Cranio-Sacral Therapy = Massage?

So, Chris's maternal Grandmother offered for us to get Carter a baby massage.  She heard of someone great and offered to pay for a few sessions.  I guess this lady works with a lot of babies and toddlers, especially ones with disabilities.  So I got all excited, scheduled the appointment, and took Carter this morning.  It was down in Sugarhouse, in a quite cute building with big windows and lots of trees and greenery.  I took him in, and immediately knew something was a little...off.

The office had Buddhas all over, incense, candles, pictures, curtains, and more.  I was a little leery but we proceeded to the appointment.  She took us into a well lit room with a massage bed, chairs, along with all the previous mentioned decorations.  I was hesitant, but interested to see what she would do.  Well, she proceeded to pretty much just put her hands or fingers on the back of his neck, head, back or legs.  I'm not sure what exactly she was doing, but she talked to me through most of it.  She used a lot of terminology I wasn't familiar with, so I decided to give her the benefit of the doubt.

Carter rolled over to one side and instantly fell asleep while she worked on him.  I think she thought it was because of her powers or what-not, but I think it was nap time and he was comfortable.  So after an hour of chatting (she was a super nice lady), she told me to see if I notice any changes, and if I do, to come back.  She gave me a pamphlet called Counseling & Craniosacral Therapy and her business card- she is a Licensed Clinical Social Worker.  That explains why she was so nice.  I guess the building holds mostly massage therapists, a tattoo artist, and meditation experts.  Interesting.  Should we go back?

Sleepless Nights/Stander/Patience

So lately Carter has been waking up at night, usually at least twice if not more.  I'm not sure at this point if he is teething, or just going through a phase.  I really hope it ends soon, because I LOVE my sleep.  It is hard for me to be patient during the day, when I had such poor sleep the night before.  I know I know, sleepless nights are just a part of life as a parent, right?  I understand.  But the difference between a newborn getting up at night, and an 18 month old is totally different.  It's necessary to feed a newborn or comfort them, but Carter should be able to self soothe by now. Or something.  We are even giving him melatonin before bed, but I suppose that wears out eventually.  It's kind of a bummer, but I guess I should just be thankful for the nights he sleeps well.  He started sleeping through the night at 6 1/2 months of age, and it was wonderful.  I miss those days.  Sigh...

The dreaded stander is now a part of our home and Carter's daily routine.  He is supposed to be in it an hour a day, but only about 15 minutes at a time.  Since he seems to do so well with it, I leave him in there until he cries or sags.  He can last about an hour before he starts to get mad.  He is so sweet!  The problem I have is getting him in it all by myself.  He is like dead weight and is like a limp rag doll, so it's really hard to straighten him out, shove him in (gently) and strap him in.  So I try to do it when Chris is home so he can help me.  Also, the stander DDI lent us is really really old.  The middle strap that is supposed to support his back and bottom, is super loose.  So he ends up almost kneeling with his bum way out in the air.  Funny to look at, but not right for what we need him to do.  So we have devised different ways of getting it to work:  belts, scarves, weight machine straps, etc.  I guess our only real hope is to order a new stander through our insurance, which I hope gets here quickly.  We will probably end up using the stander for 2 years, says our therapist, so we may as well get a nice one.  Here is a pic that is kinda sad, but this is Carter in his stander and he has fallen asleep.

I seem to have trouble lately having patience, and it is probably due to not getting good sleep.  I am usually so excited to be with Carter during the day, and I love going on walks with him and stuff.  I just seem to be dragging, and having all these pity parties.  I know they accomplish nothing, but it feels good sometimes.  Here's to hoping I feel better soon!

My Rolling Monkey/ Stander

This may sound kind of weird to some people, but for those that understand and have kids that are a little bit behind, you will appreciate this.  My little Carter is rolling over both ways all the time!  He can't make it all the way to his stomach, but he is finally rolling BOTH ways and he loves it.  It is soo cute!  It makes changing his diapers and clothes a little more difficult, but I love it.  His physical therapist was very pleased because he can roll both ways, plus is soo close to going all the way to his tummy.  She said any kind of purposeful movement is excellent progress.

