We had a wonderful time back in IL for Thanksgiving. Everyone was overjoyed to see Keira running around, playing and being her old silly self. The last time my family saw her in person she was being discharged from the hospital and was not able to walk, crawl, stand or even sit unsupported. This visit home was also a little mini vacation for me and Naveen as we had ample adults ready and willing to play with Keira. We were able to get out of the house and have some much needed adult time to just catch up with each other. You would think living in the same house we would have a chance to talk but honestly after a full day with Keira, I am usually too exhausted to carry on a normal conversation :)
The highlight of the trip for me was to see how well Keira gets along with her cousins. I always worry that the distance will prevent them from being close but I have to say that Keira absolutely adores Aiden (and she thinks Colten is pretty cool too). She was more than eager to mimic anything that Aiden does, which now includes climbing up on furniture as well as trying to jump off of it. (We came home with a few bruises - this little one is fearless!)
The trip home went by way too quickly, and once we were back in San Francisco it was appointment after appointment. We are still going to Physical Therapy and Occupational Therapy, but the doctor thought that a Speech Evaluation would be a good idea to get a baseline for what Keira's normal speech is at this point in time. If she has an OMS relaps it could affect her speech so this is just a precaution. Anyone that has spent any time with Keira in the past month of two knows that she is ALWAYS talking. We also met with a Behavioral Therapist so that we can proactively help Keira manage her frustration and impulsiveness. While we hope that her behavior is just that of a normal 20 month old we have to be realistic and remember that part of this syndrome is that it affects mood and behavior. Naveen and I met with the BT and she also observed Keira in a "play observation". We will go back in January to talk about strategies that might help all of us. Friday blood draws are also still happening. The good news is Keira is buddies with the phlebotomist and does not even whine when we have to poke her. If only she could be the one to do her IV for the next treatment!
As much as possible, we are trying to let Keira be a normal little girl. We are still super sensitive to germs and probably will be for years to come. Luckily, we have all stayed healthy and we are hoping to keep it that way. Keira has gone back to Emy's house for a couple of days and loves being back with her friends. We would really like for her to get back into her routine which would include me going back to work in January. We are going to hold off on making this official until after her MRI (cancer follow up - has it really been almost 3 months!) and her 4th IVIg and Cyclophosphamide treatment, which is scheduled for the second week in January.
Our new life is beginning to normalize and that feels good.