Tuesday, November 25, 2008

Election Day Crafts

I know...I know....I'm slow, but you're getting used to that aren't you??

I have the hardest time keeping ribbons in Hannah's hair. If I tie a bow, it falls out by the end of the day. If I use a bow on a clip, it ends up down around her ear or something. So....tie some ribbon on a ponnytail holder and problem solved....except that this is the only one I've made so far.

Hannah was out of school for Election Day. She loves to do crafts and I found this one to try. I'm not sure that they turned out all that great, but they were fun anyway....once I figured out that a veggie peeler works better than a cheese grater.

Have a Happy Thanksgiving everyone!! Hannah's finally on the mend (although still wheezing a little bit) and we'll be on the road for a few days.

Thursday, November 20, 2008

In case you're keeping track

I took Hannah back to the ped yesterday (3rd time in 7 days) after she puked yesterday morning and did not get off the couch until 11am. Once there she had a temp of 99.something and still wheezing and O2 sat of 91. So, ped ordered a chest and head x-ray. Then, added singulair, duoneb (to be alternated with the albuterol) in the nebulizer, and orapred. Seriously...this is nuts. Chest x-ray was clear and sinuses impacted per the radiologist. I'll call the ped this morning. Last night she had a 101 temp and slept for 45 mins on the way home. I tried to get her to eat an ice cream sandwich and she wouldn't even do that. SURELY all of these drugs will make her better.

Tuesday, November 18, 2008

Advice Needed re: Memory Boxes

One of Jason's co-workers in Chicago has volunteered his group to make memory boxes as a team building experience. They volunteer every year doing community projects and this year they would like to help us. Obviously, I can't go to Chicago to help out so I'm thinking of ordering things online and having it shipped to them.

There will be 10-12 individuals working 4-6 hours on memory boxes. Do you have any clue how many boxes I should order? I guess I'll order paint, brushes, paper, stickers, etc.

They want to do this the week of Dec 9th so I need to get ordering. If you have any advice, please post. I want to make sure that this is a successful project. Thanks!

Friday, November 14, 2008

Emmazing Giving

The generosity of Jason's peers continue! This note was shoved under Jason's door while he was on a conference call. Desiree took part in the charity giving program for the first time this year saying that she was very moved by our story. As I talked on Monday, I saw her wiping her eyes.

Each day during the campaign, winners are drawn and money is sent to the charity of their choice. Desiree won Day 3 and has donated her $500 to Emmazing Grace. Thanks so much, Desiree!!!


Yep, add pneumonia to the list of Hannah's ailments. I took her back to the pediatrician tomorrow because she's still coughing non-stop. We saw a different dr in the practice. She says the wheezing is gone, but she can hear the crackling in the bottom of her right lung. She did not x-ray her. So....we're armed with breathing treatments and antibiotics.....surely she'll make the turn for the better this weekend.

Catherine - yes, her papers said RAD like you mentioned. This dr was no so convinced she has asthma. I don't know....will discuss it with the original dr next week at her follow-up appointment.

Thursday, November 13, 2008


My precious Hannah has a tough run of it lately. I'm a bit overwhelmed and not too sure which way to turn.

I've blogged about Hannah's balance and coordination issues, about her new shoe inserts, about the MRI and physical therapy. Well, Tuesday we had a follow-up post MRI with the neurologist. As I shared, the MRI was clear. Apparently, that doesn't rule out cerebal palsy. He confirmed that she does have very mild CP. I'm shocked. The good news is that....it is what it is....it's not progressive and she'll just continue on with her PT. But, I'm shocked and can't seem to process it all. I mean, it's obvious now that she has more than just "clumsy" issues. When PT pins her down on tasks, you can see leftside involvement too.

And, as if that's not enough news for the week, yesterday she was diagnosed with asthma. Since 2 years of age, she's had middle of the night croup attacks out of the blue. If you've never experienced one, they are scary!! She gasps for air, barks like a seal, has stridor, etc. Our routine is to rush to her, head to the little bathroom, turn on the hot shower. Jason sits with her trying to keep her from freaking out, while I rush to the frig to grab the steroids. You're supposed to grow out of the croup. It's caused by a virus, but children get it because their passages through their voicebox are small. She should have grown out of it by now.

She's had 2 attacks since starting kindergarten in Aug. Recent events (including inaccurate shot records, weight recording, missing the flat feet & CP, etc) caused me to change pediatricians. Yesterday I took her to a new one because she's had a cough (so bad that she threw up the night before) for 2 weeks, since her last croup attack. This is not even close to being the first time she's thrown up for coughing so hard. It is not uncommon at all for her to cough for 2 hours at night when she's sick like this. I've talked to every pediatrician that would listen at the old office.

Well, the new one yesterday immediately said she has asthma. She's now on nebulizer albuterol treatments. Her O2 sats were 89 and 91 yesterday before the treatment. This all confuses me too because I thought that asthma was the acute attacks with exercise and such. I guess I have a lot to learn.

Gotta run. Austin's ready for me to get off the computer. ;-)

Tuesday, November 11, 2008


The launch of the charity campaign went very well yesterday. Jason's company was very gracious and warm. The death of a child is not an easy subject to embrace and I can't thank all everyone enough for opening their hearts to the subject. We all wish there was no need for bereavement gowns/funeral costs, but the fact remains that there is unfortunately a great need.

I spoke in front of probably 75-80 people, including one of the VP's :-). Plus, the presentation was broadcast via webcam to a small group at a few other locations. The feedback so far has been very positive.

Thanks all of you that posted encouraging words yesterday. I felt your support, along with that of my precious Emma Grace.

Monday, November 10, 2008

Big Day for Emmazing Grace

Positive thoughts are VERY welcome....please be specific ....I need non-stuttering vibes, non-embarrassing vibes, etc.

Jason's company launches their annual charity giving campaign today. A few weeks ago, he was asked to tape a brief message about Emmazing Grace. He is featured in the launch video that is being shown throughout the US beginning today.

And, this morning, I'm heading into his office to speak in front of 150 people. YIKES!!! so..... positive thoughts, please. It's a quick "talk" and I'm taking some donations in with me.

Friday, November 07, 2008

Little late

Spooky Witch - Hannah insisted on being spooky this year and she's already thinking about next year
Puppy on the loose - Since Austin's first word was dog, we figured it was appropriate that his costume be a dog this year.

Just wanted to post a few more Halloween photos. We all had a great time. Hannah TorT'd 3 full hours. She was exhausted, as shown in the last photo. Austin was able to make it to 8pm, a full hour after his usual bedtime.