Crazy time of year!

Things have been so crazy lately! I start school on Monday and have been trying to get my mile long "to do" list done! The nerves are in high speed!
Hope goes to see Dr Raben tomorrow. He is a mobility specialist. Hoping he has some more ideas on Hope. Dr. Shafron, our amazing neurosurgeon, sent us to him. Next week she goes for her first psych appointment. She should be getting an ADD or ADHD diagnosis at this appointment. I am hoping they can also diagnose her learning disability here. I am pretty sure she has dyslexia. Then on January 15th she goes in for Botox. She was suppose to have botox Monday but insurance is taking their sweet time to approve it. I was able to get it scheduled on a Friday so I don't have to miss school.
We had a wonderful family Christmas at a local park and a great Christmas at home! Hope wanted a skateboard for Christmas. I pulled it off! She loves it! I attached a new skateboard to her old walker.

From Plane Ride

I hope everyone had a wonderful Christmas and has a safe and fun New Year! Thank you for your continued support and prayers!

School Orientation

I apologize for the poor video quality. Before I uploaded it I double checked it. Everything looked fine. After I uploaded it my subtitle timing was off and it cut letters off the end of my words. Sorry!
Today was my 5 hour school orientation. Thank God it was only 3 and a half hours long! I had my picture taken, ordered our polo shirts and received the handbook. The class ranges from 19 years old to mid 50's. I was shocked to see about 10 guys in the class. I start school on January 4th. In September 2011 I will have an associates degree and hopefully by a certified occupational therapist assistant. It's been ten years since I have been in school so I am a little nervous. Okay, a lot nervous!
Lots to do and a little time to do it in! Happy Holidays everyone!

Make A Wish Trip

This is my first video attachment, here's hoping! We had an amazing trip! I don't even know how to put it into words. This is a 30 minute movie of our trip pictures. I hope you enjoy!
I took an additional large suitcase with us to pack our souvenirs in. I had to sit on it to close it and shove stuff in our clothes suitcases as well. She had a new gift delivered to the villa everyday. It was just amazing!
Thank you everyone for your support, love and prayers!

Plane Ride

I am trying to add a slideshow this time. Lets see if it works!
Kevin is a wonderful man and is also one of Hope's Make A Wish guys. He took Hope and Grandpa up in his plane yesterday. Hope had a blast!
We are 4 days away! Busy packing and preparing!! I don't think there is enough time for me to catch up on sleep before I go. Oh well! I've been sleep deprived for 8 years now!
Thank you everyone for all of the warm wishes and support!

So much to do, so little time!

Well, I received a new packet in the mail today from Give Kids the World Village. We will have our own personal greeter meet us at Orlando Airport to help us get our luggage and rental car along with a map to the Village. We were instructed to bring an extra bag for all of the gifts our family will receive while staying at the village (on top of any souveniers that we buy). I will attend orientation the first night where I will receive a 3 day park hopper pass for the 4 Disney World Theme Parks, a 2 day pass for both Universal Theme Parks and a 1 day pass to Sea World. We will settle into our fully accessible 2 bedroom 2 bath villa complete with our own driveway, washer/dryer, laundry detergent, tv and dvd player, full kitchen, stocked fridge and a gift basket of snacks. Everything at the village is free to us. We can have pizza delivered to our villa from the kitchen. If we don't have a camera or video camera, they have a lending library so we can borrow one for the week, along with dvd's. They have horseback rides twice a week, a train, merry go round, HUGE playground, miniture golf course, pool, movie theatre, Royal Spa, couple of restaurants, ice cream shop open from 7:30am until 9:30 pm and did I mention the snow filled street with a horse drawn carraige to meet Santa? Charachters from Disney World, Universal Studios and Sea World also visit the village to sign autograhs and take pictures. The whole village looks like it came out of CandyLand and Alice in Wonderland. They have events planned everyday for before we go to the theme parks and when we get back. I'm a little excited now! I know that we receive a going away party to see us off when we leave our house in Phoenix. Pretty sure a limo takes us to the airport too. WOW!!!!!
Thanksgiving, Vacation, Christmas and then start school! Ah! So much going on! I think our family will come back a whole new family!

Botox again

We went to spacticity clinic today. Dr Kwaznica suggested botox again. The last time we tried was 2 years ago and it only lasted 2 weeks. It is meant to last minimum of 2 months. Hope's toe flexors are really tight which makes her toes curl under. These muscles are really deep in the foot. Her heel cords are also really tight. Dr. Shafron will be doing the procedure. He will inject a full dose of botox into the heel cords to, in theory, loosen them so we can stretch them and help them grow. Last time they injected her quads. Dr Kwaznica feels her quads are okay now and it's a movement disorder and her tight heels that make her crouch while walking. Botox will be a one day in the hospital procedure. I'm hoping we can get it done after Disney World and before Christmas. We'll see. The nurse should be calling next week to set it up.
Now that I just bought her Toe Off braces, CRS is now covering them. Figures! Hope has had them less than a month and already has chunks out of them and cracks from slamming on her knees. That's my girl!
All in all we are well. So far we have remained healthy except for fire induced bronchitis after camp. Hope is loving the fact that she can get wet. Very sad that she missed the water slide again though.
Thank you everyone for your continued support and prayers!

She's healed!

