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!

Halloween!

Sorry it has taken me so long to update! Things have been crazy busy. What's new right?
Hope is Strawberry Shortcake this year and Meg is a unicorn with a princess on her back! Hope's school did a book parade where they all had the chance to show off their costumes. I guess Meg was a hit!
Hope had a 2 week break from school and returned to school only to catch strep throat again. Her appointment for the neurologist was while she had strep. So we have a new appointment for next month.
Hope's resource teacher for reading called me on Friday. She wanted to see how I felt about taking Hope out of resource and leave her with her class! They have been working on the same material that the class has been working on for 2 weeks now. Hope is at grade level for reading and writing! Yeah Hope!! She is only in resource for Math now. So proud of her! Even with all of the class she has missed she is staying at grade level.
Last Friday I took her out of school early to go meet with our PT at a continuing education class. They were talking about a new sensoriomotor suit that is working on kids with high tone and low tone. It's basically a specialized spandex suit that gives the child sensory feedback to help improve their balance & function. Once Hope was suited up, she walked about 50 feet, with her hands at her side and was standing while throwing a ball. They make specialized gloves as well. I put those on her and had her write. Amazing! My mom offered to fund the expensive little suit. Hopefully I will have video of her in it soon! Not sure how long it takes to receive it.
I had finals 2 weeks ago. I walked out of Kinesiology with an A and a C in Human Occupations. My grade isn't final yet in Human Occupations. I have an 83 at this point and still need to have the teacher evaluate me on attendance, classroom behavior, etc. It could hopefully pull me up to an 85 which would give me a B. Here's hoping!
Tomorrow I start fieldwork. I have an hour drive and have to be there at 6am. Plus my supervising OT works through lunch. I am going to be a very tired and hungry Beth this week. I am also stuck in geriatrics. The one place I didn't want. Oh well, it's one week. Next week I am back in the classroom and then the following week I have another fieldwork. That one is still geriatrics but at least it's only about 20 minutes away!
Oh, Hope now has reading glasses. She looks so studious! Just a small vision issue that she could outgrow. He said it definitely isn't enough to cause the headaches. I wanted to make sure her vision was checked before we went to the neurologist.
That is all I can think of for now. I have a lot to do to finish preparing for this week.
Thank you everyone for your continued support!

Another fall!

Miss Hope fell 3 times last week. The last fall on Friday night landed us at Urgent Care with X-Rays. She is splinted and her X-Ray looked clean, however, they feel she may have fractured her growth plate. If her hand/wrist is still bothering her at the end of this week we go for more X-Rays. On the plus side, we already had an appointment with the pediatrician scheduled for this week. I guess with a growth plate fracture they don't see it until it's calcifying a week later. I'm use to the ankles and toes being injured, it never dawned on me that a hand takes out her mobility as well. Of course it's her dominant hand and without it she can't propel her wheelchair, use her walker, walk with her dog or crawl. It has been a fun weekend! Just dropped her off at school and met with the nurse about her ice & Tylenol schedule. At least she's happy now that she doesn't have to write for the week!
We have an appointment with Shriner's next week. They do her orthopedic follow ups at a clinic in Phoenix. They are based out of Salt Lake. She will have X-Rays on her hips again and I will have them check out her ankle too. It doesn't look right since her fall on it a few months ago. I trust their opinion.
I'm working on getting her into a neurologist as well. Since we have seen a neurosurgeon forever, the neurologist kinda fell by the way side. I'm concerned with her lack of balance, she struggles with memory issues that seem to be getting worse and her auditory sensory issues seem to be regressing as well. I'm hoping it's growth related but want a neuro to check her out. They can prescribe the neuro blocking medicine that should help with her movement disorder, dystonia, as well.
Over all, Hope & I are keeping up with our crazy life and having fun every chance we get! It was kind of nice having a weekend full of redbox movies and popcorn!
I hope everyone is well! Thank you all for your continued support and prayers!

School Update

I bought Meg a new harness to walk with Hope. The video is the first time the two of them used it. They are doing so great! We have a leather one but it is quite a contraption and so big that it would be annoying in the school setting. Plus it is leather and would give Meg heat rash right now. This one is light weight, padded and vinyl, I think. So much easier for Hope to put on her too!
School for Hope is going better. I think she is adjusted to the 13 new people in her daily life! She finally went all of last week without crying when I put her on the bus. I bought a guitar pick necklace with a picture of her & I laser printed on it. She wears that and it helps her not miss me. Best $10 I ever spent, thank you EBAY! Her homework is pretty crazy and they have her writing so much. She seems to be adjusting to it so I don't think I am going to fight it with the school.
Crops of Luv brought our Make A Wish scrapbook to us the other night. They have 2 great pages of our wonderful wish maker taking Hope up in his plane and the whole Disney and village experience. It is such an amazing book! If you are local, you should stop in and see it. Hope loves showing people and it puts such a big smile on her face! They were so creative with the book and I don't even know how to explain how wonderful it is! They are such great people!
I survived 6 finals in 4 days! I passed 3 of my classes. 2 B's and a C. Sad that an 84 is a C! I'm very grateful I passed Mental Health though! I still have no idea how I pulled a B in Growth & Development and Anatomy and Physiology but I'll take it! I start my next 4 month stretch tomorrow and still have no idea what grade I received in 2 of my classes. No one called me so I'm assuming I am still in the program! I had a great week off and back to reality tomorrow! This semester is suppose to be more practical and hands on. I hope so! I'm sick of sitting in a classroom 4 hours a day!
It is August in Arizona and we had hail yesterday. Yes, ice was falling from the sky during one of our hottest months. It caused collisions involving 69 cars on one of our freeways. Crazy! I loved it!
I hope all is well with everyone! Thank you for your continued support and prayers!

