First of all I can't believe I didn't find this forum until now what with the excessive amount of research I've been doing over the past 10+ months. I hope you don't mind me posting since we haven't had an official dx yet.
I have 15-month-old twins who have been through the ringer since about 15 wks gestation. They were dx with Stage 3 TTTS which was surgically treated and corrected at 18 wks. What we didn't know at that point was that there was going to be neurological damage that would later stem from it in one of our girls. They were delivered at 29w6d due to sIUGR in the other twin. Both have done great. The IUGR babe is tiny but mighty and you would never guess that she had such a rough start. Our other twin, however, is struggling with her motor skills. We like to call her our verbal super star because she is doing so well in that area.
In the NICU, her routine 7 day ultrasound showed an area of echogenecity on the right side of her brain. They followed up a week later with another one and it showed that the area seemed to be smaller. At her routine 30 day u/s, they discovered that the area was the same as the original u/s, in addition to cystic formation (indicating possible PVLM). They recommended an MRI or CT scan but we opted against it due to the fact that she might have to be sedated, and she had a severe sensitivity to sedation for a prior surgery (we almost lost her) so we didn't want to risk losing her for something that couldn't be changed anyway. We were told to watch her motor skills as she developed. She has been in Early Intervention since about 4 months and PT since 9 months. Her therapist said that his therapy wouldn't change regardless of why she was delayed, thus reinforcing the decision to forego any additional diagnostic exams.
Her lower extremities are hypertonic and her abdomen is hypotonic. She was sacral sitting (assisted) for a very long time but has since corrected that for the most part. She still does not sit unassisted and it's a struggle to get her into the position at all, but after time (and if she's in the mood) she will do it. She began army crawling and rolling over just before she turned a year old. An example of her hypertonicity is when I get her out of her highchair. I have to straddle one of the chair legs with my knees because she will press her legs together into the crotch piece of the chair. She finally sits on my hip but not without struggle, and she leans back rather than being completely upright.
She is working so hard and I give her so much credit because I know it isn't easy for her. Our pediatrician is happy that she is at least progressing (as are we!) but her PT is discouraged that she isn't progressing fast enough.
I've learned that the little things really do count for so much (like the fact that she's just begun crawling over pillows, or finally started to "walk" when holding onto our hands, albeit stiffly), and I'm fortunate that our family is just as supportive and excited about her successes as we are.
I'm sad for what her future may hold and I'm terrified of hearing the official dx. I know that sounds horrible, but I really and truly do love her and would be devastated if she weren't here. She is such a pleasant baby! And seriously, who couldn't love a girl whose favorite word is "happy"! It's just a little sad that she has an identical twin sister who beats her up and she doesn't have the ability to beat her back
I don't really know what I'm looking for other than to hear other's stories. Although I don't have much to offer as of yet, I will be perusing the forum, and hope that you don't mind that I wait it out with you here.
He rolled only after 2 years & started army crawling after 2.5 years. As you said, small little things do count so much. I am sure one day "my warrior" will do things all by himself. 