Wednesday, August 17, 2011

The One Who Made Me Mom

Today, my oldest, Jasmine started Junior High. She was so excited. So very, very excited and a bit nervous as well.


She likes to talk fast. She think's that its a cool thing to do but this morning she was talking a mile a minute and her voice had a nervous shake to it making it that much harder to understand. I actually had to tell her to slow down, which is something she hears a lot but something I really meant more this time than ever before!


Lately, I find myself staring at her. She is growing up so quickly, all three of them are actually, but she was my first. Each child brings something different into the family setting. She was the first to begin to mold me into a better person. She made me less selfish and more patient. She made me a mom.


When she got in the car, after school, I was adding a doctors appointment to my calendar and put my finger up the moment she began talking. I had hoped to have had the date programmed in before she got to the car but the moment she saw me she ran over, my fingers weren't quick enough and I felt badly but she patiently waited. Once I gave her the go ahead she began to eagerly filling me in on what her first day was like. It sounded a lot like camp to me but then again it was only orientation.


I look forward to hearing more stories. Hopefully, positive ones, where she made good choices. I pray every day for my children before I take them to school. Now that they are getting older I feel as if I need to pray more. You can never pray too much and with so many negative influences out there I feel as if they need all the strength they can get. Jasmine is a good girl though, she has a good head on her shoulders and I know that over all she will make us proud.


Our Rainbow

Yesterday, after being discharged form the hospital but before leaving, Vada and I had the opportunity to finally meet Annie, her precious daughter Ollie and Janie, Annie's fabulous Mother. They had brought Ollie for her own doctors appointments and asked if after they had finished up their business if they could stop in and say hi to us. It ended up that Vada got discharged around the time that they were having lunch, so it  worked out perfectly.

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I think that it's pretty safe to say that we were all a little tired yesterday because in one way or the other we had gone through a lot that day and we still had the drive home waiting for us, so we kept this visit brief.

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Vada loved Ollie and was very curious about her.

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She also enjoyed the separate snuggle time that she received from both Annie and Janie.


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I enjoyed my own snuggle time with Ollie. She makes me want more babies but don't tell my husband! 

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When I shared all of these pictures with Annie I told her that I thought that the back side of Ollie's head is quite cute because lets face it, it is. I then told her that we would have to get together again because I wanted  a picture of her and I with Ollie's face showing. At least I got a couple of the girls together, those are the important ones!

Meeting with Annie, Ollie and Janie today was such a blessing, ever since we found out that our Vada had Down syndrome I have noticed more people who share the same diagnosis as her. Whenever I see someone who has Ds I try not to look too long or to act any differently because I know at times others do it to us and it gets uncomfortable. Inside however, I get all bubbly. I want to talk with each and every person that I see who has this wonderful bonus chromosome and if their younger, I want to talk to their parents. I want to have lunch, exchange numbers and get acquainted but I never do. I try to think of each situation in comparison to Jasmine and Kiliegh and in the fact that I wouldn't walk up to another parent who I didn't know and say "Hey, I have an eleven year old too, lets do lunch." So, when I do see parents walking with their young child who happens to be more like my Vada than not, I exchange a small smile and keep walking. Secretly, sometimes, I hope that they stop me. 

Please don't get me wrong, I dont want to get to know others so that I can compare Vada to anyone else with or without Ds. I just like being around people who have it. I like seeing all of the stages. I like hearing all of the stories (good and bad) because I feel as a person and as a mother I grow from them. I love my children and I love who they are. I want to be a part of each of their lives in every way that I can. I cant imagine having a closer bond with Vada than I have right now but she is still very young and our bond now has a lot to do with the stage she is in. Being around others who share the commonality of an extra chromosome, makes me feel closer to her. Plus they teach me so much about things I never knew I needed to know.
Its hard for me to find the right words to express my love for Down syndrome but when it comes down to it, I love this trait, this diagnosis, this extra chromosome-- whatever you want to call it, I love it. Its a part of what makes Vada who she is and I feel drawn to others who also have this bonus because it's a shared uniqueness with my sweet girl. Meeting other families and other people who have Ds, spending time with them, talking with them and getting to know them is such a treat for me. There is something different that's shared between strangers who have children with Ds verses strangers who have typical children and maybe it's just a different form of a common ground, but never the less I am proud to be standing on it! 


