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!

The streak comes to an end!

Well, it was great while it lasted! Jenelle's many weeks of being "seizure free" ended yesterday morning with two massive grand mals, back to back both lasting almost 4 minutes. It was quite a scary situation in that her school "almost" had to call 911. Brett dropped her off yesterday morning at school because I had to be in trial in downtown Los Angeles and was traveling with my boss. He called my cell phone as we were almost in downtown L.A. with the news. My boss immediately suggested I take Metro Link back to Orange County, but fortunately it was not necessary.

Unfortunately, yesterday's seizures occurred at the beginning of her usual joint session with her Occupational Therapist and her Physical Therapist that was being observed by a Therapist from the Tustin Unified School District in order to prepare for her upcoming IEP. After timing the seizures, the school contacted Brett and he instructed them not to call 911 unless she had another seizure. Luckily she did not have another seizure and Brett was able to pick her up from school and take her to daycare. As Brett was traveling to pick up Jenelle at school, I was on the phone with the on-call Neurologist at UCLA getting instructions on whether or not to give her emergency Diastat medication. As per UCLA's instructions, Jenelle's daycare provider gave her the Diastat (even though she was not seizing) so that her seizures would not return or "cluster" as they are prone to do. The school refuses to administer her emergency Diastat so this is why it wasn't given during the second seizure. We have known about the school's policy and had not had an incident at school before yesterday.

At the end of the day, we were lucky because if they had called 911, surely this email would be all about Jenelle being admitted to the hospital for observation (and you know how much Brett and I hate being admitted to that place!) Her therapists handled the situation extremely well, and we are very appreciative. UCLA is concerned, and I'm waiting to hear more from her doctor after sending an update email late last night. Jenelle has not had a grand mal since March of this year, and as always, when "old" seizures reappear, we want to know why. As of last night, Jenelle was back to her usual self; rolling around the house, making sounds, laughing and smiling. She seemed pretty good this morning, and I took her to daycare instead of school just to be on the safe side as her daycare provider is very experienced in how to handle her seizures. So far, no calls from daycare today - so I assume all is well.

I spoke at length with her Occupational Therapist last night and she did tell me some wonderful news. When Brett dropped off Jenelle yesterday morning, her OT put Jenelle in a sitting position. As Brett was leaving, the OT said to Jenelle, "Daddy is leaving, let's wave bye bye", and sure enough, Jenelle looked at Brett and waved in her usual way! What a wonderful achievement for her to demonstrate (especially in front of the District) and it seems she really is aware of her surroundings, and really knows her Daddy!

I know I promised photos with my next update, but obviously I didn't have the time or energy to upload them last night, so you'll have to please wait until the next update. I got a call from the Tustin Unified School District and Jenelle's IEP is tentatively scheduled for September 23 - much sooner than I expected! I called my sister last night (who works in Special Education) and asked if she thought it was a bad thing that the District therapist observed Jenelle like this, and she made me feel better by saying it was probably a good thing because "this is who Jenelle is - seizures and all!" This is true - and it seems Jenelle wants the District to know everything little thing about her - the good and the bad! So today is hopefully "day one" of a new stretch of "seizure free" months ahead. And being the superstitious "Seizure Mom" that I am, know that if you don't hear anything its probably a good thing! ;)

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

Jenelle's School District Assessments

We met with the Tustin Unified School District on Friday, and Jenelle began her assessments and evaluations; Physical Therapy, Occupational Therapy, Speech Therapy, the School Nurse and Adaptive PE (not sure what that one is.) She still needs a vision assessment. It was a very long morning, and Jenelle slept well on Friday afternoon. These "assessments" are never easy emotionally because you really get a sense of how far behind your child is developmentally. However, I've been through these enough the "difficult questions" don't phase me as much. I'm well aware of what Jenelle can and can't do, and what she should be doing. Jenelle's abilities are quite scattered, and there does seem to be some slight improvement since she had benefited from seizure control. We are supposed to have our "IEP" in two weeks (Individualized Education Plan - some of you have asked.) Of course Jenelle charmed them all, and they all agreed she was beautiful.

