Lots of updates

Sorry I am so long overdue! I barely survived fieldwork and have been crazy busy since I finished. I did finish school so I am officially an OTA. I am studying for my 4 hour test for my "C" and applying for my "L" next week. When I am all done I will be a COTA/L (Licensed Certified Occupational Therapy Assistant). I signed a contract and will start work later this year.
In May Hope & Meg graduated as a working team. We were able to meet Meg's puppy raiser and she officially handed over the leash to Hope. Meg is officially ours! As you can see from the pictures, they are inseparable. She was at Hope's birthday party too but was with me at the table. There were soooooo many kids running around! A couple of her friends from school joined us a Peter Piper Pizza. Her birthday is always hard. It's the week before school starts and everyone is on vacation that week.
Hope started 3rd grade. She is in the typical classroom thus far. It was a rough go. Her wheelchair fell over on the bus, she was without transportation the first week, was injured in PE twice, etc. Several gray hairs later, we will fast forward to last weekend. We have had about a week straight of increased barometric pressure. I believe our weather induced Hope's seizures. She has never had them before this. Her seizures are focal seizures so they do not involve and physical reactions other than starring. Not like the ones you see one TV. I am hearing of several kids that have just started having seizures in this area for the first time as well. The increased pressure in her head mixed with the increased pressure in the atmosphere takes a toll on her. She has had non-stop headaches as well. I had an appointment scheduled in November to see the Neurologist for the headaches (takes 3 months to get in there!). I was able to switch Hope's appointment with one of our foster kids so she will be going the first part of October now. She has an EEG scheduled for the 28th. My fear is nothing will show up by that time but it is the earliest we could get in. If the weather straightens out the seizures should stop.
We went to Shriner's today as well. Hips and back are still good at this point. They feel her movement disorders are more prominent than her physical cerebral palsy symptoms now. She is no longer wearing orthotics! LOVE IT!!! It only takes 3 minutes to put on her shoes instead of 15! We have had non-stop problems with her orthotics so she has been without for a couple of months now. I believe her ankles have gained strength in this time.
I'm sure I have missed some things but my brain has been a little stressed out lately. I promise to update this if anything additional happens with Hope's health. For now we are just going day to day.
Sorry to everyone who has been asking for an update on here! Time has been extremely limited.

Easter & Ortho

As you can see Meg had dun helping find Easter eggs too! I found a keyboard on Craigslist for Hope and she is in love. I wish it came with headphones though!! Not nice waking up to it.
We went to have her casted for new braces and have her current braces fixed today. She was casted. Waiting for approval from Shriner's to pay for a new complex pair. Her current braces could not be adjusted. Her legs have gotten so tight that her feet are rubbing against them and starting to cause a pressure sore. She is not wearing braces until the new ones are ready. I predict a sprain or fracture again in the near future. (Just had one less than 3 months ago!) They are making new braces that are hinged in her ankles and will allow some ankle movement. Her knees are so tight she is not able to do a long sit or put her heel on the ground while she is walking. She sleeps on her tummy and her heels touch her butt. These braces won't make her heel hit the floor but should allow her to find a center of balance. Her legs have to be crouched some for that to happen. Chances of her tendons stretching to a normal length are unlikely. Since I have exhausted every surgical option and medical option out there, we are back to good old fashion stretching everyday. Which we do anyways but now she will be on a strict schedule that all of her providers will have to take part in while I am on field work. I'm breaking out the sewing machine tomorrow and making a hot pack too. Should be interesting! I'm not the Martha Stewart type! She will have to get back in her stander no matter how much she whines too. The down side, she learned how to break out of it! I'm thinking I might need to invest in some longer bungee cords and duct tape! I will have to take time off fieldwork to go back for the fitting of her new braces. The owner is amazing and said we could do it on a Friday afternoon when I meet with the owner of the company so I won't be missing any actual treatment time. Hopefully the owner will be okay with that! Even with Hope tightening up so bad, the fact that she has all of these things against her (Cerebral Palsy, Ataxia & Dystonia) it is a miracle she is still able to walk and not a "pretzel" as the orthotist put it.
Thank you all for your continued support and prayers! They are truly appreciated!

Long Over due!