School has started!

What a fun couple of weeks! The first day Meg & I did a visit and show & tell of Hope's equipment and some things that Meg can do for Hope. The rest of that week Meg rode the bus to school and I met them there. Then I brought Meg home when I went to school. Things went pretty well. Meg wasn't willing to help Hope in the new environment yet, but she was adjusting quickly. Last week Meg went with Hope all day to school, alone! We all tried the lunchroom together and that was a nightmare! Hope has the last lunch period and they close up the tables along with over 200 kids in one room, a little over stimulating! They now have lunch in the nurses office and a kid from class accompanies them each day. I took in a nice bucket of fun stuff to do during lunch. Silly me has been sending lunch to school with Hope. She admitted today that if she doesn't like it she just throws it in the garbage and eats the cookies! At least I am raising an honest kid! I think she is adjusting to her 2 teachers, teacher's aide, 2 therapists, the nurse, bus driver, bus aide & 3 extra curricular instructors! And some say she isn't social! She doesn't have a choice! There have been a couple mishaps with Meg. Apparently a Chihuahua accompanied a parent after school to pick up a kid and Meg wanted to play, despite the fact that she was suppose to be getting on the bus! I guess it happened with a stray cat too. The trainer went to school the following day and of course, no animals in sight. The trainer is going back next week to work with the aide and Meg at school again. I'm a very pleased that they are helping with the transition. The school is bending over backwards to make Hope & Meg successful at school. It is very nice to see!
We went to Dr. Shafron (neurosurgeon) 2 weeks ago. He said there is another strain of Botox that we can try. It has some pretty bad side effects if the dosage isn't right. He hasn't used it in a few years and is researching current dosage amounts. He feels confident in giving it to Hope since she is still on a small dose. Now to get insurance to approve it. Meanwhile, she is still growing and tightening back up. Her Botox has definitely worn off. We go back to Shriner's in September and will have hip x-rays done again.
One of the joys of being back in public school, Hope had strep over the weekend. She missed school yesterday but went back today. She's been sick once in 3 years and within the first 2 weeks of school she gets strep. Go figure! We had her ankle checked out too. She did something to it and it was huge and purple. The ankle bone on the outside protrudes too. The doctor was not the greatest and didn't do any x-rays. She poked around her ankle and said, well, it doesn't hurt her so she probably just bruised it. This was after I got done explaining that she broke her big toe in 2 places and got up and did 2 hours of Physical Therapy. Oh well! I will ask Shriners about it when we go next month. I really don't think she broke it, but you never know with her!
Hope also had her last counseling session this past week. She was still going once a month to help identify feelings and cope with all she has been through. They cut counseling services from the state unless it is done by an intern. I passed on the intern thing. She's good! We will continue to work on feelings at home and she doesn't really remember anything other than the fact that she has scars on her belly. Since she can't see her back, she doesn't remember they are there.
I also decided to close her mental health professional while we were there. We are going to start seeing a neurologist and either her or the pediatrician can prescribe ADHD meds if I chose to put her back on them. Studies show that psychotropic stimulants given before the age of 21 can alter the frontal lobe of the brain permanently. It may be good or it may be bad. There is no way of knowing ahead of time. I asked the teachers for their input on if she is a disruption and how bad the ADHD is affecting her classwork compared to the typical kids. If she is still staying on track, I am not putting her back on the meds. I do need to get her on new sleeping pills though. These ones aren't working anymore. It's bad when mom is up until 1am studying and Hope falls asleep when I do!
Our newest supporter: North Star Bridge project. Thanks to a friend at Raising Special Kids, I found them. I was offered a full time job and almost left school to pursue it. I am struggling to pay my bills while attending school and wasn't sure how I was going to finish the school year. I met with financial aide and was able to take out some additional money. I won't see it until the end of November and it still isn't quite enough. I applied with North Star and they are helping by paying some of my bills! Their mission is to help students faced with leaving school due to financial reasons. They liked me and are helping me! After dealing with so many idiots and mean people in my life, I am so glad there are still some good, kind hearted people out there helping others! I still have a gap between my bills and income, but not as big of a gap! Something will work out, it always does!
We had our first SOTA meeting. I guess in being the VP I don't actually have a whole lot of responsibilities other than helping with decision making. We get to delegate A LOT! I think I chose the right position on the executive board! :) We are organizing a back pack awareness day at our school and a table at the upcoming AZ OT conference. Should be interesting. We don't have a lot of time to work with!
I have 6 finals in 4 days next week. Thankfully, I have a week off after that! Wish it was more but oh well! I am officially 1 year and 1 week away from graduating! It doesn't seem possible! Our class is amazing! We are all pretty close and encourage each other. Even though we all have different backgrounds and desires in our career path, we all seem to have the same values and our personalities blend really well. That comes in very handy when we are having so many issues with faculty! They gave us an anonymous survey today. I feel bad for the person that has to review them! Oh well, we are all helping each other pass and get through it. I think we are definitely forming some life long bonds! I can't imagine moving into the work force without some of them. I guess they will just be a text away though!
Thank you everyone for your continued support and prayers! You will never know how much it means to me!

Hope's Birthday!

