All
the best,
Wayne, Katie, Sadbh and Cillian
Sunday, May 31, 2015
Saturday, May 30, 2015
Friday, May 29, 2015
Thursday, May 28, 2015
Wednesday, May 27, 2015
Tuesday, May 26, 2015
Monday, May 25, 2015
Sunday, May 24, 2015
Saturday, May 23, 2015
Friday, May 22, 2015
Sadbh’s update – May 22, 2015
Sadbh slept like a log each night this week and woke
up in a wonderful mood each morning. I received a huge hug from her this
morning when I took over from Jirapa and she even asked if we could let Mommy
sleep in for a while.
Katie had a hair appointment today so she brought
Sadbh along. Sadbh’s hair has been getting very long so we decided it was time
for her first haircut.
Sadbh took it very serious and the hairdresser had to
work hard to get Sadbh to smile. In the end she only took a couple of short
snips off her hair but Sadbh was very proud of her first haircut. There was not
enough hair to bring home as a keepsake.
Sadbh’s favorite movie at the moment is Toy Story 2.
She loves Jessie and all day she was pretending to be a cowgirl while riding
her horse around the house. It was a lot of fun. Although, for some reason she
had me wearing one of her tiaras. Not sure how that fit into the Wild West
theme for the day.
All
the best,
Wayne, Katie, Sadbh and Cillian
Thursday, May 21, 2015
Wednesday, May 20, 2015
Tuesday, May 19, 2015
Sadbh’s update – May 19, 2015
Katie received a call from Children’s Hospital today
with news that they can move Sadbh’s laser cordotomy appointment up from July
20th to June 10th. Both Katie and I are already very
apprehensive to carry out this procedure as it may not create a large enough
airway and it will certainly reduce her voice as it did the last time. It’s a
huge gamble and we would never forgive ourselves if she loses her voice
permanently, even if it results in Sadbh being able to be decannulated.
Despite being scheduled for June 10th we
can cancel at any time…..
All
the best,
Wayne, Katie, Sadbh and Cillian
Monday, May 18, 2015
Sadbh’s update – May 18, 2015
This evening after Katie arrived home we went for a
walk to Nora’s Woods. Sadbh wanted to dress up as Little Red Riding Hood and
she acted out the part the entire time. She had so much fun and had me chase
her around the wood while I pretended to be the big bad wolf. It was great and
she had a wonderful time.
We found out this weekend that Helen, Sadbh’s weekend
night nurse, will be finishing up with us in a couple of weeks. Helen has
worked with us on and off a few times over the past couple of years and we will
be sad to see her go.
At this point we have no desire to replace the
weekend shift so we will go back to moving Sadbh upstairs to her room next to
ours. I have a feeling that Sadbh will be very happy with this arrangement.
All
the best,
Wayne, Katie, Sadbh and Cillian
Sunday, May 17, 2015
Sadbh’s update – May 17, 2015
Today we talked with Sadbh about her vocal cord surgery in July in the hopes to get her comfortable with the idea. Sadbh is still very upset with the anesthetic that she received the last time. We mentioned this to the doctor when we met with him last week and learned that there is a "purple juice" they can give her in advance of the anesthetic that will make it more comfortable for her. Katie told her about this and she still not happy and responded with "I don't like surgery, it's going to be poo poo pants in my heart".
All
the best,
Wayne, Katie, Sadbh and Cillian
Saturday, May 16, 2015
Friday, May 15, 2015
Thursday, May 14, 2015
Sadbh’s update – May 14, 2015
We had our follow up appointment with Dr. Inglis to
go over the results of Sadbh’s sleep study on April 5th.
The study did reveal that Sadbh has mild obstructive
sleep apnea.
Sadbh’s situation is not as severe as a lot of his
patients and she could be decannulated (have her trach removed), however she
would need to wear a CPAP breathing apparatus at night while she sleeps. This also
does not mean that her vocal cords are functioning enough to allow her to
thrive normally.
Dr. Inglis went over a few options for us to
consider.
First, we could stay the course and keep doing what
we have been in the hopes that she either self corrects over time or wait until
some new procedure is discovered that could allow her to be trach free.
Another option would be to decannulate and see how
she manages over a period of time. This comes with high risk, for the obvious
reasons. Dr. Inglis said that he didn’t
think we would be happy with the results in this scenario as simple things, like running, jumping, crying, would be more difficult for her and she would struggle to breathe.
