Yesterday we went for cast #5. It is hard to believe we have been on this journey for over a year now. Parts of me are very bitter. Very bitter. Parts of me are sad and parts of me are just grateful that we have a course to follow and have amazing friends to support us. Here is the nitty gritty of it.
I knew as us moms just do that Kiya's curve wasn't any better. I tried to be positive but I knew. She looked GREAT for like 3 maybe even four days and then the shoulder drop returned and my heart sank just a little. My hope was for any correction no matter how small but such was not the case. Dr. H says we are basically the same as where we started so around 60 and that Kiya is bascially straight in cast. It is frustrating to us and to him. He even went and double checked her MRI to see if something was missed but nope all clear. So we plug along and keep on casting and praying that someday the correction we see initially will stay even just a little.
To make things even more frustrating we now have another issue to deal with. Two of the doctors heard a heart murmur yesterday. It was mentioned once before 2 casts ago and not last cast at all or by any other doctor. That said Kiya doesn't go to the doctor much so it is very possible that it has been missed. She is due for her 3 year check up at which time we will be seeking a referral for a pediatric cardiologist. We need to first do an EKG and then depending what that reveals do an echocardiogram. Fun. NOT.
Kiya is also due for an important blood test. One I have been putting off but we need to do it. She HATES needles and having her blood drawn so not at all looking forward to this.
All that said, Kiya weighed in at 30.5lbs and 38.8 inches tall. My string bean is sporting a dark green cast and doing great. Yesterday was rough. She didn't come out of anesthesia as well as she did last time so she was CRABBY. But we pushed forward and were headed home by 12:30ish. She watched more episodes of Olivia than I care to think about but she survived the day. She ate a little and slept great. I am so amazed by her constant resilience. She is amazing.
We were fortunate to meet sweet Lauren and her parents yesterday. It was nice to talk with another family. It was weird to offer support and advice as they are still new to this journey and I am used to being the new kid on the block. It was really strange but I was glad I could offer advice, tips and support.
So there you have it. We survived. We didn't get any straighter but we didn't get any worse so I will take it and move on. It's what we do.
No comments:
Post a Comment