Thankful

On Monday Nicholas and I went to see Dr. Standard to have his cast removed and made removable. We will be phasing it out over the next four weeks but the best part is that Nicholas could sleep without it on! Monday night I was just overwhelmed with joy watching him sleep all curled up and cozy.

As I suspected the sound of the cast being cut off was hard for Nicholas to take but he got through it. I was not able to go in with him for the x-rays because of the 4th child on the way but the tech was wonderful.

Dr. Standard and I discussed plans for the future which are always changing. Nicholas’ ankle will need further reconstruction but that might not be for a while and the rest of the plan is the same: supper knee surgery next summer or the summer after, growth plate staple at about 10, final lengthening about 14.  The ankle business will fall in here somewhere and possibly not till the lengthening surgery, so long as it stays stable.

It was great to see Nicholas’ leg and to touch it without any pins or wires in it. He was seriously excited to see it and feel it himself! Eight months later! Seems crazy to have been so long. It really was a happy visit to Sinai. It even ended with ice cream.

Today we are thankful for this process that has allowed Nicholas to keep his leg and for Dr. Standard and the entire Sinai staff including but not limited to Lee, Marilyn, Audra and including all cafeteria workers (Nicholas told me as we were leaving on Monday that everyone at Sinai is so nice). I am also particularly grateful that the 2nd lengthening is finished and thankful for the 11cm Nicholas has gained through this crazy/amazing/LONG process. We have a great boy and a great family.

Thanksgiving is a reminder of how much we have but it is also a reminder of what we have lost and although it is not fh related, my aunt Eileen died on March 10th of this year from breast cancer. I was fortunate enough to get to spend time with her knowing that there would be little time left and tell her how much she has meant to me and how much I loved her. I could not imagine my childhood without her and as a new mom she was a great support to me. She came with me to Nicholas’ first doctors appointment as a newborn. I was so scared and I needed someone there who I could lean. She was there when I asked if my boy would be able to walk, if he would be in pain, and many other scary questions that did not have so many answers at that time. I am so grateful to her for those moments and so many others. When we decided to go with limb lengthening she and my uncle Jack were the first ones to offer us financial help if we needed it. Because of her cancer treatments they knew all too well the toll medical expenses can take. Today and always I am so very grateful that I got to be her niece. She was the one of the greatest blessings of my life and one of the loves of my life and she will be in my heart forever.

And the ultimate in grateful moments came this morning when Nicholas climbed into my bed to wake me up and said “Mom it’s Thanksgiving and I am thankful for love and for you.”

Happy Thanksgiving

ICLL Testimonial is on line at http://www.limblength.org/body_rubin.cfm?id=3659

http://www.limblength.org/body_rubin.cfm?id=3659

I wrote it over the summer so of course things are different now but we are just as grateful to be able to take Nicholas to Dr. Standard as ever! His cast will hopefully come off on the 23rd of this month. Although he really is doing great in it. He has not complained about itchiness since the first few days and he has had no pain what so ever. He is all over the place. We even caught him on a friends top bunk! Of course we did not let him get down on his own but really I never thought he would even try to climb up in the big blue cast.

Apparently the fixator did not effect his school work one bit!

I had Nicholas’ parent teacher conference this week and it was better than I even could have hoped. Nicholas received the highest grade possible in EVERYTHING. Crazy! You would think missing 6 full days and some half days and having the fixator and cast might have an effect on his grades but it did not. His teacher seems really delighted with him. She ever said “he’s the kind of kid you’d like to take home” and “you’ve done a great job raising him”. Really it touched me so much. After 20 or so years of teaching I would not think she would want to take any kids home but she is amazing. I am so grateful that he has her. I had so much anxiety sending him to a new school in the fixator and it has all been fine. She even told me that none of the kids ever complained about the accommodations they had to make for Nicholas. They always had to go in the building last because he took longer and it took the class longer to get anywhere but still there was not one negative thing said about him or to him (so far as we know). I think we do not always give kids enough credit. They are so much more open and accepting than many adults are. Maybe 5 is just a good age. I don’t know. I just hope Nicholas continues to love school and have positive experiences.

After I came home I told him that his teacher said he did great but the best thing she said was that he always tries his best ( in fact she said he is determined). I made sure that he knew that is what is most important and not all the A’s. I am sure every report card wont be perfect and I just don’t want to set him up to feel bad about himself down the road. I would be proud of him no matter what because he has done his best despite some pretty distracting stuff going on. My boy amazes me everyday!