This sweet little girl puts smiles on our faces and makes us laugh every day. Wherever we go, people comment on how beautiful her eyes are. She can be quite a sassy little thing, loves peek-a-boo, clapping, dancing, singing, smiling and is not a fan of being told “no”. Her little body has endured quite a bit in 15 months of life…and I just wanted to give an update on her.
As many of you already know, Miss J was born with bilateral clubfeet. You can read about that here and here. I haven’t blogged about it much, but every casting she had as an infant, she responded to so well and now she continues to wear her boots and bar at night with no trouble.
Let’s rewind a ways…way back in October of last year when we still lived in Ohio, we asked her orthopedist about her neck, because no matter what we tried, nothing seemed to help her turn to the left. (We actually noticed this problem right after she was born while she was in the NICU…but we were told to wait and she would “outgrow it”.) He agreed that she seemed very stiff and that her head was starting to become flat on the right side causing her forehead to push out as well. He diagnosed her with torticollis. He gave us prescriptions for Physical Therapy as well as a referral to see neurologist who specialized in cranial head shape. The specialist didn’t see any other concerns besides the fact that she was very stiff and tight and gave us a prescription for a cranial band (helmet) and highly recommended Physical Therapy.
We’ve had experience with torticollis before…our oldest son was born with it due to his position/lack of space during pregnancy. His was not as severe however and did not need physical therapy. He did however, get his helmet too late and we didn’t get very good results from it. So this time around, we knew time was of the utmost importance, and after we moved to KC, I got her set up with a Physical Therapist. That was Thanksgiving of last year. She did great and responded really well for a couple of months. She started rolling over once the boots and bar came off during the day…that was in January. Our PT suggested we go ahead and consult with the helmet people (orthotist) and also consult with an orthopedist who specializes in botox injections for torticollis patients to hear what his thoughts were.
Back in late January, she got her helmet and at night when she had her boots and bar on, she looked like a little snowboarder 🙂 We kept going with the PT and saw the orthopedist in late February right before we moved out of the rental house. He said he believed she would benefit greatly from botox but he likes to try everything else before going ahead with it. He recommended we start massaging her at home using lavender essential oils as well as taking her to a pediatric chiropractor. We scheduled her botox injections for July 1st and said we would get busy trying the new things. He said she definitely needs to start progressing motor skill wise and her stiffness does not help her at all. At that point she could roll over one direction and sit with assistance but that’s about it. He said it is solely because of her torticollis and clubfeet working together to cause what are called “muscle contractures”. She was not behind in her mental capacity to do what her body needs/wants to do…it’s that her body wasn’t cooperating.
Now…I’ll be honest. The thought of taking my baby to chiropractor frightened me a little. I knew how my chiropractor adjusted me…how do they do that with a baby?! I decided to at least make an appointment to check it out and ask questions. I was pleasantly surprised by our experience at the chiropractor. She is so gentle, I can’t even tell she’s adjusting her. She also agreed that Miss J is trying so hard to do what she wants/needs, but her body is just too darn tight. After her first couple of adjustments (back in the beginning of April) we started to see HUGE improvements. She started rolling over and pushing up on her hands and knees. She started sitting independently. It was pretty amazing. So during the spring she was seeing her PT once a month, chiropractor every week or every other, and still had the helmet on.
We went back to her orthopedist at the beginning of June and he was also impressed with her progress and we decided to cancel the Botox injection procedure and keep one on the books for late October. He was concerned that she wasn’t getting to a sit position all by herself however, and said if that doesn’t happen soon, he would absolutely go ahead with the Botox. Well, Miss J doesn’t like to disappoint, so the next week she started doing just that 🙂
The month of June Miss J got rid of her helmet as she had reached 85% improvement of her head shape and we were very pleased with the results. She stopped seeing her PT because she was on maternity leave, but we continued with the chiropractor every other week.
