No More Seizures! Knock on Wood

I haven't been grateful enough or vocal enough about Carter's absence of seizures.  He has had no seizures for at least four months.  We are so happy!  I think I was quiet about it for awhile because he had a hard recovery after his tonsillectomy, then I didn't want to jinx it.  It's like we went through a few months of heck to get to this point, and it's wonderful.  Carter is sitting up great and when he feels wobbly he puts his hands out for support.  He has been able to get up from a lying done position straight up like a sit up.  He now uses things around him to help him get up or change position.  This shows he is more aware of his surroundings and his own body.  He also rocks back and forth a lot and occasionally seems to move several inches.  He must be scooting some when we aren't paying attention.  So exciting!

I chalk his absence of seizures up to a combination of the few months we did the ketogenic diet, to medicine and him just growing out of them.  It's wonderful and I am so so grateful.  He has been so aware, he looks and follows people with his eyes much better, he holds a toy more steady and shakes it around, he is constantly trying to move too.  I just love how awake he is, it's like he woke up from a dream.  He laughs again so much and smiles a lot.  I am so grateful for this sweet boy that has come back to me.  We used to call him Mr Giggles because he laughed so much, then when the seizures started up he stopped.  With his new awareness has come some of its own challenges, like his frustration at not being able to do exactly what he wants to.  But he is one of the most patient little boys I know, he is so sweet.  He loves going on walks, car rides, to the store, errands, being around people and watching them.  He loves attention and peek a boo games.  His grandma and uncles are trying to teach him to scoot so he can move independently.  We just love this little boy!

Wheelchair

Carter's cute wheelchair finally came in- my Dad wants to call it Optimus Prime or something like that.  I picked the blue color for it, and the wheelchair techs picked all the details based on his measurements and needs.  There is a clear tray that goes in front of him as well as chest straps that criss cross to buckle him in better.  We haven't taken it anywhere yet, it isn't the easiest thing to transport.  It does fold up but certain parts have to be removed first.  I think we'll use the wheelchair mostly for church, some family events and walks.  Quick store trips we'll still use his stroller for.

Doesn't he look cute in it?

Baby Sister

Carter's little baby sister Sierra Maurine arrived last Wedenesday, April 25th at 2:28 p.m.  She weighed in at 8 lbs 10 oz and 20 inches long.  Perfectly healthy, she went home on Friday and we are adjusting to being a family of four.  Carter has definitely noticed her cries but doesn't seem bothered by them.  He will look at her occasionally but still not sure what he is thinking or knows.

Thanks to grandparents, Carter is getting the extra attention he needs during this time.  He has been a sweetheart lately and enjoyable to be around.

Bath Chair, Heart Update & Home Health

Carter's bath chair finally came in last week and he LOVES it!  It takes filling up the entire bathtub now but he loves to lay back and just splash and enjoy the water.  It's so nice that I don't have to hold him up myself while washing him.

Carter saw the cardiologist last month since they like to see him once a year.  The doctor said he couldn't even hear the little ASD he has and that everything sounded great.  A lot of 1p36 kiddos have heart defects or problems, so I am so grateful his seems to be great.

We've had an aide from the home health company come once a day for an hour in the morning- she will read books to Carter, take him on a walk, bathe him etc.  He seems to like her but always falls asleep about 30 min after she gets here.  We may need to tweak the time a little bit.  It's nice to have someone entertain him for a bit so I can clean or relax.

Carter has been doing a lot of new things lately- not all entirely functional but he's working on it.  He has been able to get up from a prone position if a pillow is under his head to sitting up.  For me that is huge!  He will use his arms to help himself get up which is great to see.  He is sitting up super steady lately and uses his hands to balance him if he is wobbly.  I frequently find him twisting or trying new positions which he ends up getting frustrated at because he ends up on his tummy a lot.  If we put him on all fours he can hold himself up pretty good for about 20 seconds, we do keep a hand on his stomach to steady him.  He also rocks back and forth a lot, throwing himself back against a cushion or forward into a pillow.  The therapist said this is normal as he is seeking sensory input, as long as he isn't hurting himself.

His wheelchair is all in except the chair- so we are still waiting on that.  Also waiting for Carter's cute little sister to come....any day now!

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.......

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.

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.