Postponed to next week

I received a phone call this morning and they are doing an MRI and myo block injections (different form of Botox injections) next week. The scheduler gets back Monday and will get us a date then.
Happy Holidays!

Wouldn't be the holidays without the doctors!

Where to start. I'll start with my good news. I pulled an A in Physical Dysfunctions and a 98% on Fieldwork! Go me! Still waiting on my Documentation grade, that will definitely not be an A. I will just be pleased to pass!



I believe Hope was approved to continue 2 hours of physical therapy and occupational therapy in the home. That's what her case manager told me but it hasn't quite made it on paper yet. With all of the cut backs going on, it is a miracle to have it approved for another year. I love her case worker and her therapists! We are truly blessed to have them as part of our team. Plus her Respite hours weren't cut! (state paid babysitting so mom can study & have a life!)



Tomorrow we visit the pediatrician. I have a list for him but most importantly, I think she messed up her left foot and her right knee. She has been complaining of her left foot for over 2 weeks now but it never bruised or showed any swelling. The fact that she is complaining about it is significant though. Her right knee is another bump that she often gets from crawling but can tun into an infection pretty quickly. Hopefully the doctor will have a trick to make them go away quickly. I also want him to follow up on the x-ray she had months ago on her right foot. It turned out to be a sprain but the urgent care doctor said he saw a spot and they would call me if it was something. They never called. Time to verify!



This past Friday Hope was suppose to have Botox. Our neurosurgeon is AMAZING! His nurse scheduler, not so much! She messed up all of the paperwork. When we saw the neurologist a week and a half ago, we spoke about her symptoms she has been having lately. He feels her hydrocephalus may be getting worse which is what I suspected all along. I called the neurosurgeons nurse and requested a spinal tap pressure test at the same time as Botox since he was already going to have her under. The nurse responded on the 15th that Botox would be on the 17th and no MRI is needed (not what I asked for!). Friday morning we get to the outpatient surgery center (we are normally in the hospital) and she didn't chart her allergic reaction so the new strain of Botox wasn't even ready. Then I told the neurosurgeon about the neurologists visit. He was very upset with his nurse, apologized up one side and down the other and then yelled at me too. I have his personal cell phone number and I didn't use it. :) He is such a great man! There is just something about calling a neurosurgeon on his personal cell phone that is a little intimidating! He asked if we would come back in this Wed to do Botox and a pressure test. Big shocker, I come home Friday and I have an email from the nurse stating that she could not get us in for an MRI on Wed. Ugh! The moral of the story, if her pressure test is high, she may have a shunt placed. It is a pump in her brain that has a tube that runs down the neck and drains the excess cerebral spinal fluid into her stomach and then she voids it out. If you have met some of our past foster kids, some of them had shunts. On the up side, if a shunt is placed, that explains why her Baclofen pumps failed and there is a very high chance a pump would be successful with a shunt in. Even though it's scary, it could be a very great thing for her. She would be my bionic daughter, but she would be a happy and independent bionic daughter!
Here's hoping we make it the first year in 3 years without being in the hospital on a holiday or Hope's birthday!
For those of you that are familiar with our household, our foster girls moved into an adoptive home on Friday. It has been very hard on the family and Hope. I went back and forth on adopting them but decided the smallest child had to many special needs to manage all 3 girls on my own. Hope and I are both on a 2 week break from school which is great for us to spend time together, however, the house is very quiet. I am doing everything I can to keep Hope distracted from the silence.
Over a year ago we were in Disney World on our Make A Wish trip! It doesn't seem like it has been a year! A year later my daughter still has a sparkle in her eye! That trip uplifted her spirits so much and gave her the much needed endurance and strength to keep improving everyday! Thank you to Make A Wish & a special guy for making my daughter's wish come true and providing her with something I couldn't!
I will post again as soon as Botox and/or Christmas is complete. Thank you everyone for your continued support and prayers! Hope & I wish everyone a Happy and safe Holiday and I hope your dreams come true!

Neuro update

Sorry it has been so long. We have had hospitalizations in the family and then the family was hit by the sickness. It's been a long month! Hope and I are finishing up school over the next two weeks and are very excited about Christmas break! My only 2 week break from school and Hope and I might actually get to spend some time together!
Hope finally made it to the neurologist today. She is getting Botox injections from the neurosurgeon again in a couple weeks. We are still waiting for an exact date and which strain they are trying. She had an allergic reaction last time so they want to try a new kind this time but it is a much scarier form of Botox. We go back to the neurologist in 3 months when I will try a new muscle relaxant medicine on her. The doctor doesn't hold much hope. She has so many weird reactions and it will sedate her and make her regress in school. It will be a short term help if it works. There is nothing more they can do for her except deep brain stimulation. I am pretty sure I am against this option. They would implant electrodes into Hope's brain and place a little computer device in her stomach that would send electrical impulses into her brain. There is a lot of controversy over it but has had some positive results. If I did choose to do it at this point I would have to take her to Texas or Washington to have it done and pay cash. It's very hard when you realize you have run out of options to help your kid.
Hope is doing well in school and in life. She is still growing like a weed and maturing everyday. Knock on wood we haven't had any major injuries in a while and she is wearing her braces like she is suppose to. Her and Meg are ambulating the school classroom nicely as well. There are still a few issues to work out but Meg is working on opening our sliding glass doors and turning on and off the bathroom light. Hope is still afraid of going to the bathroom alone! Maybe someday she will outgrow that!
I hope everyone is well! I will post again after Botox of Christmas, whichever comes first. Happy holiday and thank you for your continued support!