Torticollis is tricky and I think theres a stigma out there that babies get flat spots on their heads because their parents just lay them on the floor and then don’t play with them/work with them or give them the tummy time they need. I had to battle my thoughts every time I took her out in public with her helmet on because I “knew” that people were thinking I neglected her. She’s got a flat spot because of my lack of working with her. But I am here to tell you, this is just not the case. Miss J had so much tummy time, but her poor neck was so stiff and weak that it took months for her to lift up her head correctly. I can’t tell you how many doctors told us “oh just put pictures on the wall/face her this direction in her crib/make sure there’s nothing interesting to look at the way she tends to look/give her toys on this side only….” It hurts to hear over and over. We aren’t stupid. We do ALL those things and more. My older two even know not to talk to Miss J on her right side, they always talk to her on her left side. What I wanted so badly to tell these doctors was “if she CAN’T look to the left than no matter what I do with her toys, pictures, and in her bed….she will continue to stare at the blank wall!!!” And I will tell you that after talking at length with her chiropractor, she came to the conclusion that yes her clubfeet play into the muscle tightness…but because of how Miss J was positioned during pregnancy, that is was her neck has so much trouble. And looking back to my ultrasounds, I can see it. Her head was wedged down into my pelvis, her face was toward my spine, but her body was twisted. And because she had little room (twin problems!!) and at the end had little fluid around her, she stayed that way. So if you ever see a baby with a flat spot on her head or a helmet to fix the flat…please do not assume it is due to neglect. There are hundreds of well loved infants who are looked after with the utmost care who get flat spots. I’m not sure this time last year I could have said that, because even back when my oldest had his helmet, I felt it WAS my fault. I wasn’t doing enough tummy time, I didn’t have the right toys to get his/her attention to look the other way, a few times I did the stretches 3 times a day instead of 5 times a day…just be aware that the mom with a baby who has a helmet might also be carrying around a lot of guilt and/or doubt that she didn’t do enough…even though she did.
She made huge improvements with PT and chiropractic care. She will look to the left now, but uses her body to turn and won’t turn only her head. She still tilts her head when sitting, especially if she’s teething, extra tired, or not feeling well. (Like I said, torticollis is tricky. It can be better and then she gets an ear infection and she is tilting her head again.) We’ve upped her chiropractic appointments to once a week because she’s climbing on everything which means she’s falling a lot therefore needing to be re-adjusted! She’s also getting a lot of teeth which seems to effect how she holds her head.
We saw her orthopedist at the beginning of the month and after much discussion, we decided to go ahead with the injections on the 28th. (Botox was originally designed/created for this very purpose, relaxing the muscles in Cerebal Palsy, stroke, and torticollis patients so that then with increased PT the once previously tight muscles could be worked with while relaxed and then be strengthened.) We keep hearing/reading that a lot of kids need multiple injections….we are praying Miss J will respond very will and will not require additional treatments. She will be given oral medication to relax her and then gas to sedate her for the procedure. The injections will be given in her neck, one shoulder, lower back, and calf muscles.
There of course is always risk with any kind of medical procedure. We definitely have given this a lot of prayer, research and time and haven’t rushed into it. We do feel the Lord has opened the doors for it to be done right now…but I can’t say I’m not a little disappointed. We really worked hard to avoid the Botox. However, we also do not want this to effect her later in life. If this torticollis could in fact be a lifelong problem, we want to do everything we can to help her now. When she’s 16 and learning to drive, looking to the left will be an important thing for her to do without discomfort.
So there it is…on Friday morning I will be taking my little sweet pea to the hospital for the Botox injections. I know it goes without saying, but we would covet your prayers for her little body to respond well, that the doctor would arrive well rested and ready to preform the procedure with steady hands and the Lord would be present in that room when I cannot be right by her side. Also for her recovery and to respond well to the sedatives. Thank you in advance for your prayers and I hope to post something about how it goes on Friday.
Hugs to all of you friends. We appreciate your love and support!