Monday, June 7, 2010

470

That's Gabriella, pediatric transplant number 470 at Loma Linda University Medical Center. 25 years of transplanting kids, and she was 470. I'm thinking that might be a good nickname for her. Project 470? Number 470? Four to the 7-oh? ;)

The round of steroids worked! I listened last night and had to concentrate VERY hard to hear any of the rub. Today, the doctor heard NO rub and only a slight quiet murmur. I told him it was hard to displace my thinking from what I had embedded into my head for a year. I had a list of Gabriella's heart defects memorized and understood, and now when I hear murmur, it is COMPLETELY unrelated to everything I knew before! In transplant kids, it is common. All the valves are sewn back together and can cause a slight sound, nothing to worry about. An old effusion is gone, her ECHO's look awesome..... Her heart is ALL settled in and looks as if it is loving her body! And she is loving it back! She wanted to go for a walk this weekend, and said she did not want her stroller!!! That was like music to our ears, because she never felt good enough to walk distances, and when she did she would always turn lovely shades of blue and get tired easily! She walked about 3 blocks, and told US we were going too slow!! She feels great, and looks great.

I also took in my letter to the donor family today to clinic. 9 pages and a card I bought almost a year ago that was made specifically for organ donation. I gave it to one of the girls, and she will send it along. I'm not too sure how long until the family finds out a letter was sent, but I will now just rest in patience and peace in knowing I wrote that letter and sent it on.

Someone told my mom yesterday that she felt it was time for my mom to stop wearing her Gabriella band and DonateLife pin because Gabriella was healed. I am totally ok with anyone that feels it is time to stop wearing their Gabriella band, and I know it is no reflection of the level of support or love anyone has for her, but to tell someone to stop is much different. Discerning what is personal opinion and that of God is not easy, but I am sure this was her personal opinion given the sporadic timing and circumstances.

Gabriella was not healed, she was given new life- how much more amazing is THAT?! She was given this limited opportunity to be completely reformed at the mercy of God, but at a price. The price not only what she was already suffered with her stroke and loss of speech, but being risks to her kidney function, high risk for cancers, difficulty bearing children, gum issues due to the cyclosporine, possibility of future transplants, loss of much of her 5 year old innocence, being on medications for the rest of her life, inability to recover from the common cold or virus without much difficulty, and the list goes on. The prayers are needed for her continued health, as she has not been miraculously and completely healed. But at this point of the journey, when God has just given her new life and she is full of so much light, is the most important time to be praising God. This is the time He craves our adoration and love, as a 'thank you'! To stop wearing our Gabriella bands right now is like saying we are done with this part of the journey, and puts an end to the avenues they can bring in glorifying God in this journey. The stories we can tell when someone inquires about the band or pin can impact people for years to come, spread awareness of Congenital Heart Defects, the importance of organ donation and making that decision for your children and the impact God can have in ones life. It is never time to stop supporting, especially someone who's journey is not over. Taking the blessing from God and then closing that chapter is not what He wants us to do. It is now our job to take his blessing and grow on it... and that it what we will do. So my message to the lady who said it was time...... we don't close doors. We don't put limitations on God's work. And I am almost positive that since God has led us every step of the way to where we are right now, He too will tell us when it is time to remove the reminder and symbol of so much from our wrists.

People still wear Livestrong bands, right? ;)

I wanted to again thank everyone for your prayers and support. Gabriella is seriously a walking miracle, and to be able to share that with everyone has been a blessing and honor for ME.

6 comments:

Kristine said...

And, you are always a "heart momma" and Gabriella always a "heart kid."

Angies Support Team said...

Kristi, can I just say that I love coming on hear to read about how Gabriella is doing and how honest you are with your emotions! When I was healed everyone stopped wearing my shirts and just acted like nothing ever happened. I was the exact opposite and I was healed! I still wear my shirt or my braclets or necklesses. I still go back and read my blog or read personal journal's. It is a reminder of what God has done in your life for you and your family and those strangers you will never know of. It is a way to share and a way to remember. Yes I still do wear my livestrong bracelet sometimes! I tell new people about Gabriella everyday! It brings a smile to my face to think of such a beautiful baby in God's hands! :) And I will share her and my and any other story I can until the day I die! :)

Denise said...

It is totally someone's choice to wear or not wear a band, but for someone to suggest taking it off is just plain wrong. My significant other had an issue with his niece. Of course we wore the bands. At eon point I felt the time was right to not wear it anymore. It was acutally kind of odd as I had become used to wearing it. I took it off because I was convinced that she was on the mend and the dire circumstance had passed. To me it was positive to take it off. For my other half, he felt the need to continue wearing it longer. I never sugggested he take it off and he never suggested I put it back on. It is a choice and what the band signifies to each person. I continue to keep your beautiful daughter in my prayers.

Kara said...

I agree.....The Gabriella Band and Donate Life pin aren't only for Gabriella and her transplant in a way....Someone sees the bracelet or pin, asks what it's for and is opened to a whole new world. Not everyone walks around thinking of children with heart conditions or even about becoming a donor until it is staring them straight in the face.
Additional to that....it's just another way to share Gabriella's story and touch peoples' lives.

Linda said...

I'm sorry you had to deal with that insensitivity... Gabriella's battle is far from over but God is obviously doing amazing miracles along the way. :)

Corri said...

When we started walking down the transplant process with my daughter, the CICU attending described a transplant as "trading one condition for another." As you said, you've traded one set of issues for another (hopefully less severe and limiting) set. But that new set is remarkable in its own right.

Good luck to you and to Gabriella!

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