(latest updates are at the bottom)
I'm sorry that it's been soooo long since I've updated everyone on Ally. I really appreciate everyone's thoughts, prayers and support. I tried to be brief in this update, but sorry it is so long. There was just so much to tell!
Hope everyone is doing well. Overall things are going pretty well with Allyson. We are having some eating and feeding issues, but hopefully we will resolve them soon. She is having a gasteric emptying test this Wednesday at Childrens Hospital and I'm working on her diet. We had our 4th trip to California for Ally's clinical trial November 29 - December 2nd and it went well. We had to stay an extra day in CA due to the snow in Chicago, but Ally did wonderful wearing her bi-pap breathing machine on the plane. She also reached and passed her 10 month birthday on 12-2-06. Every day and month is a blessing. I keep praying that she will make it through her first winter without being hospitalized for a serious illness or complication. I hope this can really happen. I'd love to make it through all the holidays.
December 24, 2006 Ė
Ally and Krajewski Family Update
The holidays are
here and boy is it a busy time of the year. On Thursday 12-21, we
celebrated x-mas with my mom, sisters and their families. Ally sat
in her tumble form chair for about 2 hours while we ate and opened
presents. I'm so proud of overall how strong she has been. She
enjoyed seeing and playing with some new musical/lighted toys. On
Friday 12-22, Allyís godfather, Jimmy got married to a very sweet gal,
Tiffany. It was an AMAZING holiday themed wedding.
Kristyn was a junior bridesmaid and Melissa was the flower girl.
They had a special blessing for Allyson at the church.
At the reception, Santa came and Ally (and I) sat on his lap.
Iím so glad that all the girls got to see Santa this year.
On Saturday 12-23, we celebrated x-mas with my father and my
sisters again. Ally received some more special angel gifts.
We are beginning to collect angel things for her and our home.
Now, it is Sunday 12-24, and we will be celebrating x-mas with
Billyís family. I know I
must sound crazy with all that we have been doing with Allyson at this
busy, cold and germ-y time of the year, but I think it is very important
for her to be around family and part of these special occasions.
I am trying to be careful with germs and we carry all her
respiratory equipment along so we can do breathing treatments often.
Iím sure I will become more cautious over time, since many SMA
families stay home in the winter, but I want life to be as ďnormalĒ as
possible and Ally to feel everybodyís love around her.
I also want to share her special smile and special twinkle in her
eyes with everyone. On Monday
12-25, we will have a nice morning with just our immediate family.
Later in the day, the oldest girls (and maybe I) will visit my
cousin Loriís house for the final x-mas celebration.
Our next trip for Allyís clinical trial in CA will be January 4-6th.
Kristyn will be coming with us to learn about what Allyson does
every month. We did have to
pay for her flight, but I think it will be a great experience.
Melissa will be staying with my sister Tammy.
All of our flights for Billy, myself, and Ally (flat on our laps)
have thankfully been paid for by medical charities, but our trips are
still very expensive with car rental, hotels, eating outÖ.
I canít wait until we hold the fundraiser for Allyson on February
3rd. This will
also be a 1 year birthday celebration for Allyson since her birthday is
Allyson had 2 major tests done at Childrenís Hospital in Chicago
this month. One was a gastric
emptying and the other was a g-tube scan (x-ray) to try to find out why
she is having some respiratory complications when eating.
Both tests came back completely normal, which is good, but we still
donít know what is causing the complications.
We continue to tweak some of her medications and her feedings and I
think it may be getting better.
As I mentioned earlier, Ally has really been doing pretty well with
her strength. She will sit
(supported) for up to 2 hours at a time (if she is in the mood and is
supervised). She LOVES
watching Teletubbies and doing sign language movements to Baby Singing
Times. We now have 3 great
nurses who help to take care of Allyson M-F from about 7:30-5 while Billy
is at work. We also have some
dinner shifts so that I can cook more often.
I am there too, but it is wonderful to have an extra set of hands
and someone to help. I can
even run a few errands when our nurse, Nicole, is working since she has
known Ally since August and has helped us through a few major breathing
scares. I try not to leave
the house too often, but it is nice being able to get a few errands done
here and there. I was VERY
fortunate to have my hair colored, cut and styled this week, thanks to a
super nice friend Alisa who paid for it as my x-mas gift.
Itís getting too hard to travel to my friend Christieís salon
in WI. I need to continue to
do small things for myself here and there because it can really lift your
Another thing that has lifted my spirits lately is all the contact
I have had with other SMA families online and on the phone.
Itís neat to be in contact with others who are experiencing the
same things we are. It also
helps to learn from parents who have SMA children aged newborn-11 years
old and even some adults with SMA who are beating the odds.
I have also been talking and helping (a little) some newer families
to SMA. Iím now the
secretary of the IL chapter of Families of SMA and look forward to
spreading awareness and support in the Chicago area.
Ė I better end another one of my long updatesÖ
Please be sure to visit Allysonís
websites and also let myself or my sister know if you are interested in
attending the Angel Allyson Fund Banquet on February 3rd or you
would like to purchase or sell raffle tickets for a great prize or the
50/50 cash raffle.
again for all your support! Happy
Holidays to you and your family!
December 30, 2006 - Beginning of Pneumonia Episode