Lake Powell!

We went to Lake Powell last Thursday thru Monday.  Short trip, but long enough with kids!  It took us over 7 hours to get there with stopping twice, and the kids did great with the drive.  We took a barge to the houseboat First Run at Wahweap slip.  This is a new houseboat share for my parents, and it was smaller than the last but newer and nicer.  We had AC all night as you can hook up the boat to their stuff.  We did one boat run then had dinner and got kids to bed.  Carter did....well, horrible every night we were there.  We tried to keep him quiet with toys in his own room like we do at home, but he woke up at least 4 times crying.  Chris had to sleep by him to keep him quiet for everyone else.  There are 4 bedrooms and we had him in this mini little cave room downstairs.  It has a low ceiling and one bed on each side, with curtains to keep it private.  We tried Sierra on the other side once but he woke her up.  The second night we kept him down there alone, and Sierra in her pack 'n play in one of the bathrooms.  Chris and I slept in the master, my parents in the front room or other bedroom.  We did this arrangement 1 more night, then put Carter in the front room the last night.  My brother and his friends slept on top. 

1 night was so terrible because my dad didn't keep the generator on for the AC, so it was in the 90s and we could NOT sleep.  Surprisingly the kids did, which worried me, but it was a long and horrible night.  The days were in the 100s and so hot.  Even the water was pretty warm.  To keep the kids cool, my mom brought a pool that we kept on the back deck for the kids to play in.  Carter only went in the lake once in a tube, and that didn't last long because he kept leaning forward.  Made it hard to hold him and swim.  He did great on the boat, always fell asleep right away with the rocking.  We called him the nocturnal bat because he napped so much during the day.  He was an angel during the day, but the nights were pretty terrible.  I took Sierra on a tube once, and she enjoyed being in the water or the pool.  She was everywhere so we had to emphasize to everyone- keep the doors shut!  So scary to have little kids that can move at Powell.  We had to be very vigilant. 


The best parts were tubing, wave running (a new addition with this house boat), just boating in the canyons, swimming, watching the guys rock jump and put lizards to sleep.  They do this by shooting them off the rock walls with water guns, then grab them and rub their bellies.  They fall asleep on their backs, paralyzed.  Then they return them to the water safely.

My dad also drove in the boat around us in the open water really fast, just doing circles to create huge waves.  It is so fun!  We call it the devil's cauldron.  We also had a great time playing b.s. and spoons at night when the kids were asleep.  We also floated on blow up mats and went down the slide on the house boat.  Sunday evening I was out on the wave runner with my mom, and we hurried back when we saw lightning.  Just before reaching the houseboat, the water became white caps and super wavy.  It became a very windy storm speeds up to 60 we think.  A few boats nearby us in Warm Creek were tipped over and ski boats were even halfway sunk.  As soon as it calmed down, my dad and the 3 boys went off to help people.  We ended up reuniting a mom with her son by driving her about 30 min.  We were lucky that the houseboat didn't drift away and nothing was broken.  The boys were all busy digging the anchors in deeper and tying everything up tight.  It was an adventure of mother nature.  We discovered that Sierra LOVES red vines licorice and has good sea legs.  She can walk around just fine when the boat is swaying.  So cute!

We did have an accident with Carter which was very sad.  I was vacuuming the last day before leaving for home, and Carter loves to come up and touch it.  He always gets close to it at home and nothing has happened before.  I went to move it over his head, and when I brought it back down his little foot got sucked in for a second.  Powerful vacuum!  I pulled it out and turned off the vacuum, to discover his left foot had a bunch of missing skin.  Poor guy!  He only cried a little, and we hurried and cleaned it and dressed it up.  He seems fine still but it still looks pretty raw.

We had a great time overall, good memories and great pictures.  Glad to be home though doing piles of laundry.  No sunburns either!

