Update on Stacey

Wow I looked at the sign-on page and it said I hadn't blogged since April 1st. That's a little sad that I haven't been on here. I have been supper busy though. So here we go.

Stacey and I were out in the garden pulling weeds one Sunday afternoon and then she woke up Monday morning sick as a dog. So started her on medication and then 2 1/2 weeks later still not better and was developing fevers and her face was sore. Usually her entire body aches but her face being sore was a new one for me. So That day we had an appointment with another new doctor an immunologist and she didn't know what was wrong so she had the ENT come in and look at Stacey and the verdict is that her salivary glands are infected. I bout fell off my seat how does that happen? And WHY? some day's it's a little irritating that I have more questions than answers. So she got another antibiotic. UGH. And then the immunologist who specializes in allergies came back in and tested Stacey for some environmental things. Eucalyptus, Ragweed, Palm, Sage, Mulberry, Mold, Dust, Dogs and Horses. And she's allergic to all but dogs, horses and mold. I chuckled a little at myself thinking that Stacey is allergic to just about darn everything that grows indigenous to our area, especially eucalyptus and palm. They didn't test for food allergies because we were more concerned about environmental ones right now. And then we discussed the possibility that Stacey might have an immunodeficiency disease. So she was only going to run a few blood tests and I told her well if your going to run 1 you might as well run as many as you can so that we can rule things out ASAP. They are testing her for Cystic Fibrosis, and a condition where the body is unable to fight off certain strands of bacteria and viruses, and checking her blood at a very in-depth level. We will have some of the results the next day but most of them get sent to the MAYO Clinic and won't be back for weeks. I'm really interested to see what the tests show if she does have something wrong it sure would explain alot. She is also getting a CT scan done of her head to take a look at all of her sinus cavities and look at her tonsils and adenoids to see if there is anything they can do that way to help her from getting sick all the time. She is also getting a sleep study done to see if there is any way to help her while she is sleeping...for example to look at her breathing to see if she might need oxygen or a C-pap machine or an apnea monitor. Or positioned a certain way to help her breathe easier. She has been out of school for almost 2 weeks and she will be going back tomorrow hopefully for a full day. Tuesday she has doctors appointments and same with Wednesday.

We have a possible solution for getting her current and future wheelchairs into our van. We should qualify for a grant to get a lift that will only pick up the wheelchair itself not with her in it and put it in the van. Which that alone would be an answer to prayer and a blessing to us. We should know in a couple of weeks weather we will be able to get the grant. If not I haven't given up hope I still have other avenues that I can explore if need be :-)

Sunny is doing great and bonds more and more with Stacey. He has been a huge help in comforting her when we've been at doctors offices. When she had her allergy testing done he was snuggling her and she was feeding him treats and then he would kiss her hand. It was precious and priceless. We really love having Sunny in our house with us. he too is a blessing.

I think that is all for now. If you have questions about anything please ask me. I would rather answer questions than have something assumed. Thank you for keeping up with us and I will let you know ASAP when I hear something from the blood tests.

Love and God Bless,

Cherice, Stacey and Sunny :-)

New Pictures

Ramp Van

Hello my name is Cherice and I have a 6yr old daughter named Stacey. She is the light of my life, and very special to me. She has Quadriplegic Cerebral Palsy that originated from her not being treated for her jaundice when she was just a few days old. I didn't find this out until last fall. Stacey has had many, many medical complications arising from her having Cerebral Palsy and a genetic blood disorder called Factor 5 Liden that I have too and will pass on to all future children. She is growing up so big and beautiful and has an even more beautiful mind. I have done my absolute best at advocating for her. I used to be a nurse and work a 40+ hour work week and have a nurse to come in and take care of Stacey and that all changed on Sept 4th 2006 when I rushed Stacey to the hospital. She was very ill and I wasn't sure with what but I knew she was ill and she ended up having an infectious disease in her intestines and pancreatitis which is very rare in children. While we were in the hospital for those two complications we were awaiting a Gastrointestinal feeding tube placement and a fundoplancation which is a procedure that they do on children with severe Gastro Eshpogeal Reflux Disease (GERD) and when that occurred Stacey ended up with a bowel obstruction that snowballed into many other medical problems. She ended up needing a surgery where they opened her up all the way down and did "exploratory" surgery to find what went wrong and the surgeon had sewn her large bowel to the back of her stomach during the process of the surgeon doing the fundoplancation. When she got out of the surgery her vital signs were not stable at all and she ended up retaining alot of water and had to be rushed to the ICU and was put in a drug induced coma. She was in a coma and in the ICU for a week. The total time in the hospital was 2 months and since then I haven't been able to work because she requires even more care than before and physically she isn't the same child she used to be or could have been and now is subjected to a life in a wheelchair. I am ok with her being in a wheelchair I just want to make sure that she is getting all the services she needs and is doing everything she can to her full potential. I also don't want to her miss out on something that could benefit her. So I bravely asked her therapists and doctors that she be considered to receive a power wheelchair and they thought it was a great idea. So that leaves us here, where we are today. She is now being fitted for a power wheelchair and will be getting hers within a couple months. We are an active bunch. I am a co-leader of a girl scout troop and Stacey and I are disability/inclusion advocates for girl scouts. Stacey also has a new service dog named Sunny, who helps her tremendously. We have a minivan. But no wheelchair lift or ramp. I went to price used ramp van's and they start at $40,000.00 Being a single mom with limited income. I certainly cannot afford a ramp van for Stacey. So I am asking for your help in finding funding sources to help with this gargantuan cost. I look forward to talking with you in the future. I have enclosed a couple photos of Stacey and Sunny.

Thank You,
Cherice, Stacey and Sunny Lowry