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Sunday, December 23, 2012

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!!

Monday, December 10, 2012

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!

Wednesday, November 14, 2012

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.

Thursday, November 1, 2012


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

2 Flags
Front left
Ladybug Sierra

Wednesday, October 10, 2012

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.

Tuesday, October 9, 2012

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.

Tuesday, September 25, 2012

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:
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 for about $10-11 apiece.

Tuesday, September 4, 2012

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.

Thursday, August 23, 2012

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. 

Wednesday, August 8, 2012

Sicknesses/Moving/ Sister

Carter has been sick twice since entering Nursery.  Coincidence?  Had got a cold that lasted about a week and thank goodness for his suction pump that helps a lot.  He still can't cough well enough to get the secretions out so it just sits in his chest or nose.  Sierra seems able to handle whatever has come his way so far, she just gets little sniffles.  Now Carter has hand, mouth and feet virus; a common viral illness.  He has red bumps on his ankles, wrists, chin, around his mouth, back of his neck, legs and bum.  They don't itch but they look irritating to me.  His throat is bright red with some sores.  Thankfully the poor guy seems okay so far (crossing fingers).  I am giving him ibuprofen for discomfort and fever.  I just have to wash my hands often to keep from getting it or spreading it to Sierra.  His hands are always in his mouth as well as hers, so I can see why they picked something up quite easily.

Carter also has a small fungal infection around his G Tube site.  It had an odd smell for awhile and then started looking red so we saw the GI doctor last week and he put him on an antibiotic to get rid of it.  Carter was being super fussy for awhile so I guess all of this makes sense.  We are doing a sleep study next week to see how the tonsillectomy and removal of his adenoids went back in December.  Hopefully over the past 8 months there has been progress and maybe he no longer needs oxygen at night.  We'll see.  We also moved into the top part of a home we are renting and it's been really nice having more space.  The kids each have their own room, and the stairs are few and much easier to get Carter in and out.  It's been nice to be in a neighborhood with family close by and a great ward.  There are several special needs kids in the ward so I feel right at home.  So far everyone is very warm and welcoming.

  I know this blog is about Carter, but I also wanted to share some information on his little sister Sierra.  She is after all, a big part of his life now.  Sierra is a little over 3 months old and so cute.  Everyone is always saying how beautiful she is and it's true!  She loves to stare at her big brother and smiles often at him, and he reciprocates.  Melts a mother's heart.  She is already rolling to her sides and has rolled off of her stomach.  She lifts up about 90 degrees on her stomach, stands and bears weight on her feet.  While I hold her hands and lift her she keeps her head up super well and then stands up.  She is grabbing and holding toys and touching things.  She sits up supported quite well and has great tracking and eye movement.  It has been amazing to see all these things in such a little one.  She babbles all the time too and makes all these cute noises.  She smiles constantly and has laughed out loud a few times.  It takes some work to get a full out giggle.  According to What To Expect The First Year, she is right on developmentally if not a little ahead.

Having a baby girl and one that is so healthy and smart has been such a blessing for me.  Carter has been a struggle in different ways for so long that I feel like this is my reward.  She has really brought such warmth to our home already and made me so happy.  I feel like I finally know what it's like to be a mother that LOVES being a mother.  Everyday is such a joy and not just hard.  I feel that having her gives me enough of a diversion that I'm not constantly consumed with Carter.  It gives me more balance so that I feel more optimistic.  I admit I still get frustrated with Carter when I don't know what we wants, but I remind myself that I need to be careful how I act towards him.  Sierra will be a mother herself one day and will take her cues from me.  I want her to love, respect and stand up for her big brother.  So as his mother I should too.  It's normal to be with the baby more since she needs more, but while she takes her big nap it's nice to have one on one time with Carter too.  And I find that all the games or noises I do with Sierra makes Carter laugh too, even if he is across the room.  Here are some pictures of our lovely baby girl.

Monday, July 23, 2012

Nursery and School

I love this picture of Carter in his wheelchair he looks so happy.  Plus I love his little teeth:)  Carter went to Nursery for the FIRST time yesterday at our new ward.  He fell asleep in his wheelchair so we just wheeled him in.  They never came to get me so I guess he did good.  I was excited for him to go because well....he is 2 1/2 years old.  And the nursery didn't look very crowded, plus there are other special needs kids there as well.  Carter loves watching other children so I bet he had fun.  Plus children always take an interest in him because of his wheelchair or just him.  I can't count how many times I've heard a little kid, smaller than Carter, point to Carter in his stroller at the store and say "baby!"  LOL.  Nope, not a baby. 

