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Old 02-29-2012, 09:37 AM   #16
Moodyzblu
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That's great news !! I'm excited for you and hope you get your dates real soon.
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Old 03-01-2012, 09:45 PM   #17
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Found your report. Excited to see your planning and pictures.

YAY for meeting her wish granters! Hope they got her meds figured out. Takes strong families to have kiddoes with health issues.

Following along.
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Old 03-09-2012, 04:57 PM   #18
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Just thought I'd write a quick note to let you know we are still here! I spend my nights when I can not sleep reading other people's trip reports so that I will have lots of good ideas when we get our dates and really start planning Sarah is doing pretty well, had a good visit at the endocrin this week to finally hear that her thyroid levels are where they should be...we have been adjusting synthroid doses for almost a year! This Monday we go to pick up her back brace for scoliosis...not looking forward to that. It is a providence back brace, she will not even be able to sit up when wearing it. For a girl who has struggled with sleep issues for years, I can't imagine her resting very peacefully in this We are trying to avoid yet another surgery for this poor girl, so I will cross my fingers for the best!!

Maybe the next time I update it will be with dates!!! Have a good weekend!
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Old 03-09-2012, 05:06 PM   #19
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Just thought I'd write a quick note to let you know we are still here! I spend my nights when I can not sleep reading other people's trip reports so that I will have lots of good ideas when we get our dates and really start planning Sarah is doing pretty well, had a good visit at the endocrin this week to finally hear that her thyroid levels are where they should be...we have been adjusting synthroid doses for almost a year! This Monday we go to pick up her back brace for scoliosis...not looking forward to that. It is a providence back brace, she will not even be able to sit up when wearing it. For a girl who has struggled with sleep issues for years, I can't imagine her resting very peacefully in this We are trying to avoid yet another surgery for this poor girl, so I will cross my fingers for the best!!

Maybe the next time I update it will be with dates!!! Have a good weekend!
Thanks for the update! yay for getting her thyroid levels stable!! Its amazing how much one thing can effect a body so much. Hopefully she can pick out an awesome looking brace, or do something to make it pretty. =) Poor kid, hopefully she will get adjusted to it and get some sleep. We'll keep our fingers crossed for no surgery also!

Cant wait until you guys get your dates. When are you hoping to go??
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Old 03-09-2012, 05:09 PM   #20
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Gonna see if I have this photobucket thing figured out yet...

Here is a pic of Sarah and Sophie last summer...


Sarah's last hospital stay, this doesn't show it, but she LOVES pet therapy

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Old 03-09-2012, 05:11 PM   #21
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Check up with Transplant Team

Mariska had her check up with her Transplant doctor yesterday. Her echo looks perfect and her rejection mecications are in a good place. woohoo!! Told us not to come back for 3 months and to enjoy our trip. Such a blessing. Thanks for all the prayers and thoughts for her.

Now I feel safe to plan. SO much to look at and do, hopefully I can get on top of where we want to go each day and where to eat.

Whoops posted this in the wrong place. Sorry!
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Old 03-09-2012, 05:19 PM   #22
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Gonna see if I have this photobucket thing figured out yet...

Here is a pic of Sarah and Sophie last summer...


Sarah's last hospital stay, this doesn't show it, but she LOVES pet therapy

We loved pet therapy too. haha with the same i'm so done with this place bored zoned out looks. Its so hard to be stuck in the same room day after day with so little to do and no where to really play.

Thanks for sharing your pictures, Little girls are so fun!
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Old 03-18-2012, 09:21 PM   #23
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Well, it has been about a month since we saw our wish granters! We are trying really hard to be patient to get the official word that her trip will happen (ok, really it is just me who is impatient. Things are going pretty well for Sarah right now medically, other than possibly an infection around her g-tube site. We will get that checked out tomorrow, but otherwise she is doing pretty well. Hope everyone is doing well, and maybe we will have good news to share soon
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Old 03-19-2012, 08:43 AM   #24
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Glad to hear all is well !!

I know waiting is the hardest part ... But it will happen soon !

Thanks for giving us an update !
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Old 03-31-2012, 12:58 PM   #25
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Still here, still waiting!

We are still here, and still waiting to here the official and get some travel dates. It has been about five weeks since meeting with our wish granters. They warned us that it could take quite a while, but after hearing from a couple other Michigan families, I was hoping things would move quickly. It is ok, we find plenty to keep us hopping. I am a teacher, so I am definitely looking forward to this next week!! Spring break for me usually consists of cramming in as many appointments for Sarah as I can, because my sick days are always long gone by now! So, we will head to U of M Monday for an MRI of her spine. I can't even count how many times this girl has had general anesthesia Tuesday she will be having some dental work done...in the office and hoping to avoid anesthesia again!!! Weds will be my appointment day with a trip to the chiropractor and then for a much needed massage!! Maybe we will have some down time at the end of the week

Anyway, maybe next time I update on here we will have dates!!! Have a great spring break to any of the rest of you who are on the same schedule we are!
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Old 03-31-2012, 10:13 PM   #26
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Hope you get your dates soon & can enjoy a couple days of your spring break
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Old 04-22-2012, 08:05 AM   #27
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Hope you get your dates soon. Then your planning can really begin.
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Old 04-23-2012, 08:59 PM   #28
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Tentative dates??

I heard from our wish granter today. SHe said they are still working on the paper work, but we are tentatively in the books for November. One of dates we gave them was the week of thanksgiving, as I am trying to minimize the number of days I have to take off of work, so hopefully this is what they are looking into!

As far as life here...we had a brief inpatient stay last week to get Sarah cleaned out...she has struggled with constipation forever, and needed some help last week! Otherwise we are just juggling some random appointments and trying to get her seizure meds adjusted to keep her seizure free!

Have a great week
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Old 04-24-2012, 07:53 AM   #29
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November is such a nice time to go ! I hope you hear soon.
Glad that Sarah is doing well and hope she is feeling better after last week.
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Come check out ..
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Old 04-24-2012, 08:15 AM   #30
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I heard from our wish granter today. SHe said they are still working on the paper work, but we are tentatively in the books for November. One of dates we gave them was the week of thanksgiving, as I am trying to minimize the number of days I have to take off of work, so hopefully this is what they are looking into!

As far as life here...we had a brief inpatient stay last week to get Sarah cleaned out...she has struggled with constipation forever, and needed some help last week! Otherwise we are just juggling some random appointments and trying to get her seizure meds adjusted to keep her seizure free!

Have a great week
Hi just stoping by to check out your PTR. Hope your daughter is feeling well, and yay for your tentative dates. My family is hoping to go some time in November as well, either before or after Thanksgiving. Hope you get your official dates soon.
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