Okay I have to admit, I have been AWFUL when it comes to my
updates with Carter and how this SB learning process has been for us! I
apologize for those who get their news here. I think once school started I got
into the teacher/mom mode and have been trying to figure out how to balance it
all and the blog fell at the wayside :(, it will not continue because there is
too much to talk about and updates to be written.
Our pager to receive information during surgery
Just waiting to go home
Working on our standing!
What a cake!
Making friends at our birthday party!
This blog is going to be VERY
long but it will be broken up into four pieces so you can jump around to what
you would like to read. So much has been happening in the life of Carter.
Surgery
On August 25th, 2015 Carter had this third
surgery for a hernia. I still cannot believe that before turning 1 he has
already had 3 surgeries although I’m not one to complain because I know of
families whose children have had to endure much more.
Carter was a trooper; we arrived early in the morning and
got all checked in. He couldn’t eat before his surgery and handled it much
better than I ever thought he would being 10 months old. He was put into his
little gown and we played with him while they took his weight, measured him,
and checked out to make sure his temperature was good.
Once that was complete he played some more while we waited,
and waited, and waited, and then he started to get hungry. It was pretty brutal
for a while and it turns out that one of the previous surgeries took longer
than expected so Carter’s was pushed back. The nurses were amazing though and
entertained him when he started to get upset.
Hanging out in pre-op
Finally, we got the okay that he was up so they gave him
some medicine to help start to make him a little sleepy. He HATED the medicine
and after we tried getting him to take it all, he threw it all back up.
Fortunately (and I’m still not sure how) some of it still got into his system
and within 5 minutes he was a loopy little baby. It may not sound the greatest
but imagine a drunk person trying to walk a straight line and that was Carter
trying to crawl around the bed he was in, poor guy.
Eventually he just laid down and Mike and I said our goodbye
and he was wheeled into the O.R. this time around wasn’t as bad as his shunt
surgery because let’s face it his first surgery post birth was brain surgery, a
little nerve-wracking to say the least. We were given our beeper and login so
we could get messages as to how he was doing in surgery and how much longer he
had to go.
Surgery took about three hours when it was all said and
done; prep, surgery itself, and post OP. Our beeper went off and we were able to
talk to the surgeon about how it all went. His surgeon is a wonderful man and
was very kind when he spoke to us. He also used layman’s terms which made it a
lot easier to understand what had happened and what he did while in surgery.
Carter had a hernia in his lower left abdomen and we aren’t
exactly sure how it happened but luckily it wasn’t anything that was too
serious or crucial to his health. However, it needed to be repaired and the
doctor was glad we had it done when we did. Carter also had another issue going
on during surgery but due to him getting older one day and not wanting
everything posted on the internet I’m going to leave that part out ;), he is
already going to be embarrassed by me, no need to make it worse. When the
doctor was talking he had told us that surgery took longer than expected
because there was a minor issue. Apparently when the doctor was opening Carter
up and started to work on the hernia his shunt tubing fell down into the hole
of the hernia (eeekkkkkkk!!!!). I couldn’t believe that happened, and he said
that he was happy it happened while in surgery than out while Carter was
playing because that could have become a serious issue with his shunt and
getting an infection. Moral of the story, if you’re going to have something go
wrong with your child’s shunt it’s better that it happens while in a surgery.
After speaking to the doctor we waited for Carter to wake up
from his surgery and start to feel better before heading to post-op. That took
longer than we thought but we knew that figuring out Carter’s pain medicine can
be tricky so we waited it out. Eventually we were taken back and he seemed to
be okay. He was fussy (I mean its surgery, who wouldn’t be?) and wanted to
snuggle so obviously I did. We were there for about an hour before we were told
that he was getting the okay to come home. He would need to be watched closely
for 48 hours to be sure there wasn’t any sort of infection of any kind and that
he would be sore and groggy but would start to feel better. We got his dressed,
check out, and headed home; Third surgery, another success.
Splints
Shortly after his surgery Carter had to get a splint for his
right leg/ankle/foot. His right side turns in quite a bit and both his physical
therapist (PT) and physical medicine doctor (PM&R) had said that perhaps
wearing a splint at night might help correct his foot and how much it turns in.
Honestly if you saw him standing you would wonder if his foot was broken with
how much it faces in towards his body. I don’t know how he does it, but it
never seems to bother him and even when we try and move his foot so it’s facing
the right direction, he moved it back. I digress.
Once day after school Carter and I headed to where he sees
his PT to meet his Occupational Therapist (OT) and get fit for his splint. It
was a quick process and he did a really good job at sitting still for about 15
minutes while she got him fit for his splint and tested it all out. I was
really impressed that he was so great just sitting there because he didn’t have
any toys around him or food… and we all know how much he loves his food ;).
