Summer

Hello-
We are all good. :-) no one has been sick Thank God. We have just been hanging out and having a great summer. We really haven't done much, been stayin home watchin movies and working on some school work. Stacey got her new stander which is a contraption that straps her to a platform vertically so that she can be upright and play on the tray that is attached. She enjoys being in there and playing in it. Not much else has been goin on. We have been lookin in to some new communication devices for Stacey but will not be making any decissions for a few months. We need to wait for another agency to evaluate her. :-) Life is good and uneventfull and for now I like it this way...of course when school starts up again so does girl scouts and we will be hitting the ground running with that :-) Have a great day and remember to give someone a great big hug.

Love and God Bless,
Cherice, Stacey and Sunny the best service dog ever!!

New Diagnosis

Well we finally have the results of Stacey's long awaited chromosome test back. The doctor called Monday and I just had to clairify a few things before I posted it on here. So drumroll please...Stacey has 9p23del. the 23rd band on the top part of her 9th chromosome. There is very little known about it. And The stastistics show that there is 1 in 7,000,000 live births in the USA. There is a syndrome called Alfi's Syndrome that is associated with that diagnosis but she doesn't have but maybe 1 or 2 of the symptoms of that syndrome so it's safe to say she doesn't have it. She doesn't have anything else at this time that I am aware of and she shouldn't have to see any other doctors. There is nothing to say that her life span would be or is shortened in any way. She is still the same Stacey. If you have any questions please feel free to ask. Meanwhile...

Stacey has been excessivly tired and lathargic. She has been going to school and coming home and sleeping, waking up around 6-7pm for an hour or so eating and then going back to sleep/bed at 8pm. I am concerned because when she had this sleep pattern in the past she was anemic. So I am taking her to get some labs done to double check her CBC. I will let you all know if there is something wrong. Have a great weekend. Thanks for checking in on Stacey.

God Bless,
Cherice, Stacey and Sunny the most wonderful service dog!

Disney Pictures Part 1

I am having trouble with the pictures from Disney that they took. Here is a slide show of the pictures I took with our camera. :-) there are quit a few but all very cute. Great to see her sooo happy :-) When I can figure out how to turn all of the Disney pictures right side up I will post them on here :-)

Love and God Bless,
Cherice, Stacey and Sunny

Disneyland and Genetic Testing Results

Hello-

We had a lovely vacation at Disneyland. Stacey had so much fun. She looooved the tea cups and dumbo and the carousel the most. When we went to Disneyland the first day she met one of the cast members and then he was talking to other cast members and then soon everyone in Fantasayland had fallen in love with Stacey. She was treated like a princess!! We went on the storybook canal and when we got off the ride. There was a "glass" (actually plastic) slipper that Cinderella left in Stacey's wheelchair and a note left from Cinderella. And then we went to the Princess Fantasy Faire. Oh boy we waited in line for an hour and then they let Stacey just have the run of the place while she met with all of the princess' they walked with her and talked with her and took a group picture which is rare. We definetly plan on going back to Disneyland sooner than later. Now on to genetics

After waiting 3 looong weeks. The results are in and Stacey does not have a Mitochondrial Disease or and genetic condition. So the next plan is to do a specialized chromosone test that first needs approval from her insurance company. So once it's approved we can go get the labs drawn and then the results will take 4 weeks to get back. So that will be quite a long wait. I will let you all know what become of it. I'm glad that she doesn't have a mitochondrial disease but on the other hand we still do not have any answers as to what Stacey might have. So I guess that's all for now. If you have any questions please feel free to ask.

Stacey has also been diagnosed with moderate-severe asthma. We are starting her on a couple of asthma medications that will go into her nebulizer to help her breathing.

Thank you for all of your continued prayers

Love and God Bless,
Cherice, Stacey and Sunny

Genetics and a Mount

Hello-

We went to see a geneticist today after waiting nearly 6 long months for an appointment. She of course asked a ton of questions and after thinking for a while and reviewing labs and charts she came to the conclusion that Stacey most likely has a mitochondrial disease. The Mitochondria is the powerhouse of every cell in your body. So she ordered some labs and we got them done while we were down at the hospital. The bummer is that the labs take 3 weeks to get back. A few of them come back sooner but they aren't the ones that could diagnosis the disease. We will be on pins and needles for the next 3 weeks. The doctor said that Stacey doesn't have Cerebral Palsy she just doesn't fit the bill. If you have any questions please don't hesistate to ask. I'm a little lost myself and not too sure where to turn from here. I know that it's all in God's hands. On to the next topic...

So for about a month and a half I was going round and round with the insurance company about approving a mount for Stacey's wheelchair that her Springboard would be attached to. Seems logical right? And a step in the right direction to some independence. Well they wanted the paperwork sent to this person and that person and to this company and that company and it seemed to pretty much anyone who knows Stacey. So I was getting slightly irritated that they were dragging there feet so hard into the ground. And called our local Assemblyperson on a Wednesday and that same Friday it was "magically" approved and on Saturday I had the paperwork in hand and on the following Friday I had the mount in my physcial posession. Now what was so hard about that...lol And it's installed on her chair and she is just in love with having her Springboard at her access at all times. It's such a huge step for her. Here are a few pictures I took tonight of her using her Springboard on the mount.

Please continue to pray. I really hope these tests shed some light on what is going on in her little body, as many of you know we aren't looking for a cure just an answer and to make sure that quality of life maintains at it's highest. And above all I love Stacey to pieces and she is so precious to me. And she was created in God's image as we all were and that is just fascinating to me. How amazing that when you look into your child's eyes your getting a look into God's eyes.

God Bless,

Cherice, Stacey and Sunny

Surgery 01-26-2009

Hello-
Stacey is having her 33rd surgery on Monday the 26Th. It's to realign the muscles in her right eye. I thought that a procedure like this was cosmetic but apparently not. They need to do it now because her eye is pretty lazy and we've tried patching and she will pull off the patch she doesn't care how much it might hurt and the atropine drops worked for a little while but we don't want to damage her left eye in the process. It's also a good thing for her to be doing this because she has her power chair now and drives all over town with that thing and if she is not able to see well then she's not able to drive well and that could become a scary situation. I am nervous about this surgery because of her going into respiratory distress a few days after the last EUA (exam under anesthesia) to determine if she needed this realignment surgery. A few of her doctors have expressed their wishes to have her stay a minimum of 1 night in the hospital to monitor her. I will let you all know as soon as possible what the outcome of the surgery is.
Stacey's surgery is scheduled for 2:50pm Pacific time. If you could please pray for her we would be especially grateful. I know God has her in his hands and He has always meticulously guided her doctors hands before. I am reminded daily that He has entrusted me with her care and I thank Him daily for trusting me and I in turn trusting Him. Have a blessed day and we'll talk to you soon.

God Bless,
Cherice, Stacey and Sunny