We have been busy with a very full schedule. Selah started in a new preschool three weeks ago. The other preschool was good, but not the right fit for Selah. We began seeing her fall apart every day after school and have tantrums and fits of rage. It would last each day for about 2 hours until I could finally get her to take a nap and then she would wake up much happier. After talking with her therapist and knowing in my heart, we realized that the old school environment had too many similarities to orphanage life. I had hesitated in the beginning, but we decided to have her attend the school because we had hopes of getting some of her therapies through the school district. That didn't happen and I just didn't have the fight in me. It was a blessing in disguise, though, because the moment I walked into the front doors of her new preschool, I knew we had found home. The gals at the front couldn't have been more wonderful. They were so eager to love Selah and learn all they could to help her. We toured the school for a while and just loved the atmosphere. I was so thrilled to hear the Jesus music playing! Before we left the ladies prayed with Selah and it brought tears to my eyes. At the time, though, there wasn't an opening, but two days later we received a call saying that an opening was available! She has been flourishing in this environment! We are so happy for her and for us :-)
Four days out of the week, Selah has either speech, OT, PT, or swimming right after school. Wednesdays we head up to Phoenix Children's Hospital where she has back to back PT/PT therapy. It is a drive and makes for a very long day, but Selah and I both LOVE her therapists! It would be hard to change. Last week we also had a follow-up with the orthopedic doctor. Her spine has increased from a 32 degree curve, to a 50 degree curve in just four months. Not good news. I was expecting some progression, but not that much. The Marfan's Syndrome is responsible for the extreme progression. The doctor had her fitted for a brace that will hopefully stop the progression until she is at the right age to undergo surgery. We should get the brace next week. Pray that she adjusts to it well and isn't too extremely angry about it...and that it stops the progression. This week we also saw the ophthalmologist for another follow-up and instead of any improvement, her strabismus is getting worse. The Marfan's is again the culprit. The doctor explained that surgery would be necessary at some point and that it was up to us to chose now or later. He is a very well known doctor here and quite confident in his work! (Surprisingly, I actually liked this attitude!) We decided to have it done now. At least we can get something behind Selah in the medical arena. It is scheduled for November 4th. Next month we see the cardiologist again and will determine what meds Selah will take and if or how much her aortic stem is enlarging. I still have not got her into the dentist...I know she will completely fall apart at someone going into her mouth. Sensory-wise, it will be so traumatic. I can see all the decay and I know they will probably need to do a lot of work. Ugh! It amazes me how resilient and happy this little girl is despite all the poking and prodding done to her on a consistent basis! God has some mighty things planned for our little one! Our little fighter!
Emotionally, we have seen a tremendous improvement. We did decide to turn to some conservative medications which I was apprehensive about, but after seeing the dramatic change in her emotional composure and happiness, I knew it was the right thing to do. Her emotions had continued to be such high high highs immediately followed by low low LOWS. The swings left everyone emotionally exhausted. I had always felt like I was walking on eggshells because I couldn't always pick what would set her off...and helping her come up out of the low place was close to impossible. But for the grace of God! I don't know where we would be without Him as our rock. God has filled us with strength when we didn't know where it would come from. He has been there every step of the way. Now, though? We see the Selah we knew was in there. She still gets mad and pouts and has control issues. However, we get to play with and love on a happy, giggly, silly little girl so many more hours of the day. Seeing her smile and joy so much more throughout the day, makes my heart fill with happiness! This week she almost fell asleep in my arms...but then she realized what was happening and she jumped up and pushed me away. But it was HUGE progress!
|Selah loves her book time before bed!|