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Monday, March 26, 2012

Genetic Testing, Home Health Care & upcoming events

My husband Chris and I were tested to see if we are carriers of 1p36 deletion syndrome, which would mean a 50% chance the rest of our kids could have it.  Both our tests finally came back normal.  Great news!  Carter is extremely unique and it must have been meant to be.

Carter has finally been approved after months for 27 hours of home health care with an aide over the next few months.  They will come to our apartment at designated times and days to play with him.  The aides are not able to administer medicine or feed him, but they can bathe him or play with him.  I'm still not sure exactly how this will work or how comfortable it will be, but hopefully Carter can get some more entertainment than I can provide.  I will keep everyone posted how this helps us.

Carter is also officially on the Division of Services for People with Disabilities (DSPD) waiting list.  I've heard of people that have been on it for over ten years, so i'm not extremely hopeful for results.  But at least I have him on there, one thing off my to do list.

Carter's wheelchair and bath chair should be coming next week and I am excited to get them.  We have noticed Carter seems more calm when he has straps across his chest like a car seat, so hopefully this will not only calm him down on outings but also keep him from getting out.  We've been using the same stroller since he was 3 months old, and now he has gotten so smart he will lean back and forth multiple times to get the stroller to move forward so he can touch things.  Clever little boy.  He is still trying to sit up all the time when in a lying down position; he is also laughing more and seems to enjoy more.  5 weeks and counting down to his little baby sister.......

Wednesday, March 14, 2012

Carter Wants to Move!

Carter has been trying to do all sorts of stuff lately- he looks like he is doing partial sit ups.  I think he wants to sit up and he does it anytime he is on his back.  He tries so hard the poor guy so we help him and he seems so happy when he gets up.  He also rolls all over still and sometimes ends up on his stomach with one arm stuck underneath him which makes him kind of mad.  He is constantly leaning forward to touch something or other and seems so curious.  He has had NO seizures that we've seen for at least 2-3 months now.  It's incredible.  It's like his eyes are open to the world and now he wants to get moving and learning.  Sometimes it can be frustrating because it seems like he'll fall off stuff or he gets frustrated when he can't get it right, but at least he's trying.  It makes me hopeful that we can teach him some stuff in the next little bit since he is more aware.

He is definitely more aware of himself too- he plays with his feet a lot like he used to when little, he touches his head and twists his body in new directions.  He seems just like a normal toddler except he can't walk or talk.  He is very sensory seeking and wants to touch everything and anything, which sometimes is our faces, and he could scratch at them all day long.  We try to give him other things for more functional play, but he loves to touch and scratch faces, doors, walls.  I'm guessing this is just a phase until he can get more input from something else.  I tried a weighted vest on him, bean bags since they are heavier and give more input, as well as a bowl with beans and noodles.  He still seems to prefer doors, walls and faces.  Oh well.

I'm 33 weeks and 2 days, so baby girl is coming soon.  I am curious to see how Carter will react to her being around.  He didn't use to notice children or babies but now he does.  Grandma Thorup has been taking him on Wednesdays to give me a rest which is much needed for us both.  It's nice when Carter can be around other people to get more attention and a variety.  He does get bored so quickly these days.  I am thankful for this developmental stage Carter is going through, even if it brings with it some interesting dynamics.  I am happy he is more aware and curious at the world around him.  If I had more energy, I would share more with him.  I don't want to miss this window of opportunity.  Hope it stays around.

Monday, March 5, 2012

Terrible Two's

It seems that Carter is in his terrible two's as they call it- that is my conclusion.  He sleeps good at night but never wants to nap and he'll just cry and cry to finally give up for maybe 20 minutes then wakes up again.  He is hard to keep entertained and happy for long periods of time, his moods are up and down all day long and he just seems like a stranger to me.  The past few months or so have been a difficult time with him.  I never know what he wants and can't seem to please him.  Being over 7 months pregnant makes it extremely difficult for me to hold or carry him, so what little I can do doesn't seem to be enough.  I feel like he needs a group of people just to keep him entertained all day long.  He sure has enough toys and books to keep any kid happy, but i'm sure since he can't pick and choose himself, so it makes him frustrated.

I try to put myself in his shoes when im frustrated and stressed- he can't move on his own, he can't talk and he can't just simply go get what it is he wants.  Parenting is always a guessing game of trying to figure out what they want and deciphering their cries- but this goes beyond the normal im hungry, tired and have a messy diaper.  This is more than that and I don't know what he wants.  I am exhausted by the afternoon and just wish he could be happy for longer periods of time.  He does have times where he seems content for awhile but then he fusses.  I have to admit, it's got me overwhelmed and wondering how in the world I'm supposed to do this with a newborn.  And I can't.  That's what family and friends are for- I know I can't do it alone and i'm okay asking for help.

We are still in the process of getting some kind of respite home care but insurance is slow going on that.  I already have it set up with my mother in law and mother that they will take care of Carter during the week so I can take care of the new baby for the first while.  While i'm grateful for any help I can get, I just don't know how ill ever be able to handle Carter as well as a new baby.  Is there anything anyone has given their child medication wise that helped them calm down through this transition or developmental phase?  Are there things that can help the terrible two's?  I don't know how to communicate with my child it's very frustrating.