September 2009 - 4 years, 10 months
Friday, September 4, 2009 - Jenna
had a GREAT 1st day at school yesterday! She was SO excited to
get on the bus and made a couple new friends in her class. From
what I hear, she was wide-eyed when they took a walk down to the
library! We all know how much she loves to read books! Due to
our nursing situation, she had homebound instruction today. One
of her special ed teachers came to the home for 1.5 hours and
she did great. They worked on calendar, her name,
sequencing, etc. We are also hoping to start using her computer
more. There is so much potential on there for her, it would be
great to get her using it. The web cam/satellite school is
still being worked on. We are hoping it will be all set to go
in the next couple of weeks. That should be nice too, so she
can still interact and see the kids from her class when at
home. Mya & Kali had a great 1st day too! They like their
teachers and are excited about the new school year.
Thoughts and prayers going out to all the
sick kiddos! Way too much sickness for so early in the year!
August 2009 - 4 years, 9 months
August 10, 2009 - Four years ago
today, Jenna was diagnosed with SMA. She was given no hope,
treatment, or cure. They said it was a matter of time due to this
horrible degenerative neuromuscular disease. And here she is 4
years later. Here she is enrolling in Kindergarten. Here she
is driving her power chair around the zoo. Here she is swimming in
the backyard with her sisters. She has come so far. I am SO proud
of our little angel as she continues to fight and beat the odds
everyday. For such weak muscles, she is one strong girl!
So we are still getting ready for Kindergarten.
Sounds like everything is in place for Jenna except for nursing on
Mondays and Fridays. We just haven't had any luck finding one.
So if anyone knows of a LPN who is available those days from 8-4 or 7-3,
please let me know!!
And I wanted to thank all you for your support
during the 6th Annual SMArt Walk for A Cure. We had approx 400
registrants and raised $45,000! You support means so much to us.
Again, THANK YOU!!
July 2009 - 4 years, 8 months
July 28, 2009 - Lots going on
as usual in the Boguhn household. Jenna's room is done! Yeah!
We moved her stuff downstairs on Monday and she is lovin' it.
We still need to organize it a bit and hang the decorations on
the wall, but she is in.
Jenna is also using her power chair more and more. We are
trying to make it her primary chair so she can attend
Kindergarten in it. There are a few adjustments that have to be
done to it though. Her joystick needs to be closer to her so we
need to get the proper stuff to do that. We are also looking
into a wheelchair mount for her Quick Glance system, seeing she
will be using it at school too.
Our one nurse will be dropping Mondays and
Fridays as she just got accepted to graduate school. She will
still work weekend for us, but we need to replace her for the
other days. A new nurse is suppose to be starting (and
training) on Monday, so we'll see how that goes. Hopefully it
will all work out fine. Let's keep are fingers crossed.
Jenna has been getting out this summer and
having a great time. We attended the Walk for Independence
(The Independence Foundation) and had a butterfly friend
keeping her company. The thing sat on her hat for 10 minutes
during the walk and also hung out on her finger. The kids just
loved the butterflies as they just hung out w/ them. It was
really cute. We also went bowling too. Jenna did great for the
first hour then she had enough and wanted to take a "walk"
around in her power chair. Great practice for her too.
Well the 6th Annual SMArt Walk for A Cure
is this Saturday (August 1) at Beaver Island State Park on Grand
Island. Registration starts at 9 am, walk begins at 10 am, and
a picnic/basket raffle will follow. All are welcome! For more
information, please visit WNY
FSMA. Hope to see
July 2, 2009 - Once again it has been
awhile since my last update. Things have been pretty busy around here
as we prepare Jenna for Kindergarten this fall. Lots of things to get
in place. We are also in the process of building her 1st floor
bedroom/bathroom. The build is almost complete and everyone is very
Jenna is doing well on the liquid Albuterol. We
did drop her dose down a bit as her HR was high. Once we dropped it
down, her HR went down too. I think we just need to increase it
slowly. While on it, her voice has become louder and stronger and all
she does is talk now! It's pretty funny as we joke around that she is a
motor mouth now. She has also been moving her legs a little more too.
