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Monday, January 24, 2011

Little news is good news

It has been increasingly difficult to blog lately. We cut internet out of our budget in our belt tightening efforts last fall, and I use an app on my phone to Tether my connection. The problem is it is a VERY unreliable internet connection and also a pain in the booty to use! I have tried blogging from my phone, but they are no longer delivering! We are hoping soon to reintegrate internet into our budget for a multitude of reasons, so here is to blogging more!

Gabriella has been doing amazing. We have been going complete months without visits to Cardiology. We are still having issues getting her immunosupression medications balanced because she is metabolizing them in an unpredictable manner. Plus, she is growing. Right now her levels are very low, meaning she is not as protected as she needs to be to prevent rejection, so we are working on new dosages. Her magnesium deficiency is finally controlled though! The keloids on her scar have started to fade and she proudly shows everyone her scar, still.

After working on it for months and months, Gabriella started homebound education, speech and occupational therapy this week! This adds 7 hours to our previous homeschool schedule, outpatient therapies with Miss Lisa and any other doctors appointments we may have. The need for me to stay home continues, and I am gladly obliging. Though it is difficult at times, I couldn't imagine going to work and leaving it up to others to tend to Gabriella's needs. I hope to be able to eventually integrate some part time weekend work into the situation to help us get out of this extreme financial emergency we have been living for a while, but until then, we continue to remain faithful and thankful to God for providing!

Gabriella's speech has been out of this world. Her sentences are becoming more complete and clear, her retrieval and execution of words is without effort and her ability to retain information has expanded to new levels. We couldn't be more proud of her and her progress. With all of the schooling evaluations lately, we have been told continuously how smart she is and how she is right on track for Kindergarten! This is such a blessing seeing her at this level when just a year ago she she was nowhere near this. She even has the typical 6 year old answer to "what did you learn today?" and says "I dunno". :)

On that note, we are moving, again. It seems to be a clockwork announcement on this blog, as this will be our 5th move in 2 years! Though I was hoping this announcement would come stating that we were relocating back to our beloved California, we are staying in Arizona. January 2009 we did a short sale on our rural home of 7 years and moved into town to a lovely rental. Gabriella was diagnosed that summer and we moved September 2009 in with my mom to prepare for transplant. We then moved in April 2010 to our apartment, since we were kept off of the transplant list longer than we hoped due to Gabriella's stroke and I couldn't live with my amazing mom forever. Five weeks later in May 2010 we moved to Loma Linda for transplant and returned to Arizona September 2010 to the same apartment. The apartment we moved into is a lovely little 2 bedroom apartment. It has been an affordable option for us, and a safe shelter when we needed it. Knowing our lease renewal was quickly approaching, I decided to see what was out there since our rent was increasing. Though our apartment is great, with 2 kids sharing a room who are still very into toys and a momma who could occupy a 1000sf location in my sewing and crafting alone, we are bumping elbows frequently and triple using spaces like our little $20 Ikea table for dinner, sewing and schoolwork. One little comment on Facebook and the BIG hand of God, a lovely friend let us know that she coincidentally got a call from her tenant right after I posted my status that he needed to move and downsize and her place would be available. Three bedrooms, 2 bathrooms, garage and 300sf more space for the same exact price as our apartment is increasing to. If that wasn't fate and Gods divine plan, I don't know what it was! Between ourselves and the homeowner, we are going to fix this place up super nice and get all settled in this spring! We are excited to move into a place that seems to be longer term, since our moving around has always been for short commitments and an unsettled view of the future. Of course, as sure as I say that, God will remind me that His plan is bigger than mine.... lol.

Not too sure when we will head back to Loma Linda. We technically were to return in early February for genetics follow-up but due to financial constraints that probably won't happen. We would love to go back for her 1 year biopsy which is quite routine, but I feel slightly torn. I would love for her heart hospital to do it, as we feel we are still very much part of the heart family there. Our insurance company also expects for us to go and do it there, as they are the surgical hospital associated with her transplant. But then we have our team of doctors here that can do it, and I worry about them thinking that us going is a sign of lacking trust, though it is not. We just have a special connection to Loma Linda, and feel it would be continuing what we began there with our transplant team. We will see what comes of it... but wherever we do it I am just praying for a big fat ZERO rejection!!!!!

Finally, Gabriella's Make-a-Wish is recharging as we speak and we are hoping to soon have our wish granters visit and receive Gabriella's wish (again). Since we went through the process in August 2009 but could not go on the trip due to Gabriella's sudden stroke, we must redo everything! Gabriella's wish has slightly changed as well! Can't wait to share all the details of this with all of you!!!!!!

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