We are now working on getting him (or tricking him) into rolling all the way to his tummy.  Our other small high five is that Carter will now push up more when on his stomach.  He usually would relax and take a nap, but now he actually tries to lift up his head or arms.  Progress!  When we get him on all fours, he can actually stay up that way for a little bit.  We have to put him there, but it makes me smile to see my little guy trying so hard.  We are so glad of his progress, even if it is small and few and long in between.  We get a stander tomorrow, so let's hope he tolerates it okay!  I'm guessing we'll have to put him in it a few times a day, for like 30 min.  We want him to not only stand, but strengthen his bones and ankles.

1p36 & Death/ Wheeler Farm

I have been reading lots of blogs about 1p36 to try and get into the community and meet people.  I also wanted to learn as much as I could, and see what other kids are experiencing.  Even though the diagnosis is 1p36 deletion syndrome, it seems like it can vary so much.  I've read about kids that get very sick easily, some that have bone and calcium issues, some that have horrible seizures, a lot of them wear glasses, most I've seen don't really talk, etc etc.  I was trying to find a light or rainbow I guess, some good news.  But I guess I've realized there may not be great news out there.  Which is sad, but reality.  If you are curious to read more as well, there are a bunch of links to blogs at the bottom of Carter's blog here.

When we met with our geneticist, I remember asking her if Carter would go on to serve a mission, get married, have children, etc.  She said not likely, that he would probably live with us for life.  There are options as they get older to put them in homes where they can get proper care, especially if they get too heavy to take care of.  This hit me hard and made me sad, because I always thought in the back of my mind that Carter would go on to lead a normal life.  I know he's only 18 months, so only time will tell, but I wanted to know the hard facts up front.  So I can prepare-as a woman I look ahead, far ahead.  So I have decided to take it one day at a time....to be positive, and enjoy my little boy.  Whatever happens will happen, and I will just hope for the best.  I look forward to the day he can walk, because I know he'll be so happy to move himself.  And I can't wait to hear his little voice speak to me, or say "Mommy".  Even if that never happens, I just want him to feel as loved as possible.  I never want him to feel bullied, like he isn't good enough, or that he isn't "normal".  I want him to always be loved and have a joyful life.  We don't know the life span, because it is so varied and hasn't been around for long.  But however long I have my Carter, I will love him so much and be grateful for every moment.  He is my little angel.

If you aren't crying already, I wanted to write about a family that just lost their 17 year old daughter to 1p36.  Roberty Horry, a retired NBA player, lost his daughter Ashlyn.  He wrote a last letter to her, and since I can't share the link, just go to nba.com and type in Robert Horry last letter to Ashlyn.  It is really touching.  They started the Ashlyn Horry Foundation to bring awareness to the disorder and raise money and support.

WHEELER FARM
Last week DDI Vantage Early Intervention hosted a fun day at Wheeler Farm, for kids that get their services, or community.  It went from 10 am-12:30 pm and it was super fun.  They had blow up bouncy toys, face painting, clowns making balloons, different booths with games and prizes, a refreshments booth, wagon hay rides, and more.  We told a few friends from our ward, and we saw some there which was fun.  Carter had fun on the hay ride, but I don't know if he noticed the animals or not.  We had one of the clowns make him a balloon, a dog, but it pretty much blew up as soon as we got in the car lol.  Guess it was too hot.  I like these activities, because it gets us out of the house, and I feel more part of a community when I am around other kids like Carter.  DDI offers services like physical therapy, occupational therapy, speech therapy, child developmental specialists and more.  We had Carter evaluated at about 9 months of age, and he qualified based on their guidelines.  He was at about a 3-6 month level on most things.  So they set up appointments and started coming to our apartment.  That is the really nice thing about them, is that they go to your home.  They know kids are more comfortable in their own environment, and they will succeed more.  I also like how they write down goals and things to do until the next appointment.  It is super handy, organized, and I have seen the results.

