Photos of Jenelle's new bath seat

Here is a photo of Jenelle in her new bathseat. No, I usually do not bathe her in her diaper, I was trying to cover her privates!



Here she is being very shy...


And after her bath.

The "is it Friday yet?" update on Jenelle

Well, Jenelle has had a bunch of doctor's appointments this week and it is only Tuesday! Whew! I took Jenelle to the GI doctor on Monday and she has gained a pound since our last visit- yay! Recently, I've noticed that Jenelle is sometimes "choking" on her saliva - sometimes it is so bad I have to use a bulb syringe to help her get it out so she can breath. I asked the doctor if this was a common side effect from the G-Tube and apparently what I'm describing is reflux. Makes sense really - now that Jenelle is being "force fed" (for lack of better words) she is having some issues with the food she is eating. Jenelle's low muscle tone has always made it difficult when she vomits, so really this is why it appears she is choking. So, Jenelle is going back on Zantac (She has never had reflux issues before, but has been on Zantac while she was on ACTH and recently when we thought she had some stomach upset after Keto.) Jenelle also got her new AFOs yesterday (pink again!) I forgot my camera - sorry! Today we saw her Kidney Doctor and her bi-carb level is low again and down to 18. This is not critically low, but she'd prefer it be higher. The doctor is not concerned at this time because Jenelle is so alert, so we will need to re-check the levels in a month or so.

As far as seizures are concerned, we haven't seen a grand mal since 9/15, the day we started Tranxene. We are 12 days seizure free (grand mals) and counting! However, our daycare provider has been telling me about some "weird things" she is seeing that I got to witness first hand today. Jenelle tends to roll her eyes up into her head, is unresponsive and her eyelids flutter for a few seconds (almost as if she were downloading a program in her brain.) Daycare thinks it is a seizure, and unfortunately after witnessing it myself this morning, I must agree. I put in an email to UCLA today and will update you when I hear something more. Because they are not lengthy, I did not feel it was urgent enough to warrant a call to the Neuro.

So, that is about it. The IEP still is not finalized as we still have a few things to work out. Thank you for the continued prayers - I'll keep you posted!

Jenelle's IEP

We had Jenelle's "IEP" (Individualized Education Plan) meeting yesterday with the Tustin Unified School District. The meeting went a little over 3 hours, and there were 15 people in attendance, 8 from the District, and 5 who were in attendance at our invitation (Jenelle's PT, OT, Pre-school Teacher, our Regional Center case worker and our Advocate from the Epilepsy Alliance.) On Thursday I had the opportunity to read Jenelle's Assessment results and tour some different school programs. It was tough, and took me a little over an hour to read the results. A friend commented that, "knowing something in your heart and seeing it in writing are two different things." and that couldn't be more accurate. Overall, Jenelle is more than 75 - 80% delayed in all areas with scattered skills. Most of the IEP was discussing these results and potential goals for Jenelle for the coming year.

Although Brett and I have not signed anything officially, we pretty much have come to an agreement with the District that the best placement for Jenelle is a program at Heideman Elementary in Tustin that is provided by the County of Orange Department of Education. The program is 5 days a week from 9 to 3, with transportation included. This program has all sorts of equipment that can benefit Jenelle including standers, position seats, visual equipment, etc. They also have a full time nurse who is well trained in using Diastat and feeding through the G-Tube. The District wants to add speech therapy and continue Jenelle's physical therapy with her current therapist. There are a couple of things to "fine tune", but other than that we have a good idea of how things will change for Jenelle come October 24. It sounds like Jenelle will be getting lots of intense therapy to work on things like sitting up and using her hands. We will be sad to lose her therapist at Blind Children's, but this will be a great change for Jenelle.

In other news, Jenelle got her bath seat on Monday and has been enjoying her bath now that she can sit safely in the tub. We did not have to travel to UCLA on Thursday like anticipated. She continues to remain seizure free since last Thursday, and Dr. Shields does not want to see her as long as she remains stable. I also got the call late Friday that Jenelle's new AFOs are in, and we'll be picking them up on Tuesday.

Thanks for the continued prayers. I'll keep you posted!

The hard truth about the mentally retarded...

