Dentist, Bi Pap, Preschool and Primary

Carter came home the day after Christmas, and let me tell you, getting his bi pap was ridiculous.  Since they call it a ventilator on a bi pap setting, I guess it's hard to get.  Apria was giving us heck to get it and we had already waited weeks, so the nurse manager finally went with Petersons for the equipment.  I wonder if we could have had him home for Christmas if they had switched companies earlier.  He has been more touchy and fussy since being home- he doesn't like me laying him down or touching him much unless it's deep pressure touches or holds or hugs. 

Carter went to the dentist yesterday after like 8 months, and he has two cavities! We were all surprised, trying to figure out how since he doesn't eat by mouth.  All we could think is that he throws up sometimes and has reflux, so perhaps the bacteria spread then.  He does have a lot of tartar around his teeth making them look yellow, but the dentist thought his gums and everything else looked great, and said the tartar can serve as a protectant or sealant.  He grinds his teeth a lot, but they also said his teeth look fine still.  So next week, I have to take him back and they will put him in a papoose, poor thing, and a restraint on his head so they can fix the cavities.  I feel so bad for him.

The bi pap is not my favorite, but neither was his feeding tube when we started out with it.  Carter's bi pap is a relatively small machine that we just put on a shelf, and we put distilled water in it for the humidifier.  The mask is small and just covers his nose, and we try to slip it on when he is asleep or close to it.  Then we turn on the oxygen to give him extra support.  So the bi pap delivers pressure to keep his airway open so it doesn't collapse or "obstruct", and then the oxygen gives him extra breaths per minute.  He was doing pretty well with it until the past three nights.  He wakes up once or twice trying to get it off, and some nights we give in because we are so tired.  He still seems tired and mellow during the day, so I'm not sure how much better sleep he is getting.  I follow up in the bi pap clinic next week so hopefully the card in the bi pap machine, which can show his sleep patterns and how well he is sleeping, can tell us how he is doing.

Carter has been to preschool four times now, and the teacher and nurse said he is doing great.  The van picks him up at 8:20a.m. and drops him back home at 4p.m.  The school is USDB which is Utah School for the Deaf and Blind.  He has six other classmates, one nurse, one teacher and one teacher's assistant.  They send a notebook back and forth everyday with notes on how he did, and a handout with goals and pictures once a week.  I treasure looking at these handouts and seeing how happy he is.  Once the van gets to the school, the teacher is right there to meet them with a wagon where she puts four kids in and wheels them up to the portable classroom.  So I send Carter with a hat and coat to keep him warm.  And he has also had to wear shoes, which he isn't too sure about.:)  We had an extra car seat, so they keep that in the van to transport him with.  They don't want his wheelchair since he doesn't use it a lot, so we keep it at home.  Right now he is going on Mondays and Wednesdays, but in a few weeks we'll go up to Monday, Tuesday and Wednesday.  And then eventually to all four days a week, M-Thursday.  I send him with his feeding supplies in his backpack, and diapers, wipes and food.  They keep his medicine in a fridge locked for the nurse.

A lot of people ask me if I miss him, and I do.  But honestly, Sierra keeps me so busy that the day flows by so fast.  She is crawling all over, pulling herself up, babbling and following me everywhere.  No peace for me anymore!  I tell people that Carter is much easier than Sierra in the day-to-day care, because he is so mellow and just plays with his toys. 

Carter is 3 and it's January, so he starts Primary this Sunday.  He also has a welcome party tonight to meet his teacher and see where his classroom is.  It's crazy how many changes are happening for my little ones.  Carter in school and primary, and Sierra crawling and soon to be walking.  I am one busy momma!

Life Flighted

So Carter got RSV and a bacterial pneumonia, which landed him in the hospital Monday night.  He had a temp of 104 and was breathing really fast and hard- which is called retracting- so we took him to Primarys at Riverton.  They admitted him and upon visiting him the next day, decided he was again breathing too fast.  They gave him as much oxygen as they could there, and then decided to have him life flighted to the Primary Children's in Salt Lake.  This was the first time we had taken him to Riverton instead, and I guess I learned my lesson ha ha.  I was able to ride with him on the helicopter which was scary but also cool.  It only took 7 minutes to get there and he was taken to the ICU.  They started him on the bi pap and it took until Friday evening to wean him to the cpap.  He has been treated with antibiotics, fluids and oxygen to help him recover.  He is now being transferred upstairs to the floor, which means improvement.  He won't be home for Christmas unfortunately, but we know he is being taken good care of.  And he is improving which is the best outcome. 

