Carter's New Bed/Vision/ IEP/ Sleep/ Crawling

Carter got a new bed and it is awesome!  He was falling out or wedging himself in the side rails of his old bed and we were worried.  We tried two side rails and cushions at the foot of the bed but he was still getting stuck or flipping over the rail.  I talked to his nurse and they sent our insurance a pre-approval for a Sleep Safe Bed II.  I am not quite sure how long it took exactly but I'd guess a few months.  They approved the bed and we had it delivered and set up yesterday.  It definitely is a piece of furniture like they said, but so nice.  Here is a picture of his old bed and now his new one.

Old Bed

The new bed has a memory foam mattress, cool.  It's light and easy to pick up and put sheets on.  So it appears we got the nicest model that has a remote to control the mattress instead of a lever.  The entire mattress can levitate pretty darn high.  They said this is for changing diapers, getting them out of the bed etc so you don't hurt your back when they are bigger.  Good idea.  The headrest and feet can also go up.  It was kind of fun playing with it.  The remote also can lock so little hands can't keep playing with it.  Carter officially has the coolest room now.  Also, Daddy got him an early Christmas present.

Laser Stars is a laser star projector that displays animated stars, cloud formations and the occasional shooting star on the ceiling.  It's made with lasers- you can move it to where you want it to show.  It's quiet and so cool to watch.  We turn it on when Carter is going to bed and he loves looking at it.  We thought it would help when he wakes up so early to turn it on for him to watch. 

So Carter had an eye appointment and his vision therapist yesterday- he passed his eye test no problem.  The vision specialist, Sandra, said he still qualifies for services because visual problems are listed in his diagnosis, and he still has some delays and inattentiveness.  His IEP which means Individual Education Plan, is end of this month.  We are pretty much decided on having him go to USDB since the classroom is smaller, and will give him more attention and therapy.  I think he'll soak it all up.  I am also hoping he gets more tired doing more during the day and will sleep better at night.  His doctor seems to think his sleep problems come from his sleep apnea and that no medicine will help.  She keeps advising us to get him a cpap which I'm nervous about.  I guess if it means he'll sleep better it might be worth trying.  Darn, I wish he'd just grow out of it.  For now, 3am seems to be his wakeup call. 

Best news for last- Carter is crawling!!  I have tried multiple times to get a good video of him moving, but I always seem to miss the good one where he crawls faster and longer.  When he really wants something, he is pretty fast.  His form isn't perfect but he is not just scooting now on his bum.  I tried uploading the video for over an hour and it didn't work.  Sorry.

HAPPY HALLOWEEN!

Carter was the coolest pirate EVER in his ship.  We got the idea online and Chris built the body around his wheelchair from cardboard boxes we had.  So it could come off easily, he cut out holes and used string.  We also stapled some of the tape down.  Then I did the decorating with Grandma Thorup which took hours.  I used electrical tape on the lines to give more depth.  On the front left is a sign I got from Zurkers that says Be Very Afraid.  The front right has a pirate map, compass, and knife with eye patch.  Then the sides we cut out holes for cannons which are black felt paper.  I used a brown marker to make squiggly lines all over to look like wood.  The treasure chest in front was also from Zurkers and had fake coins and jewels in it.  We also used it for his treats!  We got three dowels from WalMart for the pirate flag which we taped on the back of his wheelchair and the back of the boat.  The wheel also came from Zurkers as well as the map, sign, knife, treasure chest and back flag.  The main flag I pulled out of the back of a Pirateology book I had.  Now that this is so awesome, we will probably use everything for his birthday party next month!  There was also some nautical netting on the back- we were going to attach an anchor too but it was too heavy.  We had to make this entire thing to come off, fold up in the car, and then reattach at my Mom's house.

Front right

Cannons

2 Flags

Front left

Ladybug Sierra

Can I be Blunt?

