Hi Everybody!!

Well I finally feel back to myself, Baybe is back on trac with therapy and were very excited to be starting a new playgroup through her therapists where she will get to interact with other kids her age that are like her. It is also going to be a great opporunity to meet some other moms. Layla started on a new Dance Team and I start school monday, not sure exactly yet what Tay is going to start doing its been a toss up between soccer, karate, and football, although I think it will all come down to what is available on the days we arent already busy. Baybe is doing really well and is now only having several episodes of eye fluttering a day. For the most part she has gone almost a week without a single jerk. We did have the swallow study done and unfortunately the news was not great. They started out with different consistancies of this stuff that glows on the live x-ray. THe thickest texture is first which resembles pudding. She swallowed two good size bites in one swallow with no asperation, and I was very pleased about that. Then on the third bite she struggled and had no swallow responce so after it teetered in the back of her throat for a minute part of it then slid rite down into her lungs. They stopped the study there and approved her for two bites of something very thick every few days. Now finding something like that on the ketogenic diet would be the challenge. THen they wanted to see what was happening when she had jello off of her binky which is her favorite thing in the world and the only taste she is allowed. THey dipped her binky in liquid that also glows and when I put it in her mouth the liquid sat in her mouth for a few minutes while she sucked away on her binky she never swallowed. It also teetered back and fourth with her sucking on the binky and then also slid down into her lungs. They said sorry NO MORE JELLO. This is bad, she loves her jello, she whines for her jello. Luckily she did well. She whined for one day then seemingly forgot about it completely. I have since talked to the dietician and for her occasional 2 bites she is allowed she has been cleared through the diet to have baby food meats n gravy and some baby food veggies like carrots and green beans. I havent done it yet though cause it kind of feels like it will just make her more upset because she is not going to want to stop at 2 bites and then I will feel bad. We have goten notice that the state plans to sell our house and since we are moving into a one story anyways it wont effect us. We may be on the hunt for ourselves though in the next few months if we havent had help finding one then wele be looking ourselves. There is not much available in my area so Im a little nervous about that but also excited for a new place. Baybes chair will be here finally hopefully in the next month and we will need a better place for her to be. Hope everyone is doing well, Peace and Love!! :)

life goes on.....

Since I last blogged we have been trying our best to enjoy our summer and get our lives back to whatever normal we can find. We had a great time at the beach it was sunny and warm and there were no health problems at all. We attended our first United Cerebral Palsy event at the Oregon Zoo. It was a hot day and and everything was free but the on thing I didnt think about was how it was going to effect me when I saw all the children and people in wheelchairs and struggling to live. The last event like this that I went to was a convention of sorts for disabled people and I lost it crying hysterically like a baby. I guess it really doesnt seem that real to us until we are in a surroundings where she is acknowledges as a "disabled child" it is overwhelming and heartbreaking. This time we walked up and were greeted by two men that were in wheelchairs. They were both very disabled but were so independent and happy and I just wanted ot hug them. I felt the tears weld up in my eyes and It took everything to hold them back. The pressure builds up in my throat and then I look at my beautiful Baybeblue and she makes me feel so much better. I guess I just cant believe this is really something that is happening to us and will be a part of our lives forever. Im so worried what she will be like when she gets older and if she will be happy. Some disabled people are very high functioning and happy but some are obviously miserable and in a constant struggle with the world around them. There is just no way to know what Baybe will be like and it is sooooo scary.

Baybeblue herself is doing pretty well. She started with the increase in seizures and it just seemed to be getting worse n worse so she is now back on the klonopin and the seizures are slowing back down again. We are also using some new methods to stop the seizures whick are working well and usually within a few seconds of the seizure starting. One thing is picking her up. EVeryone has always taught us that you should never disturb someone having a seizure but I truly believe the opposite. When we pick her up the upward thrust is enough to snap her body out of it and the seizure stops, if it doesnt than a few hard pats on the back seems to do the trick. Also when I am not in a position to swoop her up I have been trying some pressure points. The one on your wrist that also stop nausia or motion sickness I read could also work for seizures so I have been trying that and it has good results as well. She was also having some sleep issues when she was coming off the klonopin. Suddenly she was up all night and sleeping all day so thankfully now that she is back on it it flipped back and she is alert during the day besides one or two little naps and she is sleeping well at night. She is now 31 pounds and officially 3 feet tall. Its crazy to think of what she would look like if she was walking around. We have only had to take her to the doc one time for this rash that is on her elbow which has been there almost two weeks. They just measured it, told me to watch for fevers, and come back if it gets worse. We have a swallow study on the 10th so we are very excited to see what kind of progress she has made in the last few months. I know I havent heard any asperating in quite a while so this could mean she gets to have some bites of something again.YAY!!

The other two trouble makers are doing well and are ready to head back to school. Taylor is excited because he has missed all his girlfriends over the summer. He also has alot less to worry about because due to changes in the school he will have the same teacher and classroom as last year in 3rd grade. He liked her alot so this is a good thing. Lala on the other hand is a ball of nerves. SHe is heading into junior high as the smallest kid in the school. Everyone grew over the summer and every girl I saw was as tall as me. I just keep telling her to be as nice to as many people as she can and make as many friends as possibel so she always has someone that has her back. Im nervous for her but she is prepared and she is so smart and amazing I know she will do well. She actually told me that I could not walk her in and help her set up her locker. I amshocked and thinking there has to be a way to convince her that it is required. The schedules are all crazy too with Lala starting school at 9 30 and 10 30 on wed's. Taylor starts earlier at 7 45 so he will be home at 2 but she wont be home til after 4. That pretty much my whole day right there getting them to and from school. THey both beg me to ride the bus but I just dont feel ok about it. I need to see them go into the school and I need to see they are ok as soon as school is over. I may be a little over protective but I love my kids so much and we have been through so much it is just hard to loosen the reigns I dont want anything else bad to happen.

I am doing ok I guess healing slowly but surely. My wounds are almost healed on the outside but one of them still hurts pretty bad on the inside and my stomach muscles may never be ok. When I bend over to pick something up sometimes I feel a little rip in my stomach and the Doc said that its normal to have pain because of all the scar tissue whatever that means. Im suposed to massage them but they hurt so I dont want to. I am able to carry Baybe around now though as we dont bump belllys. I have been working very hard on getting Baybes chair to come through but the process has hit every snag possible. From Docs signiture to wrong diagnosis codes to insurance companies it has been a journey but I believe I have done it with the aid of a great therapist at ohsu named Dave Olson. Hopefully we will have the chair soon and I will put some pics of her in it. Now we just need to get wordabout our new house and I will feel more comfortable. The word is that there is a one story that might be perfect but its being remodeled right now so Im very excited. A one story is just a necessity for Baybe especially once we get the chair. I just cant carry her up and down stairs anymore I feel like Im having mini heart attacks so we are confined to the downstairs in the house away from the kitchen and living room. I almost have anything in place to start back to school this term starting sept 20th as long as my financial aid come through I will start back with a little lighter load incase things get bad again. The school is making me jump through alot of hoops to prove that I can handle it so I better do a good job. Now I just need to get my own internet and laptop so that I can write on here more often and kick butt at my school work. Hope everyone is doing well Happy Labor Day!!