Thanks to the right gift cards, people and coupons, Hope had a fabulous birthday! We went to see Despicable Me and then the new aquarium at AZ Mills Mall on Friday. On Saturday, our friend Carol made the most beautiful Barbie cake for her, some dear friends and family came over and she had wonderful presents! That included a gift card to Build A Bear and cash! She spent almost all of it at Build A Bear on Sunday, of course! She is now the proud owner of a unicorn called Pony along with an iCarly purse, phone and brush for Pony! There is a picture in the slide show of our birthday tradition. Every year she wakes up in her bed surrounded by balloons. Meg wasn't too happy about that! She did well though!
There are some pictures of Hope using Meg as a therapy dog with her OT. Her OT has her own therapy dog and is helping train Meg as a part of Hope's therapy. Meg is wearing a jacket the therapist made in one of the pictures. There are zippers, buttons and snaps on the sides and on the top is velcro where she attaches a dry erase/magnetic board for the kids to use. Someday when I have time, I will get creative as well. I should probably improve my sewing skills before I attempt that though!
Today we went to the Orthopedic Surgeon. I was not impressed. We are on a PRN basis though. We will call them if we need them. He officially diagnosed her with Dystonia, referred us to Neurology and back to the wheelchair clinic and Dr Shafron. Dystonia is the movement disorder I have spoke of before. Her tone is great while she is in a resting position. The second she moves/walks, a bunch of involuntary movement kicks in. She has no control over it. There is no cure or surgical procedure for Dystonia. There really isn't a therapeutic treatment to help either other than coping skills. It's just something you have that doesn't get better. There is an oral medication. Here's hoping this is the first thing she doesn't have some weird reaction to! We will see the neurologist to get a prescription for the new medication. Fun!Here's hoping it won't mess up her school performance too! The wheelchair clinic revisit is because they didn't cure our issue a couple of weeks ago when we were there. I think I might yell this time! They built her some foot plates because her feet kept getting stuck behind the previous ones. Well, they gets stuck behind these and it's ten times worse. She has also almost outgrown her chair vertically. She is so stinkin tall! Last but not least we go back to Dr Shafron next Friday. I was informed today that there are a few different kinds of Botox. Hopefully insurance will allow us to try a different kind and hopefully she won't have an allergic reaction. I'll leave that up to Shafron next week though.
Monday is her first day of school! She is definitely NOT excited! I am working on it though. I have her IEP Thursday and meet the teacher is that night. I already have 4 pages for the IEP and am not done yet. I hope they planned more than an hour! I'm nervous about Meg on the bus but I spoke to transportation and she has an aide on the bus to help out. The school doesn't want Meg there the first day since anxiety will so be high. Transportation is allowing us to put Meg on and off the bus when they pick her up though. Meg will be a wreck without her kid and visa versus. I'm hoping Tuesday through Friday Meg can ride with her, I will meet them at school and work with everyone and then bring her home before I go to school. Meg is still having issues with table surfing (stealing food) and wanting to play with other kids and dogs. She did really well at the doctor with Hope today. I think school will either make them or break them. Time will tell!
School is rough! I'm keeping up so far. If I pass each test, I am ecstatic! I think that is the overall moral of the class. It is very unorganized being the pilot program and that is what is making it so difficult. Our test today was 60 questions based on 400 note cards. They are preparing us for our 4 hour certification test. One day at a time! I have less than a year until I am done with the classroom portion. Come on May! We are starting a student organization (SOTA) and I was nominated VP! Extra work but it should be fun and will be a great opportunity to network.
I think that is all for now! I will try and post later this week after the fun filled IEP. Thank you all for the birthday wishes, continued support and prayers!

Crops Of Luv

I received an email last night from an amazing Non-Profit. Crops of Luv makes scrapbooks for Make A Wish Families. They figure it costs $200-$300 to make each scrap book and they are making one for us for free. I download all of the photos to a website and give them our memorabilia, in 6 weeks, I have a custom made scrapbook! I was hoping to someday have the finances and time to do it, now I don't have to worry about it! AMAZING!
3 weeks until school starts for Hope. So much to do so little time! Her and Meg are doing a lot better with walking together. Hopefully Meg can keep it together in the classroom! Time will tell. We have an IEP the Friday before school starts. Anything I need to provide for accommodations will need to be done quickly. I'm working on her medical records now so they are on a necklace when she goes back.
Her Orthopedic Surgeon appointment is the day after her birthday and her Neurosurgeon appointment for Botox follow up is on the 30th. The Botox lasted longer this time but with the allergic reaction, not sure what will happen. The last 2 weeks of this month will be crazy! Well, crazier than normal! It will be nice to have her back in school. I will have time to study and actually go grocery shopping if I need to rather than waiting for a respite or Hab worker to be here.
We received a free invitation to view the fireworks from the Disability Empowerment Center Rooftop. From 6-8 they had a barbecue and then a live band from 8-10 and fireworks from 9-10. It was perfect. We were able to see a couple of different fireworks displays from the rooftop and we were right next to the Tempe Town Lake fireworks. We left before the fireworks ended because someone was tired. I figured we would beat all of the traffic. WRONG! It was horrible. Not sure what we will do next year but it won't involve Tempe or any surrounding areas! Her auditory sensory issues kicked in big in the car. We drove close to the fireworks launching station and it was pretty loud. Of course I had put her headphones away already. Her and Meg both did really well before the car ride home. This is her waiting for the fireworks while "listening" to the band.

We sat right in front on the misters and we both stayed nice and cool. A little wet, but not hot!
I still have not replaced my camera. I will try to borrow one from my family when we do her birthDAY trip and party. She's excited to be turning 8. We are both getting so old! She is still growing like a weed. Can't keep up! Every time I turn around I am adjust walker and stander heights. Crazy!
I'll write more after her appointment unless something exciting happens before than! Thank you everyone for your continued support and prayers!

ADHD

Hopefully the video of Meg and Hope walking will come through. Don't mind the fact that Hope is without pants! I finally figured out how to get videos and pictures off my phone!
We went back to the psychiatrist last week for her ADHD. Hope has an annual EKG to make sure that the stimulant medicine isn't affecting her heart. The medicine is not working well. The side effect is insomnia. She had 2 hours of sleep in 36 hours. I asked about a new medicine, she wanted to try a new sleeping pill first. It did nothing. She is now off the medicine. I had a behavior specialist out her yesterday (she normally comes out for our foster kids but I wanted to pick her brain on Hope). She agrees with the no medicine decision. ADHD affects your frontal lobe, the frontal lobe isn't fully developed until the age of 21 (Thank you Psychology class!). Taking stimulants will affect the permanent outcome of the frontal lobe. Whether the affect is good or bad is a crap shoot. The frontal lobe controls judgement and your excitement stimulation (If not working properly, you are more apt to do drugs, drink, sex, etc.). After being around Hope for a few minutes, she feels she was seriously misdiagnosed. Her attention to task is okay with certain activities. She feels she may be bi-polar or just some left over behavior issues. She is also teaching a class next month on how to navigate the fun state system for mental health. An area I definitely need help with! For right now, Hope is off medicine and just kind of hanging out. I took her off it about a week ago. She has been very mellow yesterday and today. Normally she is over active, bouncing off walls and not listening to a word that is said to her. The other issue is she isn't able to retain information. She will be mid sentence and forget what she was saying because her mind is already on the next task. So far none of that. The stimulate medicine only lasts in the body for 12 or so hours. There isn't a "detox" period from it. I am hoping she stays leveled out like she is now. I have her on a Diet Pepsi a day diet. It stimulates the frontal lobe (without sugar!) to give it the slow down that it needs. I think it is helping keep her centered and I can easily send it in her school lunch too! The challenge, with the ADHD diagnosis, she receives a lot more school funding for equipment. This will enable her to have a laptop and type work rather than write it out, which frustrates her. When she goes back to school they will retest her on everything, which is good. I believe a learning disability (LD) will come out of the test. If so, I can get the ADHD dx wiped out (hopefully) and still have the funding from the LD. The Behavior specialist also informed me that Hope can have an IEP and 504 plan at the same time. 2 sources of funding. The IEP changes the curriculum, where the 504 doesn't. Hope doesn't need the curriculum changed, just extra prompts and time to get it done. I will be heading back to Raising Special Kids in my spare time to take some classes on 504's vs IEP's. I also received 2 books about IEP's as part of my birthday present. I am still trying to find the time to read those! Hope and Meg are coming along nicely. We are still having some issues with Meg but all in all, they are doing well. They are definitely a perfect match! Right down to the burps that they both let off everyday! Meg is very protective of her little Hope and is always watching out for her. She still isn't thrilled with Hope's slow walking pace but it will come. We had wheelchair clinic to have new footplates put on Hope's chair. Her legs are tightening up and she kept getting her feet stuck behind the metal plates. She is about one growth spurt away from needing a new chair and I wanted new inserts put in at a different angle but they didn't want to pay for that. They custom made foot plate add on's, which are nice, but when they were installed they rubbed on the wheels. We had to wait until the cut them down more. So frustrating! I have one last idea on modifying the chair to last longer, but it will probably throw the center of gravity off and cause her to tip her chair more often. If not, I have to decide if I am going to fight insurance again or just come up with the 2k for a new chair. The hard part, I think she will need a bigger size wheel with a bigger chair and her custom hand rims are about 6 months old. I really don't want to fight insurance for a new pair of those either. I think those were close to a grand though. Anyone have a money tree I can borrow for a while? I am half way through my second semester. This next week I have 3 tests, an oral presentation, 2 homework assignments and Jury Duty. My spare time you ask, that will be studying. I am so looking forward to fight night next Saturday! A night off from thinking! YEAH! I have had a midterm each week for the past 3 weeks I think. I haven't gone out since the last fight night! I am still waiting on my new job. It is coming, just taking longer than expected. My position is grant funded so I guess there is a lot of paperwork that goes along with that. Meanwhile, I am volunteering at parent panels for them. I kicked butt at the last panel. I think my public speaking skills are finally fully restored! My self confidence is up now that I am dropping weight and lots of inches too. Still kicking life's challenges in the butt, for the most part! For those of you that know me well will get a laugh out of this one. I have started on line dating! HA! I think I might be done already though. I haven't been propositioned for sex so much in my life! It's just not my cup of tea. Too old fashioned I guess. If a guy exists that can put up with me and my life, he will find me! I have to go research some talking teacup piggy thing that my kid wants for her birthday and do some more studying now. Thank you everyone for your continued support, positive vibes and prayers!

Botox or not

Things have been soooo busy! Hope had Botox on Friday. I thought we were headed to ER Friday night. Thankfully, the allergic reaction to progress to that point. She had a low grade fever, itchy feet and red blotches, not hives, just blotches. Because Botox is a toxin and is injected directly into the muscles, an allergic reaction can lead to respiratory failure and paralysis. Haven't talked to the doctor yet; I need to schedule a 6 week follow up. Up until this point, she has only received a quarter of a dose, this was about 75% of what her weight tollerates. Never a dull moment!
Because the increase was so big, she may not be able to walk for a while. We should know within the next few days. I told her Dr that her knees are knocking really bad again, he did a range of motion on her, no problems of course. My little darling is the most medically confusing kid on the planet!!
Hope is officially a princess. I broke down and bought her a full size bed so Meg could sleep with her. We settled on the Princess bedding (I refused to spend $50 on a Hannah Montana comforter!!).
We go in tomorrow to have her braces adjusted. Since they were sized during her sprained ankle, we are having some issues. Hopefully she will be back in the stander tomorrow. I think the stander is our last option of hope. Unless someone wants to buy her an inground pool. Someday I'll be able to afford it.
Tomorrow, I will be receiving a phone call letting me know when I start my part time job. I will be working for Raising Special Kids at the Disability Empowerment Center. I love the company, people and the fact that it is in such a great building. There are about 14 companies in the building that serve the disabled population.
I would love to post pictures, however, one of our foster kids broke my camera. Not sure when I will be able to get a new one. New tires are the first priority!
That's all I can think of for now. Thank you everyone for your continued support!