After a long nap, Jenelle was pretty active the rest of Friday night. However, Saturday morning she woke with some congestion and a slight fever. Both Brett and I were sick this week (Brett had Strep Throat and our doctor just sent him home with medicine for me too!) So Jenelle seems to have our cold. She slept a lot on Saturday, and seemed to perk up early Sunday Morning. She is still congested, but doing well.

Last Wednesday, Jenelle was fitted for a new pair of AFOs (Ankle - Foot Orthotics (supports)). The man who casted her legs was the same who did her first pair, and he was quite impressed with her improvement. It is always so encouraging to hear others who haven't seen her as frequently see her improvements.

And in other news, Big Brother Jack got his first bicycle. After it took Brett an hour to put it together, he went next door to show the kids next door. Then 30 minutes later he had his first "crash" when he and our next door neighbor crashed into each other. He was fine but shaken. He is very proud of himself and knows not to ride in the street and to wear sneakers and his helmet. I promise to send photos with my next update.

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

Two Years ago ...

Two years ago we got the call that changed our lives forever. It is a bitter sweet anniversary, and one with lots of significance. It seems almost strange that it was only two years, as the road seems so much longer, but we were fortunate to have almost 10 months of "bliss" thinking Jenelle was just a little delayed, and that she would eventually be "normal."

I still remember every detail of that phone call that day. My surprise that the doctor called so soon after her EEG. My "happiness" (and ignorance) in thinking that seizures could be easily treated. And then I searched the internet about "Infantile Spasms", and knew our lives were changed forever.

It has been a long road since that call. Times we hoped we found a drug to make her normal, times we hoped she would just sleep through the night instead of being on a junkie high, and times we thought we'd lose her. Her development has been slow, but these past two months of being "seizure free" have done so much for her. And we don't know what we're doing right! (But we'll take it!)

The one "gift" we now have since that phone call two years ago is her laugh and her smile. Thank you God for that! There were many times I thought I would have to learn to accept her staring at me with that blank stare, wondering if she was feeling happy. Now sometimes, I get a giggle or smile as she wakes, and it makes my day!

Jenelle will never be "normal", but she is my Jenelle. I would not want to relive these past two years, but I also wouldn't do them any other way. Life it just difficult sometimes, and then you just laugh and move on.

Pre-Labor Day Update on Jenelle!

Last weekend we were invited to a pool party. Hours before it was supposed to start, the hostess called to inform me that all three of her kids were sick (vomiting). We choose to stay home to keep Jenelle away from germs as she needs to be well these next two months to do her best on all her assessments. Imagine my worry when she started running a slight fever on Monday! "We missed the party and she still got sick anyway" was my first instinct. The good news however is that I took Jenelle into the doctor on Tuesday morning and she is merely teething! Yay!

After that the week went really well for Jenelle. Also last weekend we took the opportunity to take down Jenelle's crib and move her to a twin bed enclosed with safety rails. Of course, it took me 3 hours just to pick out new sheets for her bed. She is such a big girl now as you can see in the photos below.

And more good news - I got a glowing report from Jenelle's Physical Therapist yesterday. She was so excited because she has really been seeing improvement with Jenelle in possibly sitting up and head control. Jenelle really needs her AFOs (ankle foot supports) because she has enough strength to continue to try to walk. I was worried because it took a long time to get her old pair, and was happy to come home to a letter from our insurance last night authorizing a new pair! We have an appointment next Wednesday to get her casted for new AFOs. (I'll make sure to bring my camera this time!)

We hope everyone has a safe and pleasant Labor Day Weekend and thank you for the continued prayers - I'll keep you posted!

The extra bed rail...

I felt more comfortable adding an extra rail to Jenelle's bed. It is much more secure now. She loves all the room to roll around, and doesn't hurt herself anymore.


I'll post another update this afternoon. Just wanted to upload this photo while I was at home.