Is she cute or what?

Today was Jenelle's last day at the Blind Children's Learning Center as they will be closed for the month of August. She will return in September, but we are not sure if she will remain there after her 3rd birthday in October. As I dropped off Jenelle today, this photo was in her cubby. I know it was taken recently, because Jenelle has only recently been smiling like this.

I went to work and saw a fellow co-worker in the elevator on my ride up to the 13th floor. I proudly pulled out this photo of Jenelle to show her, and she gushed over it as I knew she would. A man in the elevator who did not work at my firm peeked over her shoulder to check out the photo. He said, "She's a real cutie, and very tall - she'll be a handful when she gets older." The co-worker and I just smiled at each other and agreed, but both knew that she would be a handful in "other" ways he did not.

There are many times when I wonder just how much I should say. Sometimes I offer information like, "Well, my daughter is delayed" or if I have more time I tell people she has seizures. Sometimes when I give each and every full blown diagnosis and problem attributed to Jenelle, I wonder if people think I'm telling the truth! Really, there is only so much you can tell a perfect stranger about Jenelle while riding between the 1st and 8th floor where this man exited. Yet today it felt good to respond as if she were a normal child, because she certainly looks like it in this photo!

Jenelle continues to do well seizure wise, and I weight her last weekend and noted that she has gained 4 1/2 pounds since the G-tube was placed. Last week I went to dinner with friends and took Jenelle with me. She cried when I wasn't holding her, which made it difficult to enjoy dinner. However, it was inspiring to see a true "two year old" response from our girl.

Thank you all for the continued prayers - I'll keep you posted!

By Popular Request ...

Here is a photo of the kids enjoying gifts from a friend in Autstralia. Notice Jack's buzz cut?


Here is a photo that shows Jenelle's "chubby" cheeks! Notice that her face if fuller now that she has gained some weight from the G-tube.

Happy Friday!

Jenelle's EEG

Thank you all for the prayers and "seizure vibes" on Tuesday. Jenelle's EEG went well, though she did not have any of the crying or laughing episodes I was hoping to catch. She did have a couple of seizures like her normal ones, so if anything, it will be good to have confirmation that things are the same or better.

In addition to her EEG, Dr. Shields also wanted to "re-run" a urine organic acid panel, which of course meant I had to "bag" Jenelle again to get a urine sample. If you don't recall me complaining about this in the past, this process is usually most difficult and most frustrating because I literally have to place an adhesive bag "strategically" onto Jenelle in hopes of catching some urine and hoping that she doesn't poop in the process! This is probably the only instance where I wish Jenelle had been born a boy! I was rather unsuccessful at getting a sample from Jenelle earlier last week (three attempts in all) and decided one last attempt before leaving for UCLA. After leaving the bag on for an hour, I went to check and found that it had fallen off. I was very upset and disappointed until I noticed that by some miracle, the bag had actually caught some urine! You cannot believe the true sense of exhilaration I felt at that moment, knowing I had a good sample to take to the lab. Four years ago, I never knew something this trivial would be so important to me.

I stopped by the lab with Jack on our way to get him to preschool. Upon entering the crowded waiting room, he promptly announced to everyone that "We got pee pee from Jenelle!" The lab is the same place that employs our favorite phlebotomist, so they know us well. The receptionist smiled as the technicians giggled. I believe the lab employees were equally thrilled that they didn't need to supply me with yet another sterile urine bag!

So, I didn't win the lottery or cure cancer on Tuesday, but I did manage to get two medical tests done for Jenelle while also driving safely and successfully to UCLA and back. Ah, the little things in life that make us so proud!

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

Another great week for Jenelle!

Jenelle has had another really great week - eating well, gaining weight, and sleeping well! YAY! We are really starting to notice Jenelle's weight gain in her face and legs. I haven't weighed her recently, so I don't know the exact pounds she has put on. Another way we've noticed the weight gain is in her shoes - her AFO supports (the pink ones) no longer fit because her feet are too chubby! So, we'll need to order new AFOs, which will be a pain, but its great to see this healthy change.

Now, we have a rather strange request for everyone… we need everyone to wish, pray or send vibes that Jenelle has seizures on Tuesday at around 11:00 to 1:00! I know, it sounds weird, but Dr. Shields has scheduled Jenelle for a short EEG on Tuesday at 11:00 to make sure her "new seizures" (the crying/laughing ones) aren't something to be concerned about. As for seizures, she has had a few this week, but none of the crying/screaming ones she had around 4th of July. So if you could think of us on Tuesday, that would be awesome! Dr. Shields is leaving later next week for Europe and will not return until September. He specifically wanted Jenelle to have this EEG before he left, so let's hope it can be useful to him.

