I won't ever say that we are appointment free for a week again! So, as I mentioned in the last post, Dylann had a very eventful Thanksgiving weekend. She was having a hard time staying awake, labored breathing, and very pale Friday morning. After two ambulance rides and two ER visits, we ended up being admitted to Childrens for 4 days for hypoglycemia. There were many tests and procedures done to try to determine the cause since this had not ever been an issue for her prior to last weekend. Ultimately she ended up having a gastroviral infection that was impacting her pancreas and along with that and her desire to avoid eating at any cost, was causing the blood sugars to drop. She got home Monday afternoon and we have been tracking her sugars at home. They continue to improve and we have been following up with the endocrinologist with the numbers to see if she wants to do any further testing for possible metabolic conditions that could have done it. So far she doesnt have concerns of this. We talk with her again tomorrow.
So this week was a bit busy. Dylann had a few follow up appointments with primary care and endocrinology just to ensure she stayed on track. We had Craniosacral therapy this week which was good timing since they had to take her casts off in the hosital and allowed for some work on both her ankles and her systems to help continuing to heal.
We had a few appointments at Shriners. First was with the plastic surgeon. Our new orthopedist referred us to him for her amniotic band marks on her right calf. I hadnt thought anything about them to be honest and just assumed that she would have a misshape to her calves for her entire life. Well, the MD stated that he can fix the marks! He said that they usually do treat them becuase as the kids get older, the band mark starts to push more and more on the arteries and veins in the area and can cause issues. He also discussed that most kids when they are older do prefer to have a scar on their extremities versus having the different shape to them. So, Dylann will be having minor skin surgery in Jan or Feb and Dr Skow is confident that after about a year, the shape will be normal!! That was exciting and unexpected news. Then we saw an orthopedist who was filling in. He said that Dylann's feet are still at about a 2 of 6 levels so she is going a little slower. She did however have her casts off for a week so that did result in some regression. He was able to still make some movements with them and said they will continue until they cant get movement any longer. He did feel that she would need to be in casts much longer than typical but that is common for arthrogryposis clubfeet. She then was recasted and the caster was able to get some movements. She handled this better then the first 3 casts so hopefully it is starting to hurt less!
She is back to being my sweet little girl all week! We missed her this weekend!
