Doctor Update

Friday we went to Dr. Shafron. Our friend and physical therapist, Rachel, was able to meet all 3 of us there! We waited for 2 hours. Meg did so awesome. Even put her front paws on the table to say hi to Hope. She slept the whole time the doctor was in there. Anyways, Rachel, Dr. Shafron and I had a good conversation about Miss Hope. The Botox is actually doing well. It has worn off some but did do it's job. He put in for continued Botox injections at a higher dose. Here's hoping I don't have to file another appeal. Probably will though. Hope had a growth spurt while her toe was broken. This resulted in her inner thighs tightening up again, to the point that her knees are rubbing raw in places and forming calluses in other spots. Dr. Shafron feels that her problem is a mixture of spasticity (the tightness) and dystonia, a movement disorder. Nothing can be done for a movement disorder. Since she did so well with the pump and that would only relieve the spasticity, the question was raised if a Dorsal Rhizotomy should be considered. A Dorsal Rhizotomy is a neurosurgical procedure that selectively severs problematic nerve roots in the spinal cord. After raising that question we talked about how she was 10 degrees away from having hip surgery before she had the second pump put in. (Having the pump for a month was long enough for everything to stretch and release for a while) Hope has now been referred to an orthopedic surgeon to see how close we are to hip surgery and if they feel she is a good candidate for a Dorsal Rhizotomy(DR). I'm still not sure of my feelings on the DR, it is very permanent and does include some high risks. Haven't received notification on when the appointment is yet. Have to wait for insurance to approve it first. They're a big pain in my butt! (Let me tell you how I really feel!)
On a positive note, us girls went to the water park yesterday. Meg was scared and ready to attack another dog at first but settled nicely. I didn't attach her leash to Hope since it was Sunday and there were a bunch of kids running around. Once the mornings warm up a little more we can go while everyone is in school and try again.
I need to go for now, still lots to do!

Slideshow

I posted the last pictures wrong, sorry! The text will be in the post before this one. Sorry!!

First week with Meg

Meg and Easter

It has been a week! The girls are starting to get along really well. It will take about 6 months for them to become a well oiled machine. Meg is bringing her leash to Hope along with shows, drinks and toys. Meg is walking along side Hope's walker/wheelchair and with a specialized harness. Meg is also bracing (standing firm) so that Hope can use her to stand up. We are working on tugging so Meg can eventually open and close doors. She can shut normal doors for Hope, no sliders yet. Meg is such an amazing dog! We have also been working on car commands. We get to try them again tomorrow when we go to the doctor. I still have a written final and walking final for Meg. Not exactly sure if I am doing them tomorrow or in 2 weeks. The trainer is on vacation next week. That's okay with me though, gives us more time to practice! Soon Hope and Meg will be certified as a team and then they will graduate next year as a team.
Hope was approved for a Challenged Athlete's Grant. What does that mean? Hope will be receiving a $2,700 racing chair through this grant! She will have all year to practice and then rejoin the track team next year. It involves some PR but she is pretty use to the media now!
Tomorrow we go see Dr Shafron for Botox evaluation. She is still standing nicely but she knocking knees again. For some reason her quads (thighs) are tightening up again. I think it has lasted to long to be a growth spurt. I just wish we could find something to help. Her poor knees are building callus again from rubbing. I think we are going to try theratogs again but they are so hot and kind of annoying. Especially when you add dog care and normal braces to the routine. We could easily spend an hour every morning just getting Hope and the dog ready to go.
Next week I meet with the local public school. Hope has been attending an online public school this past year. It has been going nice but mom needs the mornings to study and get in some lab time. There are pros and cons to both. My biggest concerns with her going back to school is I won't see her anymore and there tends to be a rotating door for aides. We can't have that with a service dog. It means I have to cut back hours on a lot of providers too. But on the plus side it would give me a lot of weekend respite if I could find someone to work it and magical funding so we could go do things!
I know of a job opportunity coming up next month. I may apply for this part time job. It's with a work place that I love but it will add a big load to my plate. Part of filing for state services a while back required me to file for child support enforcement. Now they decided to do an update to my child support. I am losing a big chunk of money each month. Wish it could have waiting until after I was out of school. We always make it by though! Something will work out.
I'm on day 3 of Nicoderm CQ. Yes, I have quit smoking, again. Let's hope it lasts more than two and a half years this time. I threw a patch on Monday before school and had to leave my class half way through. I was so bad two class mates came running down the hall after me. Apparently I was white as a ghost and they didn't think I was going to make it out the room. After half an hour of sitting in the teachers office and them force feeding me crackers and caffeine, I was able to stand without falling over. Why I though it was a great idea to quit the week before finals and second week of boot camp, who knows! I haven't killed anyone yet though!
Finals, ugh! My last week of school for this semester is in 2 weeks. (and I get a week break that is already packed full) I had a final today (96% in the class) and I start the rest next week. The only one I am really worried about is Anatomy. We have a HUGE lab coming up on bones and muscles combined and then a written final on bones, muscles, skin, nerves and the brain. Just a few things! I got an A in Psych, can't remember if I told all of you that already.
I am taking on a new volunteering job too. Yes, I know, I'm crazy. I will be having physicians in my home to learn about life with a special needs child. My brain is mush so I can't remember if I already said I am doing a huge conference at Phoenix Children's Hospital on May 1st. I am one of the parents sharing my story and answering any questions other parents may have. I love it!
Sorry for the novel, a lot has been going on. That's the bulk of it! There's a lot more but I don't want to bore you anymore! I am going to try and update at least weekly, but it may not happen until after finals. Thank you everyone for your continued support!