When I sit her up on my lap, she swings her legs. And she is also doing
well tolerating her feeds and calories since coming off the VPA. Her
calories are almost up to where they should be.
We tried to attend the SMA Conference in Cincinnati
this year, but Mya ended up pretty sick and we had to head home. Good
thing we did because Kali became sick that morning too. Both are doing
fine now and thankfully Jenna did not catch it. A few families caught
Swine Flu at the conference and one if hospitalized. Our thoughts and
prayers go out to the families!
The SMA Walk for a Cure will be held on Saturday,
August 1 at Beaver Island State Park at 10 am. All proceeds benefit
research and support for SMA! For more information, please email me or
visit our website at WNY FSMA.
Hope to see you there!
May 2009 - 4 years, 6 months!
May 27, 2009 - Oh my goodness!! I
cannot believe it has been a month since my last update! Wow, how time
flys! So lots of stuff going on. We have started construction on
Jenna's 1st floor bedroom and bathroom. It is coming along great and
probably be only 4-6 weeks until complete.
We are also gearing up toward Jenna transitioning
into CSE (Committee on Special Education) as she turns 5 in November -
and starting Kindergarten! We actually have a meeting this week, next
week, and the following week to try and get everything set up for summer
services and services for the fall. The only thing that we feel (us as
parents) we really need to work on is the nursing issue. We would like
to keep our same nurses as they know Jenna and know how to take care of
her. You would think this shouldn't be an issue, but unfortunately it
is. Hopefully this can be worked out for Jenna's best interest.
Well today we started Jenna on liquid albuterol.
We are hoping it will increase her SMN / mRNA protein levels and help
increase her strength. There are side effects and we are hoping she
will encounter none of them or at least very few! : )
The WNY Chapter of FSMA is preparing for our
upcoming walk. It will be held on Saturday, August 1 at Beaver Island
State Park. For more information, please email me or visit our chapter
website at: www.wnyfsma.org
Thoughts and prayers going out to all the sick
kiddos and those who are recovering from surgery. A couple of the
kiddos are now recovering from trach surgery, pneumonia, and some just
under the weather. Hugs and prayers to all of you!
April 2009 - 4 years, 5 months!
April 23, 2009 - Well it has been a pretty busy
day. Yesterday it looked like Jenna may have had thrush so she went to
the pediatrician this a.m. It isn't thrush, but nasal junk all in the
back of her mouth. When she woke up, she had some nasty secretions
too. The doctor put her on a Z-pack just in case while we wait for the
24 hour culture. Now she is running a 101 temp and HR 150 - 160.
On the good side, she also saw the cardiologist
today and did well! They were able to get the measurements of her left
ventricle, which was a problem last time due to the shape of her chest.
Well all looked good! Yeah!! And now on Monday, she will be off
to see the pulmonologist.
Last week we went to The Center for Courageous Kids
Camp in Scottsville, KY. What a wonderful place! The kids had a
great time and there was so much to do. They went horseback riding,
bowling, arts and crafts, swimming, wood shop, and more. It was great
to see the other kids as well.
Many prayers for all those who are sick!
April 12, 2009 - It has been over a month
since my last update! I cannot believe that much time has past. Things
have been going well. Jenna was sick for about 3 weeks back in February and
all in all doing well since then. We have just been pretty busy and have so
many things going on right now. We are getting ready to attend The Center
for Courageous Kids camp in Scottsville, KY. The girls are so excited!
We'll meet up w/ many other SMA families and it should be a lot of fun. We
have also signed the contract to start Jenna's addition. This will be SO
nice when completed. She will have her own bedroom and bathroom on the 1st
floor. She really is getting so tall that you need to turn your body as you
walk up the stairs w/ her so you don't bump her head! Such a big girl now!
Our thoughts and prayers are going out to all those who
are sick and in the hospital. A special prayer for Miss MaryAnn who was in
the hospital this past week - Hope you feel better REAL soon! Jenna misses
And a special Happy Easter to everyone!
February 2009 - 4 years, 3 months!
February 21, 2009 -
Jenna is doing much better. Over the last couple of days
her HR has come down. Thanks to another family, Jenna has a
new size Mic-Key button. They overnighted it to us and it
is SO much better. Her irritated skin (from the leaking) on
her tummy is already looking much better too!