Seizures Seizures Seizures

Carter has been having seizures everywhere it seems.  I remember thinking we were so lucky because he just had them at home around us.  NOPE!  He had one in the car awhile ago, and we were getting on the freeway on ramp and we had to pull over to hold him.  Sometimes he will stop breathing, so it's nice to be able to hold him and that seems to help him calm down.  Well, since that he's had one in the car when it was just me, and I had to pull over again.  No bueno.  So then I thought, as long as it doesn't happen anywhere else.  Well....then he had one in sacrament meeting at church a few weeks ago, luckily it wasn't too bad.  Then he had a few more at church, and sometimes he will cry really hard, so I had to leave to walk him around.  So guess where else it has happened?  The swimming pool!  We went swimming yesterday and he had a pretty bad one- we pulled him out of his tube and the pool, and laid him down.  He had stopped breathing, and of course the people there stopped to stare.  Luckily he was okay, and most people are super nice about it.

We are waiting to meet with the Ketogenic diet doctor in July; I hope we can start this soon and that it works.  I just keep thinking that if we can get his seizures controlled, then he can make some good progress.  I really want him to succeed and move around, I think he would feel happier and more independent.  You know that point most moms gets sick of, when their baby can sit up but can't crawl top get toys they want?  They have to be entertained because they can't move?  Well, I am stuck in this stage for a while.  Sometimes it sucks, but sometimes I am grateful for the chance to have my little guy be my little baby for longer.  He has been on Keppra, and now is on Phenobarbital and Zonisamide.  It seems like he takes a lot of medicine, but it seems to help at least a little.  Before being on medicine, his seizures were a lot scarier.  Some days I just wish all seizures would go away, I hear of soo many kids that have them and I hate them!  It just seems to slow so many kids down, and I hate that.  Oh well.  We will take it one day at a time.

Baby Items I Love/Unsure About

I wanted to write about some things that I have observed from having just one baby, that seems to have helped a lot.  Carter LOVED the bouncer he had, he used it for probably about a year of his life.  That may sound crazy, but it's because he couldn't get out of it and he was content to sit up most of the day.  I would prop it up against the couch, to make it higher, so he could sit up in it.  Most websites I researched said it was fine to use as long as the baby wasn't trying to get out of it.

Some other things that Carter has loved, is his swing.  I still use it surprisingly, and he still mostly fits in it lol.  use it only when he is really upset and needs soothing, and holding him isn't working.

He had just one favorite toy for a long time, and unfortunately I couldn't find a picture of it.  It was from WalMart, and it just spins as they hold it.  He got really good at it, and would do it for hours.  His therapist said that spinning is a learned movement, and some kids get stuck in that when they aren't sure what else to do.  He also loves his Oball rattle, that is a great toy.  I have been trying to get a bigger one from the Red Balloon store, because I want him to use both hands.

Carter really loves the water, as long as it isn't too cold and not in direct sunlight haha.  The two times I went to swimming therapy, he enjoyed it until she made him work hard.  We have taken him swimming serveral times as a baby, and hope to more in the future.  He also loves to go on walks and to be in the car.  I think babies in general like soothing motions, which a car, swing or going on a walk does.

Carter is also sort of a picky eater I guess you could say.  Kids with 1p36 tend to eat mushy foods until ages 2-3, so I guess I shouldn't be too concerned.  He LOVES his whole milk, especially when we put Carnation in it.  Don't worry, his feeding specialist said that whole milk with carnation is BETTER in her opinion, than Pediasure.  And cheaper.  When she heard I was using it, she said she loved me.  LOL.

Carter loves his baby jars of food still, which is good for us.  Since my husband works evenings, I don't cook dinner for just me.  I really should make meals and then blend them up for him to eat, but so far I stick with the 3rd food jars.  He loves the spaghetti and lasagna ones.