Sorry for the long delay, things have been really crazy. We are less than a month away from Disney World! Exciting and nerve racking all at the same time! Kevin, one of the Make A Wish guys will be taking her and Grandpa up in his plane before Disney World. Hopefully this will make out plane trip a little easier! We do have a straight flight there and back. That will be nice!
Hope's wound is FINALLY healed! Four and a half months! She can finally get wet again! Hello bathtub! I am so glad to be done with sponge baths and taking her to get her head washed and braided. Now she can get back into her stander and back into her old routine a little more. She can sweat again too! AMAZING!
We are several months out from a service dog. Everyone has a different story for me. I guess we are definitely still a ways out though. There are a lot of dogs getting ready to graduate from the program, they just aren't old enough yet. They say there are a few that have strong potential for Hope. Fingers crossed!
We went to Shriner's on Friday and her hips look good! Thank God! Now that she can sweat again, hopefully she will get back into hippotherapy, the stander, knee immobilizers and all of the fun hip restriction activities.
We have been at a stand still with all of the other doctors. I do need to get her back in and find out what it would take to test her tissue. I'm dragging my feet a bit. It has been nice not running to the doctor every week.
Hope is on her second growth spurt in 30 days. Ugh! Attitude city! She better stop before Disney World! Her hips are looking good for as fast as she is shooting up. Hopefully it stays that way.
I go see Financial Aide on Thursday. It's really happening, I am going back to school! I have pretty much everything set up for the big transition. It will be a huge adjustment for the house as well as myself and Hope. I'm very thankful it is only 4 hours a day. I start January 4th.
I better get to bed! I promise to not wait a month before I update again!

Back from Camp

We are back from camp! Sorry it has taken so long to update this since camp. Hope and I came home with bronchitis and it has been horrible. Hope had a blast at camp. The camp was not set up for physically disabled kids, but we made it work. Needless to say, I have never been so sore. While we were at camp, Hope made lots of crafts, rode a horse, did a zipline, went to the Prescott Zoo and camp fires. If you ask about camp, you will hear about the zip line. She was able to ride it twice before we booked it to the zoo.

Here are a couple of pictures from her horse back riding adventure.

When we walked up to the zoo we had a peacock escort. He walked right along Hope's wheelchair. The coon came to the front and sat and talked with Hope for a few minutes. We saw a huge black bear, a fox, and lots of cool animals up close. When you ask about the zoo, you will hear about how the bathroom flooded while we were in it!

This is a picture of the marshmallow shooter that she made. She was not happy about sitting still long enough to have her picture taken. Her playing around in the bunk bed too. It was an adventure! Won't do it again, but glad we did it.

Hope started counseling yesterday. We both really liked the lady. Hopefully Miss Hope will finally be able to identify her feelings and talk about everything she has been through. She will go every other week. I'm hoping it will be a good thing for her.

We are still trying to get well. Meanwhile we are very excited about Disney World! I guess we need to get through Halloween and Turkey Day first though!

Thank you everyone for all of your support!

Camp, here we come!!

We go to Camp Runamuk on Friday! Yeah! On Saturday Hope will be doing the zipline and then headed to the Prescott Zoo. not exactly sure what is there but should be fun. Sunday she will do some hippotherapy. Carol, one of our Habilitation workers is going up with us. She will be in charge of Hope for parts of the day so I can have some free time. What's that? I hope to enjoy some much needed time away!

We went to Dr Shafron's today. Her wound was draining A LOT over the weekend. He figures it was probably just a pocket of fluid. It has pretty much stopped now. He burned away some of the extra tissue to help it heal faster. It's getting there. We are 3 months in. I think she missed any chance at water play this year though.

She starts counseling in 2 weeks to help get coping skills for all that she has been through. I am hoping it will be a good thing for her. Since she has been approved for Make A Wish she has gotten some of her drive and ambition back. Not completely there yet though.

She has decided to do ambulatory track this year! Just bought a cool tripod walker for her. It's a little big but she will probably be close to grown into it by the time we start. Soon we will start training for track.

She is mid growth spurt right now and having a hard time walking. She is so tight she sleeps on her belly at night and her heel touch her butt. We met Dr Raben today. He is a mobility specialist and Dr Shafron referred us to him. Dr Shafron is hoping maybe he missed something and Dr Raben will have some tricks up his sleeve to help her walk better. We'll see.

I can't post the family portrait on here since my foster kiddos are in it. This is one of Hope and I though. We are a pirate family for Halloween. The girls start visits with their mom again this week. Not looking forward to it. Hopefully it will go better than anticipated.

Hope all is well with everyone. Thank you for your continued support!

I did it!!!!!!!!!

As of January 4th, I will be a full time college student at PIMA Medical Institute!!! I beat out over 100 other people to be in their first class of 25 students for the new Certified Occupational Therapist Assistant (COTA) program! YEAH!!!!!!!!!

Disney World here we come!!!

Grandma, Grandpa, Hope and I are all going to Disney World in December for 6 days!!!! Wahoo!! I have 2 vacations before the end of the year. Unreal! I haven't been on vacation in FOREVER!
A nearby place that does respite holds a camp called Camp Runamuk. Hope and I are going up with our respite provider in October for 4 days. Hope and I will have a suite style log cabin, we go to breakfast together, then Hope goes off with Carol and I go off and do my thing. We meet for lunch and then break again. Then we meet up for a camp fire every night. One of the nights we will go to Whiskey Row!!! (Obviously without the kids) Hope will get to go horseback riding, zip line, rock climbing wall, sports, arts and crafts, scavenger hunts, etc. I will be off doing yoga, massages, lectures, discussion groups, etc. Can't wait!!! A vacation with my kid and I still get time to myself. Ahh! Sigh of relief!
While we are at Disney World, Scott reassured me that him and Michelle would come play with us too. Can't wait! It will be nice to have Hope see them again since I can't convince them to move back here.
We are settling back into our room. Mya slept in her big girl bed last night. We start potty training in the next couple of days. Hope is excited to teach her and help her with her watch. I bought a watch that looks like a toilet seat and it sings and lights up periodically to remind her to go to the bathroom.
I'm still biting my nails waiting for my letter to arrive from the school. Good things are happening! Thank you everyone for your continued support and prayers!