Seeing Jenna is off the VPA, we are thinking of putting her
on Liquid Albuterol to help increase her SMN 2 protein.
First we need to have an EKG and ECHO done and we'll go from
there. I am a little concerned it will raise her heart rate
and difficulty sleeping (as the neb form did). From what I
have heard though is if you go slow with getting her on the
proper dose, it shouldn't be a problem.
After coming off the VPA, she lost some weight so we have
been working on her diet to increase her calories. I am
happy to say she is back to where she was! Yeah! Now we
would like her to put on a couple more pounds and get her
into the 20th percentile. That seems so weird to say as at
one point she was up to the 75th! With this weight loss, a
lot of her puffiness has gone down and her TLSO isn't
fitting anymore (again!). So I have scheduled an
appointment w/ the orthotist to come to the house and take a
look at it. She will most likely need to be re-fitted for a
I am also in the process of looking into Homebound Education
and Satellite School. Jenna's IEP is coming up soon and she
will be transferring to CSE (Committee of Special Education)
as she will be turning 5 (Holy Cow!) and enrolling in
Kindergarten. We are going to try to have her in school
during the so-called healthy months and have her educated at
home during Respiratory season. Hopefully we can get this
set up as a simple cold has her laying flat continuously for
approx 2 weeks. Wish us luck!
Sending many thoughts and prayers to all the sick kiddos and
all those in the hospital!
February 18, 2009 - Well we had a
record timing appointment in the surgery clinic today - which was GREAT
b/c I tried to not even go in, but they made us. So the surgeon looked
at Jenna's button and agreed w/ me that it was too big, leaking, and she
needed a size smaller. He also agreed that we really don't need to come
in and he was willing to write a script forthe measuring tool so I can
resize her button at home. This is great news except he is leaving in
April and who knows what the new Fellow will allow. Oh well, we'll cross
that bridge when we come to it.
Jenna's HR has been high. It is jumping from 130 to 150+ (her normal is
105-112). I really am not sure what it is. She says nothing is hurting
her, she doesn't have a fever, not really sure. Maybe her button is
bothering her? Maybe. The surgeon didn't put a new one in b/c we get
them from Home Care and I put them in. So I talked to the VNA and of
course they don't have her size in stock and need to order. So..... she
still has a button that is way too big and that is leaking. So if anyone
has a size 14 fr, 1.5 cm Mic-Key button they don't want, please let me
know!! : )
January 2009 - 4 years, 2 months!
January 29, 2009 - Jenna was doing a little
better this morning. Her HR and RR were lower and she seemed like she
was in a little better of a mood. This afternoon her nurse heard a
"rub" in her right upper lobe. Then tonight she had a small crash.
She was at 82 and I had a hard time getting her back up. We had to
pull out the o2 and w/ the cough didn't work. After getting her bipap
back on, we were able to get her to 96-97. After a neb and chest PT,
we coughed her and off bipap she was 95-96%. Then she asked to go to
bed. Poor thing has to be exhausted! Hopefully tomorrow will be
a better day.
January 28, 2009 - Good news and bad
news. Bad news first. Poor Jenna has strep throat and swollen glands. She
is running 102 temp, HR and RR are elevated. She isn't sleeping well and is
very cranky! She was put on Zithromax today so I am hoping she will feel at
least a little better tomorrow.
Ok, now for the good news. We received Jenna's urine
results yesterday and ALL IS NORMAL!! This is just great. That means the
Fanconi's Syndrome has reversed itself since taking her off the VPA. I was
so worried for her and now so relieved.
Prayers going out to all the sick kids out there.
There are SO many!
January 9, 2009 - Jenna's
running a temp again today. Yesterday it started w/ 100.1 and then was fine for
the rest of the day. She was quiet and acted pretty tired. This morning she woke
up w/ a higher HR, 102.3 temp, and diminished air flow in her left lung. After
her respiratory treatment, she sounded better. Motrin wore off this afternoon
and her temp went back up to 102. Had another respiratory treatment, still
sounded better than this morning and is now sleeping. I am hoping this doesn't
turn into anything!
Hugs and prayers to all the sick kiddos, especially those in the hospital!