Horse Therapy

We finally got Carter in to horse therapy, goodness!  Thanks for a lot of donations he will be able to go all summer and then some in the fall.  He goes every Wednesday for 30 min at Courage Reins Therapeutic Riding Center in Highland, Utah.  I found them online and that they were cheaper than Park City.  Just to be clear, this isn't actual horse therapy- that would be very expensive with an actual therapist.  We would only be able to afford a few sessions.  This is called personal riding lessons with volunteers and he'll be visited by an occupational therapist mid-summer, and then go on to enhanced riding lessons which is more expensive.  His horse is named Gunner and is pretty.  I think either way, he'll still enjoy it and get benefits from it.  They took him around twice and he laughed and smiled the entire time.  So pleased!  He looked so cute in the helmet and on the horse.  I will take better pictures next time.  Now that he is out of preschool for the summer, I hope to find more activities to keep him entertained and stimulated.

Preschool and Stuff

This picture is so darling, Carter's preschool teacher emailed it to me.  He sure does love the grass!  He scoots around like a little monkey whenever we go outside.  Hence his pants are starting to wear at the knees and get holes.  So, preschool ends next week for the summer.  I hope that with going on walks daily, doing horse therapy weekly that he will be happy and busy enough.  We've had a few field trips with preschool this summer.  I met his class once to go swimming at The Lions Club, which ended up being pretty difficult with 2 kids on my own.  They weren't happy to wear life vests.  The next outing was to The Children's Garden at Thanksgiving Pointe.  Carter wasn't happy when I got there and soon fell asleep for the remainder of my visit.  Well, at least we got to walk around and Sierra had fun walking around the Noah's Ark water feature.  She didn't want to get in the water though.

Carter had a ct scan of his chest a few weeks ago- his doctors had noticed a cloudiness on one side that was in most of his xrays.  They wanted to wait when he was well and then see how it looked.  He did fine and the results came back okay.  He has some enlarged vessels but nothing too unusual.  We have been somewhat lax about putting on his bi pap at night, but we will get better again.  His sleep has been pretty good, but he does still wake up once or twice just for re-adjustment or comfort.  Carter and Sierra have been interacting a little more which is nice to see.  She is more gentle with him and they play some together.  I caught this picture while we were driving.

Carter has been moving super fast and seems to be looking at me more, and even scoots up to me to say hi.  He is playing more with toys and seems to catch on to how things work fast.  He knows right where things are, like at Grandma's he scoots right to her basket of toys.  He seems to like higher pitched noises and songs, they make him laugh.  This summer will be busy with two new nieces, a wedding, Lake Powell, St. George and more.  So I will try to keep you updated on the madness! 

Thoughts on Differences

For awhile I have been thinking about the differences between my children.  I thought perhaps one day I would write a book on the funny and frustrating differences between special needs and "normal" kids.  For now, I think I'll just share a few I have noticed the most.  Carter is about 3 1/2 years old and has 1p36 deletion syndrome.  Sierra is 1 years old and a typically developing child (better word than normal).  The first difference I've noticed is that Carter loves the vacuum or when I sweep- as a baby he hardly even startled at the noise.  He loves to follow me clean and touch the vacuum or broom and laughs.  On the other hand, Sierra screams and cries and is terrified of it.  That was a new one for me- now I vacuum when daddy is home or Sierra is asleep.  The second difference is their overall health- Carter can't even go swimming without getting sick and us all too.  He isn't swallowing water, but the germs and the coldness must attack his weak immune system.  He was relatively healthy as a baby, but has now had RSV, pneumonia several times, stomach bugs and it seems every possible cold there is out there.  Sierra is very healthy and most of the sicknesses seem to have passed her by or affected her very little.

The third and most obvious difference is that Carter doesn't eat by mouth and hates having his teeth brushed.  Sierra on the other hand loves to eat, everything, all the time!  And she is okay with us brushing her teeth.  Of course, Carter did eat orally until he was about 1 1/2 years old, it's hard to remember that though.  Fourth is also obvious, but Carter is still like a baby.  He isn't able to crawl, walk, run etc.  I was worried when having another child that I would have twins, and in ways it has been like that.  I still have to carry both to the car to buckle them in their car seats and get them out, I have to change both their diapers, feed them both, etc.  Sierra is walking now but still loves being held and carried. 