Sometimes you just need a good cry especially when the hard truth is in writing and is staring you in the face. It just took me an hour to finish reading Jenelle's Assessment report from the District. While I am used to hearing terms like "Skill Level is at a 0 to 4 month level", it is not easy to read. Physically on the surface, Jenelle does not look mentally retarded. However on paper, she is the exact description of a mentally retarded child. Again, this is no surprise, but never easy to hear. So I had a good cry, and now I can move on. Sometimes I regain my strength from days like this.

I toured a county program this morning, and the one offered by our school district. At the county program, the kids looked like what you would expect; they were in wheel chairs, they wore AFOs, they had G-Tubes and Tracheas and they "looked" mentally retarded. But they were happy, and they were functioning, they were communicating and they were learning. After seeing the County facility, I went to observe the District's special needs pre-school program. While the facility was equally as nice, I actually had to ask which kids were the "special needs" kids because they were walking, talking, playing and actively aware of their learning environment. I did observe one autistic child throw a tantrum, and shamefully told myself to be thankful we did not have similar issues with Jenelle. A horrible thought, I know. But, the choice is crystal clear, Jenelle is not ready for the district's program, and would get the most benefit out of the county program. She may not look it, but she is mentally retarded for all intensive purposes. Sure, it's not easy to accept, but in reality this is the best place for her to go.

Tomorrow is Jenelle's IEP, and I'm told the District is going to recommend she continue all of her therapies (basically everything.) It doesn't look like it will be much of a fight. We can only hope it goes this well. I'll keep you posted.

5 Days Seizure Free... and counting!

Just wanted to send a quick update to let everyone know that Jenelle went all weekend without a seizure! So we are now "5 days seizure free" and counting (and knocking on all the wood I can find as I type this!) This could mean that the new seizure med is helping, and that in fact the "new stuff" is seizures.

We are tentatively supposed to see Dr. Shields on Thursday, and Jenelle's IEP with the School District is on for Friday - so far 14 people are scheduled to attend, is that some kind of record? :)

Also, please keep in your prayers Jenelle's friend Sierra who had a VNS implanted today at CHOC, and Jenelle's friend Eli, who is having brain surgery at UCLA on Thursday to help stop his seizures. Jenelle's friend Serena is scheduled for surgery at UCLA as well - I just can't remember the date. These families are amazing and strong and could use some good news seizure wise for a change! Thanks for the continued prayers for Jenelle - I'll keep you posted!

Friday update on Jenelle

Just wanted to send a brief update so everyone can "breathe easier" over the weekend about Jenelle, and also asking for some extra good thoughts and prayers to get us through the weekend. Jenelle had more seizures Thursday morning, and I was on the phone most of the morning with UCLA trying to determine our next step. Dr. Shields is very concerned with these "new" seizures because they are different than what we usually see with Jenelle. We are also seeing some "old" seizures as well, so that is troubling.

Some of Jenelle's "new" seizures have "new" characteristics than we usually see like involuntary twitching and at times "tremor" like movements (like what you see in someone with Parkinson's.) Dr. Shields is not sure if these are seizures or simply something behavioral. He added a new drug (for Jenelle) last night called Tranxene and said it if stops the movements, then they are most likely seizures. He wants to see Jenelle next Thursday and get another EEG. If she has another lengthy seizure between now and next Thursday, Dr. Shields plans to admit her to UCLA Medical Center on an emergency basis for observation so he can get an EEG and MRI done quicker.

Since taking her new medication last night, Jenelle seems to be doing well. When I picked up the drug at the pharmacy, it said it was used to treat "alcohol withdrawals" as well as anxiety and seizures. Those descriptions always make me laugh! The good news is that I haven't had any calls from daycare today, so that is usually a good thing. We're just going to try to keep our fingers crossed and see if we can make it to Thursday without needing hospitalization.

I'll keep you posted - thanks for the continued and extra prayers for the weekend!

Some photos...

Jack woke up the other morning and asked if he could get in bed with Jenelle to wake her up. This was the result! Adorable!

Here is Jenelle getting "casted" for her new AFOs. They literally put her feet in casts to get a mold. Interesting process.

After I took the photo above, I looked at Jenelle and said, "Say Cheese" - she was obviously looking right into the camera, and maybe understood!

Jack's first bike - moments before his first crash!