I try to keep Carter's blog mostly informational and uplifting but I feel I'm not being true to myself and my feelings.  As Carter's Mom I have a lot of ups and downs and I feel to share Carter's life I need to share those as well.  I don't want to get too personal but I feel by being blunt I can help others out there struggling to not feel alone or wrong for their thoughts.  Carter has for the most part been an easy child until he hit about 2 years old.  That is when we had a lot going on and he seemed to go through some sort of developmental stage/infantile agitation.  He had strep in October of 2011 and was hospitalized for a few days, then in November we started him on the Ketogenic diet for seizures.  About Christmas time he had developed this habit of screaming for an hour a day for no apparent reason.  At this time we also had decided to have his tonsils and adenoids removed to help with his sleep apnea.  Whether the increase of agitation along with the new diet, plus the surgery just put him over the edge- I don't think I'll ever know for sure.  But following his surgery (which I've already blogged about) he was in the hospital for like 18 days for complications and extreme fussiness.  He was not sleeping unless they pulled him in a wagon and he cried for hours a day.  Totally unlike him.  We finally took him off the diet and put him on Neurontin and Klonopin.  With about 3 months of dealing with this darkness, depression and anxiety (while being pregnant no less) I thought a few times of giving him up for adoption.  I often hit my breaking point and only continued because of a wonderful and loving husband.  I even went to counseling to work through my feelings.

I finally shared my thoughts with family and Carter's doctor, and that is when I started researching for respite care like crazy.  I wanted to be able to get help for when the new baby came so I could be with her and not have to focus on Carter so much like I had for years.  About the time Sierra was born, Carter had finally gotten back mostly to his old self.  His seizures had disappeared, he was smiling and laughing again and seemed mostly content.  I thanked the heavens for this fortune as I could focus on my precious new baby.  Both our mothers also took turns taking Carter so I could focus on the baby for about 2 months.  We also had about 8 months of no major appointments, no surgeries or hospitalizations.  I think God knew I had reached my limit and with the new baby needed things to be normal.  In this time of calm Carter has learned to scoot, roll all over the place, stretch and roll everywhere and now goes on all fours and rocks back and forth.  He loves his baby sister and even hugs her and tries to touch her often.  I felt like I had expressed my gratitude enough for the blissful months of feeling "normal" and having Carter happy and pretty easy again.  But in the last month to more the last week or so, Carter has been acting out again with screaming fits and crying fits.  He has now been waking up from 3-5 a.m. instead of 7 a.m.  He hardly naps which is normal but with his increased agitation and less sleep I am starting to feel stretched thin again.

A decision we had made in August was to move closer to family so in the case of Carter being difficult and me needing more help I didn't feel like I had to panic.  I have this tendency to think of flight when I am feeling overwhelmed.  My wonderful husband has allowed me several nights in the past of being alone while he took care of Carter so I could relax.  I've also had many girls nights so I am very fortunate in my husband and his care of me.  Being a Mom of a special needs kid has truly taxed me and been the greatest challenge of my life.  We are now just houses away from my mother in law and 10 minutes from my parents.  I'm not one to easily ask for help until I hit rock bottom.  I often complain more to my husband and doctor than my family or friends.  I want to appear strong and capable and a good Mother.  I often feel guilty for having feelings like this towards Carter but it's true.  I love him of course but many times I question the point of it all and why he has to endure this and me as well.  I am also very aware that as his baby sister gets older I have to watch my words and actions carefully as she will be paying attention. 

With preschool nearing in a few months I feel like for my sanity more than anything else I want to send Carter to the all day preschool.  He will still have 3 full days at home plus evenings and nights.  I think it would be beneficial to him to get more attention, stimulation and therapy while I can focus on my baby girl and nap if possible.  When sleep goes away, sanity is not far behind.  I am often amazed at how many mothers can do it, especially those in our 1p36 group.  I know there are many without families close by too and they are amazing.  What I've always wondered though if they have the same feelings I have but just choose to not share and stay strong.  Well, I don't want to keep silent.  I want to share my feelings at the risk of appearing weak or a bad mother, so I can be honest and help someone else out there struggling.  I thought I could handle a lot but when it comes to Carter, I fold pretty quickly.  He has a way of getting to me like no one else can.  I am not an amazing mother nor do I pretend to be.  I just try to get him the most care possible and everything he needs to compensate for the days I don't feel so loving or compassionate.  I hope one day to find that place inside where I can accept him and my situation with a happy and capable heart.  But for now, I still struggle and paste on a smile when all is not well.  Again I have to thank my amazing husband and Dr. Murphy who has helped me through so much with Carter.  They never judge me but listen and help.  Thanks for reading this.

