Wednesday, August 31, 2011

More on the Give A Way..

The Program that I am going to share with in the next couple of days is getting better and better as I play with all of it's gadgets! It's easy to do online and off and it provides all kinds of layouts like "All Girls", which I think is fantastic because I love, love, love arranging my pictures in ways! Stay tuned... one lucky ready will get a free copy of the program! I promise that you wont be disappointed in it-- Im not!

Monday, August 29, 2011

My First Try and Give A Way

I am in the process of launching my first give a way!

Truthfully, I am a little excited about it! It's nothing noble and it's nothing promoting a great cause which I hope to some day be a part of, but it is something fun and crafty and to one of my readers it's going to be free!

Some of my favorite past times are blogging, photography and scrapbooking and that's why this program is especially exciting to me. By using this program I can combine all three of these activities together but don't necessarily have to.

Within the next couple of days I will be posting more information not only on the program but how you can win a free copy of your very own-- from me!

Now, I realize that this example is not overly impressive but it is my very first attempt. Time has been limited and I hope to get some more done soon and I plan on sharing as I make them.

Stay tuned...

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?

Saturday, August 27, 2011

Walking With Daddy

Last night I had dinner with Justin's Mom and her side of the family. When I came home Justin was bent over Vada and her toy and together they were walking! I grabbed my phone and began recording. Justin said that I came in at the end of the deal and that she was tired. They had been doing this for over twenty minutes already! He also stated how stiff his back was. Ohh, the things we do to entertain our children.

Breaking Bedtime Rules

Sometime over the summer Vada began pulling herself up into a standing position, it wasn't long after learning how to do that when she began standing in her crib.

This is often the sight I see when peeking into Kiliegh and Vada's room and while I, the Mother, has to tell the girls to "Lay down", be quiet and go to bed", the part of me who wanted a sibling when I was younger smiles inside.

They have a bond that an only child doesn't get the pleasure of experiencing and I think its beautiful. Even if at times it means that they are breaking bedtime rules.

Salt Water Bliss or Miss

I have a fond memory of a student consular at one of the residential placements that I was in. She was a sweet girl who often did fun things for and with us girls. One of my favorite memories of her was when she brought in homemade salt water taffy for all of us to try. She had pulled it herself and it was delicious! Once she tried to make it with a few of us girls. I think it was too humid and the taffy didn't turn out right but we all ate it anyway. It's a fun memory and I have thought about doing making the candy with my girls on many occasions. So, when I flipping through my cookbook in search of something new for dinner and saw the recipe, I couldn't help but smile, get out the ingredients and grab the girls.

Remembering how fun attempting this recipe was when I was younger I thought that the girls would enjoy it as well. When I told them what we were going to make they were instantly interested. Sugar and candy.., what kid wouldn't be?

The concoction had to boil for around forty-five minutes so the girls quickly lost their excitement in the process and on more than one occasion.

However, the girls were always close to the kitchen and every so often they would peek in just to make sure that they hadn't missed out on anything.

Once the syrup had boiled to it's set temperature I poured it out and let it cool. Then, I slopped a gooey blob into Jasmine and Kiliegh's hands and they began to pull...

Vada watched with interest...

The best part of making taffy, besides eating it, is the hands on process of pulling it.

Looking back through the pictures I cant help but wonder how much fingernail polish may have chipped off into the candy and I am glad that we didn't give any of it away.

After a great deal of pulling and a lot of muscle work, I cut the ropes of candy into bite sized pieces...

... and then finally, the moment they waited around two hours for... their first taste of the candy that they made.

Truthfully, I think that we over cooked it and it went into the garbage the next day but at least we have this memory together.

Monday, August 22, 2011

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.


I've been asked quite a lot over this last week, how Vada is doing and in regards to her health how I am dealing.

It's been emotional, to say the least. I have kind of emotionally shut down. It's what I do when things become too hard to handle. I feel kind of like a robot.  I don't necessarily like it but it's something that I have done since I was a child and kind of automatically sets in. Sometimes I wish that I could just cry it out and other times I am glad for this particular coping mechanism.  My feelings come out later, when the moment has passed and I can breath again or at night when I have a moment to myself to reflect.

I pray that this moment, this bump in the road, this set back does pass, unfortunately, thus far, it has not. Vada is still having seizures just not as many as she was having two weeks ago. I think that the increase in her medication has helped, somewhat but overall has failed it's purpose of controlling them. Justin and I were discussing things this morning and we both agreed that we never actually thought the increase would work. We had just hoped to be wrong.

I called Washington University in Saint Louis, where Vada's Neurologists are now located and I left them a message. Were waiting on a response.

I have a couple of thoughts on what may happen but wont know for certain until I have actually spoke with the doctor. They may increase her already prescribed medications again. They may give add a new medication(s) or they may request for us to come back to Saint Louis. Before leaving last week we were told if we couldn't get them under control then we would need to come back for a longer (24-72 hour) VEEG. We had only had a one hour EEG last time.

Ill update more when I have anything new to tell. Thanks for everyone who has checked in and sent their prayers. We appreciate it!



The Second Time Around

The girls' first week of school went well. Easy. No homework, not even a full week. It was more like an adjustment period. This week however, is the real week. It's Monday morning and is the beginning of a whole new school year. I think that homework may start today, at least for Kiliegh, who's teacher mentioned it already. Jasmine and her grade in general may be receiving an extended break for another week or so. Jr. High is a major step from Elementary-- but I may be wrong. Jasmine may plop down into the car this afternoon with a frown on her face and a complaint of how terrible the evening is going to be because of all that she has to do. I hope not but I know better than to hope... just kidding, I know better than to expect happiness attached with homework. Hey, I was once a homework hating kid, I get it. Heck, sometimes, even now as an adult I dislike homework. I cant expect smiles and good moods attached with it, I just expect them to get it done and to do their best.
On the left side was Kiliegh's first day of First grade. On the right was Kiliegh's "first" (fifth) day of Third grade.


2009 First and Fourth grade/2011 Third and Sixth grade
How funny is it that they are dressed so similar to two years ago? Kiliegh has her hair cut and styled the same. They are both in similar flip flops and Kiliegh is using the same back pack... Funny.

Anyway, I know that I already talked about the first day of school last week, but Kiliegh was at her bio's, therefore I made today her honorary second {first day of school}. Jasmine was a willing participant as well. Every year (except for last year when Vada and I were in the hospital) I get their pictures together so I was grateful for Jasmine's willingness to smile and pose for me once again. She's kind of out growing the stage where its fun to have your picture taken, at least from your parents and she is even a little self conscience of her surroundings when I am taking her pictures. I get it, I do but the first day of a new grade is an important one and she will have to bare with me because I am going to continue to take pictures every year, even into their college years. It's in my contract of Motherhood.