These two pictures were taken by Daddy on Valentine's Day. The outfit she got for her birthday from Auntie Karen and Uncle Tom, the sweater she got from Auntie Helen and Uncle Bob for Christmas...thanks!
OK, so on Monday Maryam had a developmental evaluation from Early Intervention. I'm always nervous about her development. Even after the evals when I know the results, I still freak out for a few days wondering what I should be doing differently to get Maryam all caught up. The reality is, I work with her all day everyday, so I don't know if there is anything else I can be doing or not.
Maryam's actual age is 26 1/2 months, her adjusted age is 23 months. (I still adjust for prematurity because I was told in the NICU by her neonatologists that they adjust for prematurity in micropreemies until they're 3 years old as opposed to 2 years for older preemies) Fine Motor: 20-23 Months Cognition: 24-27 Months (28 months in some skills) Social: 24-27 Months Feeding skills: 20-23 Months (which I think is funny since she doesn't eat!) Dressing: 20-23 Months Gross Motor: 16-19 Months
The curve hasn't changed much over her two years of life, she's always behind developmentally physically. That doesn't worry me too much because I think he body will be able to catch up when its ready. I have her PT twice a week and we run and play outside for many hours of the day. I don't know what more I can do to help her physically. The big hang-up for her in gross motor is that she's not jumping. She should be jumping by 2 years old. As far as fine motor skills, most children develop these skills from self feeding and finger feeding at an early age, well, we all know Maryam's history with that. But I've been working with her on stacking blocks and playing with Mega Blocks. Next I'm going to try to have her fill a bucket, peel and place stickers and teach her to how to take her shoes off. I guess those will help her with her fine motor skills. Also, when Daddy bakes, I'm going to have him ask Maryam to help him decorate. That way she'll be handling small candies, having fun AND developing fine motor skills at the same time. Dressing, ugh, dressing. I don't know if Maryam just lacks coordination or what, but she just doesn't seem to get it yet! She can take off her coat and pants, but is clueless when it comes to anything that goes over her head. Just this past weekend I tried teaching her how to put her own zip front jammies on and she looked at me like I was nuts! Of course, she enjoys zipping them up, but she wants me to do all the hard work for her. I have a feeling that is pretty normal for a 2 year old though, but who am I to judge what is normal? The feeding skills test was amusing for me. She showed that she knows what to do with utensils and plates and napkins and such, she just has no idea what to do with the food! Ha! So, because of that, her skill level is 20-23 months! Ha! Not bad for a baby who doesn't eat. As for cognition and social skills, I'm very pleased that she's on track with these two. I kind of feel that as long as her brain is functioning normally, her body will catch up when it can. I think the fine motor skills will get better when she starts eating better and loses some more of her fear of food, I think the gross motor will get better with her PT and the weather getting warmer. (she'll get to play outdoors more, hiking, swimming and such helps strengthen her muscles)
The over all fantastic news is that Maryam is almost caught up! Not bad for starting out 4 months behind at birth.
Funny Maryam story: I do laundry ALL the time. I always feel like there is a load of laundry that just has to be done. Well on Sunday I did a ton of laundry and was very pleased with myself for getting it all done. Maryam likes to help by putting the wet clothes in the dryer and helping me take the dry clothes out of the dryer and pretending to fold. (folding for her is taking already folded clothes and re-folding them the way she wants it, which looks more like a ball) Tuesday night I went into the bathroom and saw that the hamper was full again. I couldn't believe it! So I took the hamper into the laundry room to do yet another load when I found the reason it looked so full was Maryam had put her basketball in there.
Yesterday Maryam had an appointment with her Ears, Nose and Throat surgeon. He said that her ears look clear, no infection. He then did a wave test and that came back totally normal on both ears too. That is GREAT news because now we know that we made the right decision in January when we chose to wait on the tubes! Maryam hasn't had an ear infection since December and doesn't have to go back to see Dr. Tadwalker unless she has another ear infection before May. Hooray for eliminating another specialist...sort of.
Funny Maryam story #2: We were getting ready to leave the doc's office and Maryam asks, home? And I tell her that we're going to go play with Auntie Sarah and Charlie Mae today. She said, and 'cott? I have to tell her that Uncle Scott has jury duty and probably won't be home, she said again, 'cott. I said, yes, normally Uncle Scott would be there, but only on the weekends, during the week he has to work, but today he has jury duty. Again, only this time yelling, 'COTT!!!! I said, he might be home later, but I don't know. So, then the whole way to the car, in the elevator, through the parking lot, she said 'cott, cott, cott with EVERY step!!!! She sure loves her Cowdy Scott! When we got to Sarah's house Maryam knocked on the door and when Sarah answered Maryam ran into the house, down the hallway yelling 'COOOOOOTTTT. When Scott finally did get home last night, Maryam looked up at him and batted her big brown eyes at him. It was really cute.
Maryam has been on that antidepressant now for almost 2 weeks. Tomorrow will actually be the 2 week mark and FINALLY today was the first morning feeding where Maryam didn't have any retching. I don't know if that means that the drug is starting to work, or if its just a good morning for her. I'm going to give it another week before I start the second drug. The second drug is supposed to make Maryam feel hungrier. I hope that works!
Brett took Maryam to OT on Tuesday and it was the first time we had the chance to try "reward therapy" and Brett said it worked really well. I was kind of worried that she wouldn't understand, but Brett said that she picked it up right away. They gave Maryam a book and wouldn't let her turn the page until she took a bite. I guess she took LOTS of bites! The team at CHOC wanted us to start reward therapy because that is what they do in their program. They wanted us to get Maryam familiar with the process before she goes there. So, we're going to do it again today at lunch and at dinner, so Brett can show me how Dawn did it. I didn't get to go because I was busy having a darn root canal. NOT FUN.
OK, I think you're all caught up now. Thanks again for reading about our little miracle baby. I apologize for lagging on updating.
We are Jennifer and Brett, mommy and Daddy to Maryam, the former 25w 2d micropreemie and blessing sent from heaven. We started this blog about Maryam to help save time and keep our families and friends updated on our little miracle baby. Its been really fun sharing her day to day progress and we've been getting loads of wonderful feedback. Thanks to all of you for checking up on her. We know that everyone's lives are busy, we love that you all take the time to see how she's doing. Thank you for your thoughts and prayers.