As is custom for clinic days, today started early at 4:50am. The kids were champs and were ready and in the car in no time flat. Each month that passes makes me realize just how much AnnaSophia grows up in that short period of time. All of our Children's Hospital "people" are amazed at how quickly she seems to be growing up into a little girl. As usual, she handles her blood draw beautifully. She just seems to know what she is supposed to do with clinic now.
I brought her Barney DVD today in hopes that it would entertain her during her echo. She was SOOOO excited to be able to watch Barney in clinic. She just laid there perfectly during her echo, clapping her hands every once in a while to her favorite songs. She even let her sonographer take pictures of her aortic arch without crying. This was a record of good behavior for two echos in a row!
Her cyclosporine levels came back perfect, her platelets are back in normal range, and her echo looks good. I think I forgot to share that her platelets were very elevated (600 range) last clinic. Normal should be somewhere between 275 and 400. She has been taking a half of a baby aspirin a day for this last month. We can now stop the aspirin therapy.
There was a conflict with her scheduled day for her heart cath, so we have rescheduled for Monday, July 13th. AnnaSophia's SVC looked good on her echo today, so we are hoping that she might not need it ballooned. The bottom line is that we are hoping that everything is growing nicely with her and that she will require very little intervention. Also, it would be wonderful to announce to the world that she is showing no signs of rejection.
On a side note, I would like to update everyone on little Christian's status. Christian's parents, Chad and Deanna were so encouraging to us when we were waiting for a transplant for AnnaSophia. Christian received his new heart when he was a baby, and seemed to be doing well for many years. This past year he was diagnosed with Lymphoma and has been battling cancer, as well as decreased heart function.
I saw Chad at Children's today, and my heart is breaking for this wonderful family. Christian is really not doing well, and we don't know what the answer is. I cannot speak for Chad and Deanna and all of the emotions that they are going through, but I know that they would greatly appreciate any and all prayers. Chad said that he felt bad praying for a heart for his son, and he doesn't know if that would be the answer. They are hoping that maybe there is a medication, even an experimental one, that could help his weakened heart.
This family needs a miracle. Christian needs a miracle. This is a family with a very strong faith in the Lord, and they know that God is sovereign. I can honestly say that having been in a similar situation a year ago, what they would truly love would be the gift of time with their son. If you feel led to pray for this precious family, I know that they would greatly appreciate it.
Mary
I look up to the hills,but where does my help come from?My help comes from the Lord,who made heaven and earth.Psalm 121:1-2
Posts
