Well… we are 😉
She got the tube placed July 31st. Today is August 24th. On July 31st she weighed 19lbs 12oz. Today?
Are you ready?
Are you sure?
TWENTY ONE POUNDS TWELVE OUNCES!!!! TWO WHOLE POUNDS IN TWENTY FOUR DAYS!!!
Yeah. That. IS AMAZING. Right? In and of itself it would be enough to make me want to scream from the roof tops (or type in all caps as it were 😉 ). However, that is only the very tip of the iceberg. Amidst all of the changing in her body, her life, her system there are so many other profound things taking place. So many things that we could have never imagined changing so drastically in such a short period of time.
The small amount of muscle relaxer they have put her on to help her stomach relax and digest has relaxed the rest of her body enough to where she has regained the ability to ‘tripod sit’ or sit with one hand on the floor. She had lost the ability to do that after she started getting stronger and more tense. Today she had an advanced technology appointment and sat up for a good five minutes while playing with her therapist.
Her vocalization has greatly increased. She still isn’t saying ‘words’ but her range of sound and frequency is WAY up. She makes happy noises when she wants something, fusses when she doesn’t get what she wants, and manages to convey what item amongst many she desires. (Sound like a typical 2 year old or what 😉 ). Her speech therapist said that it may be due to the muscle relaxer as well due to her muscles around her vocal cords relaxing enough to let the air pass through more easily.
Overall her clarity is intense. She has always been an observer but it is amazing to me how well she seems to take things in now. We think this is due to the most exciting change of them all…SHE IS NOT SEIZING! She had gotten to the point where she was having upwards of 60 seizures a day that lasted between 5 and 30 seconds. Knock on wood they have halted. She is finally getting all of her meds, she is hydrated, and she is not constantly stressed about what she is having to eat. She has always been so happy, but this happy? It’s a completely clear comprehending happy.
The last couple weeks have been hectic, a bit scattered and overwhelming, but definitely in the right direction. The only downfall has been Alyssa’s sleep. Her body is working a lot less so it’s an adjustment to figure out how much sleep she needs. She isn’t sleeping through the night every night right now and some nights she’s up for 3 hours at a time. Frustrating but I know we will find a balance. It’s a small price to pay for all the good that has come out of the last few weeks.
Tomorrow is her final appointment for the study drug. Busy day of blood work, EKG, and a couple hours at the GI office. I’ll admit I’m actually a bit sad I don’t get to see Ms. T as regularly. I always leave feeling a bit more grounded and ready to take on what’s coming. After that I need to find Alyssa a dentist, an occupational therapist, and get her on the physical therapy list. It’s nice to finally have the feeding off the table and have the presence of mind to get other things lined up. In addition, I was pretty apprehensive about pushing her to walk with the frequent seizing. The weights are beginning to lift, the pieces are falling into place, and all just in time to begin gearing up for early childhood classes in February!!
Today was the first day of school for Raina’s girls so we went out tonight to that glorious place where a kid can be a kid. Alyssa had a flipping blast! It was so great to watch her just enjoy herself and be able to ride on the rides and squeal with delight. Little by little I see more and more emerging from her. Each week it gets more exciting for us. She is literally growing overnight at this point and it is quite an astounding thing to watch!