Chandlor turned 4! Okay, so that happened a while ago. I ordered the cake for the actual party for the wrong day. Mom of
the year award goes to me :)
Chandlor didn’t actually turn four until November 2nd, but we had
his party early in mid-October because we were hoping that the weather would be
nice enough we could have it at the park. It wasn’t, but the party still turned
out great. We actually celebrated his birthday three times this year; his
birthday party, the day after his birthday party with his drum cake, and on his
actual birthday. Poor kid was probably pretty confused by the time it was over
with.
Kendyl turned 1! This year has literally flown by! I can’t
believe my baby girl is 1. Kendyl spent her actual birthday at ACH with
Chandlor, what a sweet sister! We decided to have Kendyl’s party at our house.
It was pretty cramped so we probably won’t be doing that again, at least not in
the winter when we can’t go outside. I ordered the cake for the right day (go
me) and Kendyl had a great time playing with her friends and cousins. There
were actually four one year olds at her party! I’m pretty excited about her
growing up with so many playmates.
Uriah turned 27! I think he just gets more handsome every
year ;) We went out to dinner for his birthday and he got a MacBook Air.
Uriah and I have been married for two years! This blows my
mind as well. I can’t believe he has put up with me for this long! Hah! I am so
thankful for him and all he does for our family. My kids have the very best
dad/step-dad in the entire world. I definitely married up! We had been planning
on going to Dallas over my Christmas break from work for our anniversary, but
we ended up scheduling Chandlor’s surgery at this time so we decided to go over
Thanksgiving instead. I didn’t really like being away from the kids on a
holiday, but we celebrated with them before Thanksgiving with Uriah’s family
and after Thanksgiving with my family. I convinced myself that it didn’t matter
when we celebrated as long as we celebrated. Uriah and I, in the almost four
years we have been together, have never had the same weekend. We don’t get a
whole lot of time together, so we really needed and in my opinion deserved this
mini-vacation. We had lots of fun ate good food, did a little shopping, and
really just enjoyed each other’s company. It was just what we needed.
Chandlor had his coccyx removed! A little bit of backstory.
About two years ago Chandlor developed a wound on his bottom. In the beginning
we thought that it was a contusion. We thought that it was a onetime thing that
we needed to get healed and then it would go away for good. A year later after
seeing two different wound care specialists and many other doctors it still
wasn’t healed. A plastic surgeon recommended that we make Chandlor lay prone
for 6 weeks, only being on his bottom when absolutely necessary. I thought she
was crazy, but I was out of options so I took her advice. I was wrong. It was
completely healed in 6 weeks or less! What we thought was a contusion was actually a
pressure wound. After Chandlor’s wound healed every 2 months or so the scar
tissue would become extremely irritated. When this happened Chandlor would have
to lay prone for up to two weeks until the area was healed. We tried
everything, a ROHO cushion for his wheelchair (they’re the best of the best),
an Alternating Pressure pad, limiting baths to every other day, having him wear
two diapers with a donut in between them to cushion the area. Nothing worked.
Like clockwork after the skin had had all it could take it would start to break
down again. Making a 4 year old be prone for weeks at a time is heartbreaking. He
was always such a champ and I really think it hurt our heart more than it did
his, but it just wasn’t acceptable. His disability affects his quality of life
in so many different ways already. We were determined to not let this be one of
them. After talking to several people in the online Spina Bifida community I
found out that this was a semi- common problem, and it could be resolved by
shaving the tailbone! Most people didn’t have a single pressure area after the
correction. We met with Dr. McCarthy an Orthopedic Surgeon who specializes in
the spine (is that even how you say that? Oh well). He walked in, examined
Chandlor’s x-ray, examined Chandlor and immediately felt confident that this
was the next step. What a relief!His surgery calendar was booked until
February, but he squeezed us in right before Christmas. He is seriously a
really great person and doctor.
So now Chandlor officially has no tailbone! It will be
several months before we know if this is the answer to our prayers, but we are
really hoping that it does the trick. For now, Chandlor is laying prone for at
least three weeks and has to keep the wound “open to air” so he’s pretty much
chillin’ with only half a diaper on ;)
I’ve said it before and I’ll probably say it a few more
hundred times. ACH is such a great place. I was so at ease with Chandlor’s surgery
because I knew that he was in the very best hands. They really love these
kiddos and what they do for a living. Makes my heart happy!