Make A Wish

The amazing guys were here last night! Such wonderful men. They brought Hope McDonalds dinner, ice cream and m&m's, balloons and a stuffed bear that holds a star and sings If you Wish Upon a Star. She chose to fly to Disney World in an air plane and stay in a hotel. The one guy, Kevin, owns a private airplane. He will be taking Hope and Grandpa on a ride once it cools down.
Paperwork is done. Rick, the other gentleman, will be dropping off all of paperwork today. Her wish needs to go in front of the board. If her wish comes true, we will be going to Disney World between Thanksgiving and Christmas. If her first wish doesn't come true, her back up wish is a tree house (aka. playground with a fort).
After our 2 years of a downward spiral, it just doesn't feel real yet. Lots of good things are happening. Thank you everyone for your prayers!

Doing well

I am sorry it has been so long. Our house has been under contruction for over a month now. I think they will be done this week. It will be nice to get back to our crazy normal house!
Hope is doing really well. The wound is finally healing nicely. The fresh tissue is growing out of the wound now. It looks gross but is doing great. I'm hoping she will be able to get wet before the cold weather sets back in.
We are still waiting for the on-line school to initiate an IEP. I am hoping that she will start within the next two weeks. It has been nice to not have to worry about school while shifting our house to accomodate construction.
I had an interview with PIMA on Friday and will be receiving a letter in the mail in two weeks. I interviewed for the Certified Occupational Therapist Assistant program. It is brand new and they are taking 25 students out of 200.
Hope was approved for Make A Wish Foundation and the Wish guys will be out here Tuesday. They are bringing McDonald's dinner (Hope's choice of course), desert, balloons and a present. I believe she is going for a plane to Dinsey World. We'll see! The one guy has a private plane and will fly us if she chooses somewhere close by. I know she wants a "treehouse" (playground for the back yard) also. I have been pushing the vacation a little and now feel guilty. I really do think she would love Disney World though. It is hard to put the word vacation into a child's head that has never really been on a vacation. We'll see what happens.
I will defenitely start posting again on a regular basis. My computer will no longer be covered in drywall and tile dust.
I hope everyone is well.
Thank you for the continued prayers and support! We have been through some very trying times. I am hoping we are close to being out of them. We couldn't have made it through without all of your love and support!

Dermatology visit

Well, the test was positive. It's good that she is not allergic to the pump but bad because we still don't have a definite answer on why it won't stay in. The Dr said she isn't allergic on the surface, doesn't mean she isn't allergic inside. Ugh!
They were able to give us this cool sock thing to go around her so hopefully I can stop using tape. She is bleeding and really irritated where all of the tape has been. They gave me some steroid cream to rub on her too. We'll see.
The bad news, she is forming a pocket that is growing where the pump was. My best guess, it is filling with fluid. I will call Dr Shafron's office in the morning. I fear we may be headed back in for another outpatient surgery this week. Hopefully not.
Thanks again for all of the prayers and nice thoughts. Need more strength prayers. I'm really starting to second guess my decisions.

We're home!!!

Stitches are out! The nurse tracked down a friend of hers and they were able to place allergy pads on her back. She has a 12x12 spot covered in gauze and tape. She is not allowed to sweat or rub her back. Uh huh. It's only 110 outside, no problem!! We go in Monday to have the gauze removed, Wednesday to have everything re checked and possibly again on Friday. When it is over we will know if she is allergic to something in the pump. Her wound is open some but I shouldn't have to pack it unless it opens more. I have to do wet to dry dressings twice a day for a while. Fun! I soak gauze in sterile solution, roll it and shove it in the wound. When it dries I pull it out and all of the gunk it dried to the gauze and pulls out. Sounds fun right! I think her and I will need some heavy sedation over the coming weeks! I will post again if anything goes wrong or else Monday after the doctors appointment. The appointment is at 5pm so it will be late. Thank you again for the continued support and prayers!

Outpatient Surgery Tomorrow

Sorry for the delay. The doctor's office called yesterday to schedule for tomorrow. She is having outpatient surgery to have her tummy stitches removed and wound scraped out. I changed her bandage tonight and she popped a stitch right through the skin and another one on the way. Her incision is breaking back open. Glad they are coming out tomorrow and we will be seeing the doc. She is excited because she gets to sleep through her stitch removal. Weird child, but glad she is. Surgery is at 1:30. I'll post tomorrow night or Saturday morning depending on how late we are there.

Dr Appointment

We went back to see doctor Shafron today. He cried when she gave him the Dr Shafron puppy. Such a great man! He personally came out into the waiting room to get us today.
Her back stitches have been removed. They are making an appointment for next week, probably Thursday, to have her stomach stitches taken out. We should just be there for the day. She will be in a procedure room in the hospital and he will open the wound and scrape it out. It has nasty build up all over it and is still draining. She will have an open wound for a while.
Her Make A Wish coloring book arrived today. can't wait to see what she comes up with. So far, ride in an airplane, ride in a boat and stay in a hotel room. I guess we just need the where.
The Share the Well Lending Closet has taken off. I have received lots of donation and have a nearly full storage unit. I still need monthly contributers to help pay the bills before I go broke. I have already helped a few families though.
Thank you everyone for your continued prayer and warm thoughts!
Happy Birthday Great Grandma!!

Birthday party and amazing news!!!

We started off the day with Ice Age 3 in 3D! Check us out in our glasses!






Then we headed off to Build A Bear. Bad mom forgot to get pictures while they were being made. I blame it on the heat. This is a picture of the girls after we got home. Of course Hope had to have the Hannah Montana Bear. Her friend Abbey chose a cute horse. The animals received matching Rock shirts and pink microphones. We also ended up making Dr. Shafron a cute puppy and I am personalizing the scrubs!!


