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Tuesday, May 28, 2013

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! 

Wednesday, May 8, 2013

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.