Sleep Meds/ Shriners/ Resources/ Preschool

Carter has not been sleeping very well lately or rather, for months now.  He has been waking up at 5 a.m. and now sometimes wakes up between 3-4 a.m.  Ridiculous!  I finally got his doctor to put him on Trazadone to see if that would help him sleep.  We are still seeing if it works- we may have to try a few things.  Melatonin has not worked in the past, in fact it caused sleep terrors I think.  As much as I hate adding another medicine, I need my sleep to be a good Mom.

He went to Shriners today for his annual orthopedics appointment and his xray looked great.  The doctor was pleased to hear he is close to crawling and is getting on all fours.  Way to go!

I have posted on this blog quite a few resources I have found but I kept thinking it wasn't relevant to those outside of Utah.  I wanted to be able to share my information with others it could help.  Since there aren't many in Utah with 1p36 I decided to share my list with a friend in the ward that has a severely disabled child.  She had no idea about most of the resources and was excited at some of the things I shared with her.  I felt so good that I could help someone out!  Then she had the GREAT idea of typing up my list and giving it to her son's therapist.  Now that therapist is passing it around to all the families she serves.  I know it's not a lot, but it is something.  I was glad to hear my hours of research could help benefit other families.  It's hard enough having a special needs kid, so every little bit of information helps.

Lastly, we had Carter's preschool meeting last week with 5 women to get the information about preschool for Carter.  His testing is this month and IEP (individualized education plan) next month.  We are also going to take tours of the schools to see which we like best.  So we have two options, because Carter sees physical and vision therapy.  He can go to the elementary close by us by bus, 1-4 times a week for 2 hours.  It would be from 9-11:15 and would be a class of 10 or so with 1 teacher and 2 assistants.  The class would have a mix of peers so kids like him and kids more progressed than him.  He would be able to feel included but also watch and learn from the kids that can do more than him.  They would include him at everything- so if they were on the floor he would be too.  Our second option would be DSPD which is the school of the deaf and blind.  It sounds pretty intense but it serves kids with all visual delays not just blind.  That school is a little further away and has transportation by a van.  It would be 4 days a week all day, with smaller classes and a teacher and nurse.  The nurse would help with feeds etc.  He would have the opportunity to nap if he needed to. 

My first instinct was the all day school because Carter gets really bored at home with just me and baby sister and seems to crave more stimulation.  Plus at the DSPD he would get more OT, probably time in his stander and more services.  The only thing I'm worried about there is that it's so long and he won't have a variety of peers.  At Columbia I wish it was a little longer and I wonder if he would get enough attention in a bigger classroom.  I do like the mix of peers though so Carter can watch a variety of people.  Carter loves going in the car, is good in his wheelchair so I felt like he would do good either way.  I think once we take a tour I'll have a better idea of what is best.  I would appreciate any input from other families making a similar decision.  The ladies from the schools were almost fighting for Carter because he is so cute.  It made me feel good.  They really liked him and his sweet smile and personality.  They asked if I had any concerns and I said none.  They said that means we are both ready for this and I think we are.  I do want Carter to have time with his baby sister but I also think getting out more will be good for him as well.

Sleep Study Results/ Bed

To my disappointment, Carter's second sleep study showed that he still has moderate to severe obstructive sleep apnea.  This means he still needs oxygen when he sleeps because he is holding his breath or stops breathing many times per hour.  The oxygen concentrator in his room heats up his room a lot while it runs overnight, which I guess will come in handy during the winter. 

Carter's therapy has been fun- his vision specialist from Pip School of the Deaf and Blind brought moon sand one day for him to play with.  It took several tries but he finally loved it and even put some in his mouth.  It was fun to see him play with it especially since it came off easily.  I found the recipe online for moms that want to try it for some sensory play:
Ingredients:
9 cups Flour
1 1/4 cup baby oil
Variation: To make colored Moon Sand
We added 1/8 of a cup of Powdered Tempera Paint to the above recipe split into three so per 3 cups flour add 1/8 cup powdered tempera mix well and then add baby oil.
Variation 2: Make it Smelly
Add 1/8 of a cup of cocoa powder to make it smell chocolatey! Or add some Food flavoring extracts like banana, raspberry, strawberry etc. What ever you have! Or you can add koolaid! I add 2 to 3 packs per 1/3 of this recipe so you can create three different colors/ scents with one batch just split into thirds.
Directions:Mix and enjoy!
Below is another recipe for Moonsand although it will have a different consistency then the store bought. It is a lot of fun let me know if you give it a try
4 cups sand
2 cups cornstarch
1 cup of water
Mix and Enjoy

