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!!!...

Seventeen Months

Yesterday, I decided to put Vada into an outfit that I had purchased months ago. I was hoping that she had grown into it by now. When I bought this outfit and many more like it I had assumed that Vada would be in eighteen month sized clothes by the time summer would arrive. It was so hard to determine then because she had a huge weight gain with the ACTH and then the fact that she was, at the time of purchase, actually loosing weight.

On a side note, when I read about children who have Down syndrome, I read about the many things to expect. One specific thing that I read was that most infants and children who have Ds grow slower or are smaller than their peers who may be the same age and who do not have Ds. However, like every other possibility, it was just that, a possibility and since I hadn't had much experience with her actually being small (other than around her birth) I thought nothing more about what I had once read and bought the eighteen month sized clothes.

Clearly, I was wrong when I assumed I knew what her Summer size would be.

I am hoping for an prolonged Summer..., then maybe she might get some use out of a her "cool" clothes but I doubt it. Either way, I may save them for next ear, just in case. I kept a ton of her nicer clothes from this last winter, which was also sized for eighteen month old babies. Again, because of the ACTH, she was wearing eighteen month sized clothes, only she was nowhere close to being that age. I'm thinking that at the very least those will be perfect for this winter.

The first two pictures was taken on Christmas of 2010. Vada was 9-1/2 months old. The third picture was from this morning. The outfit is sized for a 18 month old and there is plenty more where this one came from. Some fit better than others. This one happens to fit her in practically the same was as when she began wearing it.

After we finally found some clothes that did fit her we headed to our friends house for a first time dress fitting. My friends mom is making our Vada and my friends daughter matching dresses and since she lives in another country, we have to send her the measurements of our girls.

Wasn't it thoughtful of me to stop her while facing the hot, hot sun, to take this picture? 

During our walk I did noticed something that got me really excited! Vada's feet can finally touch the pedals of her SmartTrike! So, she may be smaller in the waist area but she is, without any doubt, growing in length!

Later in the afternoon, Vada and I headed to her Ped's office for a check-up and more importantly, to start her Vaccination again.

These next few pictures are from my cell phone, so their not the best quality but look at how much fun she is having!

She didn't know or care about what was coming up, however. She was having too much fun playing on the exam table.

Vada may have been having a blast but I was sick to my stomach.

Knowing the right thing to do is not always easy and today's choice was a difficult one to make. I had actually put this appointment off by three weeks because I knew what vaccine everyone wanted to start with, the DTaP. For those of you who don't know, in the past this was an eliminated vaccine for those who had West Syndrome (or Infantile spasms/seizures). The Pertussis portion was once a "live vaccine" and it was linked to seizures. However, now that it is a "killed" strand or an inactivated toxin, it is considered to be safe to once again use on those who have Vada's form of Epilepsy. Regardless, it makes me nervous! Even today I am watching her like a hawk! Last night I even slept with her. She does seem to be having a difficult time too but I understand (having two children prior to her) that there are small reactions that sometimes occur but this is why I am watching her so closely.

She barely flinched while getting the shot, which was a nice reaction. She still has area's on her thigh's that looks almost scarred from where I gave her the daily injections and I think that maybe because it is scarred that she may have less feeling in those area's of her legs. Hopeful thinking?

Along with her vaccinations she was weighed and measured and low and behold she has grown. At the age of seventeen months (and two days) Vada is now twenty-eight inches long and weighs seventeen pounds and ten ounces.

When her doctor came into the room he jokingly said that if you looked at her growth chart you would think that she was withering away. He then followed that up with "But clearly that's not the case. She looks amazing!"

We think so too!

This is a Down syndrome specific growth chart. This is the chart that the doctors should be using if your child has Ds.

This is a Down syndrome specific growth chart. This is the chart that the doctors should be using if your child has Ds.

This growth chart is used for infants/toddlers who do not have Ds. I', sharing it with you to show you the difference in where Vada falls between the charts.