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Archive for September, 2009

Just a super quick update since I’m pretty tired and may take a short nap.

Ally is doing better and now has lots of air moving in her left lung. Her right lung has stayed good. No more fevers since being admitted. Rapid flu and RSV tests came back negative, but we are still waiting on the others. We have gone to breathing treatments every 4 hours and will be switching to her home bi-pap without any oxygen. She is on her bi-pap breathing machine 24/7 as she is very tired needs the energy to get better. Things are going smoothly at the hospital.

There is hopes we might even get to go home on Thursday or Friday and that was without me even pushing it. I think it might just be a cold that can run its coarse at home with some higher bi-pap settings and extra treatments (as long as she doesn’t collapse a lung again). I will see how Ally does tonight and tomorrow morning, as we are still using o2 during treatments as a buffer. I don’t want her to catch any germs at the hospital, but I also don’t want to go home and come right back.

Thanks so much for all the prayers and well wishes.
My faith is in god to help Ally and give us the strength to get through these tougher times.

Check out the below amazing, short video that inspired me with tears, joy and hope. Ally also does this for me daily. We can learn so much from others who have disabilities. Hope you’ll take 3 minutes to be inspired too…
(hope this works)

http://www.facebook.com/profile.php?id=1578892044&v=app_2392950137&ref=profile#/video/video.php?v=103965021495

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Well here we are again (as some of you might have already read on Facebook). The change of the season begins, colds start in many people (including my 5 year old), and Ally ends up in the hospital AGAIN!!! I hate SMA soooooo much, but my little girl is mentally strong and brave and will get through this! She has been doing very well since July. She had a great Monday morning with grandma and good afternoon, but then at about 6 pm Monday she started to have some breathing trouble and lots of snot. Her lungs sounded a little coarse, but with lots of air moving and then within a couple hours her left lung was completely down. This time, there was no starting to get sick and being able to try to handle things at home. With her left lung completely down, we had to start to use some oxygen bled into her bi-pap and cough assist and she still had some drops into the 50s for oxygen (needs to be above 90). That means, we need help, and no matter how scary it is, Ally needs to go to the hospital. I cried for a short time about it, but need to be strong for her and accept when its too dangerous to handle at home (even though there are lots of dangerous bugs at the hospital too).

We got here about 12 pm Tuesday and they did a good job in the Emergency Room giving us a room right away and following my lead until a room was ready upstairs in the PICU (Pediatric Intensive Care Unit) at about 3 pm. We did an xray which showed her left lung completely down. Interventional Radiology came and did an ultrasound guided IV and got it on the second try which was great. Praying it lasts since Ally is a super difficult stick. We are now in room 216. Ally has been doing pretty well in between her treatments which are every 3 hours. She has an amazing respiratory therapist Loretta until 11pm. Treatments are rough since her left lung is down, but we actually heard some air moving on the left after the last one (right lung is doing good). So far, the rapid tests have come back negative for flu and RSV, but she did have a fever up to 103 at home, so something big may be brewing.

I am praying hard for a super quick recovery so we can get home to Kristyn, Melissa and Billy. We have only gone to school a few times this year due to nursing vacations/shortage & appointments, but I think we are done for the season. I hope we can try again in the spring when germs are less severe, but I just can’t take the risk. Ally will do homebound school, PT, OT and speech to be safe. The staff comes from the school, so we will still need to be extra careful about germs.

On a good note, we just did the MDA Walk this past Saturday with 55 walkers on the Ally’s Angels Team and raised over $4000 (thanks so much family and friends who were able to join us/and or donate). One day, there will be a cure for SMA.

I’ll update when I can on Ally’s site.
Thanks so much for your support, prayers and well wishes.

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9-7-09 MDA Telethon - Ally's Angels

9-7-09 MDA Telethon - Ally's Angels

We had a wonderful afternoon at the MDA Telethon. It is filmed in Las Vegas, Chicago and all over the United States, but what’s really neat is that the Chicago broadcast can be seen across the country on WGN (Ch 9 Chicago). This year it was our family (me, Billy, Kristyn 13, Melissa 5 and Ally 3.5), and my sister Tammy’s family. We got to the telethon at about 10 am and got to see many other families from the Chicago area, including our friends Chloe Ochoa (SMA Type 3), Logan Mitzel & Anthony (Duchene MD) and new friend Sarah. At about 11am, was the official family hour on tv. We were VERY lucky to be interviewed by Bart Connor, olympic gymnast. Check out our video (it’s bootlegged from my tv and Ally is super talkative/vocal in the background, she really enjoyed being on tv and seeing a computer like hers being used by someone else)…

At the end of Family Hour, the band “Train” performed two songs. Then, we got to hang out with them for a little while, take pictures and get autographs. They are really down to earth, nice guys and I will definitely be buying their new CD.

If you haven’t donated to the MDA already, please consider making a donation to the Ally’s Angels Team at https://www.joinmda.org/chicagozoowalk2009/AllysAngels
We will be walking in the Stride & Ride at Brookfield Zoo on Saturday, September 26th 7:30-11am. We’d love to have more team members too. It will be a really fun day! If you have joined our team, please be sure to let me know your t-shirt sizes ASAP. We are also still looking for a few more buisness sponsors to be on the back of our t-shirt (donation of $150 or more). A small portion will go toward t-shirts cost and the rest goes to the MDA as they work for a cure/treatments/support for Ally and many children and adults with a muscular dystrophy.

Thanks again for everyone’s support in donations, and most importantly in prayers and well wishes!!!

Enjoy the pics below from the telethon.

Please let us know what you think of our pics and video by making a comment below this blog post, on facebook, or emailing tina@angelally.com.

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