Unfortunately I heard what I knew I would hear.
Lily went from 23 degrees to 45.
We are going to brace her with a softer brace with pretty lax rules when she is home so she can roll around on the floor still.
Got rx to go back to wheelchair clinic, I called to schedule, but gal was out so I'll schedule that next week.
I just love this Dr. He is so wonderful and kind and caring.
He knew this was sad for me. Surgery is a definite, just not yet, but I'm sad. He said it is a neuro type of scoliosis and there isn't much to prevent it.
Her hip needs to be watched.
Her growing bigger is the enemy. This is so heart breaking on so many levels. We all say we don't want our kids to grow up, but when growing hinders the quality of your child's life, it is a whole different level.
I'd appreciate that pause button now.
The lump in my throat is big and invading. I have a lot to do right now. I have no time for tears. Action only. Cruise control set.
Oliver's tonsils are due to come out on Monday at 9am. He has been sick all week with yet again another acute case of tonsillitis. These things need to go and throw them away. He has been miserable all week and will be again all next week, but then I pray he will be better for good.
Oh and moving. Got the keys. Got the house. I should be happier, but so.much.to.do.
I will smile and pop the champagne when I am finally relaxing in the new place.
Keep us in your prayers please. I am stressed about a lot. I know I honor a good God and he will see us through all this, but the control freak in me is resisting his help.
Thanks friends for keeping up with us. Your comments mean so much to me, I love hearing I am not alone in this journey.
Lily was granted a Make A Wish some time last year. I can't tell you what we had for dinner last night so don't judge. I recently th...
Ever leave your room to take folded clothes to your daughters room, walk into that room and see that your son "fed" the guinea pig...
This was one of my most favorite jokes to tell as a kid. What did one tonsil say to the other tonsil? Hurry the Dr. is taking us out tonight...
Today is the one year anniversary of the scariest day/weeks of our lives. On this day, April 7th, last year Lily had her spinal fusion surge...
Lily suffers from CDKL5 disorder. No new news to all our friends and family, but it is June and this was our first time acknowledging June a...