I've decided to try and make posts once a week since things are happening so quickly with Gracie. It's been a crazy month. Gracie got sick and was in ER with 105.7 temps. We still aren't 100% sure what she had, but she did have an infection of some sort. They thought it was a UTI, but the labs came back on her sample and they were negative. Shortly after the ER visit, we got to go visit Robert's family in Coeur d' Alene and had a great time. My brother-in-law got married, Robert's 96 year old grandma got to hold Gracie for the first time, and Gracie just exploded with her milestones. She is now crawling, sitting up, pulling herself up, and has started cruising while holding onto the table just a bit. It's so encouraging to see her accomplish these goals. I am noticing she falls and sits down a lot, and I'm thinking it's because of a balance/strength issue with her FH leg.
A couple months ago we filed for Medicaid to assist with Gracie's medical care, and just found out we were denied. Apparently we make $500 too much. Even though she's disabled, which is just NUTS! So....we are are appealing that decision and requesting a fair hearing. We still have not gotten her brace, I've been waiting for fundraising and Medicaid and other grants I've applied for to come thru, and they haven't. It's looking like we're going to just have to charge it. I'm especially concerned about getting her in it now that she's trying to stand and balance.
Gracie's first surgery is scheduled for March. She will be getting her tibia straightened, (it is bowed), and her ankle reconstructed. We will be traveling to Baltimore and will be there for at least 2 weeks. I've had a lot of questions about what Gracie will really go thru. Since her condition is rare friends and family are a little unsure of what to expect. So, with permission from another FH mom, I am posting pictures of what Gracie's leg and foot will look like after surgery. She will be in a similar fixator for 8-12 weeks which will require pin site cleanings 3x a day since where the the pin sites are is considered an open wound. It will also mean arranging for clothing to fit over the fixator, and a vehicle to travel in where we can fit her leg and keep it elevated when needed. I haven't confirmed it, but I've been reading that a new car seat will be needed as well.
Our current prayer requests are for financial provision. We are beyond stretched and stressed with our finances for her medical procedures, and my employer just cut my pay by $1.25 an hour. Also for peace of mind, for Landry to not feel left out, and strength and courage as we fight these battles with Medicaid.
Below are some pictures from our visit and some of what Gracie's leg will look like after surgery, and some pictures from our trip.
**Please be aware the fixator pictures are hard to look at.**
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| Landry had so much fun diving off the diving board! |
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| The weather was perfect for being outside, so Gracie was in heaven! |
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| Camping in the trailor with his Lala and Papa! |
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| So proud of herself for standing up! |
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| Landry had so much fun at Silverwood. It took all day to get him to put his hands up and I got the PERFECT shot of it! |
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| Our first family of 4 photo! |
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| After we got back into town, we met my parents for dinner and Gracie was so tired she fell asleep in the high chair at the resturaunt! |
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| Information for donation! |
Heather,
ReplyDeleteSeeing your beautiful children reminds me of when you and Andrew were just babies. I am so glad to see you face this with the inner strength you have always had.
Sending love and prayers, Holly and Zane