Surfice dog

This is an amazing video and it shows the work that is put into a service dog from the beginning. Happy Easter everyone!
Service dog turned SURFice dog.

http://www.youtube.com/watch?v=BGODurRfVv4

Meet Meg!

This is Meg! She is the newest member of our family. Meg and Luke (the darker dog in the water) came to visit us on Wednesday for our first day of boot camp. Today Meg was able to come home with us. Hope and Meg are on umbilical cord training for the next week. They are tied to each other 24 hrs a day. This part is the hardest for me. I am not able to look at, talk to or really touch the dog while they are bonding. No one is. Hope and Meg have to learn to become one. It so hard to see such sweet puppy dog eyes and not pay attention; especially when Hope seems to think that Meg should be psychic! Hope is starting to give some strong demands but still lacks the needed enthusiasm to get Meg excited to work. Hopefully it will come soon! Meg is a vary calm and gentle dog. She turned 2 years old a couple of days ago. We will continue to make slow and steady progress until they become a well oiled machine.
I forgot how expensive this is to start! I was given some gift cards in the past and I was able to have most everything I needed. Some equipment can't be bought until you have a dog though. I spent a nice chunk of change at PetSmart the other day on food, treats, an easy walk harness, etc. I will be spending a lot more at the vet to start up a wellness program and just bought some boots for the hot pavement. I still have to invest in an expensive harness so that Hope can use Meg to walk instead of her walker or arm crutches. Power Paws was kind enough to let us borrow one of theirs to get Meg and Hope use to the big contraption. It is so worth it, just very draining!
Tomorrow we will do our first outing at Tempe Marketplace. Next week is full of doctor appointments, vet appointment, outings and my walking final. I have a quiz every night after boot camp based on our lectures and the final at the end. I will keep you updated on Meg and Hope over the next week and attempt to get some videos on here.
Hope's Botox is pretty well worn off. She has tightened up so quickly. Her knees are bright red again from smacking them together while walking. We see Dr. Shafron next Friday before the walking final. He will be so excited to see Meg! He knows that we have been waiting for a dog. I feel we have met the end of the road for any doctor options to help Hope. Good thing I have such amazing therapists in the house! Just wish there was more I could do for her. It breaks my heart every time she falls and tries hard to do something that her body won't let her.
I am meeting with Hope's school later this month to see if returning to the physical school is a good option. There are many pros and cons for both schools. The mornings without her would be nice for me to study; however, I would not see my daughter anymore! Therapies and Hab workers would have to shift to afternoons and she would be someone that just lives in the same house as me. Time will tell!
My school is good but crazy! Less than a month before the end of first semester. It has flow by! We are all busy preparing for finals and praying we can pass A&P. Can't wait for my week off! The class is headed for another fun night out together next weekend. It is so great that our class gets along so well and we all encourage and help each other out as much as possible. There are some amazing people in my second family!
I'm sure there's more, but I have to get back to work! LOTS to do! Thank you everyone for your continued support and prayers!