His OT made the splints right in front of us. It was a
really cool process where she actually melts the material into hot water and
can move and shape it so it will fit his leg/foot. She worked on that for a
while, had him try it on, and we were good to go! I was told that he should
only wear it at night because it’s not to help him when he is moving or
crawling around, but just for helping with that turned in foot so if he wore it
sleeping that would benefit him the best.
Before he wore it to bed we did have to test them out to
make sure it wouldn’t cause too much discomfort so he had to wear it for about
20 minutes, take it off and check for red marks. If the red marks stayed for longer
than 10 minutes then something wasn’t fitting well and we had to get it fixed.
I had him wear them from the office back home and then checked for marks.
Luckily he only had some marks from it rubbing a little on his leg but they
went away and I had the green light to put it on him before bed.
Bonus, I don’t think Carter even recognized that he had a
splint on. He just kept on living life as if nothing was on his leg and it did
seem to bother him while he rolled all over his crib while we slept. After
about 3 weeks of wearing the splint to bed we started to notice, as did his PT,
that his foot started to turn out more than it had before. It wasn’t a huge change
but a big enough change that made a difference to help him with his standing.
As he’s gotten older it is really easy for him to take the
splint off because it’s only being held to his leg with Velcro and he just
pulls off the tabs and then pulls it off. We are trying to figure out what else
we can do to keep it on and have only come to the conclusion that we can try
and put it on him after he falls asleep and if he takes it off in the morning
that’s okay because he can’t wear it awake anyway! As he gets older we will
have to get new splints because he is growing and will outgrow it but for now,
it seems to be doing some good.
Braces
Shortly after having the splits made our PM&R told us that
it was time to talk about getting braces made. These would ultimately help
Carter with his standing and walking to make sure that the braces help hold
Carter’s body weight up and help support him when he is learning how to stand,
walk, and take steps.
We were first told that it wouldn’t be until he was 18
months to have that talk, but after an appointment with PM&R she was so impressed
with the fact that he could pull himself up and stand holding onto something
that we needed to move forward with getting him fit with braces to help support
him in moving forward with moving forward :). We made the appointment with orthotics
and prosthetics and a week later, Carter was being fit for his braces. The
woman we worked with was great with Carter. She measured his legs and feet and
made a wrapping of his legs and feet to get a mold of what they need to make.
Carter did a nice job with this and didn’t fuss or move around too much which
was good because if he moved around too much then we would need to try again.
The mold for his braces
Braces are tricky because even though they are made for
right now they are supposed to last about a year to a year and a half before he
will need to be fit with a new pair. While we were there I got the chance to
pick out his colors for his braces. There are two different colors you have to
pick; the brace itself and the color Velcro that would wrap it around his legs
to keep them on him. I looked at the different colors and patterns and eventually
came to the natural decision I figured I would; maize and blue. We picked yellow for the brace and then blue
for the Velcro pieces (check them out below!), and I’m so happy with what we
picked because they are sharp looking on Carter. Another piece we had to talk
about what whether or not to put non-slip pieces at the bottom of the brace.
This would be for the point where Carter is standing or walking and making sure
that he doesn’t slip and has a good grip on floors, especially hard wood.
Without hesitating I said yes to non-slip braces because the last thing I need with
a kid who has a hard time holding their own body weight up are braces they slip
and fall with.
After getting wrapped we were told it would take 2-3 weeks
before they came in and then we would have to make another appointment to come
in, have Carter test them out, and make sure that they felt right and didn’t
need to have any changes made. While we waited Carter continued to make strides
with his standing and actually bouncing while he stands without braces or any
type of support. I was thrilled to know that he could do that and that his body
had the strength to hold him up because as we all know, Carter loves his food
and is bigger than most kids his age haha.
Eventually I got the phone call that the braces were ready
and we made an appointment to check them out. Carter was amazing, again with
having them put on for the first time and letting me learn how to put them on
him too which by the way, is a lot harder than it looks. Even today it still
takes me a while to make sure they are on correctly without his feet slipping
out and even though I know he gets frustrated he sits there for me and lets me
get them on him. We practiced this for about 15 minutes while the woman who was
working with us made sure that they fit alright. They were a bit longer then
they needed to be so she took them to the back and had them trimmed, an easy
fix. We were told the same as the splints, wear them for about 30 minutes and after
you take them off check to be sure he doesn’t have any major irritation. If he
did we would have to have them altered or a new pair made. Once braces are made
we have 90 days to have something changed or fixed if it’s needed but if it’s
past the 90 day mark you have to have a new pair made; definitely not something
to screw around with.