After we got home Hope opened her gifts. Her friends Rachel, Paul and their son Cael got her cute clothes and a Build A Bear horse that makes horse noises. She was a little excited.

Her singing card that I am sure she will drive me crazy with. She also received a horse game that she won't stop playing, McDonalds money (always a huge hit!) go go pets (little battery powered hamsters that drive a car and run in a wheel, etc.). Those pictures didn't turn out so well.

Aunt Helen and Uncle Doug got her really cool m&m's with her picture on them, name and other cute sayings. She received so many cute gifts today. More little pet shop toys to play with (really great for the hospital!), Tink shirt, stickers and lots of other stuff. She had a good day.

My dad may not like this, but this is the boys putting together go go pet land!! They were getting lots of help!




While we were at Build A Bear I received an unknown phone call. I came home and returned the call. Hope was approved for Make A Wish!! Can't get a better birthday than that!! They are sending out a welcome packet explaining the process and a coloring/activity book for Hope to work on and help her figure out her wish. It still seems like a dream! I keep asking about Disney World. Mommy needs a vacation! She wants a playground. We'll see what pans out!!

Stitches out Tuesday. I'll post again then.

Thank you everyone for all of the wonderful birthday wishes, warm thoughts and prayers!

Doctor Visit

We went for a check up today and she looks great!!! No leaking and no bump! Stitches come out next Tuesday and we have some Valium to take before hand. That should make it much nicer! The doctor also learned about an allergy kit that Medtronic (the makers of the pump) has. It is on its way and the doctor is making an appointment for us with a dermatology clinic where he will personally walk the kit down to them. Amazing man! He is also referring us to a local orthopedic doctor. I haven't liked the ones at clinic, but if he is personally talking to a doctor about her, it might make things a little better for us. The down side, we lose our amazing people that make all her braces.
She is doing well and beyond excited for her birthday this weekend. We are headed to Build A Bear and Ice Age 2 with my friend and her daughter. I think we are finding a bear with scrubs and writing Dr. Shafron's name on it for a "Thank you for taking such great care of me" gift.
I think that is all for now. Thank you everyone again for all of the warm thoughts and prayers!

Home, again

We were able to come home yesterday. It's nice to sleep in my own bed again!! Hope is doing well. No leaking or fluid build up. She is sitting up for an hour in the morning and an hour at night to play her computer. I have her on a slight incline to eat, other than that, she is flat. We go back to the dr Tuesday. Before we left, the neurosurgeon gave me his personal cell phone number since he won't be on call this weekend. Amazing guy! Can't say that enough. I will update the blog again Tuesday unless we have another eventful weekend! Thank you everyone for your support and prayers!

Status Quo

I have been waiting for a change before I updated this, but things are the same. That's a good thing. No more leaking, still flat with her head below foot level. The dr should be in later and should start raising her head. Can't wait!! New rule - No singing cards while in the hospital. Dee Da Dee Da Doh Doh. That is all I have heard!!! I will post later if anything changes. Thank you for the phone calls, emails, warm wishes and prayers!

Admitted last night

Well, we are in the PICU again. She started leaking last night and here we are. She has been stuck on her side and the head of her bed is lower than her feet. Our doctor came in this morning and pulled off the old bandage and put on some derma-bond (super glue), a new bandage and gave her some medicine that will slow down spinal fluid production for a couple of days. He came back in to check on her once since and she is not leaking. I'm sure he will be back in later. If there is no more leaking I am hoping to go home tomorrow. Too early to tell though. I'll keep this up to date. I have my computer now.

Home for now

We came home yesterday directly from the PICU. Sorry for the delay but I basically passed out last night and have been cleaning all day today. Five days away equals a very dirty house!
On the ride home she leaked spinal fluid about the size of 2 quarters out her spine. She is flat again, except for the bathroom. We go back to the doctor next week and he may or may not take the stitched out. It will depend on what they look like. She came home on antibiotics and oral Baclofen. I will be weaning her off the oral Baclofen over the next 2 months. I have a very rough road ahead of me. When she is on oral Baclofen and coming off of it, she has major behavior issues. Some of you know that her calves have been in atrophy, meaning, her calves are diminished to bone and spacticity. It has basically eaten away her muscle. With the pump, it could have been recovered. I am not sure what will happen now. I will also need to transfer her from Shriner's to a local Orthopedic doctor. Her hips get worse as time goes on. And again, without the pump, they will continue to get worse. I don't know what the future holds for us, but I am sure there will be more bumps in the road.
The positive, we are home! Thank you everyone for the prayers, cards, and warm thoughts! The support behind us has been great. Thank you!

Night Update

Hope is doing well. She hasn't had any pain meds or Valium since 5:30am and is doing awesome!! That means the Baclofen is built up in her system and controlling her spasms. She had a gush out her tummy when I put her up to 25 degrees. She's back down to 10 degrees now. Our doc comes back in the morning and he can decide what he wants to do with her then. In a way it is good that it is coming out so it isn't building a toxic waste dump inside her and infecting her whole body. On the other hand, we probably won't be going home until it is done leaking. I'm not sure if opening it and packing it would be a solution. I guess we'll find out tomorrow. The Infectious Disease doc will be in tomorrow with a plan of attack too. This IV isn't looking good. She may be getting a pic line tomorrow. If she does, she can go home on it with IV antibiotics if needed. Will depend on insurance. If insurance won't cover it we could be stuck here for 10 days. =- ( The Valium is very harsh on the veins and IV so I am glad she isn't on that anymore. The antibiotics are pretty harsh though too. Still on 3 antibiotics through the IV. There doesn't appear to be any more leaking from the spine so that is wonderful! Her spirits are good. Hasn't really complained about being bored either. Thank you to all of our visitors, friends, and family! We couldn't make it through all of this without you!