What's normal??

Hope is on her last week of school! Yeah! She has done awesome this year! Her ADHD meds make such a big difference in her. Not to mention it makes the attitude and memory problems subside too! Still not sure what I am going to do to keep her entertained over the summer!
Saturday night I had an amazing birthday party! I even rode a mechanical bull! That was a sight! Apparently I have a talent for walking off the bull when I am done rather than face planting! I came home Sunday and took Hope to Urgent Care. She sprained her ankle, again. I was a little freaked out. The dr said he saw a cyst like structure on her bone and would call the following day if I should be worried about it. (After a specialist looked at it) No call so I guess we are good!
Meanwhile, I rearranged and am working on getting a pub height counter that is wide enough for her stander to fit under. Her legs are really tight in the mornings and she is unable to walk. Since she has had the sprained ankle, she is cruising the whole house in her chair. She has a certain freedom and happiness in it. Needless to say we are keeping things picked up as best as possible for her to cruise around (and do donuts where ever possible!). We received her new orthotics on Monday, so when she can bare weight again she will use them. I bought some gel pad things to go on her knees so she stops rubbing them raw. $66 for tiny little gel sleeves! Everything in the disabled community is a rip off! Her feet have gotten really bad too (skin integrity issues). I'm having a hard time keeping up with everything. Don't know why!
I don't know how parents know the balance between pushing your kid to walk and just giving up, for lack of a better term. I'm not giving up yet but don't think I am pushing it as much.
I go to learn about a possible job opportunity tomorrow. Hopefully it can help take some of the strain off my family. My poor college life is taking a toll!
My brain is beyond fried, hard test tomorrow. I hope this made sense!
It has been a rough couple of weeks for our family. There are always issues going on behind the scenes, but these past couple weeks have been beyond overwhelming.

Spasticity explained with options

There have been questions on exactly what Hope's spasticity is and what the dorsal rhizotomy (cutting the nerve fibers) is. I found this article on neurosurgerytoday.org that has a great explination. I have also made some bolded comments within it regarding Hope specifically. Hope this help explains where I am lacking explination.


Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech, and gait. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement. The damage causes a change in the balance of signals between the nervous system and the muscles. This imbalance leads to increased activity in the muscles. Spasticity negatively affects muscles and joints of the extremities, and is particularly harmful to growing children.

Spasticity in Cerebral Palsy (CP)

In a person with CP, brain damage has occurred. For unknown reasons, the damage tends to be in the area of the brain that controls muscle tone and movement of the arms and legs. Therefore, the brains of people with CP are unable to influence the amount of flexibility muscles should have. The command from the muscle itself dominates the spinal cord and results in muscles that are too tense or spastic. People born with CP do not have deformities of the extremities present at birth, but develop them over time. Spasticity of muscles, along with the limitations on stretching and use of muscles in daily activities, is a major cause of these deformities.

Symptoms

Spasticity may be as mild as the feeling of tightness in muscles or may be severe enough to produce painful, uncontrollable spasms of the extremities; most commonly the legs and arms. Spasticity may also create feelings of pain or tightness in and around joints, and can cause low back pain.

Adverse effects of spasticity include:

Muscle stiffness, causing movements to be less precise and making certain tasks difficult to perform
Muscle spasms, causing uncontrollable and often painful muscle contractions
Involuntary crossing of the legs
Muscle and joint deformities
Muscle fatigue
Inhibition of longitudinal muscle growth
Inhibition of protein synthesis in muscle cells
Additional complications

Treatment Options

Physical and occupational therapy (doing)

Oral Medications (untollerable side effects)

BTA, also known as Botox injections have proven effective when used in tiny amounts, by paralyzing spastic muscles. Injection sites are carefully determined based on the pattern of spasticity. (just did and doesn't last this long)

When Botox is injected into the muscle(s), the release of acetylcholine is blocked, resulting in a relaxation of overactive muscles. The injection(s) generally take effect within a few days and last about 12-16 weeks, until new nerve endings grow back and the affected muscle(s) recover. Functional benefits may last longer than this. There are limitations in the number of injections that can be administered.

Surgery

Intrathecal Baclofen (ITB) (what was done and failed twice)

In severe cases of spasticity, baclofen can be administered through a pump that has been surgically implanted in the patient’s abdomen. By delivering baclofen directly to the spinal fluid, a much more powerful reduction in spasticity and pain can be achieved, with fewer side effects. ITB has been found to be extremely effective in treating spasticity in the lower and upper extremities.

Selective Dorsal Rhizotomy (SDR) (what I'm contimplating)

In SDR, the neurosurgeon cuts selective nerve roots (rhizotomy), the nerve fibers located just outside the back bone (spinal column) that send sensory messages from the muscles to the spinal cord. SDR is used to treat severe spasticity of the legs that interferes with movement or positioning. By cutting only the sensory nerve rootlets causing the spasticity, muscle stiffness is decreased, while other functions remain intact. Decreasing spasticity can improve mobility and function, and help prevent severe muscle scarring (contractures), as well as joint and bone deformities. It is utilized most effectively in patients with CP who meet specific criteria. Individuals with the following criteria are not candidates for SDR:

Patients who have experienced meningitis, congenital brain infection, congenital hydrocephalus unrelated to premature birth, head trauma, or familial disease
Patients who have mixed CP with predominant rigidity or dystonia, significant athetosis, or ataxia (the reason there is hesitation)
Patients with severe scoliosis
Patients who will not make functional gains after surgery
The benefits of surgery should always be weighed carefully against its risks. Randomized, controlled clinical trials have demonstrated that a large percentage of CP patients report significant reduction in spasticity and improved function after surgery. However, surgery is not an option for all cases of spasticity.