Carter and I start meeting with Jordan School District next month to get school started for him.  He will start going to preschool when he is 3.  It's usually a few hours a day a couple days a week.  They will pick him up in the bus in his wheelchair which straps right in.  Seems crazy that it's so soon.  December he'll be 3 and going to school AND Primary.  Wow.  He sure is growing up fast.  He has been such a mover lately it's crazy.  He is scooting all over the place I just seem to miss the part of him actually moving.  He is getting into stuff now so I guess baby proofing is coming up.  He is constantly getting in new positions, some of which leave him frustrated and in need of assistance.  Carter can get up from his back, he has even somehow moved his side rail in his bed and fallen out.  Yikes!  He sure is strong and determined when he wants to be.  He is 30 lbs and 36 inches or so long.  He is still G Tube fed with PediaSure and is doing great with that.  People seem curious if he'll ever eat again.  I'm not too interested in pressing that issue right now with a new baby.  Perhaps in a few months we'll do another swallow study and see where he is at.

Since we moved, Carter is in a big boy bed now.  We are also re-starting vision services, physical therapy and aide services.  I am also going to have him do another sleep study to see if he needs oxygen at night anymore since his tonsillectomy.  I put everything on hold for a few months with new sister, but we are picking things up again.  These past 6-7 months have been so nice without seizures and doctor appointments.  I actually felt normal for the first time in awhile.  I am so thankful everyday he is healthy and seizure-free.  His neurologist was so pleased with his progress that our appointment only lasted 5 min.  I was so excited.  He still has his temper tantrum moments when frustrated and still wakes me up early, but otherwise a great kid to be around.  His smile and laughter is infectious. 

Tuesday, July 3, 2012

Sierra's Blessing & Poem

Carter's little sister Sierra was blessed this last Sunday and we got some very cute pictures of our little family.  Carter has been so cute with her, he tries to touch her and they stare and smile at each other.  So tender.  He is putting his hands and things in his mouth again, the therapist says that's great.  He is still doing well and getting so big.

Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
20. Because, well, you tell me.

Wednesday, May 30, 2012

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!

Monday, May 7, 2012


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?

Tuesday, May 1, 2012

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.

Friday, April 20, 2012

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!

Monday, March 26, 2012

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.......

Wednesday, March 14, 2012

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.

Monday, March 5, 2012

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.

Thursday, February 16, 2012

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.

Tuesday, February 7, 2012

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   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.

Tuesday, January 24, 2012

Update on Carter

So Carter was in the hospital for 18 days, including surgery recovery.  Holy cow!!  For those that didn't know, after Carter had his tonsils and adenoids taken out he came home for the weekend and cried constantly.  We tried Tylenol and Loritab and nothing seemed to help him.  He literally cried day and night when he was awake.  Nothing comforted or helped him.  By Monday morning we were both so exhausted and frustrated, we took him into the ER to see what we could figure out.  The ENT docs came and looked at his throat, and said it looked like it was healing fine and he shouldn't still be having that much pain from it.  They tried a dose or two of morphine and it helped him calm down a little that he could nap.  They ended up admitting us after an xray showed that he was very constipated.  They started a bowel clean out that Monday evening, along with enemas and suppositories.  By Tuesday afternoon he was pretty much cleaned out, which another xray showed.  Still Carter was crying and very fussy, which is super unlike him.

Over the next week or so, the doctors tried various tests to see what was going on with him.  They did an ultrasound of his stomach to see if things were twisted inside out, a scan of his brain, they tested him for kidney stones, they tried morphine and Tylenol for pain, they tried Ativan for anxiety, etc etc.  Wednesday he was pretty bad and cried a lot, so by Thursday I took the day off from the hospital and let parents take their turns.  Most of the nights there at the hospital, they either had to wheel him in a wagon all night long to get him to sleep, or he woke up multiple times crying.  I was discouraged to hear and see he wasn't getting much better.  Everyday showed little improvements, but he was still not like my Carter.  My Carter generally slept through the night, napped here and there, was very happy and chill and relaxed.  We could go to the stores, pretty much anywhere and he was pretty good.  We did have the occasional mishap with church and such, but when he cried it was always manageable and contained within 30-40 min.  He never cried just to cry, on and on for no apparent reason.

