I noticed and was aware of her "tilty head" and inability to rotate to the right from the very beginning. I immediately took steps to get her physical therapy through the county's early intervention program. The process is very bureaucratic and was taking way too long for me so I decided to take her to a chiropractor. I was happy with the treatment he was giving and believed it was helping.
In March, we were cleared for physical therapy and a therapist began visiting our home for 45 minutes once a week. Even though it was very expensive, I continued to take her to the chiropractor in addition to the PT. I still see a tilt in her head but have noticed dramatic improvements and thought we were well on our way to a straight neck and full rotation with no lasting issues.
A few weeks ago, our PT suggested we increase her therapy to twice a week and that she see an orthopaedist. "But I thought she was getting better", was my reply. She is, but apparently she could use some extra help and we needed to rule out any problems with her vertebrae. Since her original approval was only for 6 months, her increase in therapy was promptly denied. She has to be completely re-evaluated before any more services are approved.
I reluctantly made an appointment with the orthopaedist, thinking it was just a formality and we'd leave with nothing more then a directive to continue the course. So today, amidst a torrential downpour, we went in. X-rays were taken and it was determined that her anatomy was normal. I thought that would be it but then the doctor told me that prior to her turning 8 months, I need to think about a helmet. I was quite literally crushed and heartbroken. The avoidance of a helmet is the ENTIRE reason why I have made such an effort to get her services. The nail in the coffin was when the doctor told us to come back in two months. If there isn't dramatic improvement then she might have to get a TOT Collar.
Let me ask you, would you want to put this:
or this:
I know people decorate the helmets with stickers and glitter and stuff but that doesn't help. I'm at the point where pretty much nothing any one can say would make this better. And I actually get quite irritated when people make flippant remarks about it.
This is my baby
She's sweet, good natured, loves to snuggle, has a very charming and engaging smile and has BIG BLUE EYES with the most UNBELIEVABLY LONG EYELASHES. I literally have never had even the slightest encounter with anyone without them mentioning one or both. I know that if we get her a helmet, that is all people will see. And instead of hearing "Look at those eyes!" I'll get, "What's wrong with her head?" And don't even get me started on the collar. All I think of when I see it is the collars they put on dogs after they get fixed.
The next step is an evaluation with the helmet people. Their office is an hour away and I'm not at all looking forward to it. If it turns out she does need one, I'll be a mess. But I'm hoping I'll be able to come to terms with it, one way or another.
5 comments:
Oh my goodness -- I am so sorry! Dealing with any abnormality in your child is hard hard hard. And dealing with the bureaucracy to get them help can wear you down even faster. The emotions that you are feeling with Clara are remarkably similar to how I've felt throughout the process of getting Garrett help with his speech (and now, we've recently learned, a mild sensory disorder). I find myself battling with "the system" to get him the right help, and worrying how other children will treat him when they realize that he's not quite normal. I worry, too, about how this will affect him in the long run, especially during his elementary school years. The best reassurance I have, despite all the fears and frequent set backs, is that ultimately things will improve because I've proved to myself that I'm not the sort of mother who will sit idly by. And neither are you. Take comfort in that. The road will continue to be challenging, but even though you probably don't feel like it (I know I rarely do), you are up to the task. After all, your sweet baby girl, with her big blue eyes and long lovely eyelashes, is completely worth it. :)
Of course it is hard to come to grips with that. It's hard hearing there is something wrong with your angels. Trust me, I know! I've been hearing it their whole life. I still hear it and worry about their walking, talking, and mental process. But, I trust these people know what they are doing to help my boys and I pray for comfort. After that, there isn't much I can do but keep the faith that in the end, my boys will be okay (they have been blessed with that). It has been rough getting here, but I know it will be okay in the end.
Trust me, if people are only seeing her helmet or collar, then shame on them. I doubt your friends will be like that. She is really darn cute, and I will still see that.
I'm sorry to hear you ladies are having a rough time. I can't imagine she will like it either. Poor little thing. :( I'll be praying that her neck gets stronger within the time frame your doctor gave you.
Oh no Erin. I'm sorry your so upset and frustrated. Even the littlest issues are so stressful--it' gotta be killing you to be dealing with this. As a word of support, Jason wore a helmet. And in all honesty it wasn't a big deal--people still complemented him on how adorable he was, etc. I know that's not going to make you feel better,but just so you know you're not alone. And, always remember that you have the right to questions what the "professionals" tell you. If you see her improving and don't think she needs those--get a second opinion, or just say no. Go with your heart.
I just wanted to add on what Laura said. Jacob had a ton of breathing issued (you know) when he was really small. I kept taking him to this person at Children's. She wasn't a doctor and I kept asking when I would see one. Well, he had a sleep study and the results came back and this lady said he was practically dying every night. I was always devastated because I figured she knew what she was doing, but yet my little man wasn't getting any better. I went and got a second opinion at Johns Hopkins in Baltimore. Needless to say, he doesn't die every night, and he doesn't even have sleep apnea. My point is the same as your friend....go with your gut. If it doesn't seem right or you don't like the doctor, then switch.
I know how you feel. I was heartbroken about putting my baby girl into a full body brace. I was worried people would stare and wonder what was wrong with her. I worried that it would detract from how utterly adorable she was. It is hard, it really is. BUT, you need to keep perspective on this. Get a hold of yourself and make the best of the situation. Years from now, it won't matter that she wore a helmet or a collar. Sure, I avoided taking professional pictures during the year that Alyssa was held in perpetual frog legs but she's now swinging giants on the high bar! Perspective my dear! It could be so, so much worse!
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