I discovered a cool thing from seeing another Mom shopper at WalMart-she had a shopping cart/highchair cover.  It was super cute, and good to keep away germs!  I bought one, and I've used it a few times.  It straps to the child, so I was hoping this would help keep Carter up in a shopping cart.  But alas, not so.  I do try to use it when at restaurants though, and sometimes he will sit in the high chair good.  I think it makes him feel more secure or something.

I also found an awesome toy at WalMart.  One of the times that Carter was hospitalized at Primary Children's, the nurse gave us this toy.  He didn't seem to care too much, but I bought one and put it up in his crib.  Now he'll push the button to turn on the noises and sounds.  It is super cute-on the main setting, this monkey swings back and forth, the fish bubble, and it plays jungle music.  Other settings dim lights or play different music.  I LOVE!!

Kind of a random post, I know.  I just wanted to share some of the things that Carter has enjoyed.  He has a saucer that he played in for a little bit and he liked it.  He has a bumbo, which seemed to help him sit up when he was younger.  After about 8 months of age he got too big for it.  He has a Johnny Jump Up that he doesn't really use, he will generally just twist around in it instead of jumping.  Since he can't support his head very well still, it's hard for him to both stand up and keep his head up.  He also has a walker, but he usually just slumps forward in it.  As you can see, we are still trying to discover new things/toys for him to enjoy and learn with.

Sundays and Incredible Dad

I wanted to write about Sundays, because it is actually one of the hardest days of the week for me.  We are all of the LDS faith, and our church is at 1:30 pm.  I have a hard time because it is right when Carter needs to nap and have lunch.  I hear ya, there are other Moms out there that struggle with that time too.  Sacrament meeting generally goes well, but he has had a seizure before during the meeting and a lot of people stared.  I know that people stare because they are either concerned or curious, but it makes it harder for me to keep things under control.  I am now the Primary pianist, so my husband Chris has to take care of Carter during Sunday School.  Lately, it doesn't seem to go so well.  Carter doesn't always nap well in our arms since he is getting bigger and older, so he pretty much just gets fussy.  If we make it to the last hour, Relief Society and Elders Quorum, we are lucky.  I'm debating whether to let Carter go to nursery, since he is 18 months old now.  I'm just not sure if I feel it's worth it or fair to make just one person take care of him for those 2 hours.  Since he can't crawl or walk, I fear he would be trampled by the other children.  Or that he will have seizures and they won't know what to do.  As long as I can get my calling in for that one hour, and we make it to sacrament, I think we are good:)  Sorry Relief Society if I don't see you much....that's just how it is.  You have to adapt life to your children sometimes.

I also wanted to praise my husband a little bit in this post.  He works full time making gun parts and assembles them as well as works on the machines that make the parts.  He loves his job, but I know it isn't always fun to go to work.  I am thankful for his hard work, and also how sweet and good he is to Carter.  I think some dads can get tired or frustrated with their kids more easily than moms, especially special needs kids, but my husbands is GREAT with Carter.  He loves to hold him, make him smile and laugh, and play with him.  We don't have a lot of options as far as playing with Carter since he doesn't move, but we still have fun.  I know Chris can't wait until he can take him on a bike ride, or go swimming again, or camping.  He loves to do things outdoors, and loves his little buddy to go with him.  I'm so thankful that he is good and patient with Carter, and it makes me love him even more.  Having a disabled baby has brought our little family even closer, and makes us love each other even more.  I love you Chris!!  xoxo

Changes in having a Disabled Child

I wanted to write another post describing more of the things we deal with day to day with Carter.  He is 32 inches long and 23 lbs 8 oz last time he was measured.  He is usually in the lower percentages for weight (surprisingly) and a little above average in height.  His head is always way off the chart in the negative, because it's so flat in the back.  I found that this is actually normal with kids with 1p36.  Because of the shape of his head, he still has a hard time keeping his head completely controlled.  Research says it should get better when he is 2-3 years old.  I think people notice that with him.  He has been a lot more wobbly lately when sitting up, and tends to fall over a lot.  I'm guessing this is because of his seizures, or perhaps he is trying to transition to lying down.  Who knows?  We have to keep an eye on him more now to make sure he doesn't fall off things.  This means he will never enter Nursery, which is sad because it makes church harder to attend all meetings.

