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Sunday, May 23, 2010

Sparkly heart update #15

Did I really post my last sparkly heart update Thursday?!?!


Taken 5/23/2010

We had a wonderful week as far as support goes. 8 cars, of 20 people, over 7 days... we had friends and family filter through and be with us through the week. It was great having the love and support, and good for all of them to see how amazing Gabriella was doing. She is a testimony of strength and faith to even our closest family and friends. My son PJ even came down with my sister in law and we were able to spend some time with him. It was noticeable to even me how differently I felt as a mother to him. This process has changed me. God is using Gabriella. On top of the in person support, we have been shown incredible support through social networking. I have received some of the most amazing notes and messages about how Gabriellas story has changes peoples outlook on their children, God and miracles. Her impact... and you all sharing that impact with me... puts her purpose in life at a tangible level. How many people have gone their whole life still searching for their purpose.... and my 5 year old has found hers without even knowing it! My personal Facebook has been blasted with messages of love, my Twitter has seen tons of support and over 200 new followers, and my blog has seen over 23k page loads over 15k unique visitors, 8500 being first time visitors. The love has been overwhelming.... and I wouldn't trade it for the world!

Today was post-transplant day #6. Gabriella is back, plus some! She is so vibrant and full of energy. She acts like she feels better than she has in a super long time! Her coloring is fabulous, her stats are stable, and she is recovering picture perfect. Her sassy diva style is leaving behind an impression on the staff here.... she may have a reputation!

She only has her central line and one IV in place. Otherwise, everything else has been pulled! She finished her 5 day cycle of IVIG and Thymo treatment which harshly kills her immune system and is down to the maintenance meds she will be on for the rest of her life to keep the immune system suppressed. It will take a few months to get her dosages just right. She is on 16 doses of medicine a day, 7 different meds at 5 different times during the day. We are getting comfortable with her meds. As their transplant kids stabilize, they are mainly cared for by the parents or bedside support, with the nurse as just an aide. This helps us get comfortable with the new routine.

It is insane to think that we might be discharged just 9 days later... and we don't for one second find it as luck. God has been so amazing, and that hedge of protection I pleaded for you all to pray for is strong and tall. We feel so blessed for every moment.


Taken 5/23/2010

For the first time in over a year, I feel like my daughter is full of life, and not dying. Like we have a future beyond fear. We have rounded the top of the steepest point of the mountain and are looking at the beauty of what is in front of us. Like Miley Cyrus says about her song The Climb, which has been our theme song through this journey...... "Life's a climb, but the view is great."


And a funny video to leave you with... we had a Memory, Old Maid and Bingo tournament with Aunt Kara today. This was Gabriella tricking me into thinking the card she has was a Princess, when it was really the Old Maid Ursula! She cracks up.... and I love it!
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