Friday, 7 September 2012

Greeno and Vino

I am starting to appreciate these Target gift cards from Hopkins more and more.  This SEED study is no joke, at least once a week I get a new packet in the mail to fill out, and every other week I have an interview of some type.  And I am not just talking a few quick questions, next week's interview is maternal history and I have been told to expect it to take approximately 2 hours.  Two weeks after that is Nate's developmental history- how long is this one?  4 hours.  And then it's in to the hospital for all of the hands on testing- that is 8 hours.  I get now why the gift cards are necessary to make this study happen in any significant capacity. This is a major commitment for any family.  I would still do it for nothing, but I can see how it would be difficult for families to complete all of this with no motivation other than helping humanity and maybe gaining some insight for their families.  That insight, in my eyes, is worth it's weight in gold, but not everyone would see it that way.  So anyhoo, it's nice to see the gift card in the mail when you realize that $20 is really not that much for 2 full hours of data collection from a parent who could be using that time to help their special needs child. I am thinking that it would be a good idea to save the gift cards to use for appropriate developmental toys for Nate, or for equipment his therapists recommend.  You can find almost anything on target.com.  

When I got this packet in the mail, I realized just how much my prenatal care is about to be scrutinized.  Not to mention my health prior to my pregnancy.  And because I breastfed  Nathan, my health status will be followed for the full amount of time I was nursing- which is an additional 15 months.  Of course I did everything I could to be healthy during my pregnancy and while nursing.  I am glad that I can honestly answer that I didn't have one drink or smoke at all during my pregnancy.  Maybe a few glasses of wine while nursing, but I was always careful to pump and dump.  I never took any medication stronger than tylenol or benadryl.  As a matter of fact, when I weaned Nathan and realized I could finally have advil, I was on cloud 9.  Talk about medication naive.  I had to keep reminding myself that if I had a headache, I didn't have to just sit with it.  That being said, when I started to think through my pregnancy, I remembered a few things. For instance, when I was about 20 weeks pregnant, I got a bad case of food poisoning and ended up in labor and delivery twice for IV fluids and IV zofran.  I also took zofran for nausea during my first trimester.  Without it, I would get sick up to 8 times a day- pretty intolerable with a 2 year old and a full-time job. This of course freaks me out- I mean, moms thought thalidomide was safe in the 70's right?  Now thalidomide is used to treat cancer....how about that?  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001053/  But so far, no significant negative effects are known about zofran, it is supposed to be perfectly safe to use during pregnancy.  http://www.drugs.com/zofran.html  Even knowing this, if I could go back, I would take the pukey feeling. I would take that over this feeling of worry that I caused problems for my baby.  

So on the same day that I got this packet, I got the notice that it is time for Nate's next infants and toddlers meeting soon.  This is his....wait for it....one year progress report (by the way this also makes it my 6 month blogiversary- and with over 7000 views I just want to thank all of you who read- I really appreciate your support).  Can I skip it?  Honestly.  I don't want to go.  I don't want to see sympathetic faces.  I don't want to hear a bunch of half truths and empty reassurances.  I know the score.  He should be a lot further along than he is at this point.  He should be verbalizing much more than he is.  I don't need to hear it from someone else, I know.  This is with 5 days a week of ABA, 2 days a week of OT, constant work and encouragement at home, and wonderful support people within the family.  I can not think of much else we could do other than wake him up and perform drills in the middle of the night.  And I don't think that would be very effective.  Especially when mommy passes out in the middle of it all.  We also need to have the conversation about where he will go in December, when he turns three.  John and I have to attend an information session about our options soon.  Am I scared about this?  Yup.  Because I want them to tell me that there is a circus of intervention available around the corner, and at this point, no matter what is offered, it's not going to feel like enough.  I want an army of practitioners all focused on him, telling us what to do, figuring him out.  Is this unreasonable?  Of course.  Do I care?  Not one bit.  I got a call from the insurance coordinator at the boys' OT last week telling me that almost all of Nathan's covered visits for the year have been exhausted.  I find it absurd that we are allotted 60 visits for therapy- this is not just OT- this is OT, PT and speech combined.  So if he had to have all three, he could only have 20 visits of each per year?  How effective would that be?  I called the insurance company to see how we go about getting additional visits approved.  It turns out that the county (my husband works for the county) HR department has to approve it.  I have never heard of this- keep your fingers crossed that they work with us on it.  I am prepared to throw a fit if necessary, or sick our pediatrician on them.  We started our "speak smooth" supplement 2 days ago- Nate is taking it very easily.  John and I keep joking in the evenings that he is going to wake up tomorrow and tell us good morning.  Wishful thinking.  I am hearing the mom's of all of the kids that were born in the three months after Nate talk about their little ones' first days of preschool, many of them are attending the same school that their older sibling went to.  And I realize how much I have been insulating myself from people with kids Nate's age.  I almost don't even realize how far behind he is at this point because of it.  Self preservation.  I'm not ashamed of it- it's just another aspect of the "new normal".  My kid is not going to do these same things- but as I have said before, that doesn't make his accomplishments any less special.  

So I could have chosen to dwell on all of these issues all evening.  I certainly had enough to think about to pass the time- last night and many many more evenings.  But last night I had more "important" things to do.  Recently, the play group that we have been a part of since Jack was about 3 months old has for all intents and purposes, disbanded.  Most of the kids are in school, and even when they are not, we are all running around like freaks trying to get a million things done.  So we did what we should have, in my opinion, done years ago.  We changed our online schedule from playgroup Fridays to mommy's night out once a month.  On the books.  Mommy time.  Every month.  Praise God!  So instead of completing study paperwork, or worrying about our impending meetings, or insurance hurdles, I went out to a wine bar with 8 of my favorite ladies.  This was not just for fun- this was a necessity.  Mommy's medicine.  Always great to catch up with the people who have seen you in stained sweats, greasy ponytails, with bags under your eyes, and a really BAD attitude and still like you!  Oh, and to put on real clothes and makeup for a change too. 




We all look possessed in this picture....oh well
We clean up pretty well if I do say so myself.  Thanks ladies for a great night- looking forward to "mommy play group" from here on out!  Even though I have a killer headache this morning.

1 comment:

  1. Hi I'm Heather! Please email me when you get a chance, I have a question about your blog! LifesABanquet1(at)gmail.com

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