Fifth difference is how their personalities are.  I know this could be just the fact that they are different sexes, but also I think their genetic makeup has a lot to do with it as well.  Carter was and still is a very easygoing, sweet and affectionate boy.  He was an easy baby (other than the NICU experience) and wasn't very attached to me.  He was OK when I left the room or did my own thing, he didn't need a lot of attention or to be held a lot.  Once his seizures began and then stopped that also affected his personality.  He is more aware when I leave the room, but he doesn't cry.  He follows me or just plays with his toys.  He is more social and very affectionate with people, giving hugs often.  Carter just overall has a very patient, tender and loving spirit about him.  He wasn't always easy (no kid is) but overall a very easy child.  He plays with himself for long periods of time.  On the other hand, my Sierra...oh boy, does she tire me out.  She is very active, social, outgoing, feisty, spirited, smart, busy...the list goes on and on.  She is emotionally needy, following me everywhere and crying when I leave the room.  She needs a lot more attention and physical touch. 

A lot of Carter's doctors have told me that parents with two children like me, often say having the second child was like having their first.  The experience was so new and different- and harder in many ways.  When it comes to medical stuff, Carter is harder for sure.  But feeding-wise and overall daily stuff, Carter is so easy.  In many ways, having Sierra has been like having my 1st child.  I have a lot of questions and I feel more pressure in raising her.  She soaks everything up like a sponge so I have to be careful what I say and do, whereas I tend to be more lax around Carter.  I am sure he understands a lot more than I know, but since I'm not sure I am not guarded around him.  I am sure some parents can relate to this out there.  I tell people my "normal" child is much harder than my precious 1p36 angel.

I have been wanting to also write some kind of poem or lyric about Carter and Sierra but I am not that talented.  Everyday of motherhood brings many challenges and trials for me.  I do have moments of joy that make my heart want to burst.  I think having Sierra has given us tremendous satisfaction and more gratitude, because when she does something new, it is just incredible to us.  I have watched her roll over, crawl, sit up, clap her hands, high five us, walk, and play peek a boo with tears in my eyes and a bursting heart of joy.  At the same time, I always look over to where Carter is and feel a little twinge of sadness.  He is so sweet and I want so badly for him to do all those things as well.  I believe he will, it will just take longer.  What many parents take for granted, I have been able to have that gratitude and joy intensified because what seems so easy for Sierra and happens in just a day or days, has taken or will take Carter so much longer.  Months.  Years.  His therapists told me it would be incredible for me to see a "normal" child do all those things.  And it has been.  I hope I never take it for granted either.  Anyway, just a few ramblings from me today.  Thanks for reading and always feel free to share your thoughts.

Sierra is 1!

Sierra turned 1 on April 25th and she had a princess party.  She is so beautiful and we had a good time with family.  She is walking some and babbles a lot.  She is smart, funny, feisty, social, busy and a momma's girl.  We love having her in our family.  She is getting sweeter and softer with Carter but they both mostly play with themselves still.

Carter made it to preschool everyday last week, which was a miracle.  He's never made it all four days yet because he has been sick so much.  It was a blessing!  He is enjoying it and doing well.  This Wednesday they will start swimming once a week.  We had a fundraiser for Carter and raised enough to do several horse therapy sessions.  I look forward to seeing what he thinks about it.

Fundraiser

This summer I thought it would be fun and good to try hippo therapy.  This is a kind of physical therapy with the aide of a horse.  They do it up in Park City as well as other places in Utah.  It's a bit of a drive and an expense that insurance doesn't cover.  If you are interested in helping make a donation, visit the link below or my Facebook page.  Thanks so much!

