We rescheduled all routine doctors appointments until the end of August and were going to spend most of our days at the beach. Just spending lazy days, living a much slower pace.
So here is Annabel spending time in her
little pool up on the middle deck at the beach house. We fill in the morning so
by afternoon the water is just right.
If the beach water is smooth and mostly
clear we do go to the edge of the water and let her be rocked by the tiny
waves. Mostly we opt for the clean water on the deck.
As we do have a pool at home she does
spend sometime in the pool when we are home.
This is Annabel having lunch with her much
loved teacher, Ms. Ann...who we will miss so much due to her retiring.
As you can tell she has eyes only for her
Ms. Ann.
So for the update on Annabel's health, she
will be having her supra-pubic cath placed on this Monday. The surgery isn't a
biggie but always some concern when we have to put her to sleep. If all goes
well, we should be returning home that evening
The neurologist
(movement disorder specialist) wanted her to have a PH probe to rule out
reflux. We have done this several years ago and found nothing of reflux. She
just wants to make sure these movement have nothing to do with reflux. So they
will sedate her on the 22nd of July and place the probe. We will stay in
Houston for the evening and then be there in the morning to have removed.
Our newest issue is that Annabel has begun
to not tolerate her feeds very much. We are still giving her most of the feeds
but basically forcing her to take them (g-tube). She is uncomfortable and
begins letting you know at the beginning of the feeds. Also her stomach is
becoming very distended and hard. She is having very few BM's even though her
stool is watery. Tonight she just had a KUB and it shows she is so filled with
air. All her bowel loops, like they were prior to her surgery this past July.
This new upsets me greatly, because if Annabel doesn't eat, her only option is
central line and we don't even want to go there...
Enjoying the breeze on the deck!
We had to seen an ENT today after the
finding of her sleep study. Back in 2009 she was said to have severe
obstructed and central sleep apnea. She was placed on c-pap which work for a
couple months then needed more oxygen and there another sleep study that led to
her being on bi-pap. That was a no-go. Her tummy filled with so much more air
and there for hindered her feeds. Annabel has been on oxygen since then but the
sleep study again was severe and they want her on bi-pap. So at the ENT they
said her tonsils were so tiny (like back in 2009) and then xrays her adenoids
and they said they are really big and only leaves her a very tiny airway... So
she will have her adenoids also out probably August. He also went on to share
about reducing her tongue by killing some of the tissue in the back, then
decided the back part of her tongue was not that big it was the front of her
tongue. We know this falls back when she sleeps and blocks her airway also.
He mentioned about when he scoped her that if he found things
wrong with her airway he would have to
perform a tracheotomy...
WHAT the heck???? We agreed he could
do the adenoids because
they are obviously an issue but likely not
the only issue.
There would have to be the most
significant findings that would
convince me that Annabel would be better
off dramatically
with a trach.
This photo below is the morning Annabel woke
with Hand, Foot and Mouth Disease(Virus).
She was awake all night due to be so uncomfortable.
In the morning she was covered on her
inside palms and wrist, bottom, top of feet and ankles,
and her lips were so red and puffy. She
did end up with the sores in her mouth. All in all, I don't think it was
as bad as it could have been. She
basically lived on Benadryl for the first
3 days. She still has the rash but the intense itching is seeming to slow down.
Prayer request are for her to do well with
the multiple times she will be going under for sedation...
Also that her stomach will calm down and
that she will be able to receive all her nutrition from her g-button.
Last one is that the supra-pubic catheter
procedure will give Annabel relief from the UTI's and that the more invasive
surgery, vesicostomy will not need to be performed.