I apologize for not getting this done sooner! Things have been really crazy! Hope had Myobloc injections just before the new year. Nightmare!!! She had so many awful side effects from it including pneumonia. Needless to say we wont be doing that again. We are still waiting to hear if her soleus (inner calf muscle) is permanently paralyzed. Despite all of that she is doing well. Her legs are extremely tight every morning but loosen up throughout the day. She is still walking with her dog at school and it is amazing to see!! She is now streamlined for all of her classes!! She is in with her typical peers all day long! So proud of her! She loves reading now and use to hate it!
I just finished my last semester in the class room. I have a week off and then start fieldwork for 4 months. I work full time and pay to work. Fun times! It will be a wonderful learning experience. I am with a pediatric home health agency first and then in a hospital. Very exciting! I had 5 classes this last semester and ended with a 93, 96, 98, 99 and 100!!! Woot woot!!
May 7th is Hope and Meg's graduation followed by Desert Heat. Hope's track competition Saturday night and then Sunday early morning is Hope's archery competition! LONG weekend!! Can't wait until it is over! Hope has been nailing bullseyes at 10M and having some difficulties at 15M. She really loves it though! It breaks my heart yet makes me so proud when she gets out of her track chair. She goes back to track every week enthusiastic and then gets out of her chair and is screaming with bad muscle spasms. I'm hoping to find a way to get her in a hand cycle. The positioning isn't quite as bad but not sure her legs will let her do it. Not to mention its a lot of money I don't have. I'll find a way to make it work though.
I will be sure to post pictures of their graduation and competitions as soon as I can. You probably won't hear from me in the next 4 months unless something drastic happens though. Thank you all for your continued support and love! Hope all is well with you and yours!

New track year!

Track & archery has begun! The last picture is the best, it shows the aftermath of track! She did so awesome! They are still getting her new chair aligned to the track. She seems much more comfortable this year. Since we took her track chair, her and the dog on the first day, she had to do archery from her walker. I think she will do much better in her chair. It will give her more base support so she can place more attention on her arms. She hasn't hit the target yet but I bet she will soon! The pink bow she received for Christmas is still a little too strong for her. I have the therapists working on building her arm strength and track will do it too. She will be using her bow in no time!
Knock on wood, things are going well! Her injections are working but I don't think we will be doing that again. The side effects weigh heavier than the positive effects.
This is a short one, sorry. My plate is full and I am trying to keep up! Hope everyone is well! Thank you always for your support!

Christmas & New Years procedure!

I apologize for the late update. I have been trying to upload a slideshow and photos and have had so many issues. I even made a movie to try and post. No such luck! We had a great Christmas! I hope all of you did as well!

Last Friday Hope had her procedures done finally! She had a 1 bang MRI done on her brain. The neurosurgon texted me to let me know everything looked great (we didn't get results immediately). While she was there she had a lumbar puncture done to check her pressure levels. Her levels are still high but on the lower end of high (Hydrocephalus). Since she is not having any seizures, a shunt is not needed at this time. He feels this pressure would not be causing her head aches or other symptoms. She also had Myobloc injections. They are similar to Botox but a different strain. She was really tight a couple days after the injections. I thought it was from the injections but she has eaten the entire freezer tonight and slept in until 10am (NEVER happens!) so I think she is on another growth spurt. The most common side effect with Myobloc is Dysphagia. Meaning her mouth and throat muscles become weak. She had a horrible cough and sounded like she was aspirating (Liquids go into lungs instead of stomach). I was terrified of pneumonia but she is sounding a lot better today. Some of her speech is still a little slurred as well. The part that scares me, she was given a small dose to ensure no allergic reaction. I have a feeling the next injection might be the last. For tonight, her lower legs are nice and loose! She was even standing to play her dance game on the Wii without her braces on!

Overall, the new year is starting well. She goes back to school tomorrow and I went back today. I ended last quarter with 2 A's and a B. We have a new program director which I think is a good thing. We have a bunch of speakers and field trips scheduled. It would be nice to see some of the real world before we are thrown into it in 4 months! Yes, in 4 months I start fieldwork! My goal for 2011 is to graduate! Can't wait even though I will miss all of my new friends sooo much!

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!