Thank you Annie, Janie and most of all Ollie for taking the time to visit Vada and I during a very difficult time. You were the rainbow at the end of this storm.




Tuesday, August 16, 2011

When in Rome

Whoops, did I say Rome? I meant Missouri.

August 2011

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After leaving the hospital I changed my mind, again, on taking Vada to the Saint Louis Arch.  I had changed my mind thinking that she had been through too much and was tired. However, after a good nap she was bouncy as ever so I figured, why not. Then I became tired and I just couldn't decide. Finally, as we were in the car and the Arch was becoming clear in the distance I decided that we would in fact stop to see it. I paid five dollars for a parking place in a ramp as course as I could find and with Vada riding snug in my Beco away we went. It took a good deal of walking and all of ten minutes to get a couple of decent pictures but I took Vada to see the Arch for her very first time. Im pretty for sure that she didn't notice the huge structure at all but that's okay, I did and and the memories I have attached to it will always have a special place in my heart.

The last time that I was in Saint Louis was July 20, 2009. My family was the size of four with a tiny little cashew growing in my belly. At this time I was too early into the pregnancy and we didn't even know if we would be having a boy or a girl. 

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While I missed the rest of my family and I wished deeply that we could have all been together, this little moment was a fun memory that I feel blessed to have been able to share with Vada.

Monday, August 15, 2011

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!!!...



Seizures and Saint Louis

Im pretty tired right now, so this is my one attempt at an update. I'll fill in what I have left out a little later.

Vada had a DTaP vaccine on August 4, 2011 and I swear that night she began having seizures, again. However, at the time I took her "behavior" as she was having a sore thigh from the injection and maybe showing some irritability as well. I also thought that she quite possibly could be constipated--she has serious issues with being able to poop on a regular basis and we haven't got the Mira-Lax dosing tweaked just right-- yet. I can't say for certain that the DTaP caused the seizures because she had two DTaP vaccines, this last one being her third and the first two caused no concerns. This time is just very coincidental, if you want to call it that. Anyway, a couple of nights passed, she pooped (a lot) and still she was waking up screaming and crying. She would throw herself back and make circular motions with her whole upper body, which, by the way, were kind of frightening to watch. It wasn't until Thursday night when her jack knife motions reappeared or at least when I allowed myself to see them for what they were. Seizures. The next morning I told Justin how she had woke every hour or so, each time having fits. Together we decided that we would work together and try to record what was happening.

On Sunday Justin and I decided that I would take Vada to the Emergency Department of the Saint Louis Children's Hospital. Going through the ED would result in almost immediate treatment verses a possible wait due to office scheduling. The Children's hospital was rated number five out of the top fifty in the U.S. and since we no longer have our Peoria Neurologist this is where our hearts were telling us to go. Plus, the hospital and Neurology staff came highly recommended by people who have gone down this road and who have, in way or the other, came out on the other side.

So that's it. I'm really tired and writing seems like such a task right now but I wanted to post a update for those who were curious. Thank you to everyone who have sent messages to me, who have prayed for Vada and our family and a special thank you to Amy Armstrong, who continues to help me through this, even from afar.

I should know more soon, as in today and when I find something out ill post a update. As far as the videos go I have posted one that is edited, "My Movie" and the ones that follow have not been, they are longer and there is a great deal of time between the questionable seizures where nothing other than rocking, bouncing and or sleeping occurs. If your interested, I would say that the first two show the best of our concerns.

Feel free to ask any questions. I'll answer what I can and find out what I don't know.