Regression

The time is now 1:19am. Three attempts and an hour later and we have a new IV. She has a blood draw at 5am. Hopefully this new IV will stay working until then. She is receiving 5 different medicines through her IV and 4 of them are very rough medicines. With such small veins and massive spactisity, IV's are hard to get and keep. During morning rounds the nurses will be asking about a pic line and the IV team will be called. She is a very good candidate for a pic line. She can come home on that as well. The new IV is mid arm so it doesn't disturb her game playing at all. Priorities!!
Her back is leaking spinal fluid so she is back down to a 10 degree angle. If it leaks more, it will be reinforced and placed flat until the doctor decides if more aggressive action is needed. No headaches but she seldom complains of them. The muscle spasms are the only thing that really puts her in tears, well that and the 5 inch incision on the tummy .
Due to recent activity I am not sure if she will go to the floor tomorrow. I should know a lot more after morning rounds and after the infection dr comes in.
Now to coax her to sleep so I can get some sleep. Medicines run all night long and some have to be taken orally. Makes for a very long day and night.
Thank you everyone for the love, support and prayers!!

Slow recovery

We are still in the PICU and there hasn't been any talk of moving us yet. They have had a hard time getting her pain under control since her morphine dose is so small. She has been on Valium to control the back/shoulder spasms. The infectious doc was just here and no bacteria has grown yet. They tested her spinal fluid in the OR and there are white blood cells in her spinal fluid. She's allergic to the catch all medicine they want to put her on. Without bacteria growth, it's hard to know what you are fighting. She's on an antibiotic now but it doesn't get into the spinal fluid well. Hopefully something will grow so they know what they are fighting. The doctor said at least another day here.
She definitely seems to be in better spirits today. She's yelling at her body already and was in tears when I told her that her pump was taken out. She tells me several times a day that she wants her pump back in. It makes such a difference in her life and everything that she does.
She should start sitting up some today. We are still waiting on the neurosurgeon to come in. Our doctor isn't here today but his partner is. Our doctor will call to check on Hope too, he always does.
So far today is going much better than yesterday. I think the oral Baclofen is finally kicking in and her morphine dose was increased. Between that and the Valium, it is keeping her pretty calm. She is still completely awake. Blows my mind. I would be sleeping or watching unicorns flying around the room!
If I have to be in the hospital, I love it when it's a holiday. The halls and waiting rooms are quiet and there's no lines in the cafeteria.
Thank you everyone for your support and prayers!

Emergency Surgery

I checked Hopes pump this morning before leaving the house and she was leaking a generous amount. Called the doctor and was told to come in, no food or drink. He removed the steri strips in the office and it was a very nasty sight. The incision is normally 1/4" thick, the pump stretched it about an inch and a half apart. There was a very thin layer of skin holding the pump in. It was draining from about 4 separate spots along the incision and was very discolored. We were straight admitted to the PICU at Phoenix Children's (of course). Surgery happened at 5:30 and she is playing a video game now. The pump looked "very bad" and was not salvagible. The white cell count was so high they couldn't tell what bacteria was in the culture. The entire pump and catheter was removed. Which means her 5" tummy scar and back scar were reopened. Not sure how big the back is. It runs about 6" long but not all of that would be opened. Of course, she has the first infected pump the doctor has ever seen and he has placed over 100 of them. That's my kid! She is flat for 48 hours in the hospital and then slowly inclined to help prevent a CSF (spinal Fluid) leak. Hopefully we will be out of here on Sunday. Infectious Control will be handling her antibiotics and duration. There is talk of 2 weeks of iv antibiotics. The biggest concern with having an infected pump, it goes directly into the spinal fluid which goes directly to the brain. This was caught early enough so she should be in the clear.
We have a long road ahead of us but so far so good. She is breathing well and her heart rate is good so it shouldn't be a repeat of last time. I will update this everyday if not twice a day while we are in here. I'm exhausted so hopefully this made sense. My cell reception is hit and miss but I do receive my emails in here and you can call the main line to get to our room, where ever we are. 602-546-1000.
Thank you everyone for your support, love and prayers!

Calm Waters

The waters are pretty calm, well, as far as Hope goes! Her leaking has stopped. If she still hasn't leaked by Monday/Tuesday, the waterslide is going up! She is doing really well and the pump is not causing a lot of pain. She is walking and crawling everywhere.
My lending closet is taking off! I had an ad in the Raising Special Kids newsletter which is huge! Mesa Disabled Sports should be placing an ad in their next newsletter, Phoenix Children's Hospital has already called me for a request, CRS (another children's clinic/hospital) has our flyer's, and many offices around the valley have requested hard copies to post. Our orthopedic company, our foster license company, and the Division of Developmental Disabilities has past an email with our flyer through their contact list as well. The wild fire is starting to spread! I just pray that we receive some monthly donors soon so I don't go broke!
This is my last week volunteering at Foundation for Blind until school starts again. I'm so glad! There aren't enough hours in the day!
Next week I am attempting to transition my foster kiddo into a toddler bed and then on to potty training. Ugh! I think she will learn fast though. She had a hearing test this past week and she does have hearing loss in her right ear. Not sue how much yet. She goes back in two months. They are hesitant to commit to anything at this young age. We also figured out she has spastic feet. She is now using Hope's electrical stimulation every other day and with some aggressive therapy, it shouldn't be noticeable later in life. With all of this, hopefully I will be free and clear to adopt her in the future. Her parents appear to be pursuing her sister and not her. I don't understand, but that is fine by me.
That's all I can think of for now. Thank you everyone for your love and support!