Semester 1 done!!

I have had a week of much needed spring break!! I ended the semester with a 3.6 GPA! 3 B's and 5 A's.I start my next semester on Monday with a tan! My main goal for my break! I got a lot of work done but not as much as I wanted. It will still be there tomorrow though! Today I spoke at Phoenix Children's Hospital in front of about 100 people for my favorite organization. I am trying to convince them to hire me part time. We'll see! Most of you know one foster boy went to an adoptive home a couple weeks ago. Well, our 2 girls will probably be moving into an adoptive home this week. It has broken our hearts even though it is a very good thing for them. We will have 1 boy left. I don't know what we will do with such a quiet home! I think I might retire my foster license. I don't have a lot left in me. I don't think I can continue, hence the part time job. I'm not sure how it would work with my fieldwork, but I'm sure something could be done.
I met with Hope's school and as soon as the doctor signs a piece of paper, we should be good to go! Since she has the ADHD diagnosis, which gives her an additional Special Education Qualification, her funding will be much greater. She will have resource classes for English and Math to start, maybe more later. They have also agreed to provide equipment like a laptop to minimize her handwriting. Hopefully things will be better this time around! They are excited about having Meg come along too! Her school ends the end of this month and she will start local public school the end of July.
Other than that, we are still waiting on insurance and doctors to shuffle papers. One of these days Hope's lazy mom will actually order her new race chair. Measurements are done, just need to make the call now.
I am approaching a landmark birthday rather quickly. My friend is throwing me a party and I am beyond excited! However, getting old has reminded me that I am still hoping Mr Right will come walk along my side one of these days. My life scares guys, rightfully so, but for some reason they think they need to have a bunch of materialistic things to offer me. (Redbox and Little Caesars is a great night to me!) I've been flying solo for almost 8 years now, I would scream if someone wanted to walk into my life and take it over! Gradually helping over time would be nice! Hopefully someday I will meet a guy that doesn't set the floor on fire when he hears about my life. As most would say, I just weed out the wrong guys quickly! If I get this part time job, I will be working at the disability empowerment center. Hello opportunity!
Thank you everyone for your continued support and prayers! I promise I will get more pictures posted soon!

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!

Preparing for the service dog

Well, Tink went to a new home this morning. It has been a very rough day. I took my depression to the store. I bought a new phone, new shoes and a bunch of Easter crap for Hope. Hope took her anger out back and played. I guess I could learn something from her!
For the first time in a long time, there are virtually no animals in my care. However, we have 2 weeks until Hope gets to pick her service dog. They are bringing 2 dogs and whichever works best with Hope stays. I have some long days ahead of me. Boot camp for the dog from 8:30 -11:30 and I leave for school at 12. When I get home from school we do dinner and then I study while Hope attempts to sleep. I guess it's not life without a few challenges!
Tomorrow I start changing the room and breaking out the service dog equipment. Hopefully my darling daughter will be as excited to help with the cleaning and preparation! :)
It has been just over 2 weeks since the Botox injections and they are wearing off already. They should be getting to their prime right now. Ugh! We see the doctor in a couple of weeks. We'll see what he thinks. Maybe a stronger injection will last longer. Time will tell, if I don't have to fight insurance again! It has been nice seeing her walk all over everywhere and not struggle and being so proud of herself.
While she was in the boot her ski's managed to grow some more. She outgrew her shoes and her braces. Mom just needs to stop slacking and book an appointment to get casted for new braces.
I guess my Facebook posts have caused some confusion. My best friend Brandi just bought her first house. I have been spending time over there completing my "honey do" list. I feel like I have moved in there on the weekends. I keep joking that I am going come to visit and not leave someday. I am still at home with the folks though. Will be for a while. There's no way I'm moving out before I finish school unless I win the lottery. I guess I'd have to buy a ticket first though!
Thank you everyone for your continued support!

Boot is off!

Just had X-Rays this morning and the toe is healing nicely. The boot is off! Shoes for a couple of days and then ease back into braces. Yeah!
We will be getting our service dog on the 31st of THIS MONTH!!!!!!!!!!! Wahoo! Finally! Now I just need to find a new home for Tink. This saddens the family but there is no way I can keep up with life, train a new dog and Tink all at the same time. I look forward to having a dog around to help out, especially now! Nice to know that Hope always has someone around to protect her and eventually catch her when she falls. The Botox is still working nicely, but we are approaching 2 weeks. Hoping for the best. If it does continue to work, Hope will be able to walk while holding onto a harness with the dog. That would be great! The dog will be able to pick up her cup, bring her walker to her, open doors, turn on lights, help her balance at the counter while brushing her teeth, etc. It will take some adjustment but will be wonderful in about 6 months when they are a well oiled machine. She has spent some time with larger dogs and no longer has the fear she did before. Hopefully this time around she will be able to give the dog some commands with authority. Not sure what kind of dog but I anticipate another golden. I will of course take pictures and videos when we get the dog.
For anyone that doesn't know, I have short hair! Loving it! I have had so many compliments. Apparently I look younger and spunky! Yeah!
I have to study for a huge test now. A lab practical on muscles. If you are a doctor going to school you have a semester to learn all of the muscles. Apparently as an OTA going to school you only get 3 weeks to learn all of them and what they do. Thank God we don't have to remember the insertion and origin as well!
Hope everyone is well! Thank you everyone for your continued support!

