Baylee started trying to walk today. She is starting to improve faster and faster now.

Baylee progress

Hare ya go she is trying to talk and now is crawling.

Utah again

We left at 11:00 last night after HD got home from work for Utah, because the only time they could do Baylee's MRI was this morning at 6:30. It was a long and FOGGY drive! It was hard to see much of anything which was pretty unnerving, and then there were areas with fog and snow, which HD and I got pretty nervous about. We did make it down though with time to spare (3:30 AM) so we hung out in the parking garage at Primary Childrens for about an hour watching Monster's Inc. on our portable DVD player, and then decided to go inside and fall asleep in their pull-out chairs on the 3rd floor for an hour or so until it got closer to her appointment.
The MRI went well. We won't know the results until Monday and Tuesday when we go in for Baylee's IVIG treatment and to talk with her doctors about her progress, but she didn't wake up this time thanks to Grandma Kay, who researched anestesia treatments on omsusa.org for us, and discovered that kids with OMS actaully can't be put under very easily. We were wondering why she kept waking up during all of her scans... :) Good to know! Apparently she needed to have general anestesia for the MRI, which can't be done in Rexburg or Idaho Falls (I checked), becasue they don't have the equipment for it. That is why we had to drive down last night.
Dr. Pranzitelli (the specialist from Illinois) has researched this and found that the only drug that really works for OMS patients as an anastetic is propofol. So that's what they used this time and she didn't wake up, and after the MRI, she wasn't throwing HUGE temper tantrums! It was wonderful.
After our morning at the hospital we drove back down to Kristin and Will's. Laycee has been staying down here for the last week and 1/2 and we have been missing her DREADFULLY! When we walked in Laycee and Baylee were both so excited! They were giving each other so many hugs and kisses! It was adorable :) Then I set them both down on to play (Baylee can sit up by herself now!) and they were rolling balls back and forth to each other. I am SSSSOOO happy to have both my girls again! It was a good idea for Laycee to be here because it made it possible for me to get a TON of paperwork and phone calls done for Baylee, but it was definilty not easy!

Baylee's progress

The top video is from two days ago when Baylee tried to climb off of the couch and ended up standing up next to it which was AWESOME, but then today she started walking along the couch! We are so excited and grateful for Baylee's progress! It's amazing becaue she's only had 8 injections of ACTH now.

LONG day

I am sooo tired right now! Today we had the home health nurse come at 10 am to help me give Baylee her shot. I'm actually doing better with that than I thought I would but if I had a choice, I would definitly have someone else do it, but that's okay. It needs to be done.
After that I went to Melaleuca to get my $80 of stuff for the month and I stocked up on almost every cleaning product they have, as well as hand sanitizer, chewable kid vitamins for Baylee, and some sore muscle relieving cream becaue I imagine that her poor little thighs get sore from all of the injections. I'm excited about all of the cleaning stuff, now I just need to find the time to use it! I guess I should be right now because Baylee just fell asleep.... but I am trying to become better at updating my blog.
At 12 Baylee's physical therapist came and told HD and I about different games we could play with Baylee that would help her to be able to gain muscle strength and stability, but Baylee was beside herself when he came and wouldn't let him show us... so hopefully that will go better next time.
Then a couple of my neighbors came to visit Baylee and she was SSSSOOO excited! She got to see her friends Chloe and Ezra, so she cheered right up after her unfortunate PT appointment.
At 4, the occupational therapist came and was helping me with Baylee's fine motor skills. He also said that he would try to get us a speech therapist, but appartenly there are huge waiting lists for that, and usually insurance doesn't cover home speech therapy visits, so hopefully he can help us to get somewhere with that because poor Baylee is really having a hard time talking now, and gets VERY frusturated with me because I can't understand what she wants. He also told us that we could probably get Baylee into a special pre-school when she turns 3 that would help her with her speech therapy and things of that nature, which would probably be a good idea. We were also told about this infant-toddler program that would make all of the home health visits free until Baylee turns 3, which isn't until September so that would be awesome.
After that I called social security to set an appointment (phone appointment) on Monday morning to discuss the possiblity of getting Baylee on disability. We should qualify, but I'm not sure how they will decide whether or not her condition qualifies because I'm almost positive that they don't know much about it. I'll do my best to explain, and hopefully I will be able to hunt down all of the medical information that they need. We'll see but that would definitly be helpful.
Then Kayla, Cameron, Ann and Corinne came to visit but that time I think Baylee was all visited out. She kept wanting to go into my room and lay down in my bed with me, so I felt kind of anti-social, but when I took her into the living room she threw HUGE tantrums. It was nice though because Kayla and Corinne cleaned my kitchen for me which was something that had been driving me crazy because I haven't had the time to do it today. So thanks Corinne and Kayla!

sorry...

It's REALLY difficult to find time to get on here and update because Baylee is needing my CONSTANT attention right now, but she fell asleep for a bit so I'll see how far I can get before she wakes up again. We have the ACTH now (at least some) because the National Organization of Rare Diseases sent it to us, along with an application for a grant that will cover the rest. What a HUGE blessing! Speaking with the nurse at Dr. Pransitelli's office in Illinios, (he's the only expert of OMS) the actual ACTH is the only type that puts kids into remisson, the synthetic type works to an extent but isn't as effective. So we have it now, but our home health nurse can't come twice a day so I have to give her a shot in the evenings, which is pretty hard for me because I really don't want to hurt Baylee in any way, but if it will help her to recover than I will do it.
Today I was trying to apply for disability for Baylee, and had to set her down for a minute because I couldn't hear anything on the phone, and she got SSSSOOOO mad at me that she army-crawled over to me! I was so excited! So hopefully she's going to be making some real progress sooner than we expected.
Tomorrow we have the nurse coming in the morning, and then around noon the physical therapist will be coming over to work with Baylee, and around 4 the occupational therapist is coming. So hopefully that will help her out. We're definitly praying that it does!

ACTH progress

Yesterday Kay recieved another (of many) e mails from the Senior VP of Blue Cross of Idaho stating that there is another form of ACTH called Cosyntropin, which is essentially the same thing but it's synthetic. They create it in labs, but it has the same molecular structure of ACTH, and is a lot less expensive. Apparently it is what they use in Japan, and according to the Neurologists there, it works very well. Our insurance will cover that for Baylee, so hopefully it will work. Right now our neurologist, Dr. Filloux, is trying to work out the kinks of dosage size, because apparently it is more dilluted than ACTH, but is an intermuscular injection that she'll need to have twice a day for the first week and then once a day after that, and because of the dillution she'll need one shot in each thigh twice a day, so he's trying to see if we can get it in a more concentrated form. We're going back up to Primary Childrens tomorrow to see what he came up with. We're hoping that Baylee won't have to have 4 shots a day, but honestly at this point if it will help her to recover, we'll do whatever is necessary. So hopefully we'll be coming back to Rexburg tomorrow, but we'll have to see how it goes.