The nurse from my state's early intervention program is coming to see my son for the first time on Friday. I would love to have a list of questions to ask her. Can anyone who has been through this please give me ideas?
Here is my son's history: Born 3-27-09 at 32 weeks, spent 5 weeks in NICU (2 weeks in intensive and 3 weeks in step-down), had a bilateral grade III IVH. He is currently 4 1/2 mo actual (2 1/2 mo corrected) and is doing great. He has been diagnosed with a protein sensitivity and is on an amino acid only formula and has severe reflux. As far as I can tell he seems to be doing really well. He is putting on weight, follows things of interest with his eyes and his head, makes eye contact, laughs, and vocalizes constantly. He started trying to sit up two days ago and gets mad when we lay him down because he wants to be either sitting up or standing. He refuses to do tummy time and screams at the top of his lungs about 2 seconds after he goes on his belly. Because of his reflux he never lays flat on his back, so he isn't doing any rolling over at all.
I honestly think he is showing no signs of his IVH, but his GI asked me last week if he is always stiff. I have no clue what he meant and was too flustered to ask before the appointment was over. So of course now I am all sorts of paranoid, but having never had a kid before I'm not sure what is normal baby behavior and what isn't. Any thoughts ideas and comments would be VERY welcome.
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Early Intervention Questions
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4 replies
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- By mygirlsmom
- Posted August 19, 2009 at 4:40 pm
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We had our first E.I. yesteday, but have been through several rounds of follow-up clinics through our hospital. It's amazing how a good team can really pick up stuff. I suggest you just be as honest as possible and don't embellish anything - give them the clear picture from your standpoint. Definitely mention anything in particular that you've noticed, and also the tummy time. Our girls screamed during tummy time, but it so vitally important for child development, especially for preemies that already have weakened core and neck muscles. They can give you different ways of doing it that your son may be more receptive to. We did it by putting our girls on their boppies on their chest, or on our own chest, at a slight angle. You may want to just start for 10 seconds at a time, and slowly increase the amount. We made sure we got in at least 30 minutes a day (sometime broken into 4 - 5 sessions). I really believe it was instrumental in helping their growth and development.
In terms of stiffness, many preemies have stiff limbs that need some stretching. There is a large spectrum of preemie stiffness, worst case scenario is cerebral palsy, but a lot of the time, it is just muscle stiffness due to them being preemies. My 30 weekers had some PT and basic exercises to help them with this, and they still get monitored for it, but they're doing great.
Best wishes, let us know how it goes.
- By katek
- Posted August 19, 2009 at 4:58 pm
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I would mention to the evalutator that the GI doctor had mentioned something about stiffness and say that you'd like that examined. It may be that at the first meeting, the person doesn't necessarily go through tests but just gets a general sense of baby's profile. At least that was the system in our state. I would ask the person about tummy time recommendations. There are some techniques for distraction.
I think that with some parents, there is a tendency to exaggerate how the baby is doing when confronted with an evaluator b/c you don't want baby to test poorly. IMO, it is best to be critical and never overstate how well baby is doing. If baby is doing well on something, be honest but not overly enthusiastic. If our son knew a skill and we were asked if he had it, we say something like "Yes, we hae seen him do that on occasion" rather than "Oh yes, he is the best ever and does it all of the time."
At our son's first evaluation, my mom was present. Being the proud grandma, she totally exaggerated my son's skills. My husband and I had to backtrack and explain that we'd never heard him making the sounds she claimed and gestures. We frankly did not care that our son tested poorly if that meant that he qualified for services that he needed.
So if they ask you, for example, if your child is making a "Ba" sound and you've only heard it once, don't claim that he's doing it as a mastered skill. It could be incidental. If you have heard him do it repeatedly, then that's another matter.
In this day and age with small budgets, my fear is that developmental coordinators will look for any little excuse to not provide services.
Wishing your baby much success with his development!
- By quadmomma
- Posted August 19, 2009 at 8:42 pm
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I too have two babies with levels 3&4 IVH. We had ECI scheduled to come out just weeks after we brought them home from the hospital. I worried too about what to ask them, however THEY did all the question asking... more than expected and they were sure to get all of the info needed. My two that have the bleeds are doing very well and I see no set backs so far. They are a TINY TINY TINY TAD bit behind the others as far as rolling over/strength in their legs, but nothing to worry about just yet. It is good to have the therapy on board early to help watch for any signs.
Hope all goes well!
-Heather Cox
- By misunderstoodmama
- Posted August 20, 2009 at 12:43 pm
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We are in our 2nd year of EI and are really happy with it. They have always been fair in evaluating his abilities and we have over come a lot of obstacles with OT and SLP. And its in your home for free :)
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