Ramblings From our Recent Days

Saturday night was our last dinner together before Vada and I headed to Saint Louis. We had something easy and something that left very little of a  mess for me to pick up-- tostada's!

At dinner Kiliegh gave Justin and I our three year anniversary gift (from her). She had made a really sweet card to "Mom and Dad" (her words).  My gift was a dazzling pair of faux diamond dangle earrings that she had purchased from a near by neighborhood dollar store over the summer. She broke them in for me-- sweet girl. ;) Justin's gift was three used pencil top erasers. It was sooo cute. One of the erasers was broke in half, one was worn half way down and the third was in pretty good shape. These are the gifts that I love the most. The ones with heart put into them. I swear I will miss the days where I get odd ball gifts and sweet mis-spelled homemade cards. I stuck the card, erasers and earrings in a baggie. I plan to someday show Kiliegh what a sweetie she was when she was this age.

After dinner Kiliegh played the Wii but before she started she made a play mat for Vada. "So we can spend this time together" she told Justin and I while doing it.

Justin's parents stopped by before I put V to bed. They wanted to get their Vada fill before we headed out for the few days of testing. Justin and his Dad went outside to look at something in Justin's shop and since it was a nice night Annette (Justin's Mom) took Vada outside too. They had been out for only a few minutes when Justin yelled in at me to come outside quickly. When I did I quickly turned back around and grabbed my camera because I didn't want to miss the opportunity to share this visitor with everyone.

Hummingbird Hawk Moth

The trip to Saint Louis was great! Vada slept the whole way!!! She had ate a huge breakfast with Daddy , so she had a full tummy. I guess the key to our successful drive. She stirred a couple of times throughout the drive but never fully woke up until we were about a half an hour from the hotel/hospital.

I thought that the long nap would have interfered drastically with her bedtime but I thought wrong. It was a very minor change from her norm and nothing to complain about. She played in our room (at the hotel), took a bath, played some more and then was asleep by 11 PM. I was in bed by midnight. Not too bad, if I do say so myself! It could have been worse, for sure.

We arrived at the Children's Hospital at 8:30 AM and by 11 AM Vada was hooked to the EEG and was sent to her room which she is now confined to until the testing has been completed. Prior to her being being hooked up we had about twenty minutes of wagon walking through the twelfth floor hallways. She really enjoyed that and since she was already behind on her nap I think that all of the walking also helped her stay calm(er) while getting all of those stinky leads stuck to her poor baby head.

Now, we're in Vada's private room. She's hooked up but is still able to be somewhat mobile. She is scheduled to be here for four days. Although we may be able to leave sooner if we get what we need before the four days are up. They just scheduled it that way so that we would hopefully have enough time to "catch" what we would need. She was scheduled to have a sedated Lumbar Puncture but that was canceled. (Sometimes people who have seizures also have metabolic disorders that can cause the seizures, which was why they had it scheduled in the first place-- to rule out other possible causes. However, Vada had a bunch of labs drawn a couple of weeks ago and they came back fine which is why they decided against this test, at least for now.) So for the time being we wait and watch and I work really hard at keeping my girl entertained...

 At the very least, she's getting fed well!

A Hard Days Work

Often I write about what a hard day that I have experienced. I write about how tired I am or how I need a break. Today, Vada has taught me once again to suck it up and keep going! This girl is a rock. She takes a licking and keeps on ticking. She's like the energizer bunny-- she keeps going... and going... and going. Okay, okay-- you get my point, she's impressive-- but i'm bias.

In all truthfulness, she was amazing today. She had physical therapy where Kim introduced all sort of new things. They were busy, busy, busy! Kim gave Vada little breaks and kept her attention throughout the whole hour! It was very productive!

Vada worked on balancing, sitting and rotating from one side to another.

She also worked on using her right hand to reach for something on the left side and vise versa.

She worked on standing on things that were not firm or steady.

This was something that she climbed right onto but did not enjoy standing on. 

It took awhile but she eventually became confident in herself and in Kim's support and they were able to work on shifting her weight from one leg to the next.

Vada worked on her core muscles and coordination.

She worked on rotating her whole body when she moved from position to another.

... and then she was done.

Grandma comes to many of Vada's therapy sessions and today she was even able to hep out, which i know she enjoyed. She is one rocking' hands on grandmother who wants to participate and learn all that she can to help enrich each of her grand babies lives. She's a blessing- in many more ways than just one!

After therapy we had lunch and then headed to one of the local hospitals. Vada needed to get her second spinal X Ray  to check for atlantoaxial instability (AAI) as well as two separate lab orders that needed to be drawn. The X Ray went alright. She's a baby and didn't appreciate nor understand why her head was being held in a particular position that looked to be quite uncomfortable. After the X Ray we took her to the lab where they poked and fished in her little arms for too long and were still unable to get the 12ML's of blood that they needed, so we had to go to another hospital-- but first we had to pick up Jasmine from school and then drop her off at home so that she could do her homework and then take herself to Karate. Luckily, the second hospital's phlebotomist was able to get the amount of blood needed and it only took her one stick and minimal fishing around to get it.

