A Silver Lining

New Years Eve is here and with it begins our month of adventures at +Children's Hospital-the best Hospital in the world...in the world. We are so grateful for the amazing care we receive at this Hospital. I never thought I would enter the lobby to a hospital and actually feel a sense of comfort. Although I spend the entire drive to our appointments with my stomach in my throat, entering the lobby of the Hospital always brings me a sense of comfort. It is similar to driving home and turning the corner onto your street and feeling that sense of complete relaxation, like you are right where you are meant to be. That "ahhh, I am home" feeling. When I enter the lobby of Children's Hospital and hear the familiar “dinging” of the balls chiming in the display and take in the scent of Au Bon Pain, I just breath a little easier . The funny thing is I think Kalvin experiences this same sense of comfort. The silver lining in having a congenital issue is it is all you know and therefore doctors are very familiar to you and not someone you fear. We have the absolute best doctors and nurses and staff members at Children's and for that we all feel truly blessed.

Kalvin is having his cath procedure on January 16th. It was not planned, at his annual cardiology visit they decided it was necessary. It is time to widen his coarc again, but this time most likely with a stent. The cath also provides the doctors with a great opportunity to get a clear look at his heart and how it is functioning. They will also take this opportunity to get a close look at his his pulmonary artery and decide if they should widen it as well while they are "in there".

Prior to the scheduling of the cath, Kalvin had his annual orthopedic visit scheduled for January 15th so we moved it to December 31st! We also have his 3 year IEP (Individual Education Plan) review at school in January which brings us to Children’s Developmental Center a few times in January as well. And for the finale…braces on his teeth! The braces are to prevent a jaw issue from worsening until they feel he can tolerate further treatment. We postponed the application of the braces as long as possible-having no idea January would be chalked full of doctor visits and procedures! Kalvin will be a new little man come February!

We kicked the visits off with the trip to the orthopedic. We were thinking this visit would be easy peasy and pain free, but Kal is really worked up about it. We were hoping to get him fitted for a shoe lift. His left leg was damaged in the cath lab when he was 3 months old while they were trying to widen his coarc. His left leg now measures about 3.8 cm shorter than his right. The muscle mass in the left leg is also considerably less than in his right-about 1 inch in diameter smaller in his thigh and same in his calf. He doesn't want anyone to see the lift in his sneaker and is concerned it may accidently fall out of his sneaker when he takes it off. Funny, I never really know what is going to trigger anxiety in him the most. So while I am sitting back thinking this is the easy visit of the month, Kal is completely wound up and panicked about this lift.

Kal started commenting that he could really notice the difference in the length of his legs-he felt a bit lop sided he said. It was then that I actually decided we should try a shoe lift. I was thinking it would be most helpful with skiing and skating. The doctor says they don’t find lifts to be too effective unless the discrepancy is over 2 inches, but we all figured it couldn't hurt. So we will give the shoe lift a try. We will be fitted for the lift on January 15th-yet another visit scheduled for January!

The X-Rays went smoothly thanks to the wonderful technician. The staff at Children's is amazing...have I said that? You can see in the pictures he is totally relaxed; although, he would not be happy if he knew I published these pictures as he was trying to delete them from my phone earlier today!

The visit with the doctor was a little alarming. We explained our reasons for wanting a shoe lift. My husband had taken this video of Kal ice skating and we showed the doctor so he could see how limited the use of his left leg is at times.

The doctor then completed a strength analysis of his legs and concluded that he was very concerned about his left leg. “While he looks completely normal, there is something terribly wrong with his left leg,” he stated.

Uhmmm, yes, we have been telling you this for 5 years now-I was thinking, but did not speak. Just sat there with the wind knocked out of me. What did he just say? We are just here for a lift. Wait. This is suppose to the easy visit, now we are looking at an issue? Uughhh. We have often sat in the waiting area of Children’s Orthopedic Department feeling almost selfish and silly. There are lots of children waiting to see the good doctor with many more visible issues than Kal has. I guess that is one reason we never really pushed for further treatment of his leg. We just pointed out the weakness to the doctor and left it all up to him. Perhaps we were just “blocking out” the severity of his leg weakness. We were very willing to take the news that there was nothing else they could do right now and move on. We are getting very good at “blocking” things out. Putting the blinders on. It is a great survival mechanism at times.

So the day has arrived when we need to do more for his leg. The good doctor ordered an additional weekly PT session to focus on the left leg and see if it is possible to build the muscle mass in it. Kal has been going to PT since he was three, but this is the first time we will be adding a session outside of the school system. We will come back in 6 months and check the leg strength and see if we have made any progress. The doctor also put an “order” in with the cath lab to have them check the blood flow in both legs during the upcoming cath lab.

The leg length discrepancy will be addressed only if the discrepancy becomes greater. The doctor has explained that they can determine the growth capacity of the shorter leg and stop the growth in the good leg when it reaches the capacity of the short leg. They will do this in surgery by inserting a pin in the longer leg. Amazing.

I am having trouble getting this whole visit out of my head. I am not sure why. I guess it is the guilt and feeling that we should have stressed the weakness of this leg when he was younger. Maybe if we placed more of an emphasis on the difference in the muscle mass instead of focusing on the length discrepancy, it would have been addressed. It is hard sometimes to know when you are being a good advocate for your child or a paranoid parent. I guess I will just block these thoughts out and move forward.

We now have Monday, January 7th to look forward to. Our next stop at Children’s Hospital this month! It is a good thing Kal and I feel so comfortable there…in the lobby with the sound of chiming balls and the aroma of fresh baked goods coming from Au Bon Pain!

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