Odds & Ends

There has been a couple of little developments the last few days.

First of all, D is now tubeless. He is off IV antibiotics and off the wound VAC. His wound still has a few more weeks to go before he can really get back to doing any activity. So, we have talked about him going back to the rehab hospital for a couple of weeks, but the doctor doesn't want him to do rehab for one more month. So, does he stay another month in the nursing home? Or does he come home and sit in his room for another month? That is the question. He still needs twice a day wound redressing, and someone (most likely me and his father) would still have to be there most all the time and bring him food and what not. But I don't think he really wants to sit in the nursing home for another month, either. The rehab hospital is a much happier, cheerier place where he would be busy rehabing, so that's a good thing to have happen. And also, maybe this time (big eye roll) they can accomplish what they failed to accomplish last summer when he was there for a month, which is get him a new chair and bed that will help prevent pressure sores in the first place (even bigger eye roll). It is a big insurance hassle (biggest eye roll in the universe), but that is what rehab is supposed to help you DO, get your durable medical equipment, so it would be nice if they could, you know, DO IT. In 2002, when I sat with him in a rehab hospital as he tried out new tilt-n-space wheelchairs and new mattresses, we decided he needed these items, and here we are 4 years later and 2 major hospitalizations later and still no progress there. So, I'm not getting my fingers crossed, but one can dream.

Also today, I made the kids their last two cans of formula. I've been making 2 cans of Enfamil w/lipil formula every single day for the last 15 months. We are not quite done with formula, yet, though. Now WIC has given us 6 canisters of the Enfamil Next Step Formula in powder form. (WIC always gave us the other formula in concentrated can form. It's more expensive, so I'm not sure why.) So we'll do that formula for the next month or two, then we will finally be on whole milk. So it is a mini graduation, I guess. But I will still be mixing formula a bit longer.

WIC is interesting in how concerned they are over my kids and nutrition. After the initial scary month after their birth of (mostly Naim) not eating and going under 4 1/2 pounds, they've been steadily gaining weight and for the most part have been following the growth chart at about the 10th to 25th percentile. Except for a few days here and there when they've had colds, they always eat well. The pediatrician has never been concerned about their weight and told me I could get them off formula at nine months. But WIC kept insisting that they stay on formula, so here we are at 15 months and still have a couple more months to go. Sometimes I wonder if I'm a needed statistic for grant funding purposes. If so, so be it. I get free formula. Besides, WIC scares me more than my pediatrician. My pediatrician just looks upon all of us as a curious circus act and then goes on to his next patient. The WIC ladies have that custodial social services aura about them that makes me nervous. They are all in that building with child protective services and so I always do exactly whatever they say. When you are a disabled parent, it is always a factor and you have to be very, very careful about these things.

So I've been extremely slow moving and cautious about eating issues. The kids are still on formula, still use bottles twice a day and sippies the rest of the time, we are doing more and more table food every day, but I still supplement with pureed baby foods. But I'm starting to discover the great thing about them eating a whole meal of finger foods is that they will sit there perfectly content and involved in eating for like an HOUR, one little pea at a time. Greatest thing EVAH! I know that I could push them faster on eating, especially Naim because he is all into eating by himself, but I don't want to risk going in to that office and having my kids drop weight, or even not gain the expected amount. It ALWAYS comes back to disability in other people's minds.

I think the bottles will be gone after we get on whole milk. I'm going to do it cold turkey. (Well, sort of, we've been weaning bottles for months now. By that time, I'm sure all that is left will be the bedtime bottle.) It is a bit sad, though to think of getting rid of the bedtime bottle. By then they will surely be walking and with no bedtime bottle, babyhood will be officially over. It's kind of sad, for me. But probably not for them.

Speaking of walking, I KNOW that my kids are 15 months old and aren't really walking yet and that your kids walked at 11 months or nine months or at three days old. Congratulations for you. You being all the people who give me that little look when they say, "oh, you must be starting to have to run after them now that they are walking." and when I tell them that they aren't walking yet, they get all like, "oh, I'm so sorry. My kid walked from the womb right out the birth canal." I'm really just not that concerned about it. If they weren't bearing weight or weren't working through all the gross motor skills stages, then I would be, but they are doing all the things kids do before they walk, except walk. Naim is obsessed with walking now. He drives me nuts. He always wants me to hold his hand, (just one) and walk and walk and walk and walk....and turn around and walk some more. For him it's just a confidence issue. I can tell he really wants to do it, he's just not quite ready. Yesterday at the nursing home, he took D's (now unused) IV pole and walked up and down the hallway with it OVER AND OVER again. I think the other nurses and residents thought I was torturing him, but I couldn't get him to stop. It's all he wanted to do there. He looked like a little cancer patient. The IV pole was like three times his height and still had a empty bag and line hanging from it. I wanna buy one of those at Walmart or something. Then he can use that instead of me. He is sooo beyond push toy walkers at this point. Those are for babies.

Aaron rarely expresses any interest in walking, though he is an avid cruiser. When I do encourage him to walk with me, he is very well balanced and doesn't need much support. With him, it isn't so much a confidence issue as a motivational one. What's the purpose of walking? I'll walk when I"m damned well good and ready. (That will be probably about a day after Naim starts walking, because that is usually his motivation. If Naim can do it, then he wants to do it.)

It snowed today here, which is a rare thing that only happens one or two days a year if at all. I took them out into the snow last year on snow day, but they were so little. So this morning I took them out into the backyard one at a time and held them while big snowflakes landed on their faces and hands. It really didn't accumulate much on the ground at all, but it was pretty to watch in the air. This year they were all excited about it. They put their hands out to catch the flakes and would put their hands on their faces when snow landed there. I showed them how to stick your tongue out and catch a bit of snow and they liked that, although I think they didn't really catch much snow, just thought we were playing the stick out your tongue game. But they were both very curious and smiley. It was kind of fun.

Comments

[instamom]

my son was 18 months when he started walking, and then it took him another 2 months to really get the hang of it. my mom always says, "they all walk by kindergarten, right?!" and to that i say, because we were talking about Z, who has mild CP, "i guess, unless they have a disability preventing them from it" yet, i can still be assured that worrying about it won't help them to reach milestones faster.

i have to keep that in perspective about alot of things....for instance, how well they do puzzles, color, jump, etc. in the end, either they will or they won't be able to do things other kids do, and i need to be ok with simply encouraging them to do as much as they can, without baggering them. (by the way, i am not AT ALL telling you what your perspective should be...i just read your post and it made me think about my own situation, and reminded me of my own goals for motherly perspective. thanks).

[Minnesota Mom]

Wow! Has anyone else had problems with WIC? I had never been on it and my children are teens; one in college. I had time to attend a WIC appt with a friend of little ones. I was appalled! They were very defensive asking me "Who are you?". They treated my friend like she was in grade school not like the intelligent women and mother that she is. I have gone to two offices now and I have observed the same "sing songy" treatment to her and even men that were there. Very degrading. I too definately felt a feeling of if I can find something wrong with what you are doing I am going to be the hero and report you to Child Protection. Is this common and has WIC actually failed anyone?