Uphill, Downhill and the Bumps In Between.

This will be an interesting post since my thoughts are very jumbled...so much to think about. Sam is still on that rollercoaster ride called Perthes.

Last week we went to the medical rehab doctor to have him take a look at Sam's gait. I just "sigh" when I see how much his gait has changed. A part of me screams and cries thinking of the hours I had already put in to get that gait as beautiful as it once was. Before Perthes Sam suffered a brain injury that caused right side weakness. We had to do deep pressure, different temperature compresses and other strength exercises to send a message to the brain that he had a right arm and right leg and he needed to use them. We worked for hours on getting him to army crawl, then crawl with a cross pattern, then going up and down the stairs in a beautiful cross pattern, strengthening and stabilizing the muscles involved. We worked on his walk, his jog and then his run. He did these well and I felt we had accomplished so much.

And then came Perthes....

Sam now has a significant leg length difference, his left leg is quite a few inches shorter than his right leg so he walks with a prominent limp unless he toes the left leg, meaning he walks on his toes instead of his foot. His spine now curves to the right to take any additional weight off the left hip. His arms and legs no longer work in a beautiful cross pattern but instead flop and twist in different patterns. The rehab doctor watched Sam walk and immediately suggested a gait study.

Gait analysis is the systematic study of human motion, using the eye and the brain of observers, augmented by instrumentation for measuring body movements, body mechanics, and the activity of the muscles.^[1] Gait analysis is used to assess, plan, and treat individuals with conditions affecting their ability to walk. It is also commonly used in sports biomechanics to help athletes run more efficiently and to identify posture-related or movement-related problems in people with injuries.

The study encompasses quantification, i.e. introduction and analysis of measurable parameters of gaits, as well as interpretation, i.e. drawing various conclusions.

The rehab doctor told me it would take 30 days to put together a team. I don't think it is good news that the team is assembled and ready for Sam on May 25th. This appointment will be 3 to 4 hours long. A long day for both Sam and I, prayers and good wishes would be appreciated. The gait analysis will help them determine Sam's PT requirements and what type of orthotic lift he will need until he can have leg length surgery. Yep, we are now up to at least two more surgeries.

This week we headed to the ophthalmologist to have his eyes checked. Sam has been holding his Ipad and books closer to his face and when he reads he begins to do extreme yawning. This has never been an extremely well liked appointment by Sam which is probably why he hasn't been checked since 2008. From the time we left the house to the moment we pulled up to the office in Sheboygan I prayed for Sam to be calm and cooperate. I rubbed my angel worry stone until it was warm in my hand. Sam asked to use his wheelchair to go into the building so I accommodated his request. He went in happily enough and told me he needed to use the bathroom. Not wanting to have any further physical discomfort hamper the visit we took care of that request too. When it came time to enter the room his wheelchair would not fit through the doorway so he had to walk to the chair. Still things are going good. He asks for his Ipad while the nurse asks me some questions. Now it is time to do the testing. For any of you that don't know Sam...Sam hates being tested. HATES IT!!!

So I begin praying and rubbing my worry stone again. The nurse starts with the close reading test and Sam cooperates. His close vision is better than 20/20. A quick "Thank you Lord" is uttered under my breath. Now she has him sit in the chair to do the far vision. Thankfully this is an office that knows how to deal with special needs children. They wait patiently for his answer. They ask him to look again instead of assuming he doesn't know and they make the testing quick and effortless. They also test his depth perception and if he is color blind. Sam passes all the tests with flying colors.

Now comes the fun part. Time to dilate his eyes. Thankfully they have the dilation spray instead of wrestling to get drops in. It takes a couple of sprays but they manage to make it happen. Funny thing...Sam's eyes stayed dilated for more than 24 hours after the appointment.

(Hey Rebecca, it must be a Down syndrome thing!!!) This is a standing joke between Rebecca and I. When our boys were younger and we were more naive we equated almost everything they did to Down syndrome instead of boys just being boys.

The doctor came in and asked Sam for the third time to sit in the chair for the final examination. Sam's patience was running out especially after they sprayed nasty stuff in his eyes. He yelled "NO" and stamped his foot. The doctor gave me one of those "Aren't you going to address that" looks. I asked Sam, "Are you done now, do you feel better?". He said "Yesss". I said "Good now hop up in that chair so we can get all done." He did and my inner voice wanted to scream at the doctor saying "Be happy, that could have been his attitude through the entire appointment...in our lives...we pick our battles." Sam cooperated and then confirmed that we were "All done, go home." The doctor told me everything looked good and Sam's eyes are healthy. I loaded Sam into his wheelchair and wheeled him out to the car. After loading the wheelchair I got in the car and gave Sam a "high five" and told him he did great. I then sighed, yelled out "Hallelujah, that's over, Thank You God" and Sam answered with "Amen".

On Friday we will be back at Children's for his orthopedic check up and X-rays. I'm not holding my breath that I will see bone growth...I'm just praying it doesn't look worse. Please include Sam in your prayers and let's keep him going uphill.

Next week Sam will have his audiology appointment and I'm hoping we will be closer to getting a personal FM system to use with his hearing aid. This would allow me to talk to Sam directly through his hearing aid which would be a much more direct approach. No background noise and the ability to hear Mom loud and clear. Sam still struggles with the concept of "listening". Oh, who am I kidding, all the males in my household have issues with listening. I know they can hear but listening seems to be an inherited weakness. Sam will have a tympanogram and full hearing evaluation. I'm hoping I don't rub that angel right out of my worry stone.

With all of this going on I need to make some decisions on Sam's continued interaction with the public school, continue implementing his home program, work in his catechism lessons and try to enjoy some free, fun time with a little boy that has been through so much and still has many challenges in his future.

It's funny how you think "Oh, I could never go through that" or "I'm so busy already that I can't handle anything else". And then life happens...and you freak out and then re-prioritize, re-evaluate, scream, cry, pray, pick yourself back up again and somehow, someway make it all work.

We must accept life for what it actually is - a challenge to our quality without which we should never know of what stuff we are made, or grow to our full stature.
Robert Louis Stevenson