June has officially arrived! I love the summer. I love the sun, pool time, beach time, and lake time. Shorts and tanks make me oh so happy. The summer is also a birthday extravaganza in my family. We just added our first May birthday, this goes to MR. (mary-ross). June brings my mother & ME! July brings AK & my Papa. Then August we will celebrate my Meme & my tiny girls (Palmer & Blake). A lot of cake to be eaten ahead that is for sure. This year June brings another important day. Blake has another AFP check this month. In December we were so pleased with the AFP level. It was 103, down from a count of thousands. March we were hoping for 70's and her count was 112. I was concerned, but was reassured by the surgeons that this was no big deal and we will recheck in June as planned. So here we are in June.
Today Blake had a 6 month (post surgery) follow up with the surgeon here in Birmingham. I also have had some lingering concerns/issues I was anxious to talk to a surgeon about. I actually was looking forward to this appointment. Dr. Harmon started off by checking her tumor site. He felt her wounds which are now scarred over looked well. We talked about potty issues which we will continue to monitor until she is fully potty trained. She is having a slight issue but nothing totally unmanageable or concerning right now. Now that Blake sits up on her own we are so happy, but have a concern because she has a slight lean forward while sitting instead of sitting up straight like most babies. She does this to compensate for the uneven bottom she has. Jeff & I are concerned that she will do this forever and her spine will grow with a curve and she could create scoliosis. The surgeon said that was out of his range of expertise and is referring her to a ortho doc to keep a watch on this. So that made me happy. :)
Then we got to the AFP concerns. I asked what our next game plan was or would be for a increase or decrease or stay the same. If her number drops (say 50 points) then that is great and everything continues on as normal with quarterly rechecks and the 1 year MRI in Cincy. If her number increases (say 50 points) then he wants to have a MRI done and see if there is anything on the images. Then obviously asses from there. If the number stays the same then he said he would have to scratch his head and think that one over. So still not sure about that. He went ahead and had the lab draw the AFP today. I should have a call from his nurse on Tuesday with her results. He was also going to call Lim to update him on the current plan of action.
So now as usual we sit and wait...anxiously wait for those numbers that I look forward to and dread hearing all at the same time every three months. He reassured me that this is a part of having a SCT baby and that its part of the game as unfair as that is. Bluh is what I want to say!
As usual I intend to continue my daily prayers for her numbers to show what we need them too. We are so close to a major milestone marker with no hiccups. I think being in the NICU was easier because you expected problems and when they didn't happen you were so relieved and surprised. Now that we have two bouncing happy baby girls it just shakes me to think something might happen. I will continue to trust in the Lord that he does have a plan and his plan does not include harm to her.