Another trip to ER

Apparently she's making it a Monday habit. She was draining out of the incision last night. This time a yellow color, not blood. It's either spinal fluid or just wound healing gunk. After IV fluids and blood testing, no infection!! Yeah!! It stopped draining on it's own while we were in the ER. If we were any other family we would probably still be there under observation. She can't get wet this week or ride her quad yet. She's not happy about that but very happy that the pump didn't have to come out. Here's hoping we stay out of the hospital for a while!!

Family update!

Hope is doing great! You wouldn't know she just had surgery. She's one tough cookie! Her spirits are great and we are hopeful that this will be her last surgery for 7 years. The pump battery dies in about 7 years and then the pump will have to be replaced.
Many of you know that I have been a busy lady lately! The Share the Well Lending Closet has finally launched! We have equipment ready to loan, a storage unit, some storage equipment and the bare essentials to get going. The Lending Closet was created to provide families raising developmentally disabled children with needed equipment, resources, and support. Share The Well collects donated walkers, crutches, wheelchairs, books, and other equipment from a support network consisting of therapy vendors, corporations, therapists, and individuals. These resources are made available to families raising children with special needs at no charge.
I am also volunteering at the Foundation for Blind Children Preschool program Tuesday through Friday. It's only for 3 weeks for the summer program and then when I have time during the regular school year. It has been a great experience for me thus far. I have been working in the low functioning classroom with one of our respite providers that is the teacher. It's amazing. Three year old kids are being taught how to use switches and have walking therapy. Amazing place!
I hope everyone is doing well. Thank you for your continued prayers and support!

Staples are out!!

We saw the doctor today and the staples are out! Wahoo! She was such a trooper and so brave. She only screamed a little. They can normally hear her across the street! It took some maneuvering to hold her down but she did really great overall. She can get wet in a week and she is so excited! Must just be when they open the back that she has to go 8 weeks out of water. The Dr likes the incision and thinks all will be well. Her pump was turned up some too. Now we go back to the doctor every two weeks until the pump is adjusted to her body weight and type. They can only do a 20% increase at a time or else she will have an overdose. For now, all looks well! Hoping it stays that way! Thank you again everyone for your support and prayers!

Another night in the hospital

Hope and I were sitting on the couch watching a movie and Hope was practically on top of me because there was a moth in our room. I looked over and her pump looked huge. I took off the binder to find a blood soaked bandage. I wrapped her back up and called my mom to sit with her while I paged the doctor. The mean moth was going to eat her up if I left her alone. We flew into the hospital (she was happy because we weren't in the room with the moth) and our neurosurgeon met us in the ER waiting room. Such a wonderful man. While we were checking in he had the nurses get everything ready to tap and drain her pump area. He took the bandage off to get a good look at it and Hope was crying her eyes out asking to have a bandage put back on. The doctor wasn't even touching it and she was in distress. As soon as he put a bandage back on, she was totally calm. Such a stink pot! We ended up not having to have it drained. He admitted us under a 23 hour watch to see what was going on. She was flat all night and raised up to 30 degrees really early this morning since there was no new drainage. Then a few hours later was able to get out of bed and sit up all the way. She pushed herself through the length of the hospital in her wheelchair and did a craft in the child life toy room. We went back to the room and no new drainage. We are now home! The doctor figures it was a scab that broke open. We are getting the staples out on Thursday now instead of Wednesday to give it an extra day. Her spirits are good, as always. Thanks everyone for the prayers and support! Hopefully we won't have any more scares!

Doing good

Sorry for the delay, things have been crazy! My friend is back in the hospital, a friend/respite provider's mom dies, we are preparing for construction on our house on Wednesday, Ugh! It never ends. Hope, foster child, Tinkerbell and I will be residing in a hotel room for the next two nights. We aren't venturing far but packing for two special needs kids is like packing for a cross country tour.
Hope is doing really well. She is crawling around some now, off pain medicine (some Tylenol here and there) and pushing mommy's buttons trying to do everything she's not suppose to. That's how you know she is back to her usual self!
The pump is in but the dose is extremely low. I'm wondering how much of it is psychological for her. She drew a picture for grandpa after he was done mowing the lawn, it was AMAZING! She drew a blue sky, rainbow, sun, grass, grandpa in red boots hold a lawn mower that was drawn in 3 accurate pieces. It was incredible!
If anyone is up for Sorry, Checkers or Go Fish, PLEASE COME OVER! I am going crazy playing board and card games!!!
Thank you again everyone for your support!

Life at home

Well, we had a rough morning but seem to be doing okay now. She started off the morning vomiting. I gave her pretzels before pain meds but I heard the dog chomping away in the corner. She claimed it was a small piece, I think it was a pinnochio moment. I made her lay flat all morning with ice on the pump and she was not happy with me. I hope she didn't pop her inner incision.
Going to the bathroom is still rough. We are on a new plan that works easier for her, just kills my back a little more. Oh well! No fevers or signs of infection. Just grouchiness from laying around more. It's been a year of laying around so I can't blame her.
Hope was catching butterflies in the living room this afternoon. I asked if they were imaginary or if she was seeing butterflies. Thank God they were imaginary! Gotta love Codeine!

We are home!!

It has been a rough couple of days and I was happy to come home until I saw everything I need to do here. It will be very nice to sleep in a bed though. Last night I was in a chair and we shared a tiny room with a 6 month old that just had hip surgery. Imagine how that was!
Hope is refusing to stand so it is making bathroom trips unbearable. Hopefully I didn't make a mistake bringing her home today. She is on Tylenol with Codeine right now. It's keeping her spirits up and her pain down. She is on low activity for the next 8 weeks and only allowed sponge baths again. Happy Birthday to Hope for the second year in a row. Last year she had an open wound on her B-day and had the pump taken out the following week. No water this summer either.
We see the Dr in 2 weeks for staple removal and then at 8 weeks for post op check up. The pump looks good. So far so good. The Dr wants her to wear dresses and no underwear so there is no chance of rubbing the pump. Ha!! I asked him if he met my daughter! She will be in elastic pants/shorts for a long while though. I have to figure out how to remove buttons so I can put velcro on them.
If anyone is bored, please come play! Please, please come play!
Thank you for your love and prayers!

