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!