Testing 1,2,3

The first day of Physical Therapy I pulled into the All Childrens Hospital parking gargage a nervous wreck. What were these people going to do to my baby? Was it going to hurt, would she cry, could they fix it? All these questions were pulsing through my head as I headed into the elevator, Masons tiny fingers wrapped around one hand and the awkwardly balanced baby carrier on the other. The bell rang and we stepped off onto a brightly lit corridor. There were lions and giraffes painted on the walls, I guess to help put the children at ease. I looked at Mason and she looked happy, I however was a ball of twisted nerves. And Cams, well she was pretty much how she still is today, completely unaware that anything bad may happen. She just sat there strapped in her carrier, looking up at dangling plushies hanging from the handle. We were greeted at the front desk by a friendly girl, who took us back to the therapy room. WOW! It was much bigger than I had anticipated and much brighter. And not nearly as "scary" as I thought it would be. There were colorful foam wedges for stretching and climbing. Deep blue squishy floor mats and lots and lots of toys. Two other children were getting therapy at that time and neither one appeared fearful or in pain. Okay, okay, this may be alright. Our P.T. was Lori, a woman in her thirties with big eyes and an even bigger smile. She was very sensitive to the situation, it being our first experience with any kind of therapy and took lots of time to explain torticollis to me and what things she would be doing with Camryn to help correct it. There would be lots and lots of stretching, strategic placement of Camryns favorite toys, and if those didn't take care of it, then possibly a plastic tubing "collar" to be worn each day. But hopefully we could avoid the whole collar thing. I peeled Cams out of the carrier and handed her over to Lori. And for the first few minutes she was fine, no worries. Then Lori started to gently stretch her neck and you would have thought she had told her my milk dried up because Camryn started screaming and crying and it was just horrible! My first instinct was to pluck my baby from Lori's arms and save her from this torture, but Lori, having done this job for quite a while, assured me the stretching was not hurting Camryn in any way. Was it uncomfortable?Possibly. Scary? Sure. But painful? No, it was just new and eventually she would get used to it. I hated watching her cry like that but I also hated the thought of her head always being titlted to the left more, so I put my trust in Lori and watched her every move, as I would be doing these stretches with her at home as well. Great!
Each week got a little easier, but unfortunately her tilt remained. Even though I was diligently stretching her twice a day as directed,placing all her toys to her left so she would be forced to turn in that direction,even holdhing her with her head stretched out on my arm while while her legs dangled free, her tilt was not improving, in fact it looked just as it had the first day of therapy. Lori was perplexed and though she knew I was so petrified of it, she suggested we start using the TOT collar. Crap! It's hard to explain what a TOT collar is, but I guess it could best be described as a clear rubber double layer "choker" held together by a plastic stint. It fit tight around her neck and was held together with velcro. It held her head up straight, giving her neck no leeway what-so-ever and for an hour each day she looked like a really little member of one of those African tribes you see on National Geographic with all those rings around their necks. She hated every minute of it and I hated it even more. She would scream and try to wriggle away as I fit it around her, but if this was going to help my dauhgter be a "normal" little girl, then I would do whatever it took.
By nowI we'd been in PT for about  3 months and  Camryn was seven months old. Mason was two and a half and needless to say I was a bit busy. When we first began therapy, Lori warned me that when a child has torticollis or any physical challenge for that matter, the rest of their development may be temporarily delayed while they work to correct the issue. But not to worry, it's perfectly normal and with time they will eventually catch up with their peers. Okay, makes sense. So is that why she's not babbling or rolling over? More than likely she had said. Don't worry she said,she's just fine.
So along with the stretching and the collar sessions, Camryn aslo seemed to be constantly battling a cold. Her nose was an endless stream of mucus and at night she would breathe heavy as if very congested. A trip to the pediatrician would always confirm that she did in deed have another cold and that it had turned into an ear infection AGAIN! Ear infections and Camryn got along famously, so much so , they were rarely without each other. She was on a constant antibiotic regimen which would clear things up for a month or so and then the nose would start running again. This poor child with her tilted head and plugged up ears.But kids get ear infections right? And what else would you expect when going to a hospital every week for therapy?  Hospital is just a fancy word for a giant germ hotel. I really didn't think too much of it, though I did keep in the back of my head that Mason was never this sick as a baby and she also came to therapy with us yet managed to stay well. Hmmmmmm. Well, the Dr. doesn't seemed alarmed and he is a doctor, so who am I to second guess?
At about 9 months of age, Camryn was still as tilted as Pisa and miles behind other babies her age. I questioned Lori again, "Why isn't she pushing up on her hands or making any sounds?" Again, my worries were met with assurances that all was well and not to rush things, in two years she will be exactly where she needs to be. Okayyyyy, if you say so. I have to say I really liked Lori. As a young mom at home all day with my kids, I was desperate for adult interaction, so I actually looked forward to therapy days, knowing I would be talking real words to someone my height! It was pretty pathetic, but you know we have all been there. And while Lori was highly experienced and extremely knowledgeable in her field, her field was Physical Therapy, not pediatric medicine of any kind, so for me to expect her to interact with my child twice a week for 30 minutes and be able to pick up that she has a neurological disorder was asking a bit much. But you know, for the longest time after Camryn's diagnosis I blamed her for not taking my concerns more seriously. It was only in the past several years that I realized, this girl was not the reason my child went undiagnosed for so long. Just like every other medical professional, she was going by the numbers and when you run the numbers, if you have a child who needs therapy that is not meeting their milestones on schedule, nine times out of ten it's because of the issue needing therapy.How was she to know she had "one in ten" as a patient?
