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Thursday, July 15, 2010

Progressing thru recovery

We had clinic today, like every other Monday and Thursday the last 2 months. Today, though, was the end to another step of recovery. We are stepping down again to once a week clinics... going a full 7 days between appointments! This is hugs, since we never went more than 4 days without being at the hospital. As long as Gabriella continues to recover as well as she has been, we will only be at the hospital on Thursdays.

The next step is to go bi-weekly, then monthly. Dr Chinnock mentioned the "h" word today, reluctantly. He said Gabriella has recovered beautifully and he could see her going home at the 4 month mark. Of course, this is barring any unforseen complications we may run into, and their discretion at that time... which is why he was reluctant to mention it. Looks like I'm safe to plan a little 3rd birthday bash for PJ on September 8 in California though! It is hard to believe that if they do send us home then, which would be mid-September, we are already halfway through our stay here! I can't say I'm not a little sad. Not only have the team at Loma Linda become an extension of our own family, but we so adore California- though that isn't a new observation. But it will be nice to see our family and be back in our little apartment I love.

Gabriella continues to gain weight. She is not yet where she needs to be, but is on a great curve of gain to get to a healthy weight. She has always been tall and lean, which makes it hard to know whether she is naturally petite in weight or if she always had a super sick heart. Regardless, we are not doing anything except the normal meals and snacks, so I know her body will stop gaining when it is ready.

Currently, Gabriella gets medications at 9am, 5pm, 9pm and 1am. Her 9-5-1 meds are her immunosupressants, and last week the med doc mentioned transitioning those to 9a and 9p med times at higher doses to relieve that 1am dose. I went into todays appointment kinda excited for this, since 1am isn't the funnest time to wake up and give meds to a cranky diva who wants her sleep. But when the cardiologist looked it over, he decided to wait on this transition. The first 3 months are a critical period and she is on medications she won't be on after the 3 month mark. She also is coming from some serious meds while in the hospital that bottomed out her immune system. Messing with her doses right now while her levels are perfect is riskier than waiting until she is out of the danger zone and off her 3month meds. SO we will continue on her 1am med time until she is 4 months post-transplant. I didn't hesitate to agree with him. Really, either way is fine by me. She is here and alive and her meds are in great balance, what more could I ask for?

We spent some time at new friend's house this past Tuesday, and it was so great to feel normal and just socialize with some amazing, loving people. They have 2 little girls and Gabriella & PJ LOVED playing with them. I am finding Gabriella has so much more confidence in herself now, after seeing her interact with these girls and my friend Shannon's girls as well. I am SO proud of all she has overcome in her speech and energy barriers. My bestie is coming down from Sacramento on Saturday to spend some time, bringing along 3 little besties for Gabriella and PJ to be with. We are super excited to celebrate the 2 month heart birthday with them in Saturday the 17th, and I am sure Gabriella and PJ love all the "new" playmates after being so isolated!

I mentioned last Thursday that Gabriella's donor family accepted my letter on 6/22. Last night, I received an email that completed the connection between Gabriella and her donor. I got an email from her donor's mother, who told me that she mailed a letter through the agency but also wanted to reach out to us through email. I was blessed and honored to "meet" their beloved child in a new way thru her quick communication and cannot wait to receive her letter. Thank you all for walking the journey of grief with me for the family that lost their child and gave life to my Gabriella! As you all know, I honestly believe in the power of prayer, and I cannot thank you enough for praying for them with me. Many people have inquired about Gabriella's donor, and I can appreciate and understand the curiosity. I will, however, keep the information on this little hero confidential. It is not my decision nor right to share, unless the family asks me to. I do so greatly appreciate your understanding.

Thank you to everyone for the continued support for Gabriella, as well. As we get further and further away from the transplant that saved her life, we are still seeking prayers for this recovery to continue as smooth as it started, as well as her future well-being in regards to the side effects her meds can cause. We have had some amazing people come into our life through this journey even up into the recent days, and we always have room for more.


Unknown said...

The "h" word? Exciting! Promise not to ask all the time though. Sure you're anxious. YaY! I'm glad the donor family accepted. Being on the other side of things, I can tell you, nothing could have eased my soul more (with the way Cora died, donation wasn't possible). <3

Corey~living and loving said...

so much wonderful news......makes me smile. Always thinking of you and yours!

Mommy said...

It has been so rewarding to read how well she is doing! I often think of her and your family. God bless you all and hopefully soon you will be back home!
Joyce Hall (Amy Shepherds Mom)

Chrissy said...

I'm glad to hear Gabriella's doing so well. I had to laugh when you say her body will stop gaining weight when it's ready. Zoe was severely underweight at transplant. She started gaining significant weight last summer (6 months out from transplant). In the last year she's gone from a size 4 to a size 8-10. I recently discovered that yet another whole new wardrobe is in order for fall. She turned 8 in March and I will be buying 10's for the new school year. This makes new wardrobe #3 in 12 months. Zoe loves it, but what little girl doesn't love new clothes? So I wish you and your diva the best of luck with all the new clothes she's going to need in the coming months!

Summer said...

I'm soooo happy Gabriella continues to do well!!! I am a bit jealous you've heard from your donor family!! I haven't heard anything and I sent my letter to them almost 3 moths ago :(
Continuing to pray for a great recovery!!!

Love, Mason's Mommy