Saturday, March 15, 2008

And an update to go with the pictures in post below

Serena and Edwin are toddlers who don' toddle yet. Well, Serena is almost toddling....kinda. She is taking one step while standing, and then she falls down to her knees and crawls or falls forward into whoseever arms are trying to coax her to walk. But she has been taking one step forward consistently for the past couple of days. She wants to walk so badly but is kinda freaked out by the whole thing. It's only a matter of time though.
EJ is consistently getting down from standing. He bends, or falls, to his knees and has not had any falling backward episodes in a long time...thank goodness, those aren't fun.
They are both eating like monsters. They eat absolutely everything, minus stage 3 baby food which we altogether skipped. Their diet consists of primarily all table food, with the exception of some yummy cal packed fruits, including their favs mango, papaya, banana, and apple/kiwi/mango. They have been introduced to hotdogs and it is ALL love. Serena has been known to eat 1 1/2 hotdogs at lunch and then eat another whole one for a snack before dinner. Hence her being almost 21 pounds now. Some of their favorite foods are: mac and cheese (Serena doesn't like the boxed kind though), spaghetti with cheese and sauce, spag with melted cheese, butter and broccoli, rice and beans made by Daddy, deli meat, shredded cheddar cheese, and chicken patties. They really like almost every table food. They also eat eggs and tuna fish (not together...eeeww.)
When it comes to eating I realize how lucky we are. Now we are not vomit free as EJ has a sensitive gag reflex and if he gags too much, he will refund. Or the crying-induced puke. Although he will refeed immediately which is good. You just have to be careful feeding him, but he's pretty predictable and if he gets gagging/crying he can be distracted, which, if done in time, will put a halt to the refund. But when it comes to eating I hypothesize that we have nothing to do with how well S&E eat. We didn't do anything different than anyone else. I strongly believe a lot of feeding troubles are sensory in nature, and so far S&E do not display any sensory issues. Even at the women's basketball game, it was very loud, and S&E did fine. EJ got startled a couple of times, but never cried or pouted. He just held onto to Grammy and I and smiled away at us when we reassured him it was ok. Textures are no problem for either, although Serena now has decided she doesn't want purees in her mouth when she also has reminents of table food in there. She used to not mind as much but now we have to wait until she has swallowed all of the food in her mouth before we give her a spoonfull of baby food. They tolerate teeth brushing (don't love it but do ok), their hair being brushed and Serena's being put in pony tails. We'll see how they do on the grass and sand this spring/summer, but I doubt they'll have an issue.
This doesn't mean we've dodged everything. Both are still delayed in most areas even when adjusting for their prematurity. We're still working on EJ's low tone, although he is making a lot of progress. In addition to his pulling to stand, cruising, and getting down from standing, he is also getting on all fours (flat palms on the floor) and crawling correctly forward. Now 90+% of the time he's still belly crawling, but he will get up on all fours and scoot forward on palms and knees. This is huge for him! His sitting is still in need of work, although it is MUCH better than a few months ago. I don't know if it's transient dystonia or mild CP, but whatever it is he is delayed and things are a little tougher for him but my goodness does his persistence and determination impress me. He is a little guy who will not let any obstacle stand in his way. He keeps trying and trying and has that look of "I can do this" that makes me all emotional (like in the video where he pulls to stand in his crib...a much smoother and easier feat now, but to see that determination and will makes me teary every time I see it.) His fine motor is also coming along. He is successfully feeding himself food off his tray, and yesterday was putting a ball into a cup-like toy. He still has to have a trigger to release (feeling the edge of the cup) but he did it!!
Serena's fine motor is also coming along. She has begun dropping and throwing toys repeatedly, and laughing hysterically when I say "uh oh!" and pick it up for her to try again. One of her goals was voluntary release without a cue, and she has accomplished this with the dropping of the toy. She has been stacking rings and dropping balls for months now. I think I've mentioned that but just in case.
One bad thing Serena choses to do with her fingers/hands is to grab huge chunks of EJ's hair and pull with all her might. It is so terrible, and I wish she would stop. If you recall she was doing this months ago, but had stopped. Well she started it up again. I am now removing her from the situation along with saying "no" in a firm voice. It really hurts Edwin and as much as I know she doesn't "get" the time-out (putting her in her crib or the play pen for a minute while I console EJ), she needs to somehow realize she can't hurt her brother. Boy, I wish I could explain why it's bratty to do that!

Although S&E are delayed and have medical needs, I try to treat them like typical kids as much as possible. I try not to let myself stress out too much about what they aren't doing yet, and try and be patient with the quesions of how long they will need O2.
Speaking of oxygen, EJ is doing wonderfully off his O2 4 hours a day (next week it'll be 5 then 2 weeks after that 6, and so on), and it's so nice not to have to stress about his sats and O2. In fact when they went for Synagis yesterday we didn't even bring his O2 tank (we live literally 3 minutes from the ped's but still!) It was a huge step to bring him down the street without even stressing about oxygen. Daddy and I just carried our little ones down to the car, strapped them in, carried them into the office, they got their shots, and home we went. It was pretty cool and I'll be glad when the oxygen is done for good. Although I am worried about Serena who can't go very long asleep without it. She only dips to 88-89 but still. I hope her tracheomalacia resolves soon! I'm starting to think Edwin will be done oxygen before Serena just because her issue is more airway than lungs. But this is something we will discuss with pulmonology and the ENT. I really don't know what the next step is/how long they want her on O2 while asleep but as of now it's not a pain since it's so routine and she only needs it at night.
So anyway, I'm sure there are things I've left out about the cool/cute stuff they do and the things we're working on, but this is good for now.
Today we're having an early Easter dinner since my sis is down from Maine for the weekend. I'm excited to eat and hang out over at Grammy's! More pics to come tomorrow!

5 comments:

Emily said...

It's so awesome to see how much progress they're both making, especially for 23wkrs.

Judith and Jason said...

The kids are doing GREAT! One question..are they self feeding all the yummy table food or are you feeding them? Reason I ask is b/c Nina seems to not dig mushy stuff and I wanted to know if perhaps self feeding would be better? Let me know how you are getting it to happen over there!

23wktwinsmommy said...

Serena is doing all self feeding...not with utensils, but with her little fingers. Edwin mostly does self feeding, but sometimes if he is taking too long, I pop a piece of food in while he concentrates on picking up a piece from his tray...because he doesn't crawl on his palms 100% of the time his fine motor is delayed. But he can feed himself pastas, hot dog, pieces of chicken patties, crackers, puffs, and toast.
Serena does not like when I feed her and will actually take the food out of her mouth and refeed it to herself...so independent. She also fights me when I feed her baby food on a spoon but she will open up if I do a sing and dance for her.
I'll be happy when they spoon/fork feed neatly. I think we are a far ways off from that though!!!

Kellars Mommy said...

sounds great!!! kellar still doesn't do well w/a spoon or fork, it'll come in time though..hot dogs around here are a must have..funny as i was reading through your list of their fave foods soooo many of them are kellars too..it is nice to at least not have to really worry about feeding issues isn't it, goodness knows i have enough other worrys to tend to..

Mommato4miracles said...

So awesome to see how wonderful they are doing. I miss them terribly, and it is so awesome when i call the house and I hear them in the background. GO EJ, thriving with no O2!!! I am so happy for you guys