Throughout all of this Vada was such a doll. Don't get me wrong-- she fought and cried and even did some screaming throughout the uncomfortable testing that were done today, (That whole myth about people who have Down syndrome always being happy is a huge misconception. This sweet girl has every emotion that anyone else is able to experience and today she expressed quite a wide range of them.) however, for what was done, she did great!

Once we were home she perked back up and we had a great night of playing and messing around. She even showed off some new balancing skills!

On a final note for Vada-- the Neurologists office called today and we scheduled Vada for more testing, on September 11th, after church, Vada and I will head back to Saint Louis for a four day VEEG. Hopefully, we will have some sort of plan on getting Vada's seizures under control before we leave. Currently, her medications have been increased a third time. Some of the labs that were drawn today has to do with checking her drug/blood levels. She may be at the maximum for the medications that she is on and increasing may be out of the question-- or not.

Finally... My oldest, Jasmine, who is almost 12, babysat for the first time on Sunday! For. A. Non. Family. Member!!! She watched two little boys-- one who was still in diapers! She didn't actually have to change any  but she may have. It would have been kind of funny too. When you grow with only girls around throwing a boy into the mix adds a little bit of anxiety to things. She did a good job and she felt great about the job she did. I am very proud of her! My little girl is growing up and she is turning into quite an amazing person. With that being said Vada thought that it was ridiculous that Jasmine didn't have to change any diapers while babysitting, so today she expressed those very feelings... and pooped on her! Hey, what are sister's for?

It's Good to be Wrong

Over the past several days Vada has had questionable movements again. It sounds weird to say that, let alone put into words, but when you have dealt with seizures maybe it gives you a whole new perspective on the way your child moves, acts and behaves. The movements have been comparable to what we were seeing when she was having seizures.

I have been corresponding through emails and over the phone with Vada's neurologist throughout this time and over all he was on the same page. I had sent him several emailed videos and with each one he commented on how it looked as if she were having a different kind of seizure(other than the Infantile Spasms).

The last time I sent him video's he called with in a few hours offering me two options. The first choice was to start her on the Sabril right away, (a medication that I have a months worth of on hand). The second option was to do an VEEG also known as a Video EEG Monitoring Test. I jumped at that idea. The last VEEG was one that lasted for four straight days. It was done at the beginning of Vada's seizures, nearly four months ago.

While I still believe firmly in not treating the EEG but treating the child/symptoms, I needed to see what was going on. My mind wasn't made up and I was confused at what I was seeing. By having this VEEG I was hoping for some direction. If the video showed her to be having seizures, then we would treat her for them, but I didn't want to start yet another semi-risky medication for no reason if she was not having seizures.

During the initial preparations I was given a button to push and a log sheet (just like last time). Everything that we had been seeing and everything that we had been questioning would be seen on the video as well as on the scan. The doctors would be able to target the "episodes" by the moments on video and from when I pushed the button.

The test went well. Vada had every "episode" that we had previously questioned and not one single movement showed up to be a seizure! This was great news. Overwhelmingly great news. However, I am not one to leave "well enough" alone, (or is it "good enough"...? Ugh..., I need to go back to school!). On Monday I am taking Vada to her GI specialist and requesting that further testing be done.

(This picture was from September 2010 when Vada first started to have seizures. You can see that there are "rest" periods between the "peeks". The rest period's show Vada's normal brain activity. The peeks are what happens when you have what is called hypsarrhythmia. Hypsarrhythmia is something commonly seen with her type of Epilepsy.)

(This picture was from the January 2011 VEEG. No peeks. No hypasarrhythmia!!! The Neurologist said that her brain activity is slower than a typical child, but that slower activity is commonly seen in people who have Down syndrome.)


One new piece of information that we discovered during this last OSF stay was that Vada's has leukopenia. Which means that her White blood count (WBC) is low. Her levels should be over 1000 and right now it is in the low 600's. I'm sure most of you know, but for those who don't, your white blood cells are what helps your body fight off infections. The cause of her low WBC is probably being cause by the Valporic Acid that she is taking to help control the seizures. Since the Valporic Acid is working at maintaining a seizure free Vada we all agree that we would like to attempt to keep her on it. So we have started to give her Levocarnatine, which is known to help raise and maintain the WBC.

Vada will have to have her blood continuously checked to make sure that her levels are where they need to be. If the Levocarnitine does not help then we will have to look at putting Vada on a different Anticonvulsant. For now, were going to keep a positive mind set and pray that the Levocarnitine does the trick!