Timmy Short's Team

Timmy had a follow-up appointment at Shriner's Hospital on Thursday, January 15th.  We had a lot of X-rays of his spine and hips. After meeting with both Orthopedic Surgeons, they decided that it is time to operate.  However, he now needs surgery on both hips.  His right hip is 40% subluxed and his left hip (which has not been a concern before) is 35% subluxed.  He is in a great deal of pain most days; changing his diaper is hard on his legs and hips and he has decreased his scooting around the house.  He essentially has become more crippled over the past 6 months.  The subluxation in his lower extremities is even affecting his hands; they have become more spastic, which is very concerning.  He has always had very good use of his hands and arms, until recently.   

Just a brief history on Timmy...the most damage to his brain is in the motor and language areas as well as the hypothalamus (body temperature, hunger, thirst, water balance and sleep). There are many areas that he has learned different ways or compensations for these damaged areas plus there are many medical interventions that we can use when it doesn't work right.  We keep track of how much fluid and food he eats in a day between home and school to make sure he is getting adequate nutrition as his brain cannot regulate that.  There are sleep aids and medication to help in falling asleep, etc.  The way Timmy's body has been since he was born is tricky for him.  His legs are hypertonic (constantly in a flexed/extension state).  His core/midsection is hypotonic (very weak and low muscle tone).  While his upper body is normal strength.  He is considered a mixed-tone kiddo, and this creates difficulty for him in many areas; mobility, digestion, sleep, etc. Beginning at about 15 months old and continuing every 3-4 months, Timmy receives botox and phenol injections in his legs (from his ankles to his hamstrings all the up to his adductor muscles).  He is always put under general anesthesia as he is receiving anywhere from 18-40 shots total and the medicine (especially phenol) hurts.  

We have had great experience with these injections.  They have allowed him to use a supported walker with a harness and straps for short distances in school, transfer from his wheelchair to his school chair with minimal support and begin learning to go up stairs (he mastered going down stairs around age 6)...just turn on your belly, hands up and slide down!!

Over the past 4-6 months, walking in his walker has become very cumbersome and transferring is painful.  The last injections were at the end of November and there has been very little relief.  So it has been decided based on the severity of his hips and pain, that he will have both hips repaired.  

The official name of the procedure is bilateral varus shortening rotational femoral osteotomies along with bilateral adductor and flexor (IP) tenotomies. Essentilly...they are going to break the femur bone near the top where it meets into the hip socket and shorten each side by 1-2 centimeters and realign the bones into the correct place with plates and screws.  Then the adductors and flexors on each side are going to be lengthened to help relieve the extension in both legs.  

The surgery is approximately 4-6 hours and he will be in the hospital 3-5 days depending on how well he does and when they are able to take the epidural out based on his pain control.  His surgery is March 25th and the total expected recovery time is 3-6 months.  

That is the update from our world.  The girls are very worried and we are starting to gear up for hospital-world at home.  It's amazing to me every day, how much my 3 kids go through or face and how sweet and kind they are.  The girls are thrilled to give up their summer and mini-trips to take care of Timmy and pay for his medical expenses.  They see how hard he works and how much he adores them...we are blessed for these 3 miralces every day!  We are praying for a safe operation and speedy recovery for our angel!