We are waiting on insurance to approve Carter for more aide services as well as a bed.  He has been in a twin bed with side rails for a few months now but still manages to get out or tries to.  We have two side rails and cushions at the foot of the bed to protect him.  I thought of just putting the mattress on the floor but I think he likes being up higher.  And a crib won't work he is just too long now.  We are ordering the Sleep Safe II Bed in cherry wood, here is a picture of it.  I'm kind of excited to get it.  Carter has been fortunate in insurance that we have been able to get a stander of our own (even though it's kind of scary), a wheelchair, bath chair, oxygen supplies, feeding supplies and food delivered monthly.  Soon he will have diapers covered too when he turns 3.  I feel blessed that we have been able to get what we need for him.  I also just bought some Gerber onesie extenders since his 3T onesies were getting too tight to button.  You can also get onesies 4T-6T at essentialwhites.com for about $10-11 apiece.

Therapy/ Photoshoot/ Zoo

Carter's new vision and physical therapist came and I felt like I already learned a lot from them.  Unfortunately, they will only be with him a few months until he starts preschool.  We kind of moved at a bad time it seems, because his yearly IFSP is coming up plus they have to do transition paperwork just when they are getting to know him.  He did pass the hearing and vision screening with the school district, we are just waiting on the rest of his testing now.  His vision specialist said she thinks he can see pretty good, but still has some delays especially with looking up.  She did think a lot of it had to do with his delayed motor skills.  She is trying to get us to teach him the sign more with things he likes doing to see if he'll communicate to us that he wants more.  We put him in a big blanket and swung him back and forth and kept asking him if he wanted more and tried putting his hands together.  He would either kick his legs or laugh, and at one point he laid down and laughed as if saying 'yes, swing more please!'  I will have to pay attention to his signals because it looks like he is already substituting signs for his own.  His physical therapist wants us to put him up on all fours whenever he is on his tummy so he learns to not just roll out of his stomach position but that he can get up too.  Currently he gets on his knees, almost all fours, and rocks back and forth a lot.  It looks like he'll be crawling here soon.

We went to Gardner Village a week or so ago and took some cute pictures of the kids.  Here are a few I liked.

We also went to the zoo and Carter just loves being in his wheelchair.  He rocks back and forth as if to push it to go faster.  We took the train and got some cute pictures. 
On another note, Carter has been waking up at 5 a.m. and it's been really hard.  He still goes to bed at 8 p.m. but like a little clock he is up by 5 or 6 at the latest.  I am so not a morning person so it's really hard to be positive in the morning.  I sure hope he starts going back to sleep for longer.

More Good News

I am so thrilled with Carter!  All of his doctor appointments lately are like a breeze and they are all SO happy with his progress.  His neurologist didn't even spend ten minutes with us because she had nothing to do.  His rehab/pediatric doctor today was beyond happy to see him laughing and smiling.  She looked him all over, reviewed his meds and current status.  Dr. Murphy reported that there was nothing she would change and that she was so pleased.  She congratulated me on my hard work and taking care of him.  It was so nice to hear from a renowned doctor that she wouldn't change anything and was so pleased with him.  It made my day!  I feel I am reaping so many rewards for our hard work last year, and that Carter is being blessed with a body that can move more.  Although he still can't communicate beyond grunting or shrieking or body language, I feel that I know for the most part what he wants or needs. 

She also predicted a long life for Carter because he is so healthy and has no respiratory issues, good lungs and a good heart.  He has no scoliosis or anything wrong with his bones.  She is excited for him to go to preschool in December and get out and be around other kids like him.  There are days I get down thinking of just the negative in life, but right now my heart is bursting and full.  God has truly blessed our family and I am so thankful.  Carter passed his vision and hearing screening with the Jordan School District.  They all thought he was so cute.  He is still scooting, getting up and down, rolling all over, stretching and now turning in every direction.  Good work buddy!!  We love you!  P.S.  Just please don't get over your side rail in bed anymore.