Morning Update

Well, her RR rate is back up in the 20's so she is doing good with breathing. It was classified as a Morphine Sensitivity. Doesn't really add up since she has been on Morphine so much before. Not going to chance it though.
She has been on nausea medicine non-stop but just ordered a baked potatoe. She's eating fish crackers now. With all of the tummy contractions from nausea, she is flat for another day. Doctor doesn't want any chance of the pump popping out the inside incision. The RN stopped by already.
She is starting to drink some so hopefully she can be unplugged from the iv by the end of the day. That's good since the line is close to blowing. We should be floor status soon and probably home tomorrow.
Thank you again for all of the prayers!

Long day

Hope was scheduled for surgery at 11:30 today. She finally went in around 1pm. An X-Ray was done first to make sure the pump was still in place. Surgery was smooth and successful. The catheter was flowing nicely and her back did not need to be opened. She will be happy to be sitting up tomorrow!
Almost an hour ago she was given a drug to wake her up. She has been on a large amount of Oxygen and will remain on it all night long. She dropped her respitory rates (RR) really low and was close to being put on a ventilator. Her heart rate and RR are stable now. Still dropping the RR some but not constant. No longer in the coma appearance. We aren't completely out of the woods but it is looking good. She may still need a CT as well. She had been off Morphine for 9 hours but was given a Morphine reversal. It doesn't make sense but it worked. The drug is designed to last 15 minutes and it did. She has been on Morphine a lot in her life and has been on Morphine and Baclofen at the same time before. It just doesn't add up. Since all of this happened she is on an extremely low dose of Baclofen as well. The doctor reduced the rate a few hours ago.
I hope this makess sense. I am exhausted!! I will try to post again in the morning. Thank you everyone for the prayers, McDonald's, gifts, visits and warm thoughts!

Uneventful update

Nothing much has happened with Hope lately. Preparing for surgery next week. We did go to the spasticity clinic. They agreed with the pump and talked about the possibility of a shunt. That will be left up to Dr Shafron though, the nuerosurgeon.
I aged another year, not so gracefully. I had a little too much fun doing it! Michelle came in from Florida and I had a 4 day action packed birthday palooza.
We go in Monday June 1st and I will update daily while in the hospital. Her surgery isn't until 11:30 so I won't update until late afternoon or early evening. Thank you for the prayers and support!

Update

Hope was casted for new braces yesterday and received approval today from Shriners to pay for them. I will call after surgery to set up an appointment to get them. We were in and out of Shriner's in half an hour. New record! We have spent 5 hours there before, average 2 hour stay though. They want to see her back in 6 months. It's normally a year. I think they are just curious to see her after the pump. They weren't too concerned about her hips. She is still at risk of having hip surgery but hopefully the pump will take most of that away.
Hope's surgery has been moved to June 1st, I think. They didn't have any open OR time on the 27th and I haven't received confirmation on the 1st yet.
Our house is officially off lockdown so therapy and the teacher will start back up this upcoming week. It was quiet this week. Really weird, kinda nice, but weird.
Our wonderful PT and friend is starting up a cheer program for special needs kids. If all goes well with the pump Hope will be starting that in July. If not, there's always next year!
Our wonderful OT and friend is starting up a special needs ministry at her church. I am happy to say I can start going to church the end of this month and not have to worry about my kiddos!
I have my last foster care class tomorrow! Yeah!!! Hopefully I will be licensed June/July.
Lots going on this month. Mainly parties (prom party, graduation party, getting more gray hair party, etc.). I am very excited, my sister in law, well, I consider her my sister in law, is coming into town for a few days. Her and her friend/my new friend Brandi are taking me out for a night! I can't wait!
All in all we are doing great. Just trying to keep up with life!
Thank you everyone for the continued support and prayers!

Surgery

Surgery is scheduled for Wed. May 27th!

Nuerosurgeon Visit

Hope no longer has restrictions! Her bandages and binder come off today! I will be calling to schedule her surgery today. Since I have a wedding, I'm being kidnapped for a day, and some other events this month, I am hoping to schedule for June 1st. We will hopefully only have a 2 day stay and she won't have to lay flat. If he opens up her stomach and the tube isn't draining correctly, he will have to open up her back again which will mean a 4 day stay. That shouldn't happen though.
If the pump is put in and fluid starts to build she will go back in for surgery immediately. He will open up a bigger spot on her back, expose the bone, drill off a little bit of her vertebrae and attach the catheter to the bone. Hopefully with all of these measures, he won't have to drill into her head or place a shunt.
She is still having problems with bumps on her legs. We aren't able to provide all of the therapy techniques that we would like because of them. She was diagnosed with Mellescum about 2 years ago. I'm wondering if that is what it really is. They go away for a couple of months and then come back for a couple of months. They are driving me and her crazy. Right now she has a big one on her knee so she can't even crawl. I have no clue what else to do.
We go see the orthotist Thursday for braces and Friday is Shriners Clinic. I will post again on Friday and I may have a positive date for surgery by then too.
Best wishes to everyone!!