Many of you have commented to me that until my last update, you did not realize Jenelle was blind. I guess I don't talk about it much because it really is a minor thing compared to all of Jenelle's medical issues. Cortical Visual Impairment is something that really acts like a light switch, and can simply come and go. There are times when she sees well, and times when we can tell she isn't seeing at all. Brett has suggested that Jenelle's sudden crying fits may also be attributed to her vision - she starts crying because the "lights go out!" We may never know, but it seems reasonable. Basically, her eyes are normal, but the "wiring" from her eyes to her brain does not function properly. The good news is that we are told with time and therapy, the vision will improve. But for the most part, Jenelle will always be legally blind.

Work has been crazy busy for me which explains why I haven't updated as frequently. However, in a strange way, it has been a nice change of pace to be stressed about something other than Jenelle! Brett's work has been busy as well, and Jack is enjoying summer with a new "buzz cut" and swimming as much as possible!

Thank you for the continued prayers - I'll update next week sometime after her EEG. Remember - think "seizure" thoughts around 11:00 on Tuesday! :)

How will this end?

This is one of those rare times where I feel the need to put thoughts down, but I am not emailing them in my usual fashion to family and friends. Yesterday I was reading an update about Lily, one of Jenelle's little friends from the internet and her Mom mentioned that as Lily's 3rd birthday was approaching in August, she was starting to get sad. I think we all do this, and of course, as I tried to get myself to sleep last night as the hour approached midnight, a though shot through my head and woke every bone in my body. It is not something I usually stew about in the middle of the night, but something that does come to mind from time to time... "How will this end?"

Sometimes I am so caught up in the care and time it takes for Jenelle, that I often can't look past the here and now. Then thoughts flood my mind like "Will she always be like this?", "Will she get better or worse?", "Will she ever need to be institutionalized?", "Will she die before me?" or "Will I die before her, and if so will she miss me or understand why I'm gone?"

We all enter parenthood for various reasons, but rarely to we ever truly realize the life long commitment parenting really is. Then of course, parents of special needs kids often get more than we bargained for. Another Special Needs Mom told me recently "Remember, it’s a marathon, not a race", and that was some of the best advice I really needed to hear. You have to take things one at a time, and slowly in order to keep the stamina to endure all that life with a special needs child has to offer.

There are times we get ice cream with Jack and my heart twinges a little because I feel bad that Jenelle cannot eat ice cream or popcorn, or things you buy on a whim when you are at the park. I feel badly for Jenelle, but realize that she really isn't aware of what is happening, so she really isn't missing out. Jack needs this attention more... and of course, there are times Jenelle gets more of my attention than Jack ever will.

When we work really hard at something, there is always some type of reward in the end. A vacation, time off, a bonus, a job well done, etc. Usually there is always a reason to continue with the hard work to reap the benefits. Being Jenelle's Mom, sometimes I really have to search high and low for the rewards. They are there, I know that. I am proud of all that Jenelle has accomplished since her first diagnosis, but sometimes I have to remind myself to actually see those accomplishments. Her progress is slow, but she has come so far.

So, as Jenelle's 3rd Birthday approaches (in 3 months) I'm sure I too will start to let myself be down once in a while. Knowing the things I'm missing because she is not a "normal" 3 year old child and yearning for her to improve. Yet, somehow once the birthday is past, I usually feel inspired for the coming year. I know that I will get through this time once again. Thoughts like last night are thankfully few and far between. Whatever happens I know that somehow we'll manage and survive. And life will go on.

And another quiet week for Jenelle!

Well, Brett and I have actually made it to work two weeks in a row now even though this week was short starting with the holiday! It is nice to have a somewhat normal schedule. Speaking of the holiday, Jenelle did very well watching fireworks Monday night. I was hesitant to have her watch them, but also not really excited about leaving her alone in the house while we shot off fireworks in the street. She sat in my lap and really seemed to be watching the fireworks (and enjoying them!) When there was a "strobe" like firework, I pulled a blanket above her head, and sometimes it seemed like she was trying to look over the blanket.

