Wow. I have neglected my blog for over a week now. I figured it was time for an update. Not too much has happened recently. First Steps came out to meet with us today and Wendy's occupational and physical therapists will begin working with her next week.
I feel like as a mom, I've learned a lot. Sometimes its trivial things, like how I prefer Huggies diapers over Pampers, but Pampers are my favorite brand of wipes. Sometimes, you learn more important things, like you can never let it get you down when one doctor or therapist tells you something negative, especially when you know different.
For Wendy's 5 step evaluation we had to take her to Bowling Green. When we arrived there, I could already tell that the doctor's office did not measure up to my standards. However, the evaluation had to be done in order for Wendy to receive care from First Steps. Even though she was 3 months and 11 days old on the day of the assessment, they judged her like a 1 month and 24 day old, because she is a preemie and that is her adjusted age. They said she would not tolerate being placed on her back or any other position, unless she was sitting upright, which Wendy does enjoy being held upright because she is learning control of her head, but she will tolerate being held different ways, just not by a complete stranger while she's naked. They said she was very stiff, that she preferred her right side (and that does, because her colostomy and g tube are both on her left side, so she doesn't spend a significant amount of time on that side), that she doesn't turn her head, and that she keeps her hands clinched. They said she was disorganized and irritable and her visual exploration is decreased. They said she wouldn't focus on a black and white picture. They said she doesn't tolerate bathing, dressing, or diapering.
I pretty much got a 5 page report on how my child is behind in 5 different areas. Needless to say, I was upset. I know Wendy may not be on the same level as some other 3 month olds, but I feel like the progress that she has made is astounding. And apparently, the therapists from Kentucky First Steps agreed with me. They saw her in her home environment, where she is comfortable. They did not take her clothes off and then try to move her in different positions and they allowed me and Zed to hold her while they watched. Wendy was turning her head and watching everyone. She was sitting up, supporting her own neck, however, when she got tired, she rested while laying on her back in my arms. She sucked on her hands, she put pressure on her feet and tried to stand up, and she wasn't crying and distressed.
It was really tough seeing Wendy go through a difficult evaluation when I knew she was not comfortable. it was even harder getting a report listing problems with every area that they assessed, but today, it was really nice to have some reassurance. Someone that sees Wendy the way I do. The occupational therapist will be working with her sucking reflexes, so she will definitely be needed, but they said we may not even need physical therapy the whole 3 months that we will be here. She will come and keep an eye on Wendy to make sure she's progressing normally and work on tummy time, but she acted like Wendy having a pt wasn't something completely necessary. I'm just glad to finally get some good news after almost 2 weeks of worrying.