Most of my posts are funny and tongue-in-cheek. I'm not feeling funny OR tongue-in-cheeky, so I almost didn't post this. Truth is, while most of "Mommy-hood" is insanely crazy, but ridiculously rewarding and entertaining, it's not always that way. As we go through the different stages, most of the time, we do what we do because it's what we think is the best way for survival. We don't intentionally mean any harm and always want to do what's best for our family, but sometimes that just isn't good enough. That sucks.
As mentioned before, BG was a colicky mess of a baby. She hated the car, she hated the swing, she hated when she wasn't swaddled, she hated being held, she hated being fed, she hated tummy time (hate doesn't even to begin to justify how she felt about that). Basically, she hated to be awake. She wanted a swaddle to the point her eyeballs were practically popping out of her head, a loud noisy place (usually the kitchen under the exhaust fan with the dishwasher running) and in her bouncy seat. When she slept, I let her sleep. I knew better than to awake the beast. I didn't force tummy time too much because KT hated it too. They both had bad reflux. KT's back of her head was pretty flat for a few months and I was always concerned that it was too flat and everyone said "she'll be fine, it's not that bad." She was fine. By the time she was 6 months, her head was fine and she was moving and grooving. The reflux was gone (for the most part). I figured we'd have the same this time around too. I didn't stress. I had too many other things to stress about.
Around 2 months (probably before), I noticed that BG's left shoulder was always hiked up to her left ear. She always slept with her head tilted to the side (it looked as if a rubber band connected her ear and shoulder). Whenever I did force her and torture her with tummy time, she had an awkward position that I just
knew was not right. Her pediatrician said, "she may have some mild torticollis, but by the time she's here for her 4 month appointment, you'll never know." I told her that I had been trying to feed her from the other side and position her differently and try to get her tummy time...all the stuff that I did with KT and that I saw online when researching torticollis. She assured me all was well and to keep that up. She said that I could seek PT if I wanted, but she didn't feel as though it was necessary. In my head, I thought that I was probably overreacting and dragging KT around to PT appts in winter while BK was on the road was just going to be more stressful for all of us involved. I'd give it some time and try to fix things on my own.
At her 4 month appt, I brought it up again. In the meantime, I also had a fb friend reach out to me and let me know that her daughter had torticollis and she had early intervention come to the house and show them stretches. I had already started this process prior to our 4 month checkup. Again, the Pediatrician said it was mild and I could reach out for PT, but she didn't feel as though it was necessary. BG was still sleeping in her bouncy seat every night (most nights it was inside her crib) and I was concerned about her positioning, but the Pediatrician said that we needed to do what we needed to do to get her asleep. Try to work with her while she's awake. She'll be fine.
Early Intervention has worked with BG since she was around 5 months old. At first, we did OT and PT, 1 time a week, alternating weeks. So she'd have PT twice a month and OT twice a month. After a few sessions of OT, when the OT wound up stretching her more than anything, I suggested that we switched to all PT and everyone agreed that would probably be best. We'd go a week here and there where she was tilted, but we thought we were making progress and we shouldn't have too much trouble "straightening her out." This was something that just takes time and is annoying, but will work itself out.
Around 7 months, BG was not sitting well. She wasn't crawling. She actually showed some weakness in her left arm. Our Pediatrician was on maternity leave, so I made an appointment just to have another set of eyes check her out. The Dr who saw her that day had been there for many, many years and saw me and my sisters as kids. He recommended that we took her to a pediatric Neurologist, just to be sure. He didn't like the weakness in her left arm either.
At my request on facebook about local neurologists, I received some other information about other PTs that wanted to see BG. I took her to 2 PTs, that said her case was mild and typically, they don't work on children "her age" because this is gone by now. They were unable to help.
The neurologist did an exam on her and felt that everything was ok with her brain. He was pretty sure that her bones were fine too, but the only way to be certain was to order an MRI. This required her to be unconscious for about 1 1/2 hr so they could make sure she was still for the pictures. We took her to have the MRI at Lancaster General Hospital on her 9 month birthday. She handled anesthesia like a champ. She did so great. I was so proud of her. When I went back to see her in recovery, I walked back with another mother who had a daughter (probably about 7 or 8) that had her tonsils taken out. The volunteer called both of our names and we just walked and walked and walked back these halls, taking so many turns. It seemed like forever till we got to recovery. No one said a word. We both had tears coming down our faces by the time we got to our babies. Her daughter was feeling pretty rough and crying. My BG was surrounded by about 6 nurses. When they parted, so I could see her - they all were smiling and laughing. BG had the biggest smile on her face and the one nurse had her hands underneath BG's armpits while she bounced and bounced and bounced away. I couldn't believe it. I grabbed her and just kept asking everyone if she was OK..... when obviously, she was. They laughed and said she was adorable and said they couldn't believe how much she was bouncing and asked if she had a jumperoo at home. It would be a few days before we would hear about the results of the MRI, but for now, I had hoped the worst was over.
Thankfully, the MRI revealed that all was OK with her brain and spine. This was ruling out neuro problems like a brain injury at birth, cerebral palsy, bone disorders, etc etc. While everyone was telling us she probably was ok, everyone was also telling us that this should be gone by the time she was 4 months old and here she was 9 and it was still there. However, since she was 8 months old, she had now mastered sitting, could army crawl/starting to crawl with belly off the floor and had seemed to not show weakness in her left arm any longer. Perhaps we were on our way after all.
The neurologist also suggested that we went to Hershey Medical Center to have a consult on Botox therapy. Yes, Botox. The theory behind this is that the SCM muscle that is tight would be injected and "paralyzed." This, combined with PT should help to stretch it out, so she could gain full range of motion. When full ROM has been accomplished, PT can then be used to strengthen the non-tort side, which is weaker and not used to holding the head up.
The amount of push back I get from people on this is astounding. Obviously, PT alone isn't doing the trick. Obviously, it's not going away on its own. I'm tired of sitting back and not doing anything. I am the one in the house that does her PT. I'm the one that spends all night long trying to get things done in the house, trying to pay attention to our other daughter and trying to stretch/strengthen BG's neck. She screams, she fusses, she's uncomfortable, she's tired of me messing with her and it wears on a person. I become short with KT and that's not fair. All I want to do is fix her head and I can't. Mommy guilt. I put a tv show on to occupy KT while I stretch and do exercises. Keeping KT downstairs all alone. Mommy guilt.
When she was a baby, I should have done more tummy time. I should have done more stretching. Should I have taken her to the chiropractor that wanted to see her for her colic? Could that have fixed this mess without having to do this? I probably should not have let her sleep in her bouncy seat as much as I did, but she couldn't sleep flat because of her reflux. I was home, virtually alone, just trying to do my best and now she's almost a year old and every time I look at her it's a damn reminder of what I didn't do or what I could have done. If I had taken her to the PT at 2 months old, perhaps he could have fixed her. If I didn't wait so long to get Early Intervention, maybe they could have fixed her. If I was not on my own the majority of the week, maybe something could have been different.
Would it have mattered? Maybe. Maybe not.
I have researched techniques and doctors and have asked questions in forums and have started my own forums and I'm still at a loss. There's a Dr. near Philly that does not take insurance. He says on his website that he can fix kids with torticollis. Can he really? No insurance, no credit cards, no checks........ Mommy Guilt.
I work full time. I can't expect others to be there to stretch her and help her and fix her while I work all day. I do enjoy my job and I know that it's necessary for me to work, but picking her up every day and seeing her head "not straight" is just like a punch in the face. What could I do differently if I wasn't at work all day, that could get her out of this situation?
There's a Dr in Atlanta that has seen several babies in a tort group of which I belong on Yahoo! Groups. Do I pack BG up, hop on a plane and go to Atlanta? I would in a second if it would work.
Every appointment that I we go to, I hope. I just hope that someone can give me the answer. They can do something to make this nightmare go away. As time goes on, the harder it will get to fix. As time goes on, the more she'll learn to adapt, causing other bad habits and potentially causing more issues like vision problems, curvature of her spine and god knows what the hell else.
The reason I have chosen to open up my frustrations on this blog was 2 fold. First of all, I'm about to explode with frustration. I do not want people to look at her and wonder what's wrong. To wonder what I am not doing and why she's crooked. I don't want her to get to school and to not look "right." I do not want her to have other issues arise because of something that I did not fix. I have always been dramatic and a bit of a worrier, which doesn't help in situations like this because everyone seems to downplay my level of frustration. If 1 person is supposed to be able to fix stuff, it's mom. When mom can't fix it, well.... that's simply not an option. For that reason, I have decided to not rest my brain until we have a solution. I don't care how many vacation days I need to use. I don't care if I have to take unpaid time off of work because I used up all of my vacation days. I don't care how many miles I put on my car. I don't care if I need to fly to Atlanta. I don't care who tells me that "it's not a big problem." I will not rest until I see that she's fixed. I've got a pretty keen eye on the issue. Others say, "I can barely notice it." Right, it isn't like she's got a 3rd eye on her face. It's not that she's so severely deformed (I could not imagine being a mother of a child like that. This is too much for me to bear some days. God bless those children and their parents). However, I can tell that she's got something limiting her mobility and something limiting her from doing tasks she should be doing at her age.
I know this "condition" isn't life threatening. I know that there are things out there that parents have to deal with and kids have to experience that can't even compare to this "issue." However, it's important to me that we get it fixed. Whatever it takes. For her.
For weeks, I've had it in my head "sure we'll keep this Botox appointment for August 31st. I am sure that by the time we get there, the dr will suggest that it's not necessary." It hit me like a ton of bricks a few days ago. It's not going to be better by next week. It's not going to be better by her first birthday. I am not sure when it's going to get better and sometimes I am not sure IF it's going to get better. I don't want anything to hold her back and right now I'm not holding back one damn second to fix her.
I want her to be 13 or 15 or whatever and know that I did whatever I needed to do to make her better.... I don't want her to look in the mirror and hate me for not doing anything and everything in my power to fix it. That is the second reason I have chosen to write this blog. It's more "fun" to write the funny moments of the day that happen as a mom. I hope that someone is reading this that can give me some insight. Some help. A reference. ANYTHING.
That way I can have Mommy Pride.....instead of F&%ing Mommy Guilt.