Now in the meantime, I was also voicing my concerns to our pediatrician, who was a family friend. He was more of a friend from the past of my brothers, so he was not around Camryn outside of the office. He only saw her in fifteen minute increments and knew of her what I told him. By looking at her, her could tell she had Torticollis and that she was delayed in her development. But just as Lori had told me, that was normal in this situation. He was such a sweet guy and early in his career. It was 2003-2004 at this time and as I mentioned before, Autism was not really a word you heard much. I was a lot more reserved back then, a people pleaser and anti boat rocker. I was so worried about Camryn, but was looking into the face of a man who had spent years and years at medical school learning way more than I could ever hope to so if he says Cam's is ok, then she must be ok. But you know that little knot in your stomach, the one that twists and turns when something doesn't feel right? Well, it had been twisting and turning in my belly for months, pushing me to keep going, keep asking. I was embarrassed to ask the doctor to send us to a specialist. Embarrassed! Can you believe that? I am actually embarrassed at my embarrassment now because that was my baby and I knew something was wrong and I was too scared of what someone else might think if I asked for further testing. I'm saying this though because I know that a lot of other parents have been in or may be in this situation and I want them to know it's 100 percent okay to question the doctor, always.  I mustered up the courage to ask for a referral about her neck. We were sent to an orthopedic surgeon who ordered a CT scan. She was scanned, results were read and...fine. Nothing there. I was so glad to hear that her neck was structurally sound but frustrated at the thought of having to go back to the drawing board when it came to the cause of her delays. Back at the pediatricians, I sat red faced in the chair as I asked him to send us to someone else. Who did he suggest we see next to figure out if something was going on? We were sent to a genetic specialist who stripped Camryn down to her diaper, took a Polaroid of her and ordered bloodwork, bone scans and a urinalysis. The testing was intense and again THANK YOU ANNA for taking the day off work and holding my hand. Brads job did not allow for him to miss work,so Anna came with me. It was horrible. The bone density scan was basically an X-Ray of every bone in her body and in case you're wondering, not so pleasant. There were two technicians in the room standing around a big examining table, which was actually an X-Ray machine. Camryn was to lay down flat on this cold, metal surface and stay completely still while they take scan, after scan after scan. Now, Camryn laying flat didn't happen easily. She just didn't like to do it, so that was the first challenge. Then Camryn laying still. I don't think I even need to explain. And the techs? I'm sure they were lovely girls, but I did not appreciate their lack of empathy for my little girl crying and scared on the table.They seemed annoyed. Camryn has always been abnormally strong, so when she doesn't want to do something, look out. It took the three of us to hold her down while the other tech took the  X-Ray. We would get her contorted just the right way and then she would move, so we'd have to do it again. And all the time we were wearing those lovely lead aprons, which made it feel like we were doing it all under water. Oh, it was absolutely horrid! It took about an hour of pure hell and finally the last bone was scanned.Thank God! Off to the next test, the EKG. This one was almost comical. Here is my daughter, not quite a year old, obviously delayed in all areas including communication, and the tech sits her on the exam table, tells her to take off her shirt and lay still while she attaches the monitors to her bare skin. Yeah right! I had to sit behind Camryn on the lovely butcher paper covered mat and pull each of her hands behind her back so she wouldn't try to grab the monitors off AND keep her still. Haaa! Of course she wasn't holding still. She was wriggling like a fish caught in a net, crying and screaming and the technician from Planet Oblivion was telling her "Stay still! I can't run this test if you don't stay still!" Anna and I are just looking at each other thinking "What in the hell is this woman smoking?" Did you not read the chart woman? This child is delayed. Meaning not on age level. Meaning she is not going to  follow your directions, okay? It was a complete nightmare and in the end she called the doctor and had him come in and sign off on the best reading she could get. I was a sweaty, wrinkled mess and Camryn's body was covered in red splotches and soaked from tears and we still had two more tests to go! Next was bloodwork, which I just knew was going to be awful, but surprisingly, it was one of the better tests.Of course she did not like being pricked with a needle, but it was quick and the phlebotomist was much more congenial than her co-workers. Finally, the last test of the day, the one I hadn't even thought to dread, the urinalysis. I don't know why it never crossed my mind that they would need to collect urine from my daughter who was still in diapers and would not understand to pee on command leaving them no choice but to catherize her. I had never had a catheter at that time but since have and I am soooo sorry Camryn. I knew enough to know it would be uncomfortable because putting a clothespin on your urethra rarely ends in laughter and good times. But I had no idea it would be such an unpleasant test. That techinician was the sweetest girl, thank goodness and I made sure to tell her how much I appreciated her patience and understanding. We took off Camryn's diaper and she began to insert the catheter which as you can imagine, caused Camryn to kick and scream. She somehow managed to get it in place and then...we waited. We layed her on the exam bed and held her hands, played pat-a-cake and anything else we could do to keep her from taking off her diaper and ripping out the catheter. It took about a good 30 minutes before she "voided" as they say in medical lingo. Whew! Done! Completely mentally and physically drained, I got Camryn dressed, strapped in her stroller and Anna and I took the elevator down to the lobby. When the doors opened, that part of the hospital was actually closed! That's how long we had been there. And if I thought I was tired, my poor baby! She was beat! Her cheeks were red, her hair in sweaty strands, her eyes watery and bloodshot,this day had taken everything she had. I hugged Anna goodbye in the parking lot and thanked her for being such an amazing friend. As I loaded Cams into her carseat I looked at her innocent little face and thought "She has no idea why her mother just put her through hell". I got on the highway and headed home, not knowing anymore about Camryns delays then when I got there and knowing there was nothing more I could do now, but wait.