Seizure Free

In August of 2010 Vada began having a rare form of epilepsy called West syndrome or Infantile Spasms.

AUGUST 16, 2010



AUGUST 17 2010

The seizures not only took over my sweet baby girl but they also consumed our family. For eleven weeks I gave my daughter daily injections of a toxic drug that in return stopped her seizures and for the last two year and two months she has been on daily doses of three different medications to maintain her seizure free "state of mind". (Its just been in the last couple of months that we were able to drop one of the three medicines.)

Tomorrow, Vada and I will be headed to SLCH to meet with her neurological doctors to discuss dropping (weaning her off) the final two medications and transferring her care back to Peoria.

I am both excited and sicktomystomach about this trip.  I love this little girl so much and I never want her to have to go through anything that she has already gone through medically but especially with the seizures, again. I don't want them to come back and part of me wants her to remain on these last two medications until she is five, an age that is considered to be a safer time to not have the seizures reappear.

 And yet, another part of me is wondering what she will be like off of the medications.  I wonder if maybe she will sleep better or even talk more.

I just wonder. 

During the last visit to St.L we were told to expect, if Vada remained seizure free over this period of time, that she would in fact be taken her off of her final two seizure medications. So I guess were about to find out what, if any, side effects she has been having while on them and what she is like off of them. Its crazy to think she might change a little and that the medications have somehow changed who she is really is suppose to be because of side effects. Truthfully, she is a strong little girl and I think that she has beat this.

But I do have a favor to ask, pass this along, ask for prayers and also pray for Vada, not just for this trip and appointment but for these next several months where she may be more susceptible to having seizures again. Ask God that it may be His will that she is finished with medical issues and that this can be the beginning of her enjoying her life as a healthy little girl. 

Thank you.

Can I Get a Half Size in That, Please

Gosh, I wish that I could sew! 

Here's a random fact about Down syndrome that you may not know. Many individuals who have Down syndrome aren't only smaller in stature but they actually have shorter legs and arms compared to their torso  Meaning, in Vada's case specifically, her chest and abdomen are very close to being the size to age ratio that other "typical" children are but her legs and arms actually measure shorter than "normal". It's a small detail that you cant see when looking at her it just makes her look like the petite little petunia that she is. However, it does make finding clothes that fit a little harder than I am used to but i'm always up for a good challenge, especially when it comes to shopping! If I could find a dozen or so shirts that are 3T in size with 3/4 length in sleeves, 18-24m jeans with some  2T length in them and a size 4-1/2 shoe --we would be set! 

Right Foot, Left Foot, Kick and Dance

Jasmine is such a good sport. She is always willing to be photographed doing the things that I am doing with Vada, so that I am able to share it through the blog. I personally don't care to have my pictures taken (especially since I have gained fifteen pounds but who's counting). Luckily for me, I don't have to be in all to the pictures because as of now Jasmine says that she would like to be a therapist, so she is constantly asking to try what V and I are working on and I am constantly letting her while clicking away with the camera!

I had Jasmine work with Vada on kicking a ball. Using her right foot came naturally to Vada. She has always favored her right side. Kicking came pretty naturally as well. I was surprised at how well she did! Our reading program that we use has the sight word 'kick' and while we were reading that word, the other day, I kept showing Vada what 'kick' was and she began doing it herself, which in return gave me this idea.

Vada does lean against her sister while kicking and since was the first try we let her do it anyway that felt natural to her. She didn't need much support either by leaning or by bearing her weight on her sisters arm. 

We took her jeans off because without shoes they are so baggie and they kept getting in the way. 

On a side note for those who may be curious about how potty training is going... At home, the majority of the time V is in underwear verses being in pull-ups and besides the night time diapers that she sleeps in overnight we have done away with diapers altogether. We are doing a timed schedule of taking her to the bathroom every forty-five to sixty minutes and that seems to be making al of the difference! Potty training is in my opinion rather successful right now.

In the picture below Vada is standing on her own and only slightly touching her sister as she kicks! Rather impressive, if I do say so myself!

Working on Vada's left side was a bit more tricky than working on her right side but V is really easy going and really gives 100%, so she was up for trying this out.

P.S. Don't even get me started on the fact that V ends up getting kneed down! --You'll unfortunately see what i'm talking about in the video because I couldn't figure out how to edit it out. Take note however, that I did tell Jasmine's friend to watch out for Vada. With that being said.. err.. wrote, check out V's sick moves and pay no attention to the pants being pulled up to her chest... therapy may be needed later in life for this one...

What Apps Do You Use

We have an iPad and a Kindle Fire here at home, V often plays on either one of them a few to several times a week. The apps that we have are great for her fine motor skills but most have become redundant, which isn't necessarily a bad thing but most of the games are just that, games with no real purpose other than to rack up points. Most of what we have right now focuses on her pointing skills. I was hoping to find some really good, age appropriate, learning games. 

Does anyone have any suggestions? 

Change of Plans

What was once going to be our classroom has now turned into a full blown project and our soon-to-be bedroom.

Our bedroom was never much of a room, more like a spot or a corner where our bed sat. It was good enough but there wasnt any real privacy. It was at the bottom of our basement stairs. You had to walk through our space to get to the classroom, the laundry room and even our second bathroom. So when Justin changed his mind about building a bedroom where the classroom was suppose to be, I was for it and a little nervous about where we would put all of our stuff...

In Four days Justin built us a bedroom.

There are some final details that still need to be finished but we are getting ready to move our bed into its very own room! The classroom will moved into where we used to sleep and hopefully, all will be done by the end of the year! There is a lot left to do but man, its like were walking into a whole new house now. I cant stand the mess or the dust all over but it is all well worth it! And I cant wait to share the final results!