Botox

Botox went well! He injected her calves into the toe flexors and heel cords. She received a third of a dose just to make sure there were no reactions. She said it is helping already. Poor Hope is more concerned about the iv spot than her legs. Mom knows the right medicine though, french fries and a band aid! If only life was so simple! She had everyone in pre op and post op laughing as usual. She woke up out of anesthesia (3 minutes after being taken out) and said "I need to wake up more." That's my Hope!
Things are well! Keeping Hope on track with school and school is still kicking my butt. Midterm and quiz on Monday and than another big quiz on Tuesday. Hope has an x-ray on Wed to make sure her toe healed okay. She has follow up on Botox in 4 weeks with both doctors. Here's hoping it has longer lasting results this time!
Thank you everyone for your continued support and prayers!

No cast, no surgery!

Turns out she fractured her big toe in 2 spots. They are incomplete fractures so they are not serious. She now has a specialized shoe that she has to wear for 3 weeks. No running or jumping. She's not happy about that. She can walk though. She has to walk slowly and that doesn't make her happy either. Pretty sure Botox is still happening but will know for sure when the nurse calls back.
I received my final grade in English and Communications today. 95% That was based on bad grading too. Here's hoping I make it through psych and the muscles of the body. There's a lot of them and they are not in English!
Tonight I took part in an ASU research project. They are working on a project called SPEAK and their goal is to make disabled services/programs readily and effectively available to parents of disabled children. If it works it will be amazing! I'm happy I could be a part of it.
That's everything new since yesterday! Thank you everyone for your support!

Wheelchair bound

Well, Hope fractured her big toe on Friday. She tripped and hit it against a hard piece of furniture. She took a little chunk out of her metatarsal. I iced it and she complained about it some but no more crying or anything. It looked fine Friday night. Saturday morning she was still complaining and rightfully so. It was bruised and swollen. After 3 hours at Urgent Care she came home with a boot on and her toes taped. She has such a high pain tolerance. She is not walking but I am letting her bare weight to stand in the bathroom. She is zooming her wheelchair all over the house. It's interesting with 4 little kids running around! She's doing awesome though. We go see a new ortho this week. Hopefully she will be up and running in no time!

Amazing little girl

Hope never stops amazing me! She has been very curious as to why she can't walk like mom and can't wait to be big so she can walk like mom. I have never thought to tell her that she has cerebral palsy or why she has it. I have just taught her how to cope with it and people's questions about it. It didn't occur that I forgot this major detail until a therapist told her that she has CP a week ago. Tonight we talked about CP and why she has it. I think she understands as well as a 7 year old can. We also talked about me not having any more kids because Hope is all I need. She seemed okay with it. Maybe because I was batting her face with a stuffed animal as I said it! She's my rock and is so resilient.
Hope decided tonight that she doesn't want to do track again this year. I am not the least bit disappointed. I look forward to sleeping in Saturday mornings! Of course I just bought her a track walker. Maybe she will want to try it again when she gets a little older. She wants to try the bowling league. Her OT is making her earn money right now to save for a bowling day (She's being a terd for the PT's and this is to help make her behave for them). If she likes it, I will have to contact AZDS (AZ disabled sports) about getting her on the team. Hopefully she will be able to join soccer when it starts again too. That will be a while though. She still had an open wound when they started the season.
Hope is doing awesome in school. The new meds are still working great. We now have a sleeping that works too! She is retaining information and most of the time actually wants to do school work. She is writing cards now and spelling out words. I received a "don't like you now" card a week ago that she spelled out all on her own. Yesterday she made a huge card with her and me on it and inside the little speaking bubbles were "how are you" and "ok". Well, the letters were flipped some but she had all of them there and I knew what she was saying. She is reading to herself every night! Reading has been the biggest struggle since day one. She is doing so awesome! Her teacher just enrolled her in a head sprout program that should help her even more. She says it's fun. Have been on to play with it yet.
I passed Medical Terminology! I received 106% on my final and 101% in the class! Wish I could say the same for Anatomy! I bought a skeleton and flash cards to have at home. Hopefully that will help. I'm staying afloat but man it's rough. Still love it though!
Hopes Botox is still on for the 26th. Here's hoping it works!
All in all, we are doing well! Thank you everyone for your continued support!

Botox is scheduled, 3rd times the charm!