She only had one seizure on 4th of July and it was just before she went to sleep that night. Unfortunately, that was not her only seizure last weekend. We were at a BBQ on the Saturday before the 4th of July and Jenelle had her first seizure in over a week. The strange thing about this one is that she started crying just before it happened. She had two more after that one, both where she cried just before. I figured it was over-stimulation from the party and wasn't too concerned. The next morning Jenelle had two more that were the exact same, crying before the seizure started. My guess is that she is becoming more aware that a seizure is coming on… they say some people get an aura or can actually tell when a seizure is about to happen. This could be a good thing since it would give us some warning. Other than the seizures last weekend, Jenelle has not had any since, so that is good news.

We saw the Kidney Doctor last Friday and she was absolutely thrilled with Jenelle's progress. She really has no reason to keep following Jenelle since all of the "kidney" issues have been ruled out, but she wants to follow the metabolic acidosis, since she is prescribing the bi-carb supplement. When she last saw Jenelle, her feet were blue from the acidosis and now they are pink and normal looking. Dr. Ben-Ezer was so happy, she even kissed Jenelle's little feet with excitement. She thinks the improved bi-carb levels are helping Jenelle seizures in that it increases her seizure threshold. Sounds reasonable to me. Overall it was a great check up, and we will see her again in September.

Jenelle has actually gained 2 1/2 pounds now since the G-Tube placement and is doing much better with the combination of formulas. In fact at daycare, they said Jenelle would not stop laughing all day. What an amazing difference. I called UCLA about the "different" seizure presentation we were seeing over the weekend and Dr. Shields said he wants a short EEG to see what is going on. If anything, it would be wonderful to document that her seizures are actually better now, so we're happy about the EEG. That should be in the next couple of weeks. At this rate, we hope to be back on the Ketogenic Diet in late August. Jenelle saw her Ophthalmologist today and he did not see any evidence of Glaucoma. Jenelle does appear to have a "cupping" of her right optic nerve (this is a term I am familiar with because I also have this due to my Glaucoma - unfortunately I don't know what it means) but he said it was minor, and no reason to cause any pain. Jenelle is still blind, but he did see her "tracking" some objects so he felt there was some improvement.

Here's hoping Jenelle's stability continues! Thanks for the prayers - I'll keep you posted.

July 1 update on Jenelle

Miracle of all miracles - Brett and I actually made it into work every day this week! This weekend we will be celebrating our "independence" from Hospitals and Emergency Rooms (HOPEFULLY - knocking on all the wood I can find as I type!) So, I guess I'm trying to say that other than doctor's appointments this week, Jenelle has been doing well. At times she is still cranky and insomnia is still a factor, but the fever and diaharria have gone, so that is good news.

We had a follow up appointment with our GI doctor on Monday, and Jenelle has gained 2 pounds since the G-tube was placed! She is still taking the special formula at night, but we are adding back Pediasure during the day to see if she can tolerate the combination. So far, so good. She will get a "Mickey" button in 6 weeks, and her G-tube site is healing nicely.

I was a little panicked earlier this week because Jenelle is starting to do tummy crunches again. I was panicked because I thought her Infantile Spasm seizures had returned since that it what they looked like back when she was only 8 months old. I took a video clip of her doing tummy crunches and emailed UCLA. The great news is that Dr. Shields did not think they were seizures, and said, "It looks like a frustrated 2 year old trying desperately to sit up!" Most of her frustration is because she cannot control her movements - so it is all or nothing. Jenelle is still laughing to our delight, and has added a new "sound" ... she has learned how to "slurp". As we were driving in the car the other night, we could hear her "slurping" from the back seat the whole time. Not very lady-like, but we'll take anything new that isn't a seizure.

Below is a photo of Jenelle's G-tube, so you can see what it looks like. She doesn't even notice it anymore, and rolls onto her tummy without any problems. The GI Doctor said I didn't need to use the gauze, but I feel more comfortable leaving it there. Really, the site is now more like a "body piercing" as opposed to a surgical incision. Oh yes, we saw Dr. Patel on Monday as well, and he suggested that we do some blood tests for allergies first before he requests an authorization to Dr. Gillman. Sounds reasonable to me. Also, we will see Jenelle's Kidney doctor this afternoon - so hopefully no news to report there.

Hope you all have a safe and happy 4th of July weekend. Thank you for the continued prayers and support! I'll keep you posted!