Thought I would give a quick update. Baybeblue in the last week has been doing very well. She is more alert and happy than I have seen her in a long time. The seizures are not better but they seem to be different. She hasnt been having as many of the crying seizures for the last few days but just will all the sudden scream out like in pain but then 10 seconds later shes fine like nothing happened. Her other seizures that she is having have goten a little more severe and are happening about 5 times a day. These last anywhere from 10 seconds to 10 min and although are very disturbing to watch they dont seem to bother her too much. I have not had to give emergency meds once since we have been home so I consider that a huge improvement. I have already slowly started to take her off of the valporic acid/Depakote which although I am only down from 7ml 2 times a day to 5 1/2 ml 2 times a day I think that some off her new alertness can be attributed to that med decrease. I also use the switching of the clonazapham to give her more at night and I just adjusted to give her 1 1/4 of one at night and 3/4 of one during the day and she is doing amazing, has been alert during the day and letting me sleep at night(YAY) and she has some energy which is so awsome for everyone to see. I have been Standing her up alot to put pressure on her legs and she is holding up her own weight for about 15 seconds or so. It is so cute her little legs will give out but as soon as I site her down she pushes to go right back up. I think in the next few days if all goes well she will be ready to give her walker another try. It has been a while since she has had enough positive awake time to even try something like this. Last time was too soon and she started crying when I put her in it. For whatever reason this is a really bad thing with her because once she gets upset about something then she associates it with negative feelings and then always gets upset about it. Im just loving watching her play and demand attention and smiling at stuff.
Our puppy Leo had to have surgery. he had a lump on his shoulder and initially we thought it was like a little cyst or something so we did hot compresses and it just got worse. Then he started scratching the crap out of it and it got bigger so I took him to the vet. They said they had no idea what it was but it had to be removed..300 hun bucks!!!!!!!!!! I have never spent that much money on an animal for anything before ever. The surgery went well and he is doing awsome. His surgery wound is huge and looks like frankestein but he is acting 100% better. So he gets his stitches out in a few days and Im just praying that it heals and there is no more issues with it because it really stressed the kids out. Also kind of Ironic that a big part of the reason why we got a puppy was because Lala was so upset over the death of her guini pigs. So what do you think the puppy went and did? He dug up the guini pigs in the backyard and lala found them and had to deal with them. Anyways otherwise everything with the animals is good.
Taylor performed in front of the state senate in Salem and met the Govenor and a bunch of other important people I had to pretend that I knew who they were. LOL. I am so proud of him and how grown up he is handling all of the things hes dealing with. We had his basketball ceremony and watching him mess with his friends was so weird it was like his real person personality is coming out and hes turing into who hes gona be. Hes gona be that guy that gives every body a hard time and then a hug. He got his tropyhy and we had a nice pizza evening with little slide show and cupcakes.
I honestly have had the hardest time trying to get myself back on schedule since I have been back from California. I have not completely caught up on my school work yet and I feel like Im just still palying catchup running a few minutes late for everything and forgetting little things. I feel like exhausted like I need ot sleep for a few days and then start over. Time to snap out of it. Im hoping to be caught up on my school work by the end of this weekend and then Ill start stressing about the bills. Then I will need to start looking for our new house and make a million appointments. I have to have surgery on my top molor that broke and is sticking into my sinus. Its going to suck and I gota make sure Im setup with Help for Baybe and stuff before I set that up. Also all the kids need dentist appt. Lala and Tay will be easy since I got our dental insurance switched we can now go to the dentist right down the road. baybe on the other hand has to go to a specialist that takes a month to get an appt and evertime we schedule with them she gets hospitalized and we have to cancel. She really needs to get them seen, I dont think she has any tooth pain but the meds are causing havoc on her poor teeth. Also its time to schedule an appt with the CDRC people at Ohsu they are the ones that deal with the eating end of things with kids like Baybe. They deal with the swallow studies and determine if she needs G tube and then they follow with care for the G tube. there is for sure something going on with it and it need to be changed. First of all the little flap has a nobby thing that plugs into intself thats how you shut it and its worn out so it doesnt ever stay shut when the tubes not plugged in.and it seems to be like pushing out. Its like tucked right under her rib cage so I dont know maybe its becasue shes growing but it want lay flat to her stomache its like stcking out. anyway it doesnt seem to be bothering her but it is time to get it changed anyway. There gona try and get me to go with the mickey but I think Im going to choose to stay with the bard button. I explianed somewhere in the blog about the difference between the two and my reasons for likeing the bard over the mickey remains the same. Its time to fill all the supplies and perscriptions and rite aid called and we finally got the pill size I have been trying to get for the topamax for a month. She has to take 3/4 of a tablet of it and the gave me 50 mg tab but in an oval shape. A long oval shape. Ho wam i suposed to accurately cut that into 3/4 of a pill. so I simply asked that i get the same amount same dosage just 25 mg tabs so I could just cut one in half and give her one and a half. Sounds simple to me.... NOt to them apparently. I had to request it over 5 times and after several attempts on there part ot work it out with the doctors failed I had to go into the pharmacy and call the docs and actually talk them both through the whole process finally got it figured out and its finally ready. Also need to get her into the neurologist for a visit so that we can go over the report from Stanford and officially make the changes to her meds and get the perscription for the new emergency meds. Looks like I got plenty to get done so Ill go, Hope everyone is doing well. Prayers to our little buddy Ryan who has pnumonia right now and an ear infection. Hoping for a fast recovery. Love you all.