By Sunday I was pretty frustrated, depressed, and devastated to see my little boy changing so much and I had no idea why.  The doctors had no medical reason to explain this change in him.  We saw so many different specialists I can't even remember.  I even emailed a doctor in Cincinnati that has dealt with numerous 1p36 patients to see what he thought, and he made some suggestions.  I did research online, I asked my 1p36 family on Facebook for ideas, I prayed, I cried, he received blessings, his name went on the prayer roll multiple times....on Sunday they started him on a low dose of Neurontin.  It is a medicine that is supposed to help calm nerves down and make them able to deal with their environment and surroundings more easily.  It takes 5 days to even see if the dose is working, which was frustrating to hear.  The doctors started to mention discharge almost everyday to get us ready to go home.  I was not ready yet.  Over the 2-3 weeks since his surgery and this change in him, I had entered a dark place.  I was experiencing depression all over again, similar to post partum.  I was no longer confident in my abilities as a parent, I was scared of Carter and of being around him, scared of his crying/fussing.  I was not sleeping well, I was stressed and not doing well.

On Wednesday they discharged us, because they had no medical reason to keep him there.  We met with Dr. Nancy Murphy that morning before we left and took a tour of the South Davis Community Hospital.  We now had two options- go home, or have Carter enter this hospital until he was completely better.  After taking the tour, I felt even more depressed and felt impressed that he should come home and see what happened.  I was so nervous to bring him home, I literally was shaking and crying a lot of the time.  It might sound dramatic, and I'm sure being pregnant had a part in my emotions, but I was terrified.  It was like bringing a newborn baby home, feeling like we were starting all over again.  Not knowing what to expect.  I have had my Carter for 2 years and he was never like this.  It was scary.  My mom came over the first two nights he was home to help me get him in bed.  Each night he cried to go to sleep, but it got less with each day.  He seemed scared of his crib which was weird. 

He has been home 6 days now, and things have improved but are still not back to "normal".  I feel like I've had to re-introduce him to our apartment and his home.  I've had to re-teach him to go to sleep in his crib, to self soothe, to try and get back on schedule, to take naps again, to go places and run errands, be around people etc.  Everything has been kind of like trial and error since bringing him home.  I was scared the first time I vacuumed, the first time I used the blender, the first time I laid him down for a nap, the first time we went to the store,etc.  Might sound silly, but I was literally walking on eggshells.  I keep saying knock on wood, but he is sleeping better at night.  He will go down about 7:30-8 and will fuss for a bit, then falls asleep on his own.  I now use a nightlight to help him feel more comfortable.  He will wake up once or twice to cry but self soothes himself.  I don't go in at all.  He is waking up more happy, whereas the first few mornings he seemed grumpy and disoriented.  I am still working with him on naps- he still resists them and won't do it for very long.  Then he is tired all day and rubbing his eyes.  By 4 pm he is pretty grumpy the rest of the evening, which is hard.  He needs more entertainment, scenery changes, attention and coddling.  While I know that things are much improved, I want my old Carter back.

We increased his Neurontin last Friday and may do so again if we continue to see it helps.  The other thing I've always wondered in the back of my mind, is that this ketogenic diet he started in November affected him.  We don't really see seizures anymore which is fabulous, but maybe because of that new awareness he is getting sensory overload and isn't able to handle his environment as well anymore.  He is more sensitive and touchy- if things don't get better we may consider taking him off the diet.  That would be a last option though, because he has made more improvements.  He is more aware, he looks at people more and tracks them, he smiles and laughs a lot.  These are all great, but then you have the increased fussiness in the evening and the no naps and the occasional rough night.  The doctors seem to think he is experiencing some kind of neuro stress, which really is not a great explanation because who knows how the brain works?

I am trying really hard to remain positive, focused and patient.  I am trying to put myself in Carter's shoes and to really comfort and be there for him.  It has been hard because I am emotionally drained, still depressed and scared, and big pregnant.  I feel like I haven't taken good care of myself, I don't eat or drink enough and I haven't gained any weight with this pregnancy.  I am 26 weeks and still 5 lbs less than when I began.  I find that I am always anxious, not sleeping well, and very antsy.  I hope with time this will get much better.  If it weren't for my husband, I am sure I would have thrown in the towel by now.  He has been amazing.  My family has also been very supportive.  It's hard for me to have a special needs child that I can't talk or reason with, and now feeling like he has a completely different personality--I feel pretty overwhelmed.  Take it one day at a time right?  Please keep praying for Carter's continued rest and well being, and my emotions to even out again.  I want to feel happy and hopeful again, but it feels far off still.  I don't think anyone can really understand unless they've been through it too.  I will try to keep the blog updated, and hopefully the next post or two will be much more positive.

