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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Wednesday, March 13, 2013

2 month Doc Appt

My little Squish had her two month appointment today with Dr. M. She is getting all chubbers, weighing in at 12 pounds 11 ounces.. I think she will take after her daddy in height; 24 inches! This all makes it so she is sporting 3-6 month clothes. We talked about her MRI date and then when the doctor looked at her bootie she was amazed at how it has changed. I have been taking pictures. I learned this from infectious disease, that way you can document changes. After looking at all of the pictures, she thinks May's bootie is all red/purple because she has something called a hemangioma. This is a cluster of veins that is pretty much harmless. Well except that it is midline (near her spine). It should go away by the time she is a teenager. I am supposed to send some pictures in a couple of weeks to her ped and also mention it to Neuro. It is actually pretty common and consistent with tethered cord syndrome. I am so thankful that as of right now this whole thing doesn't hurt her or bother her in anyway. It is such a blessing to have such wonderful doctors and specialists. There are many people out there that have to really push and advocate for their children. I believe I must have hit the jackpot. She is running a low grade fever tonight after all those shots. Poor baby:( Shots day is not a favorite of mine.
I scheduled Gators cardiology appointment. I always tell him way in advance when he has appointments so that he can prepare his little mind. He got kind of emotional. Frustrated that he has to have stickers (EKG leads) but after promising a toy of some sort he perked up. Then I told him about wearing his halter monitor and he had another fit. He is afraid his friends will make fun. I asked him if his friends have ever made fun of his special heart? He said no, I told him that they wouldn't make fun of him for this either. It is like a jet pack... They will have questions but won't make fun. We will see how it all goes down. I am trying to listen to his concerns and calm his worries. Sometimes he has to experience it all to believe me, also he has to get all that anxiety out before the appointments. I reminded him that he would be an example to his little sister of how to be brave. I am so proud of him for talking to me about it. He really is a great kid!
The sun has been out and we have been playing outside. It is wonderful to be out enjoying it all again. Hurray for spring. I haven't even started my spring cleaning lists yet. So much to do so little time. The tulips and daffodils are coming up. I can't wait for it to be flip flop weather so I can free my toes!!!

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