Day +195 /15 Months Old

  It was a long day, but we made it through! We waited in pre-op for nearly 5 hours due to an emergency in the adult surgical unit (the patient is ok thankfully), so around 4, Kiira got to go in. They gave her Versed, a light sedative before they took her, and she was so loopy. It was kind of funny watching her. Her endoscopy went perfectly. Her esophagus, stomach and small intestine look great and needed no biopsies. With EB, there is a huge concern with blisters, scarring, webbing and narrowing of the intestine to where some people can’t even swallow and need frequent dilations, so this is wonderful news that Kiira’s is clear and an answer to one of our prayers! 

Then she had her PICC line placed in her right arm so she can receive her donor blood through it and that went well too. Last, she had her biopsy (another 5 skin punches on her right thigh), pictures of her skin with all bandages removed, and a blister test, where they purposely induce a blister to see how long it takes. In June, it took 7 minutes, in October it took 1-1/2 minutes and now it took 9 minutes. Based on these results, I’m not sure this is the most accurate test unless they did it in different places and one area was extremely sensitive. This is compared to a carrier of an EB gene like me that might take 20 minutes and a non-carrier would take 40 minutes. 

After the procedures, my mom and I re-bandaged her in recovery before she came off sedation. She had a new blister on her knee because I took her tights off in pre-op, not realizing she would be crawling around for hours, even though it was on a soft mattress. That’s how quickly it can happen and how important our particular bandaging techniques, including tights to hold the bandages in place, are to her care. But they took great care of her in the OR and no skin injuries resulted from them handling her. They all think Kiira’s skin looks great and maybe it does for someone with EB, but as a mom, seeing the number of scars and healing wounds our 15-month old already carries, it’s not “great”. I know though, it can always be worse. 

Kiira woke out of sedation so grumpy. I’m sure things hurt a bit, she was hungry and confused. It took about an hour to get her calmed down and we got back to the hotel at 8pm where she could play for a bit before bed. 

I’m so thankful all went well today and those prayers were answered. 

So tomorrow we start at 8 am in the infusion clinic to get her donor cells. Please pray that these cells grow and we can save her transplant and the transplant can improve her skin! 

As for her 15 month stats–23 lbs, 29″. She says numerous words and animal sounds, but her favorite is to roar like a lion. She loves to say, “What’s that?” about everything and is very observant, but loud when she wants to be heard. She sings “Let it go” (a very short version) from Frozen and it’s the sweetest little song. Sometimes she talks to the ceiling/air and I wonder what she sees that I can’t. She stands for a couple seconds without holding on and cruises or walks behind a walking toy. She points to her owies now and likes sympathy but will let you know when she is mad. Kiira knows how to bug her sisters, but they love each other so much. Kiira’s EB might be the forefront of my thoughts and posts, but she is so much more than that and I am blessed by her presence in my life. She is my love!

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