Finally, we could carry out another laser cordotomy
to open up her vocal cords, the same procedure as we had performed last August
12th.
The risk with this procedure is that it will
negatively affect her voice, as it did last year, and it might not work, as was
the outcome last year.
We might not obtain the opening in her airway from
one cordotomy so a follow up might be required in time. Each cordotomy will
diminish her voice further so our hope is that he will be able to create enough
of an opening with fewer surgeries.
It’s always a mixed bag of emotions when we see Dr.
Inglis as it is never a “yes/no” scenario and we always leave with more
questions than we went in with. He’s a wonderful doctor and we have so much
confidence in him and his ability, the fact of the matter is that Sadbh’s
situation is not common enough to know what to expect and what the next steps
are.
He did commend us on our dedication to Sadbh and
mentioned that the vast majority of his patients with similar situations to
ours gave up in the early days and performed surgical procedures so their kids
could live trach free but with the compromise of diminished or complete loss of
voice.
After some serious considerations we decided to
schedule another laser cordotomy for July. This gives us plenty of time to
really mull it over and we can cancel if need be. Dr. Inglis is confident that
her voice should not be affected too dramatically so there is a good chance
that we will go through this procedure.
All
the best,
Wayne, Katie, Sadbh and Cillian
Wednesday, May 13, 2015
Tuesday, May 12, 2015
Monday, May 11, 2015
Sunday, May 10, 2015
Sadbh’s update – May 10, 2015 - Photos
Saturday, May 9, 2015
Sadbh’s update – May 9, 2015
Sadbh woke up bright and early after a great night
sleep. For some reason, she was not happy with Helen and wanted to come up
stairs as quickly as possible.
As soon as Katie arrived in her room Sadbh’s mood
improved dramatically and the rest of the day was great.
Sadbh received her trach four years ago today. It is
incredible how this small tube has allowed our daughter to thrive and live a
somewhat normal life.
It takes a lot of work for us to maintain her trach
and airway and her condition has resulted in us all living in a bubble.
Despite this, we consider ourselves very fortunate
and we are well aware of how good we have it compared to so many others.
Katie’s friend, Michelle, stopped by in the early
afternoon and Sadbh had a wonderful time playing and talking with her.
Sadbh’s cousins came up from Portland for the evening
and Sadbh was so excited. She got to spend the evening playing with Hayato and
Lulu and they all had so much fun.
By bedtime she was exhausted and was fast asleep
moments after her head hit her pillow.
All
the best,
Wayne, Katie, Sadbh and Cillian
Friday, May 8, 2015
Sadbh’s update – May 8, 2015
Sadbh woke up this morning and the first thing she
said to Mommy was “I’m getting married today!”
For the past couple of weeks she has been talking
about wanting to marry her friend Dylan. Dylan and his parents were coming over
for dinner this evening and Sadbh could not wait.
The evening went great and Dylan was more than
willing to tie the knot. Unfortunately, when the time came, Sadbh got shy and
both kids headed out into the garden to play instead.
They both had so much fun but by the time they were
done they were both covered head to toe in dust. Sadbh had to have a bath
before bedtime and thankfully we were able to keep her trach ties dry and not
have to do trach care for the second time. I do not think Sadbh has ever been
this dirty.
We also managed trach change earlier in the day and
Sadbh was wonderful. She did close her neck for what seemed like a few seconds
but I was able to get the trach into her stoma without any difficulty. The
constant daily care that both Katie and I take with Sadbh’s neck and trach has
allowed for a very healthy trach stoma.
All
the best,
Wayne, Katie, Sadbh and Cillian
Thursday, May 7, 2015
Sadbh’s update – May 7, 2015 – Photos and quote of the day.
Sadbh has so much energy and never slows down. Today,
as she was eating lunch she turned around to turn on her stereo and bumped her
lip on the chair. Unfortunately, she ended up cutting her lip, no serious harm,
but she ended up very upset.
Once cleaned up and snuggled up in my arms for some
comfort she turned to me and said while sobbing, “but I won’t be able to kiss
anyone”.
It was very cute and thankfully it was not long before I was on the receiving end of a kiss from her.
It was very cute and thankfully it was not long before I was on the receiving end of a kiss from her.
All
the best,
Wayne, Katie, Sadbh and Cillian
Wednesday, May 6, 2015
Tuesday, May 5, 2015
Monday, May 4, 2015
Sunday, May 3, 2015
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