We kept trying to go back to school, but she just sleeps the whole time. If she’s not sleeping, she’s screaming because she wants to sleep. If she’s not screaming, some other child in the class is screaming, which makes Jennah start screaming. It’s madness and completely unproductive. We take her to school for the social interaction and therapy services. But we’ve been accomplishing neither and just distracting her classmates from learning. So unless Jennah starts waking up more, I am not taking her to school.

We have also been seeing an increase in Jennah’s seizure activity. We are still trying to wean off of the phenobarbital, but it’s becoming clear that she needs something to replace its effects. Therefore, we’ve added yet another new medication, Onfi (Clobazam). It’s newly FDA approved and we are lucky that our insurance will cover it. It’s only been a few days since we started this new med (she is also still on the Lamictal [Lamotrigine]), but we haven’t seen any seizures … so fingers-crossed!

On a more positive note, we took the kids to Great Wolf Lodge during Spring Break. Jennah did cry a lot and vomited a few times, but when we got her into the water, she was just thrilled and LOVED it! The girl just loves water … and the obnoxiously loud white-noise of the generator in the waterpark .