We haven't been in the hospital for anything major in a year, so I wasn't too panicked.  I am grateful he didn't need to be intubated and has improved.  It is harder now with my daughter and having to switch between being with kids.  We've had great family and neighbors helping us out and I know many have been praying for him.  They have been felt.  Not only are they still trying to wean him to room air during the day, but we are also still waiting on his bi pap equipment and ventilator.  Since he has been so sick, they won't let us go home until we have it for him at night.  So we wait.  I had a pulmonologist came talk to me about Carter, and she kind of freaked me out.  She told me that kids that need a bi pap at night also end up needing it during the day as well.  So then the decision comes whether he is ok wearing the mask all the time, or if a trache would be better.  They want him to follow up in their bi pap clinic to make sure everything is going well.  Also, while he was at the hospital, they switched out his G Tube button for a smaller size.  My husband has been sick during this time, and also, Sierra started crawling.  So it has been both bittersweet and busy around here.

I am hopeful for Carter coming home later this week, and that he'll be ready for preschool and Primary in January and will have a good healthy year.  I hope as he gets older he will also get stronger.  Merry Christmas to everyone and a Happy New Year!!

South Davis & Carter's Birthday!

Carter went to South Davis Community Hospital in Bountiful for a cpap trial run.  They told me it would take up to a week to get the settings right.  We took him in on Friday the 30th and dropped him off with some clothes, toys and his wheelchair and medicines.  South Davis is different than Primary Children's in that the patient share a room unless very sick.  Carter's room was right across from the nurse station so they could keep a better eye on him.  The first night they conducted their own sleep study with blow by oxygen to see how he did.  The nurses checked in on him repeatedly and didn't physically notice any de-sats (this is when the oxygen level goes below 90) or obstructions.  When the respiratory therapist read the study, it did show desats and obstructions at 20 per hour.  So the next night they put a nose cannula on Carter at 2 liters and did another sleep study.  He did better, so then the third night they started the bi-pap mask.  It is similar to the picture shown above.  Over the next several nights they adjusted the settings and got Carter used to wearing the mask when sleeping.  Most nights he slept pretty good until 6 or 7, and it took them 3 tries each night to get the mask on to where he was ok and sleeping.

We were anxious to go home as it was Carter's birthday on Saturday and he starts preschool the next week.  They let us go home on Friday, after a week there, with the understanding that the bi pap Trilogy and concentrator would be delivered that day.  Some confusion followed when the company called me and said they wouldn't have it in for a few weeks, if insurance approved it at all.  Hopefully they will, because now we have a week's worth of studies to show he really needs it.  The interesting things I learned about sleep apnea was that it's a 50/50 chance they will either grow out of it or have it forever.  Anyone can have it, even babies.  When your oxygen level decreases or you have an obstruction, your heart rate increases to make up for it and your body is working harder to breathe.  Carter hasn't been sleeping well for a long time now, and his little body has been working extra hard.  This might explain his sleepiness during the day as well as waking up multiple times and early.  It disrupts his sleep patterns and he doesn't get a good, deep sleep.  I hope this helps when we get the equipment, and that he tolerates it fine.  The last few nights at South Davis it just took them one try and he went to sleep.  They were really impressed how well he did with the mask.  Even if he woke up to play for a little bit, he wouldn't try taking it off.

South Davis was kind of a neat opportunity for us to visit the facility and see how nice the staff and nurses were to Carter.  Some kiddos are there long term because they don't have family or their health issues are so extreme.  I was only able to visit 4-6 hours a day because Sierra was with me and was too feisty and there just wasn't a lot to do.  The whole nursing staff told me everyday how much they loved having him, how sweet and cute he was, and how much he laughed.  I was glad to hear he was happy there and well taken care of.  It's nice to know there is a place Carter can go if we don't want him to come home yet or don't want him going up to Primary's.  I was very impressed with South Davis, and I'm a close friend with the director Dr. Murphy.

Carter turned 3 on Saturday!  We decided to throw a pirate party because he was a pirate for Halloween and we still had some cute supplies leftover.  I bought Carter this shirt from Gymboree because it had a cute pirate ship, island and monkey on it.  Perfect.  We had a great turnout that we were quickly running out of room and people spread down the hall and to the kitchen and dining room.  The cake was adorable and so yummy.  Carter was spoiled with lots of toys and cute clothes.  I was especially surprised and grateful for friends that came, one in particular was Melanie and Whitney.  They live close by and Whitney also has 1p36.  It was a treat to have them come and have my family meet them.  This is a picture with a bunch of kids and it looks like Carter is smiling at Whitney. 

We played pin the flag on the map and the kids got bubbles- I also had party hats or eye patches for those that wanted to wear them.  It was a fun party!

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.