February 9, 2005
Hello everyone, and welcome to the new members of this list.
Sarah has been doing well with eating since the swallow study. She is
eating an ounce or two a day of food, and her favorites are baby food
beef, Hawaiian Delight, and chocolate pudding.
Yesterday we had an extended EEG at Cardinal Glennon and found that
Sarah is in fact having small seizures like we suspected (but hoped we
were wrong). We are going to increase one of her medicines and see if
that helps. The new seizures are staring type seizures, and are not
dangerous like the long ones she was having before.
Attached is the picture I promised earlier of Sarah in a crawling
position - the only assistance she is getting is with her left arm (I am NOT touching her).
_______________________________________________
January 24, 2005
Sarah passed her swallow study today and is now going to start eating
by mouth!!!! Praise God!!!!
Here she is getting ready for the test. It was a video x-ray so that
you can see how she chews and swallows each bite.
_______________________________________________
January 7, 2005
Hi Everyone,
Sorry it has been so long! We got home from Bolingbrook on December
14th. Sarah was extra tired for several days, which we wrote off to the
change in routine & the trip. But then we realized she was getting
sick. A week after we got home, we found ourselves at Cardinal Glennon
with Sarah having pneumonia. We went home at 5pm Christmas Eve, only to
turn right around and go back via ambulance at 9pm. Sarah was very sick
this time, and the PICU doctor even had to come down to the ER to help
stabilize her because it was not safe to move her. Later that night we
moved to the PICU, where Dave spent the entire night at Sarah's side
while I slept a little in order to take the next shift. We spent
Christmas day and Sunday in the PICU, then a regular room Monday and
Tuesday, then back home.
Our parting gift was an intestinal infection that you only catch in the
hospital, and Sarah had to start on medicine that made her very sick to
her stomach. There are only 2 antibiotics that this very resistant bug
responds to. After almost 4 days of giving her one of these medicines,
she starting throwing up and crying like I have not heard her cry in 9
months. This was both good and bad - it was so amazing to hear her full
voice and "regular" strong cry. So the pediatrician said to stop the
medicine, and bring in a sample to see if maybe the bug was gone. We
are waiting for the results. In the meantime, I picked up the other
drug that can treat this bug & have it in the fridge ready to go. It
has big side effects too, so it would be great if we do not have to
give it.
Sarah has had two Healing Touch sessions with Janet Neal, the second of
which I truly wonder if it didn't heal the intestinal infection. Since
that session, all of Sarah's symptoms of the infection went away, and
today she had the best day she has had since we have been home from
Bolingbrook. If the results of the culture are positive, I am going to
ask for another test because the Healing Touch session was after we
took the sample to the doctor's office. I did not know about Healing
Touch before Janet contacted us and offered to do this for Sarah. I was
concerned and skeptical at first, because it is a spiritual treatment,
and one, I did not know if it was for real, and two, if it was for
real, if it was safe. I emailed Janet about my concerns, and found out
she is Christian, actually Roman Catholic, and she is a former Barnes
Jewish Hospital nurse. I also read about it on the web, and decided to
give it a try. It is very interesting - Sarah has become totally
relaxed and fallen asleep both times. After the first session Sarah's
strong cry returned, and after the second, I want to say her infection
disappeared. Janet says we will be amazed what happens. We'll see how
this all goes. It is certainly very intriguing. Here is a website about
it http://www.healingtouch.net
Sarah is just getting back into her regular therapy schedule. Sarah/s
PMA, (Personal Medical Assistant) Karey Kaemmerer, brought over one of
those bouncy seats you hang from the door frame that belongs to her
little girl, and we put Sarah in it today. With her therapy vest on,
she sat up and held her head up and smiled as we bounced her for a good
5 minutes! So Karey has come up with a "therapy" that we will be
repeating - Sarah really liked it!
We had our family Christmas morning on New Years morning, and did not
get our tree up until New Years Eve, so it is still up. We are thankful
to be in 2005 now. We didn't care for 2004 overall, and although a lot
of beautiful things happened, I'd still send it back if I could.
Since Sarah has been sick, it is hard to quantify the progress we might
attribute to HBOT since we've been home. We did see accelerated
progress the last 2-3 weeks in Bolingbrook, but we are likely to see
more accelerated progress over the next few weeks. Now that she's
feeing better, it will be easier to tell. She does seem different this
week - it is so subtle that all I can say is she seems more aware. She
is verbalizing more, and we have heard "Ah-rah" several times now when
we have asked her to say her name.
We are continuing doing everything we can to facilitate Sarah's
recovery. There are three other therapies we are looking into - aquatic
therapy, lite gait (treadmill), and horseback therapy. They all look
very promising. There is a lot going on in the field of brain injury
recovery - there are a lot of approaches, and we are looking for the
ones that benefit Sarah the most. Her swallow test has been rescheduled
for January 24th due to her illness - we are still so excited about
this.
God Bless all of you, and thanks for reading this big long message.
Best wishes to you and your family for a wonderful new year!
Love,
Sandy
_______________________________________________
2005
HI Everyone,
We completed HBOT number 14 on Friday. By the time we come home
next weekend we will be almost exactly half way done with 40.
It really is going by fast, as has this whole year.
Sarah and I went to the Brookfield
Zoo today
and
had a very nice time. One of the big hits with Sarah were the fish - they have
a nice well lit exhibit - and we also went to the Dolphin show. She got to pet
a baby chick and a guinea pig, and I'm pretty sure she was able to see one of
the elephants and 2 cows. A lot of the outdoor exhibits are made of colors that
blend in with the animals, so I don't think she was able to see those too well.
We had beautiful weather. We only saw about half of the zoo in
our 3 hour visit - if we get another nice day I would maybe like to take her
back.
Some of you know that I got a huge smile from Sarah early in
the week by playing the Musicgarten CD for her from the class
we were taking in the spring. I helped her do the actions - I really
think she remembered the songs. I haven't seen any music make her
this happy except for Miss Mary Mack.
Sarah rolled over by herself last week - with the help of
gravity (she was laying on a giant wedge) and a special therapy suit.
She also has been seemingly consistently using the sign
for "more" - I hope I am interpreting this right - it really does seem for real at times.
Dave ordered a digital camera for us - so before too long
I will be able to attach some pictures to these updates.
I am really looking forward to that.
Take care of yourselves, and God Bless you.
Love,
Sandy
_______________________________________________
2005
Hi Everyone,
39 hyperbaric treatments done, one to go! We will be heading home
tomorrow (Tuesday)! Dave and my dad are on their way up here as I
write. We meet with the doctors at 10am, including Dr. Harch who is
coincidentally in town from New Orleans the day of our last treatment.
Then at 11am, we dive for the 40th time, then come back and pack up the
cars and head home! YAY!!!!!!!!
Thank you all for keeping in touch while we have been away and we are
looking forward to seeing everyone! Sarah is doing well. Her progress
has accelerated the past 2 weeks or so. We are hoping to see even more
of this in the next several weeks.
Please keep her in your thoughts on Dec. 21st - she will be undergoing
a test at Cardinal Glennon that morning to determine if she is ready to
start eating by mouth. Everyone thinks she is - her therapists in St.
Louis and the ones up here, but we still have to do the test. If all
goes well, she will be eating with us on Christmas Day! I hope! Just to
clarify - even if we get the green light, she will only be eating small
amounts at first and will still be tube fed. But we have high hopes for
this.
God Bless you all & take care!
Love,
Sandy