Update on LittleK

I've had several people ask me about what's going on with LittleK since our adventure back in November with her inpatient stay at Children's in Dallas due to neuro issues. I figured that I would update...That and I need to do a 2 year old update.

That's right, LittleK is 2! She is 20lbs6oz and 31.5in.

While we do not have anymore answers and do not know much more than we did when she was discharged, we keep moving forward. We are in constant contact with the doctors- her pedi psych, her pedi nuero, and her local pedi. We go back to the nuero in Dallas in late March. Hopefully we will get some more answers and possibly a diagnosis then.

We have transitioned out of Early Childhood Intervention into private therapy at a local therapy center. We are continuing speech and occupational, and we have recently picked up physical. We are going once a week for the month of January until her deductible is met. Once that is met, we will transition back to twice a week.

LittleK still has a long ways to go, but has come so far. While her vocabulary has not increased, her "talking" has. She is figuring out ways to communicate with us. It is a learning process still for her and us. There are still days where we all end up in tears due to frustration because she can't tell us what she wants/needs, and C and I can't figure it out. C built her a spinning board so we can do spinning therapy at home, which her OT suggested we do. Some days she likes it, others not so much.

Our newest concern is that at times, her hands/feet/lips get really cold and turn blue. Her pedi did lab work to check her levels since being on the Topamax for her seizures. Those came back normal so they have called the nuero in Dallas to see what our next step is. We are wanting to see if it is seizure related or medication related. We are not sure at this time if any further testing is needed or when/where that will be done if needed.

*If you can, check out the GoFund Me link on the right and help us out*

No comments: