Being the parent of a preemie has a different set of rules. Rules that seem to change on a monthly, weekly, daily basis. It causes me to worry than not worry than worry and so forth. You get the picture.
Roo had PT/OT on Thursday. We hadn’t seen her therapist for a few weeks because of Thanksgiving, travel, and a presentation she was giving. I was so excited because during the time we hadn’t had therapy, Roo was making so much progress. She was vertical, on her feet as much as possible and letting us support her to walk around.
Her therapist was also excited but because of those new developments was able to see something that she either didn’t notice before or missed. We knew that Roo has low muscle tone in her core and that was causing the delays in sitting, crawling, etc. But her low muscle tone issues are now being noticed in her legs and feet. And, could be affecting her mouth, which could be why she is delayed with speech.
Next week, we will do her 18 month assessment to see where she is developmentally. I have mommy brain and can’t remember for the life of me what it’s called – maybe one of the other preemie mommies can jump in. She has always tested incredibly high in the 85th percentile for her fine motor skills and in the 5th percentile for gross motor skills. After the assessment is done, the results are shared with us and Roo’s pediatrician, whom we see on January 7.
I know that we will be referred to a speech therapist. I won’t be surprised with that referral. But, I think people are going to start pushing us to see a neuro specialist to look further into her muscle tone and delays. I’m hopeful that this won’t happen but it is something that my parents (doctor dad) is pushing for and I’ve been very hesitant to pursue – for many reasons. First, I’m scared. Second, I hate subjecting my daughter to test after test after test. I feel like every other month she goes to a new specialist for something or other. In October it was the allergist. Third, I’m exhausted emotionally.
Do I want to be sure everything is OK with Roo? Of course, I do. If there is something wrong with her, I want to and currently do everything possible to intervene and help her. I’m just not sure if I can handle if there is something more wrong with my little girl. She’s been through so much and I don’t want to have to put her through more.
A big part of me thinks she will catch up – like she has in the past. She is on her own timeline. She meets all of her milestones – just in her own time. Do I push for more testing or wait and see? I know that early intervention is best but why intervene when she will catch up eventually?
The last three or four weeks, she’s done so well that I want to keep riding on this “normal” wave. Yes, she doesn’t walk or talk like all of her 18 month friends do but she communicates beautifully with us and crawls with such enthusiasm that she sounds like a rhino running through our house.
I just wish that I didn’t have to worry about my daughter’s development (or lack of) anymore. I want to be a normal mommy who worries about what mommies of children who don’t have developmental delays worry about like should I be looking into preschool? Yes, the moms in my mom group are starting to look into preschools because of waiting lists, etc. I haven’t even thought about it and will probably wait until she’s three because she’s so tiny, which is not until Fall 2015.
Moms of preemies, please help me. What do I do? Do I push for more testing and early interventions or wait it out? I’m so confused and scared. I don’t know if I can handle another diagnosis that requires more therapy and doctor’s visits. How do you get through it?