I filed an appeal for botox and won! Yeah! She goes in the last Friday of Feb. Here's hoping results are positive this time around! She's nervous about it. I explained that "in theory" it should help her walk better. She had to make sure that she will be able to run better too. She's okay with it now! Our favorite Dr Shafron is still doing it.
I swear Miss Hope has shot up another 3 inches! The pj's I bought her right before Christmas are now way to short! I can't keep up. Since she has been growing, she is really tight again. I'm hoping it will start to loosen up this week. I made a deal with her this week but I felt bad since she was so tight. I think I will make the deal again this week. If she walks all week, using whatever she wants to walk with, her and I will go to a movie on the weekend.
Her medicine is a God send! I don't know why I have been so against medicine for so long! I'm still against excessive meds, but this stuff is great! Just have to get the sleeping pills straightened out. She's still doing great in school. We had to cancel her reading test with the teacher last week. We are now doing it this Friday. Hope is reading to herself for fun! My inspiration! A learning disability, reading disability, physical disability and still pushes through it all. I don't have a clue how I am ever going to keep up with inspiring her! I think that's why it takes a village to raise her! I couldn't do it without all of our respite workers, hab workers and therapists!
This Saturday I will have a table at the Joni and Friends event in Tempe for the Lending Closet. I am so not a sales person! Not that I am selling anything, just to shy to walk up to strangers and start talking. I am breaking out of my shell though. I went out last night with my friend and a bunch of girls from my college class. I think it may become a regular thing. I had a blast! I'm still surprised that my legs aren't on fire from all of the dancing I did. I need to make sure they keep me away from the karaoke mic though!
I volunteered to talk in front of another 3 classes this month at Glendale College. The best part, it is 2 days before my 10 minute presentation in school. Good prep for that! I have my medical terminology final on Monday. We received our 6 quizzes back on Thursday to study from. I received 3 100's, 2 96's and a 95. Go me!!! It's nice to know that no life during the week is actually paying off! Now to pass my anatomy quiz this week! I start communications this week too. Ugh! I have a feeling I will be standing in front of the class a lot more than I would like to. They are grading our speaking ability starting this week and expect it to improve over the next 17 months. :(
Everyone around me is having a really rough time right now. For the first time in a long time, I am happy. As it turns out, happy looks really good on me! I haven't been hit on this much in a long time and I am breaking down my walls. Thank you Brandi for helping me knock them down! No Helen, Rachel and Uncle Jerry, still not dating. Still waiting for the white knight to knock me on my butt!
Well, that's all for now! Thank you everyone for your continued support! Love to you all!

Life of a student

Who knew! Every Wednesday I go to my local spot called Buffalo Wild Wings. I get dinner and enjoy a few beers while I study after school. This week however, I had to use my happy hour money for school supplies. Ugh! I guess that is called a dedicated student. So far I am averaging 96% on all of my quizzes. We had a 50+ question pop quiz that we had to finish in 15 minutes. I was one of four people done! I think I did well but our professors aren't great at returning quizzes in a timely manner. I have a quiz everyday this week, 2 quizzes on Tuesday, a final on the following Monday and a paper due on Tuesday. This is just crazy! Monday through Thursday I do Hope's school and therapy, leave at noon for my school, get home at 5:30 and study until after midnight. Friday is normally appointments for Hope that I couldn't fit in during the week. The weekend is left for a little play and a lot of studying. Still trying to figure out where I can fit dating into the equation! For those of you that ask the question a lot, I am not currently dating. I'm still waiting for someone to step up to the plate and join my never boring life! :)
Miss Hope. Well, her Botox was cancelled. Insurance decided they weren't paying for it. How they can approve to very expensive Baclofen Pumps and deny a couple hundred dollar Botox injection is beyond me. So I wrote up a long letter, made my therapists gather a bunch of paperwork and I certified my appeal over to them. Another thing I really don't have time for but is worth it. I'll keep you posted on how that goes.
Hope is doing really well in school despite all odds against her. The new ADHD medicine is helping keep her focused. The down side, the sleeping pills are no longer working. She is up until after 11pm every night. I'll be calling Monday morning to get something stronger. The other ADHD pill I was offered requires blood work every 6 weeks. Like I need another appointment! Plus Hope has a thing against needles. Can't say I blame her.
Her counseling is still going well. She should be released soon. I'm still amazed at how well she has done with all of it.
Her school is still refusing to have her tested for Dyslexia. I was asked to volunteer at another parent panel in a couple of weeks with Raising Special Kids. While I am there I will see the lady that handles all school complications. Hopefully we can get that straightened out.
Many of you probably don't know that I do a lot of volunteering too. With Raising Special Kids (RSK), I go and talk to college students about life with a disabled child and I do one on one "guidance" for mom's with special needs children over the phone. I am still running the Lending Closet but some really amazing therapist friends offered to store and manage the equipment. I don't know where my life would be without them!
There's probably more but my brain is so fried. Thank you to everyone for your continued support!

An everything update!

Hope's botox has been pushed off to the 15th and we are still waiting for insurance approval. The specialist we were suppose to see has been denied by insurance. Ugh! Gotta love insurance! Hope has been officially diagnosed with ADHD and has started medicine. Here's hoping it works! The nice part, a side effect of the pill is insomnia. So where's the nice part you ask, she gets sleeping pills!!!! For any of you that truly know Hope, you know that sleeping is a constant issue. It is so nice to see her wake up without bags under her eyes. I finally spoke with her Special Ed coordinator at school today. They are working on accommodations for her AIMS (spelling?) testing and other school work. I also sent them a script from the psychologist stating that she has ADHD and insurance will not cover Dyslexia testing. So hopefully the school will send us somewhere to get a learning disability diagnosis. I think that is all on Hope for now.
School for me is CRAZY!!! I had a pop quiz on day 2, a final exam on Thursday which will be a presentation, a paper due on Monday, working on a second 10 minute presentation due next month, ugh! After this final I have medical terminology which we will complete in 2 weeks. Yes, another final. I have at least one final every month. We finally saw the lab yesterday. It is awesome!! I can't wait until we are spending more time in there. Next week I adjust to scrub life! Thanks to Rachel I found the most comfortable scrubs on the planet. I may never go back to real clothes for work! My next 18 months are in a blue polo, khaki scrub pants, white tennis shoes without mesh, hair up, unpolished nails, no jewelry and a thermal top under the polo. I love it though! I feel like an adult, my vocabulary is expanding and my brain is trying to explode in my head! I could go without the 70 pound backpack though! Hope was excited to see that Mommy received a coloring book for school! I had to go buy colored pencils. Ha! Almost 30 and I'm buying colored pencils in the kid isle for myself! (anatomy coloring book) 2010 is proving to be a life altering year! In a good way! Here's hoping my 6'2" husband comes walking through the door! (Still single, class options are not appealing!)
Thank you everyone for your continued support! I hope everyone is having a wonderful new year!