Sunday, January 11, 2015

Dr's appointment updates...

Thank you so much for your prayers regarding Andrew's ENT appointment and Grace's cardiology appointment.  Here is a huge praiseworthy update:

-Remember I told you about how I was eager to meet the ENT Dr that Andrew had an appointment with because it was the ENT that I had wanted Grace to see, but he didn't have any openings when we needed to see him?  Well, he was everything that I'd hoped for, super smart, conservative in his approach/strategy, great bed side manner, and appears to treat each child as an individual versus feeling like your at a puppy mill.  All that being said, we came up with a few possible treatment scenarios based on what he saw on Andrew' most recent CT scan (the cd that the Allergist gave me with the images on them wasn't working, so he had to request that they send them over to him).  We are waiting to hear from him with his decision to either watch Andrew and see how he does, if he gets another sinus infection (or worse pneumonia) then proceed with an intervention, or put him on a longer course of antibiotics now to make sure that it is completely cleared up, or do surgery to clean out the sinuses and remove the adenoids.  We hope to hear back from him early this week.  Will you please pray for wisdom for the Dr to know what is the best strategy for Andrew in moving forward and that whatever it is would entail NO MORE sinus infection, pneumonia's, or complications?  Our little sweetie has already endured so much with such a great attitude, so we are praying that he can have some reprieve. Lastly, before he walked out of the room, I asked him if he would be willing to see Grace despite the fact that someone else in his group had seen her last year (remember, we are going to have a long standing relationship with her ENT, so I would really like to love him :-) and his response sealed the deal for me...  he said "I would be honored and happy to see her, Dr... (his partner) and I work interchangeably."  Now that is not the type of response that just rolls off of the tongue of a physician. SO GRATEFUL!!!

-Grace's cardiology appointment was full of blessings...  first and foremost, the gradient across her mitral valve was LESS than it was last echo!!!  Praise be to God because He's the only explanation for that!  Her cardiologist used the word "normal" when referring to Grace's heart.  Let me clarify, her heart is FAR from "normal," in fact in many ways her heart is sort of like a piece of fine machinery that is duct taped together, patched, and with spare parts rigged to do some of the most important work, but the fact that she referred to her hearts functionality as "normal" was music to my ears or heart  :-).  We also got the green light to try to do her next echo unsedated which will be an interesting attempt, but I look forward to her not having to be knocked out for her echo because it takes her most of the day before she's back to herself.  After waking up from her echo she feels drunk for hours, which means she's super cranky and wants to get down and walk, but we can't let her down because she can barely control her head, let alone her whole body.  Praying that she gets the memo that if she can lay still for her next echo (in three months), she won't have to get drunk anymore.  The other blessing came when we stepped off of the elevator and saw the surgeon that performed Grace's first open heart surgery at TCH (not Boston) and who would have done her subsequent surgeries.  David has run into him a few times with Grace during clinic visits and he came by to see Grace in the ICU when she crashed before being medically flown back to Boston.  However, that was the first time that I have seen him since he operated on Grace when she was two weeks old.  He is obviously very aware of Grace's case and I always wondered how he felt about our decision to go to Boston, and if our decision would make interacting with him awkward.  It is with much gratitude that I can say, he not only stopped to say hi (he chose to miss the elevator that he was waiting for to talk to us), but he showed genuine interest and concern for Grace (and our family) and our conversation was far from awkward, but instead a real blessing.

 Here's drunky doo...

-highlights of the weekend...  Andrew had his first basketball game where he made two baskets and played some good defense!  Our prayer was that he would get to feel a sense of accomplishment at his game because he is very aware that Abigail is pretty athletic, so we have been praying that he would find something that he could feel good about.
Another Andrew story came from church today, he has a sweet little girl with Up's in his class at church that he loves to try to play with and just be near her (I wonder where he gets it from).  When we picked him up from his class he was beaming and couldn't wait to tell us that when this sweet little girl got picked up by her parents, she called his name and gave him a hug (she initiated the hug :-).  He has been talking about that special moment all day long.  So simple, but so sweet!

-it's always a precious time for us to get to worship with Abigail and Grace (Andrew is already in his class at this time) at church.  Today was extra sweet because Abigail insisted on holding Grace the whole time (some how all 43 pounds of Abigail can some how carry 23 pounds of Gracie Doo for a long time) as they just worshipped together, while loving on one another.  It was one of those moments that make time stand still and the chaos of life fade into the background for just a moment.

I didn't get a picture of Abigail and Grace at church of course, but here is Abigail warming Tucker up after he came in from outside wet and shivering...

Grace goes back to school this week which is exciting for all of us... not because it's easier to have her at school all day, but because she loves and thrives at The Rise School so much, but I miss seeing her precious teachers and the staff too!

Village, we hope that each of you has a blessed week that is filled with joy both in the mundane moments and in the chaos too! 

No comments: