Today was Baybeblue's first follow up appt with her favorite Doctor neuro Dr Coryell. He said and I quote, "Baybeblue is doing quite well. I am happy to see her improved developement." So he decided that we could slowly try to take her off the klonopin and see what happens. She was alert and active for her appt, even rolled over and smacked her head on the wall. Overall things went so well she doesnt have to be seen again for 3 months unless something happens. her 2 seizures a day have now turned into 5 or 6 way smaller ones so I dont know if this is a good thing or a bad thing because they are much weaker yet more frequent. We talked about getting her depakote turned into pills so that we can get the last bit of sugar out of her diet for full hetone levels. That on top of changing her formula to stronger levels should hopefully get rid of the last few seizures. I am so happy she is so happy and doing so well. I met a family at the hospital with 2 beautiful children and hopefully made them feel a little better. ther youngest was about 2 and had to be hospitalized with a feeding tube up his nose because he was not gaining weight and they have no idea why. They were scared and had alot of questions. The saddest part was that on top of everything they were concerned for how they were going to pay for it. I guess ther isurance does not cover the hospitalization and it made me sad. I couldnt imagine dealing with the pain I went through and be trying to figure out how Im going to pay for it. Thank god for the Oregon Health Plan. Its pretty sad that I am in a better position than them because I am single and broke. I gave them my blog info and the youtube video info so they could se eme putting the tube in myself because they were nervous about it. They were a beautiful family and I am praying that everything turns out ok for them and that they stay strong for eachother.
G-TUBE ADVISE-I have been thinking alot lately about the g-tube that is in Baybeblues belly. We are suposed to get it changed soon to the mickey button that we originally picked out. We just had to have this one for now because thats the one they put in during the surgery. The thing is that the resons that I didnt want this tube are different now. I like the mickey because the feeding tube locks in and cant be pulled out. Now that I am experiencing it I realize that if it cant pull out of the button than if it gets yanked on then it will pull on her belly and that would hurt her very bad. I like that it pulls out if it gets stepped on or something I would rather have a little spilled milk then her whole inside stomach contents. I liked the other one also because It can be changed at home without going to the hospital. Now I realize that this one wont fall out so I dont have to worry about having ot put it back in and it doesnt have to be changed as often so its not a worry. I also am thinking about the biggest issue that I have found that it hurt her when she lays on her belly because it sticks out a little but the mickey sticks out atleast twice as far so she would never want to be on her belly ever. Basically what I am saying is that I think I was wrong about that button and I think the one she has now is better. It is called a bard button.
Just because several people have asked me I thought I would let yall know that I never got my little break I was talking about. It wasnt that I didnt want to do it but it just didnt work out. I am hoping that it will happen soon maybe for my Bday that is coming up in August. I also had a thought today about applying for a grant to open a gym for people with disabilities. There could be all kinds of equipment and a therapy pool which there is not one in the area. It has to be a cirtain temp to be able to be theraputic. That would be so wondereful I could just work there and spend everyday there playing with Baybe. I have also decided that Im almost positive I will have to go back to school next term because everything else in my life besides Baybeblue is starting to unravel. My internet/cable/and phone line got shut off because I just couldnt pay the bill anymore on top of the other bills. I am now using my wifi to pick up the neighbors internet and have a terrible signal so its very slow and not always there but im makin it work. I dont mind the cable being off but the phone line made me feel safer because if something happens to Baybe than I can just call 911 and continue helping her and they find me but on a cell then it is a much longer process. I should have known that it would not workout but It just takes so much time away from Baybeblue. I wish there was another way because Im sure there are so many women in the world that are in the same situation. I just dont feel ok leaving her with anyone so Im screwed.
Disabilities Advice- I found out that I just need to go to the state parks office near loyd center and fill out the paper for free camping pass and have a doctors note stating her disability and thats it I get a free camping pass for life to all state parks. how great is that? It also allows us to get a cabin or yurt with wheelchair access and electricity for Baybes machines!! Im gona start planning our trip right away I am very excited because I didnt think we would be able to do anything like this for the summer because of the electricity problem for her. This is perfect.
(ABOVE) I added a few picks of dinner at my dads when Baybe was interacting with her amazing cousin Elishuba. They were so cute together. Elishuba got a little frustrated that Baybe didnt interact with her as much as she would like but it is going to be amazing to watch ELishuba grow being comfortable around a disabled person which is something most of us do not know. I cant wait to see how she adapts herself to play with her cousin Baybeblue.