Thursday, January 5, 2012

Tonsillectomy from Hell

So I have been needing to vent about this surgery for quite some time, but gave it a few more days to see how things progressed.  Carter had a tonsillectomy and also had his adenoids removed last Thursday- a week ago.  He has been in the hospital ever since- yes, a week.  We decided to go forward with this surgery because we heard it helped other 1p36 kids with sleep and not needing oxygen anymore.  This was our big hope, because at home Carter will rip out his oxygen and just freak out.  I finally got to the point where I said no more, it's not worth it.  He isn't on very much, so we stopped putting it on him at night because the fight just wasn't worth it.  So we decided since we weren't putting the oxygen on him, that we better do something.  The ENT doctor made it sound like surgery was the only other option.  We picked a day that worked for us, especially since Chris was home from work for a bit and could be there to help.  We knew Carter would have to stay one night, but 7 so far??

Carter has had anaesthesia a few times before, and usually woke up fine within a few hours and a little cranky but not bad.  Well, I guess as soon as he started coming to following the surgery, he kept crying, holding his breath and was turning completely blue.  He does these breath holding spells at home occasionally, but it sounded pretty bad.  The nurses were all pretty scared so they sent him to the PICU for further care and observation.  Usually the parent can go see the child pretty soon after surgery in the recovery room and then follows them to their assigned room.  Well, we weren't able to see him for an hour or so and then it was in the PICU.  They are able to give a higher flow of oxygen there, as well as more personal care.  He looked pretty beat up when we saw him, his lips were swollen and bloody in the corners.  So what has happened since?  Well, Carter was in the PICU, with one night on a bi-pat machine, until Monday morning when they transferred him upstairs onto the floor.  After 2 days there, they worried about his work of breathing and tiring out, so they sent him back to the PICU for another night.  Today he was sent back up to the third floor, but nothing is really progressing.

Carter has pretty much been asleep 24/7 since the surgery- he will wake up time to time but not very long.  His work of breathing looks better not as fast, but he still seems to need some oxygen to keep his stats up.  My frustrations have mounted over this week because no one has any idea what is wrong, why he is taking so long to recover, why he is so sleepy, and on and on.  I have liked being in the PICU because the nurses are really there the entire time, their patient load is usually just 1 or 2 patients, and they seem to position him better, suction him when needed, and overall take great care of him.  On the floor, the nurses only come in if he needs to be fed, changed or medications.  I have been frustrated because we are constantly asked the same questions over and over; Carter has been the same for days and isn't progressing or necessarily getting worse, and we are just plain sick and tired of being at the hospital.  Fortunately, we do go home at night to sleep, but being pregnant is always a laughing game when it comes to sleep anyway. I am going crazy being there 12 hours a day.  We have taken some breaks here and there, but I don't even feel like going up anymore unless he is coming home.  I'm not helping any, the nurses are there to take care of him.

His x rays have showed some fluid, which at first they thought was pneumonia.  Now they think it's post obstructive edema, meaning his lungs reacted to the surgery by filling up with fluid.  They have given him stuff to help flush that fluid out, but unfortunately, since the surgery was in his throat, he can't handle the new secretions that are there.  They have to suction him to help him clear his airway.  This really makes him mad, as I'm sure it would anyone.  It's just been really hard to see Carter suffer, when we thought this would be something helpful to him.  We thought it would help him sleep better, not need oxygen, and overall have more room in his airway.  But if anything, everything looks so much worse.  The swelling should be down by now, it has been a week.  I just don't get what is going on.  I want to come home, even if we have to do oxygen at home, but the nurses seem to being careful.  It's just a long waiting game, and is starting to remind me of his time in the NICU as a newborn.  Super stressful and frustrating.  I feel like as a parent we should have some say in his care, which we do have some, but it seems like nothing is happening.  Even if we came home with oxygen I know Carter is just going to rip it out constantly.  Tonight up on the floor he seemed to be waking up more, and was back to his crying spells, freaking out and not wanting to be touched.  It's so frustrating to not be able to help your child or touch them.

I just feel like we made a horrible decision by doing this....I don't know if it will pay off one day, but I am sure super frustrated.  I have lost my patience with all the different nurses and all their questions, which are the same day in day out.  I am tired of eating cafeteria food, of driving up there everyday, of not seeing the sunlight.....I could go on and on.  (my parents did take over for me last evening so I could go home and get things done, and we've run some errands but I hate feeling trapped.)  I know there are worse things out there, much worse, but I sure don't feel positive at all right now.  We have been up at the hospital the last 3 months in a row for almost a week each time, each month.  So you can see why I'm starting to hate this place.  It's just funny how doctors don't really ever have the answers, especially when it comes to a complicated kid like Carter.  People tell me to be positive, but they have no idea what it's like.  All these things we have been doing have been to help Carter and his quality of life-- but sometimes it feels like it really sucks everything out of me.  I had to vent, I hope it makes me feel better after, just a little.  Hopefully we can come home soon, and without any oxygen.  And I also hope Carter's mysterious crying fits/blue spells and not wanting to be held go away.  We need answers.