shopping with a lung disease...yuck

So I take Julia to shop for "back to school" clothes. Not a favorite of either one of us. Shopping is just not our thing. We left home at 9am. Drove 2hrs. Picked out 3 new outfits, tried on about 6 pairs of capri pants.......so frustrating having a child who is so skinny that the clothes that actually fit are not age appropriate. Sigh!
By noon we were hungry. After lunch Julia just became so tired out. I felt bad because I had thought of bringing the oxygen but decided against it. She has been doing so well this summer and well it is a pain in the arse to haul around, even though we have one of the battery portable oxygen concentrators (Inogen One ...it rocks!)
Poor kid slept the entire 2hrs home, ate very little for dinner and went to her room. She put her oxygen on herself and is watching a movie.
After all of this .....we still have to find some new shoes for P.E. class....crocs are great but not all the time.

Homecoming

It is official, Julia will be doing her Hike for Lung Health at 6pm on Friday, September 26, 2008. This is Sulphur High School's football homecoming game. We hope all of you can join us in Julia's quest to increase awareness of this rare lung disease. I have spoken with 5 other families whose children have varying severity of the same lung disease Julia has. They may possibly be joining us that night for the 1mile walk around the track. For more information feel free to contact me via e-mail or phone 405 615 8154. If you would love to help me out with this fund raising ordeal PLEASE call me. Julia and I are great at showing up to tell her story, smile and looking pretty, but organizing something of this nature takes talent and help. To learn more about the Hike for Lung Health go to
Hike For Lung Health

Jennifer Goodnight-Roberso(Mom to Julia age 7yrs with chILDren's Interstitial Lung Disease0

chILD Mystery Diagnosis iPodcast

Listen to the podcast version on the Discovery Health's Mystery Diagnosis show on chILD. "Lariah Palma"
Mystery Diagnosis Podcast

off to D. C.

Just wishing my friends Ann and Liz good luck as they hit D. C. to give a speach on child safe medical equipment. They are taking with them several stories and hundreds of pictures of small children tangled in oxygen tubing, children pulling out feeding tubes, children with huge oxygen tanks to lug around, and much more. May their voices and our childrens' pictures make way for some equipment changes.

Living to Breathe

Hike for Lung Health 2008

I just wanted to remind everyone about the Hike for Lung Health.
Julia will be participiting in this again this year. We will be doing the "virtural" walk meaning we will be walking here in our hometown and not in Chicago, but hey the money is all going to the same place for a great cause.
http://my.imisfriendraising.com/personalPage.aspx?registrationID=260181&LangPref=en-CA
That is the link to Julia's fund raising website.
Here is the link to the YouTube video from the Hike for Lung Health group.
http://www.youtube.com/watch?v=Ro6wmiPajLU

new oxygen tubing and cannulas

Hip Hip Hurray we got new cannulas and tubing today. And I finally (after 4yrs of Julia having Oxygen) , got swival clip connectors. Why on earth we were never given these to start with I will never know. Julia can now go 107 feet and not get caught on corners, furniture, toys, you name it. Of course it took me asking for a "water trap" to even get one of those way back when. Now we love our O2 man dearly, but you can tell that most patients who use oxygen are elderly adults who don't have to worry if the tubing will stretch from the house to the trampoline. I am so glad that two of the moms from the chILDren's Interstitial Lung Disease Parent Support group will be attending the medical device workshop in Washington D.C. soon. They are planning on having about 200 people from various groups that are interested in pediatric device development. They have expressed great interest in our stories and have asked us(chILD) to present in 2 different sessions and have asked Ann Gettys to be on a special panel at the end of the meeting. It is all very overwhelming, but it is a great venue for us to get our kids stories out there. I will post what she has to say when she gets back. Liz Jenkins will also be attending with Ann on behalf of chILD. For all you Oxygen dealers and RTs who read my posts try to remember not all of your patients are old farts. Some of them are snappy, sneaky, Houdini-like, little blonde hair girls who will put you through any test. Most worse than you will ever encounter in school