I think probably the most noticeable thing about Carter versus other kids his age, is that he doesn't crawl or walk.  We may be using a stander soon, which is a device that will help him learn to stand.  It is almost like a weapon of cruelty, but it may be necessary.  I've been struggling with his therapy appointments lately, because it's hard to feel motivated when you don't see results.  I LOVE his physical therapist, she comes to our home twice a month.  I love how she points out the good things he is doing, and that she sees great potential for him.  She always gives good advice and goals for the next appointment.  I struggle with his occupational therapy, because it seems like we really don't do anything but play with toys.  Carter has always been particular about his toys, and doesn't play with everything.  He was fixated on a toy that spins for a long time, now he is finally branching out more.

We are probably going to try the ketogenic diet, anyone have advice on that?  He would have to be admitted to the hospital for 2-5 days as they monitor him and teach us about the diet.  He would be watched over by a neurologist, a doctor and a dietitian.  Sounds pretty intense huh?  If it stops his seizures, I think it's worth it to try.  It is low in carbs, normal in protein and high in fat.  Interesting...  Another thing Carter does, because he is behind in speech, he makes lots of LOUD noises.  It is not babbling, but just loudness lol.  A lot of times people stare, but we think it's cute.  He also involves his hands in this, as if he thinks they help him make the noises.  Pretty funny.  We are trying to teach him 'milk' and 'more' in sign language.  We may try speech therapy later on.

Carter now has a handicapped parking permit, which is nice for us!  We already have people asking if they can take him to games and stuff lol.  It does make it easier to park and get him in the store.  What some people may not have thought of, is that Carter doesn't have sufficient balance to stay up in a shopping cart.  So we use his stroller when going shopping in stores.  We get some stares, but overall it makes him more comfortable and our trips easier.  Another thing is that he doesn't do well in highchairs at restaurants.  They don't have enough support and he gets agitated in them.  So...we either take in his stroller, or get a booth and lay him down next to us.  Might sound weird, but it's the only way to eat out.  If he sits up in the booth, he'll bang his head on the table.  We also had a struggle with a forward facing car seat for a while, because he would slump forward a lot.  We got one that reclines, and now he seems more comfortable.  Interesting the changes it affects in our daily lives.

By talking to other moms with disabled children, I have some things I hope to do in the near future.  We want to get Carter a free gym pass at a place with an indoor pool, so I can work on swimming therapy with him.  We have an outdoor pool at our apartment, but it's in the sun and not very warm.  Lots of companies are supposed to give away so much charitable donations a year, and so I plan on writing different gyms to see if we can get free passes.  My other goal is that by getting a gym pass, that we can get in better shape.  I have used the excuse for too long that Carter's disability stresses me out, so I use food to deal with that stress.  It comforts me.  I need to get in better shape so I can better take care of Carter and his needs.  I also want to write the Apple company, and see if we can get a free or discounted Ipad 2.  They have some good apps on there that can help with speech or visual training.  Might as well try and see what resources are out there.  He is already on SSI Disability and Medicaid which has helped us a lot.

Diagnosis

Our precious Carter, just about 18 months now, was diagnosed the end of April with 1p36 deletion syndrome.  Our geneticist from Primary Children's called me and told me what he had, and then we went in the following Monday to get more information.  Most of what we found out was through websites and google.  Carter is missing part of a chromosome, and it is near the bottom where it is labeled 1p36.  This is what causes his seizures, his low muscle tone, his developmental delays and more.  I will share more of what this syndrome means as we go on.  As we researched his diagnosis, I felt like it fit him pretty well.  He is very floppy and hard to hold because of his low muscle tone, and he has always hated tummy time.  It was with a mixture of relief and sadness that we received this news.  Some of the statistics make me sad when I read them.  90% of kids with 1p36 will only learn a few words, and maybe 20 sign language signs.  The average age for walking is 3 years and 10 months.  They most likely won't crawl but will bottom shuffle instead.  Many have vision and hearing problems- thankfully Carter has checked out on that so far.  There are many more areas it affects, but I didn't look at those too closely since he had already seen the liver doctor, a cardiologist, eye doctor and hearing doctor.  Some checklists and high fives there!

