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?

A Late Night Call

I just got off of the phone with Vada's new Neurologist, Dr. McGill. Yes, he did call me at nine in the evening and you know what, God bless him for doing so! I am so appreciative that he called later verses making me wait until tomorrow.

We talked about what I was still seeing and about a video that got passed along to him and the head of Neurology Dr. Zempel (thanks Amy). We all agree that it all looks like Ws/IS seizures. There is a possibility that we are looking at a different type of seizure but the understanding is that it seems to be seizures and not behavioral, which was a slight concern or wonder of ours.

The plan is to increase her Valporic Acid (Depakote) slightly, I guess its already pretty high so they dont want to increase it much more until her blood levels have been established. Over this next week I will monitor her, write down what I see and when I see it and then next week I will have her labs done (here, in our town). Dr. McGill will call me with those results and we may or may not be able to play with the medications a bit more. Sometime with in the next couple of days the hospital will be calling me with a date for us to bring V back in to Saint Louis Children's where she will have another VEEG, that should be scheduled for a minimum of forty-eight hours.

Oh, and I finally received an answer on where her last Neurologist went. I had mentioned a couple of posts ago how we had received a letter from the office in Peoria, stating that her doctor, Dr. Jennings, would no longer be seeing patients and that Vada was being assigned to a new doctor. Well, Dr. Jennings took a teaching position. So, may the best come to him and his decision. I am sure that he will be a great teacher. I feel confident in the fact that Vada is being treated in the hospital and by the doctors she is meant to now see, so I truly wish Dr. Jenning's the best and I am grateful for who we now have treating our girl.

Plans of Treatment and Discharge

Vada's EEG came back pretty normal, slower than typical, but free of  Hypsarrhythmia,  a sub-clinical brain pattern that is often found in patients who have IS/Ws. Vada first couple EEGs, which were done almost a year ago, had the Hypsarrhythmia. The fact that her most recent EEG showed no Hypsarrhythmia is a good thing. It means she is free of the sub-clinical symptoms and now we have to treat the clinical or the physical signs of the seizures-- what we are seeing in the videos below.

Our plan is to increase the doses of her current maintenance medications. The concern that I had originally had with the DTaP being the cause of all of this has been addressed and I have been told that we can not directly blame the DTaP vaccine for the seizures reappearing. It is possible that the vaccine may have lowered her threshold to fight off the seizures but it is only a possibility. The type of seizures that Vada has, often times comes back or even changes into other forms of epilepsy and that is more of our reality. Either way, I can not dwell on the "what if's" and I refuse to be consumed in my guilt over the choice that I made to agree to vaccinate. While I didn't fully feel comfortable with this particular vaccine I did believe that I was doing what was in her best interest. I will continue to do what I think is right for my children-- like getting into it with a Resident doctor in the ED...oh, yes I did! (Don't mess with this mom or my intelligent posse who is feeding me with all of the correct information!)

We have to do some lab work in the morning, once it comes back we will change her doses and we should be released to go home. We will keep in direct contact with the Neurologist here and will continue to monitor Vada closely. Hopefully, this can be fixed. I am hopeful even though it does seem like we are grasping on this one.

I plan on taking a quick thirty minute detour to the Arch with Vada-- before heading out. Were not going to go in or up the arch, just walk around and take it all in. I cant bring her to St.L, for her very first time and not take her to the Arch. It would be wrong! Hopefully, we will be released when it is still light out!

I have thought a lot about Jacey, the little girl that I met while pregnant with V and her family. (This was the family that I wrote My Great Story about. Which btw, I have almost finished my rewrite of that story.) I would love to see them while we are here but I don't know when Vada will be released and I don't want to give short notice or put anyone on the spot. Since V is now transferred here for her Neurological treatment I know that there will be plenty of opportunities in the near future for us to get together again and I look forward to it!

Vada and I will be meeting up with another very special person tomorrow and I cant wait to tell you all about our visit but I will leave that for another post!!!...