Friday, September 30, 2011

Busy Days

Where does the time go? It seems that when I get caught up on computer stuff, I fall behind in laundry, and when I get caught up in laundry,  I fall behind in all the other cleaning that needs to be done. This continues on and on sort of like the "If You Give a Mouse a Cookie" book! It is a funny sort of cycle that is a perfect representation of my life right now! I am always doing one thing to end up behind in another! That is what leads me back to posting nearly three weeks later! Oh well...for a season this is my life. Who knows what God has in store for the next season!

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!
The boys have finished the first quarter of school and will have two-and-a-half weeks off. Yippee! They both did great this quarter. Conferences were a joy and report cards were super! We are so proud of their hard work. They are both in basketball. Landon is on a recreational team which entails one practice and one game on Saturdays. Zach is on a traveling team which has two practices a week and two weekends a month of tournaments which usually entails four games over the weekend. Bryan and I have been splitting up for their games. Selah can handle one game well, but more than that is just not good for her. One of us stays home with Selah and the other heads to the games. We try to take turns so each of us see at least one of the games each weekend. Wednesday nights is church night. The youth programs at our church are outstanding. The boys LOVE going there. They do the homework without a complaint and amaze me with how they memorize their verses so easily! Memorizing anything has always been a weakness for me! Otherwise, they continue to be such wonderful big brothers. So often, I find myself in tears watching them love on their sister. God has given us so much grace in that area. I am so thankful for the way He prepared their hearts. They teach me many lessons along our journey!


  1. I love how you say that for a season this is your life... A beautiful way to put it and one that I will apply to think about my own current situation.

  2. Oh and we have been using the brushing technique with Rex for several weeks. Sometimes it relaxes him, but most of the time it just makes him giggle and squeal which is fine with me because laughter is great for all of us. Do you also use joint compressions and deep pressure massage on the limbs?

  3. WOW! You ARE busy:)! Praising God for the progress and that he brought Selah to just the right parents!:) LOVE you!