http://www.giveforward.com/fundraiser/lm62/horsetherapyforcarterandmore

Losing it at the ER

I know this won't be an uplifting post, so this is not for the faint of heart.  I like to use this blog to vent and express my feelings honestly and sometimes bluntly.  I have never pretended to be a super Mom even though people keep telling me that I am.  They have no idea, they just assume I am.  I was given this life without a choice, and I have had to deal with it the best I can.  And lately, I haven't been handling it so well.  Carter had RSV and pneumonia just 3 months ago and missed Christmas with us.  He was life flighted and spent 9 days at the hospital.  He and I got sick more times than I can count after that, and just a few weeks ago both of us got strep.  I ended up in the ER myself because I developed like an abscess and swelling so I could hardly breathe.  I am still not fully recovered- I can hardly taste food and my lymph nodes are still swollen.  Anyway, this caused us also to miss our anniversary celebrations.  They were postponed for over a week and it was only half as long.  We now have medical bills trickling in that I will have to pay over time.  All of these frustrations have left me emotionally and physically tired.  I also feel I have lost a lot of faith in God and prayer.  I know it might sound weak, but I can only take so much.

Being Carter's mom has been THE hardest thing I have EVER gone through.  I have been divorced before and lost close friends and a wonderful Grandma.  But this has tested me above and beyond.  Everyone says "this too shall pass" or "we'll pray for you" or "you are amazing."  Let me be clear.  I am not amazing.  It is my wonderful husband Chris.  He is steadfast, patient, immensely strong and holds me up when I would have fallen many times.  Our families have also lended support and some friends.  But the sicknesses won't stop coming no matter what anyone does.  I know it's been a terrible winter for many and sickness has been rampant, but I feel especially hit by this.  It's hard to constantly be tested and miss out on precious sleep.  I am tired.  I want to be happy- better yet, I want Carter to have a strong immune system and to be strong and be healed.  I know that won't happen, and it makes me so sad.  I have little hope for the future, in this bleak moment.  I know I am choosing to fuel my anger/sadness/ pity party but I need to once in awhile.  I have wept more tears in these 3 years than my whole life.

I often think selfishly and how this all affects me and my baby Sierra, but I tend to miss that Chris and Carter are suffering too.  An empty pot can't give to others without first being full itself or at least partially.  I know many have helped and have wanted to, but it's not enough.  I am painfully aware of my shortcomings as a mother, and only hope one day Carter can forgive me.  I am prone to depression and anxiety and am a bit obsessive compulsive.  I like routine and order and cleanliness.  Today, Carter was asked to go home from preschool, because his eyes were goopying green stuff, he was breathing fast and had a fever and cough.  I was at a friend's and had to cut the visit short to pick him up, it's a 30 min drive, and brought him home.  He was breathing fast, had fevers off and on, goop in his eye and increased heart rate.  I also had to drive almost the same route a few hours later for my dentist appointment, but was told upon arriving my appointment needed to be canceled.  I was pretty mad- I also missed out on going grocery shopping which I love to do.  My wonderful friend and neighbor, a nurse, came over to check Carter out a bit later, and suggested like we thought, that he needed to be taken in.  After over 4 hours in the ER and just a chest xray which was not conclusive, as usual, and watching them poke my poor Carter in the hand for an IV when it never works the first time, I had it.  I blew up on the nurse, even though I know it wasn't her fault, but I couldn't take it anymore.  I was sick of waiting, answering the same questions over and over, and waiting for nothing to happen.  They are so SLOW!

Because of his history they were reluctant to let him go home.  My husband suggested firmly but kindly I go home and sleep, and here I am now.  My husband has to go to work in 5 hours, but he is still at the hospital with Carter waiting with him for a room.  I am sorry for not being stronger, but I know my limitations.  This anger inside me has made me a bitter person.  I pretend to strangers or acquaintances that I'm okay, but I'm not.  I don't know what to do anymore.  I feel like I am circling the cycle of grief or acceptance, only to stay on anger and short burst of elation.  I don't know how to accept my life and trials with poise.  I know there are many in similar or worse situations, and that is what makes me even sadder.  I have much empathy for people and feel their pain deeply as my own.  I often find myself in tears over posts on blogs or Facebook because life is just so hard.  For so many.  So I don't pretend my life is the worst, it's just so hard.  I know spring is here but I am not feeling the joy.  I hope the warm weather will help Carter be stronger, but I doubt it.  I don't want to ask for prayers for me, but for Carter.  He is a sweet, innocent boy that didn't ask for this.  He has endured his life stoically, bravely and patiently.  He is amazing and an example to me.