School update

Not too much to report this week. Next week will be the big one!
My schooling is now put off until January. Stinks, but they are changing campuses. On the plus side, it will be even closer! About 5 miles away! YEAH! Still not sure when my interview will be.
Hope has just been approved for homebound schooling over the summer. YEAH! Hopefully we can get her caught up some. In the fall I will be enrolling her into an online public school. I think it will be really great for her. If all goes well with the pump she will be in a lot of extra activities (wheelchair basketball, bowling, etc.). School life is so hard for her. I would pick her up from school 5 days a week and 4 of those days we would go straight to therapy, grab some fast food, come home to a Hab worker or Respite provider to help her with homework or whatever and then off to bed to do it all over again the next day. Then there's doctor appointments in the middle. I knew my daughter in the car, no where else. We practically lived in the car. With the online school, they send therapists to the home, we can skip music, PE (I think Physical therapy covers that aspect!), playground, etc. and concentrate on the core material. Plus the schedule is flexible and a lap top can go with us to the hospital if need be.
Within the next two weeks we have a follow up with the neurosurgeon, appointment to get casted for new orthotics, Shriners clinic (to receive payment for the new orthotics) and Spasticity Clinic. Not to mention tests for my foster child.
I hope everyone has a great weekend!

Service Dog Update

I spoke with Power Paws today and our planned service dog is sick again. He had problems and was on medicine to clear it up. The vet assured them it would not come back. It did. He's on another 2 months of medicine and then they will keep him for another couple months to make sure it doesn't come back. He still hasn't been neutered yet either. It will be a while. She is keeping an eye out for any other possible dogs, but this one truely seems to be a perfect fit.
I'll be posting an update hopefully early next week of my new adventures and then I should have info on Hope's next surgery at the end of the week. We have a LOT going on in May. I have my last class for foster care, my foster girl is getting testing done, Hope has multiple doctors appointments and I get older. =- (
I hope everyone is doing well. Thank you always for your support!

Jack Hannah

Hope and I went to a Jack Hannah the animal man show today. It was a blast! They had brought in a bunch of animals from the World Wildlife Zoo. Here are some of them:
This was the bald eagle. He was shot in his wing as a babe.


Pumba, they kneel to eat. Notice his perfect posture. I have another icture of him getting lectured too.

On a leash, really? Ow!

Tucan Sam and a fascinating bird.

My brothers pet.

The silent owl. This was amazing! You can not hear them fly. Their wings flap silently. The owl was suppose to land on the lady wearing the helmet. And the back of Hopes head!

Rocky and Bullwinkle when they grow up! Jack was a little afraid of scorpions. He basically ran away when this guy came out.

Lemar waving hi! Jack himself. We were in the front row and Jack was standing right in front of us the whole time. The down side, all of the animals were on the other side of the stage. They had a really long snake too. Some of my pictures were lost in transit to the blog.

Doctor first week of May and Service dog, well, still waiting on the call. Should be next week though. EXCITING!!

Easter

There are no words! Thank you Uncle Doug and Aunt Helen for the entertainment!!

Disney on Ice ~ Disneyland Adventure

We enjoyed our night out. It was just Evil Hope and I. The incredibles, desguised as normal people took a trip to Disneyland.

The evil dude came and took Mickey & Minnie. Oh No!

Thank goodness the incredible were able to have suits made since they were in Disneyland!! Isn't Mr. incredible hot!!

These are blurry but it was so cool. They visited the haunted mansion while looking for Mickey, Minnie and the little evil dude. They turned off all the lights and put on black lights.

The incredibles saved the day! Mickey and Minnie are fine and they all lived happily ever after! Well, except the evil dude!

Stitches and Staples are out!

Hopes stitches and staples were moved this afternoon. People in the parking lot could've probably heard the screaming, and that was with pain meds. There was no leaking when they were removed! The bump is also gone and she hasn't complained of a headache in 2 days! Here's hoping! We go back and see the doctor in 6 weeks. Until then, we wait and pray that history doesn't repeat itself! I will post pictures as soon as we receive the dog. I Promise! Once some tricks have been formed I can post videos too.

Service Dog Update!!!

I just received confirmation that we will be getting a service dog at the end of April! Yeah!! HE will be a golden retriever. He should be smaller than JoJo was and has been working with an Occupational Therapist. He sounds like a perfect match!! Pictures to come!
I'll update after stitch and staple removal on Wed. as well.

Post Op Update

I'm not posting any more pictures since she is still spread out on the air mattress playing PS2! On Monday she started crawling, but only to and from the bathroom. She is also going on a wheelchair ride everyday on the concrete. She's still not able to push though.
Her doctor is on standby over the weekend, thankfully! Hope has had a bump on her spine that has been coming and going. No fevers or anything! It became pretty big two nights ago and I called the nurse. I spoke with the doctor yesterday and he suggested extra pressure on the spine to help the fluid absorb into the body. So far so good. She has started complaining of headaches though. I'm not sure whether to take them seriously or not. Hope has such a high pain tolerance with this stuff and I don't want to over react. (If she gets a small pin hole size drop of blood coming from her finger the world is over! Surgery or something serious, no sweat!) This is how things started before. Here's hoping history doesn't repeat itself.
We have an appointment with the nurse Wednesday to get the staples removed and stitches taken out. The nurse we see, Mary, was one of her PICU nurses at birth. What a small world! I wanted to keep everyone updated. Thank you all for your support and prayers!

We are home! Finally!!

We were scheduled to come home last night and then Hope's stomach incision started to swell. Then around 2am she had a knot in her hip the size of a baseball. Her spasticity at work. She was in more pain from that than her surgery. Thank you Morphine! We came home this morning and all is well now. She is on an air mattress in my living room. She can get up to go to the bathroom and eat. No walking or crawling for 2 weeks. Grandma bought a PS2 and that is keeping her busy! Don't know what I would do without it!

We are recooping now and I am hoping to get some sleep! Here's a video of Hope on drugs with Cinnamin Twists!

No new updates on school or service dog. I'm not pushing the service dog any! I will be calling the school next week when my brain is functional again!

Thank you again everyone! I will keep you posted on whether this surgery works or not!