Happy 6 month Birthday Cordelia!!!
We continue to count our blessings and praise God for the miraculous ways He works. She is happy and growing and thriving. She is smiling and playful and curious. It leaves me shaking my head at the miracle that has occurred for her to be in this place right now.
Life is crazy and complex and for all of the wonderful stories we've heard from other families with children in similar situations who are also doing well (a beautiful and wonderful thing!), we have also heard our share of sad stories...hard stories. We continue to pray for those families and none of us has answers to why those things happen...the hard things,the things we may never understand until we find ourselves in heaven someday....maybe then (maybe?) we'll understand with a little bit more clarity.
But for now I am incredibly grateful for our little miracle...and her mom, the hero, who got to be an integral and forever part of her miracle (The doctor called Dani a hero after both surgeries were complete!)!
The three of them (Cliff, Danielle and Cordelia) had a great week. They drove all the way to Kentucky for ice cream from Dairy Queen on Monday (it's actually only a 10 minute drive from Cincinnati to Ky!), and went to the aquarium on Tuesday. Cliff and Dani hoped Cordelia would like the aquarium a bit more, but Cliff said she was bored pretty quickly...I guess fish don't compare to all the high-tech hospital equipment and demonstrations she is used to!
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| Cliff's training team at the "gym" (in the Ronald McDonald House). That little Cordelia looks like one tough coach if you ask me! |
Cordelia's "numbers" (I'm not exactly sure what this means, but the nurses stop in to take "labs" once or twice a week and they are looking for certain tests to come back within certain ranges) have all been normal and good. There was a little glitch in her glucose numbers, but they think they have that figured out and aren't immediately worried about it.
The home health care/nursing staff is still working to maximize her nourishment and therefore have her on her feeding tube 16 hours a day, but Cliff and Dani are hoping to get her off of the feeding tube sooner rather than later so that she can start to figure out her own instinctual need for food, hunger, etc. They actually picked up some rice cereal this week, which Cordelia did not care for!
The most important medication that continues to be monitored is her anti-rejection medication. I asked Cliff if they would ever lower the dose, but he explained that as she grows in size/weight the amount of the medication actually is lessening (or becoming more diluted) as far as amount/percentage per. lb. Therefore, they just continue to give her the same amount and hope to not have to increase the dose too much as she grows...As I mentioned before, the higher the dose of anti-rejection medication the more her immune system is suppressed.
On a very exciting note, Cliff and Dani are hoping to be released to come home by very early October (possibly the first week)!!! WooHoo!! They are super excited about the possibility and can't wait to re-start their life back here. Their nurses are working on a "transition plan" right now where they are trying to set up the proper health care relationships in Buffalo, etc. They will need in-home health care to visit regularly and will likely also begin making trips to Strong Memorial Hospital in Rochester for any major imaging (MRI's, etc.) or other big appointments.
On that note, while they are really excited to come home they will be very limited in how much they'll be able to take Cordelia out and how many people they'll be able to have visit in the next few months. Cliff explained for example, that they shouldn't be around kids (or even parents of kids) who have recently been given a live vaccine because of the possibility of the illness being passed to Cordelia. In some ways this will all be a huge learning curve and we all just need to be super supportive, ask lots of questions and help them out as much as we can (sometimes by staying away if they need us too!).
That's all for now! We're getting really exciting for the benefit...we have received (and are still collecting!) lots of fun baskets and raffle items and looking forward to meeting many of you whom we have only heard about from Cliff and Dani or through email communications.
My daughter was with me at my moms tonight when we were working on the baskets and she has a heavy eye on one that includes some kids puzzles and silly string...you might want to stay out of her way, she went to bed asking how she could up her chances of winning it!! (:
Pre-sale tickets are $20...Track one of us down and let us know if you need them! They are $25 at the door and kids 12 and under are free.
Blessings to you all!
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