Ready for our maize and blue braces!
We left with the braces in tow and were told to have him
wear them for about an hour a day so he can get used to how they feel and
continue to check for any irritation. As we started to have him wear them
throughout the weeks we learned more about them and Carter using them; More to
come about his braces when I have an update about our Spina Bifida clinic.
Birthdays
Well I am obviously late with this post but it finally came,
Carter’s first birthday and very first birthday party! I could not believe that
the day was already here because I feel like it really snuck up on us. October
10th happened to be on a Saturday this year which was perfect
because we were able to plan his very first party on his actual birthday.
Having an October birthday we weren’t too sure how the weather would be (being
in Michigan it can seriously be 75 degrees one day and 30 the next, it has
happened.) so we had to plan for an outdoor and an indoor party. Luckily for
us, October 10th was a beautiful day and we were able to hold it
outside/in the garage for everyone to enjoy.
When we were planning the birthday party we weren’t sure
what type of party to have. A first birthday is a big deal and when you’re a
kid like Carter and you’ve already seen three surgeries, it better be good. On
the flip side, we didn’t want to get too out of control because we know that
Carter won’t remember this birthday and we want to save a lot of our energy for
birthday’s he will remember and want a theme for. After talking about it Mike
and I went with the one theme that seemed fitting for our little victor; a
Michigan themed birthday party. It was incredibly simple to put together with
the football season in full gear. We picked up Michigan items from the grocery
store, made a birthday banner of Carter’s monthly pictures leading up to his
birthday, and decided that we would have a burger bar for everyone who came
along with a kids menu for the little ones who would be joining us at the
party.
Another big part of a first birthday is the cake and I am no
baker so I started to research a good place for a birthday cake and happened to
run into an amazing opportunity. There is a non-profit foundation called Icing
Smiles (icingsmiles.org) and they make cakes for children like Carter and for
children with much more serious diagnosis. Once a year until the age of 18 kids
can receive one cake a year so I thought, why not give it a try?! I filled out
the paperwork and waited to hear back. Within a week I heard back and was asked
to talk about what type of cake we would like. I said that we were having a
Michigan themed birthday so yellow and blue and that we would be good with
chocolate and vanilla. I assumed that it would be a sheet cake with the amount
of guests that we had and that would be perfect because it was something I didn’t
have to worry about. I was matched with a baker named Holly and she would
deliver the cake the morning of the party.
We sent out the evites and made sure everything was in order
for the party. Once Carter went to sleep, we got to work. We put together the
tables and chairs, hung up the banner, and made sure all of the food was ready
to go for the next day. I’m the type of person who would rather get everything
done at night and not have to worry about it in the morning and it’s a good
thing we did everything at night because trying to get ready for a one year old
birthday party with a one year old is not as easy as one would think ;).
In the morning Mike and I both greeted Carter and attacked
him in kisses for his birthday. We fed him breakfast and each took our turns
getting ready for the party. We set up the food, opened the garage and started to
make sure everything was in place before people arrived. It was a beautiful
October day, about 67 degrees and not a cloud in the sky.
About an hour before the party started Holly arrived with
Carter’s cake and WOW, it was better than anything I could have imagined. She
did an amazing job with this birthday cake. Words can truly not talk it up so
instead please enjoy the pictures of the cake that Carter had. I am so thankful
to both Holly and Icing Smiles for helping us and creating a beautiful cake
that we will remember (even if Carter doesn’t) forever.
The party was a hit and Carter had a great day. He played
with friends and family, ate lots of food, and enjoyed his very first birthday
cake. Although he didn’t get too messy (the cake was fondant so no opportunity
to get frosting everywhere) but he LOVED the taste of the cake. Once he was
cleaned up of cake and put into comfy clothes he was worn out and took an
almost three hour nap; basically sleeping through the entire party but hey,
that’s what first birthday parties are for, right?! We continued to spend time
with friends and family and truly enjoyed a great day with so many people who
were there to celebrate Carter’s first year of life. Plus, the Michigan theme
birthday is now done… until (hopefully) Carter wants another Michigan themed
party, but we will see ;).
Tasting cake and loving on friends :)
After Carter was all tucked in and went to sleep for the
night, I looked back on the last year and what an adventure it had been. We could
not be any luckier to have Carter as our son and even though we weren’t
expecting the story that we have, I wouldn’t change a thing. This is the life
that our family is meant to have and Carter has changed our lives for the
better. I can’t wait to see what the next year has in store for us.
Thanks for all the updates, was afraid you were through doing them. Are you going to do a book? You and Mike are great parents. Love you. AC
ReplyDelete