I will tell you how our process began to finding this diagnosis.  Carter was born on his due date, December 8 2009 and everything went pretty well.  I was induced because I had high blood pressure towards the end.  As soon as he was born, we could tell something was wrong.  He was rushed away and ended up staying in the NICU at Jordan Valley for 15 days.  They told us he had pneumonia, possibly from aspirating fluids, but to this day I'm still not sure if that's really what he had.  He came home on oxygen for another 3 weeks, so 5 weeks total.  This was definitely not the easiest beginning to a new life.  As time went on, he was perfectly healthy and happy.  We noticed his head was flat, and took him in to a craniofacial doctor and they said he would grow out of it.  Well, at about 8 months, I took him back in and we fitted him for a helmet.  That was a fun 3 months, poor guy.  His head only grew a little tiny bit, so we stopped that.  At his 9 month appointment, his pediatrician asked me a lot of questions, and most of them I said no to.  He suggested we start Carter in Early Intervention Services.  DDI came out and evaluated him, and he tested at about a 3 month level on almost everything.  He is now at about a 6 month old level.

At about 10 1/2 months of age, Carter started having seizures out of the blue.  He had one so bad once that he stopped breathing, turned blue, and threw up.  I was alone at home and had to call an ambulance, while trying CPR on him.  I thought he was dead, because 5 min or so passed before anyone came.  Thankfully, after 30 seconds or so, they got him to breathe again. He stayed in the hospital about 4 days to recover; he slept most that time.  When we got home, we increased his medicines and continued working on therapy.  Now, the tricky part of seizures, is that when they are not controlled, he has a hard time progressing.  After over 6 months of Occupational Therapy, and a few months of Physical Therapy, he can roll over both sides (not all the way), and plays with more toys.  So during this process of discovering seizures, having a helmet and therapy, we got into Dr. Gooch at Primary Children's.  We heard through someone that she was great.  Her assistant got is in the very next week with a genetic metabolic doctor, which was great, because we would have been waiting longer to get in.  Also, I found a developmental pediatrician at this time, and she didn't know what Carter had either.

When Dr. Warnock met with me and my mom and Carter, she thought he had Mitochondrial disorder.  If you have ever heard anything about that, it is devastating.  I remember thinking it didn't sound like him, but that's what she thought he had.  After a series of tests, we got the approval from insurance (Medicaid) to run a chromosome test.  We were very lucky to get an answer so quickly, and to get into a great doctor.  I have found it takes persistence, and asking the right people to get in faster.  As you can tell, this has been a bit of a roller coaster.  Most every doctor we saw kept saying he had some kind of syndrome, but they didn't know what.  Carter's ears are low and stick out, and he doesn't always seem focused and paying attention.  I guess that is what clued them in that something was off.  I honestly thought my little guy was just fine, maybe a little behind.  He sat up at 8 1/2 months independently, and I thought that was about right.  He is my first child, so I had nothing to compare him to.  Once the seizures started, I think that's when we knew something wasn't right.

We have only had a little over a month to learn about this, and we are learning more everyday.  Our current challenges are trying to control Carter's seizures.  He is on 2 different medicines, and had a 3rd in the past.  He is at the maximum dose on both, so we are considering trying the Ketogenic diet.  Unfortunately it seems that most kids with 1p36 don't get their seizures under control.  Our other issue is sleeping time-he seems to wake up a lot at night, from seizures and from teething.  He also sees a feeding specialist to help him use different muscles, and we have done some swimming therapy.  We hope that by sharing our experiences, people can encourage us along this hard road, and also share their experiences as well.  I welcome comments and look forward to our accomplishments with Carter.