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.

Resources & Equipment Clinic

This past week has been a busy one as I've been calling around everywhere trying to get some help and resources for Carter.  A lot of my information is pertinent only to Utah so I won't share unless someone is interested in what I know.  We have submitted paperwork and records to Kids Only Home Health and are waiting to set up respite home care with them.  I'm not sure how often they will be coming or what they will be doing, but it should be set up by next week.  Insurance usually covers an hour a day, so a nurse will probably be coming out in the mornings to help me get Carter ready for the day.  I'll keep everyone posted on how it works.

We went to the equipment clinic today to get Carter a wheelchair and a bath chair.  Hopefully insurance will have it through within 90 days, I'm hoping a lot less than that.  I'll post pictures when it comes of course.  The one I ordered is foldable and will fit in our car- it will also be designed just for Carter in every way for his muscle tone and size.  Insurance will usually just cover 1 every 5 years, and the good thing is the wheelchair can grow with him and be replaced as needed.  This doesn't mean he won't ever walk, just gives us something great to transport him in with more support.  The bath chair is also adjustable in every way so it can grow with him as well- I'm excited for these things as I'm sure they'll be a great help to us.

Carter has been sick the past week and he has actually been quite a sweetheart.  It's almost like the cold has made him better or something.  I got the cold as well but not nearly as bad.  Poor guy.

Respite Care, Shriners, Ketogenic Diet, Baby #2

Since Carter has had these recent behavioral changes, ive been trying to find all the resources that I can.  I kept hearing about respite care so I asked a social worker and they told me Utah isn't great with that.  Some states or countries actually have trained professionals that can spend time with your child for so many hours a week or month.  Other places also have group homes or other facilities where you can place your child for a time for a break or even vacation.  Utah has a very long waiting list, and the respite care is basically whoever you can find to babysit.  Eventually you can get a certain amount of money that can help you pay whoever babysits the child, whether it be family or not.  We've already had the problem of finding people that can watch Carter because they have to be trained on his medications, possible seizures and G Tube feeds.  It's not quite simple as just dropping him off somewhere.  So I'm waiting now for the paperwork from respite, which I have 90 days to complete, then he'll officially be on the waiting list.

They have a place called Friday's Children and the website is https://www.fridayskids.org/app/?page=aboutus   The facility is in Orem and can provide an evening of babysitting for special needs kids so their parents can go on a date or get a break.  While it's nice that it is available it isn't exactly convenient.  So for right now our respite care is our parents and my husband.  We've been trying to make it a priority to go on weekly dates so we can get a break, and sometimes I'll go somewhere for a few hours a week and my husband will babysit him.  While I wish there was more available to us, I'll take what I can get.  While collecting my wealth of information, we got accepted to Shriner's Hospital.  I don't know much about them but Carter's 2nd pediatrician recommended we go to see the orthopedics department.  We went and Carter had xrays done on his spine and hip bones and everything looks great.  We hope to get him in his stander again on a regular basis to keep up the good work.

One of our decisions lately has been to wean Carter off of the ketogenic diet.  For those not familiar or haven't read about it before, it's a diet designed to control seizures when medicines have failed.  Carter has been on the diet since the end of November, and while we've seen some good changes, we think all of his behavioral issues are stemming from the diet.  Whatever is in the formula has rewired his brain somehow.  It's been hard to know whether it's the terrible two's and something that would have happened anyway, or if it is for sure the diet.  We've tried several medicines to rule that out, and so now we are weaning him off the diet.  He started back up on Pediasure today again, so we'll see hopefully over the next few days some positive changes.  It's been a hard decision to make because Carter has been more aware, grabbing more, watching people more and sitting up better.  But his moodiness, not taking naps, crankiness and new movements have us worried that he isn't handling the changes well.  We've tried everything we can think of to help and so this is our next step.  While hard to make another change, it's not irreversible.  We can always go back to the diet in the future if we decide to.

Carter has been sleeping good at night (knock on wood) which has been great, although it doesn't mean I am sleeping well.  I am 28 weeks pregnant and in my last trimester.  I am hoping the last 3 months go smoothly in my pregnancy and that I don't get pupps(rash) like I did when pregnant with Carter.  I haven't gained any weight yet which is great, I hope to only gain 10-15 max.  So I'm hoping that this last while before the next big change that Carter's moods will even out and become more manageable, that his seizures won't come back, and that ill get my energy and happiness back.  Everyday is a fresh start and even if I am faking it until I make it, I hope one day soon that it will be for real.