I was searching the internet, trying to find cooling vests for Porter (until I can learn to sew) and everything I found was too heavy, too thick and too large until....I came across this vest:
Even though these ones were originally made (by one woman) for babies with scoleosis and only for their backs, I loved the design and called Heather in Colorado immediately. Heather is sending Porter one vest with a second set of cool packs and asked me to try it out and see how it works for him and to call her back and work with her on revamping the design for children with HED.
These vests have pockets for cold packs, which enables these children to go outdoors during the summer, and can keep their backs cool for approximately 3 hrs. Once the cold pack has thawed out, it is replaced with another frozen pack. All our parents agree that these cooling vests are essential in providing relief to their child being treated for infantile scoliosis.
Infantile Scoliosis Outreach Program
C/O Cerebral Palsy of Colorado...You guys rock!!!!!
I took this shot one day whilst hanging out at the boardwalk in Va Beach (back in December), but it reminded me of how my life is going in all different directions right now....from going back to church (a good thing), to Porter's health and education and more discoveries (scarey, yet a good thing in the long run), to changes in our home (always a good thing)...lots of directions.
The real 'good thing' is...
I know where I'm headed.
Linda tagged me....
The Rules:
Sorry for the dark photos...I took these at night after a long day. My new purse is not this funky a color...see the Metro bag below for a truer color.
OK, I got pretty lucky...I just got this new VB purse last week, so my purse was in pretty good condition inside. But, I usually keep a clean, organized purse anyways. I love Vera Bradley bags! This is my 3rd one....it's on sale since they are retiring this color 'Petal Pink'....
Other contents: hand sanitizer, hand lotion, Vicks inhaler, lipgloss, tissues, Burst mints- all go in the VB small bow cosmetic bag. Next I have: purse calender, checkbook, assorted pens, highlighter (for scripture marking), VB Wallet, notepad, keys on keyfob, pink cell phone, ear set for cell, VB Eyeglass case, sunglases, VB Coin Zip( Java Blue) for cards...oh, and a few receipts not in place...one from a Filipino store, another from Fiore (I also bought the Metro bag from Vera Bradley there....for my Sunday schtuff...scriptures, etc...since I didn't get the small lunch tote). Love it!
We arrived home after being out all afternoon, CHKD visit for Porter, a stop at the mall and then dinner out....but as we arrived home, the house was on the warmish side. James looked at the thermostat and it read 78 degrees...too warm for Porter, so as James got Porter hooked up to his TPN and gave him his meds, he opened some windows to cool the house down faster, since apparently our air conditioning unit is acting up once again (freezing over). About 10 minutes after James put Porter to bed, I heard him coughing uncontrollably...he was crying, coughing and gagging, but we could not find a reason....except he was clammy and hot and exhausted...so I stripped him down and we applied ice packs to his chest and back and tried to get him to gulp down some ice water (no such luck) he gasped for air over and over and clung to me as I rocked him, pounding on his back to help unclog his lungs and then patted him gently until he calmed down and started to cool off.
After 30 minutes Porter was fast asleep and James had gotten the temp in the house down to 71 degrees, although we still need to maintain a little cooler level, about 69 degrees for safety and Porter's sake. To some people, 69 degrees may seem down right chilly, but when you have a son who has proven time and time again that he can not tolerate heat....we do what we have to do!
I am finally calmer myself. We are calling the AC dude in the morning! This is a medical issue, so they always come out right away...but this has happened several times and it's not even wicked hot out yet. We may have to replace this unit. Now I REALLY need to learn to SEW, so I can make some Cool Vests for my son! I'm asking this gal at church to help me...she sews like the wind! This is the vest he will need to wear: Cool Vests
(you know I'll be checking on Porter every hour throughout the night too)....Porter having Hypohidrotic Ectodermal Dysplasia.....it's a scarey thing.
Here's my 'SWF' shot from Getaway...I think from Dar.
(most people say; 'Single, White, Female'...I say; 'Silly, Weird, Female').
We have been going to church every Sunday now....and LOVE this Ward! Everyone is friendly and they are a perfect 'fit' for a Home Ward. Get this....Cameron found a friend he knew from school, which turned out to be the son of James' co-worker, and a few moments later he found out that his Public School Teacher was this boy's Mother, aka: James' Co-Worker's Wife, aka: the Sister who taught last week's RS lesson, that I enjoyed!!! (see, I have never seen his Teacher in person before, because neither she nor I have ever scheduled a meeting since he's such an awesome student and the one time I was in her room...she was absent). We all embraced and Cameron grinned the biggest grin that never left his face all day!
So then, we had the Missionaries over for lunch after church. We made BUrgers and Dogs, pasta salad, seasoned fries and Snicker Salad...they took leftovers home and grinned. They loved that Snicker Salad...so here's the recipe:
| SNICKERS® BAR SALAD | |
1 lg. instant vanilla pudding
8 to 12 oz. Cool Whip® 1 1/2 cups milk 4 to 5 SNICKERS® bars 5 to 6 diced apples 3 to 4 sliced bananas Use 1 1/2 cups milk to pudding and mix until creamy. Add Cool Whip. Add SNICKERS® (cut in pieces). Add fruit to mixture. Serves 8-12. | |
Oh, and we and actually planned Cameron's baptism....Sat., May 17th 4pm.
Hmmm...now today I had a lab appointment at 8:20am, so I was up and outta here early to fight traffic. Took myself to breakfast at Baker's Crust, did a little shopping in Target, then headed over to TAPS (Teacher and Parent Store) to locate picture cards, etc...for Autism, so I can help teach Porter more communication skills at home....the Manager (Kerry) was excited to see me, because...she also has 2 children with Autism! We gabbed and she showed me what to buy...$130 later I was out of there with the feeling of excitement. Excited that I am getting things done to help my son! Excited that I met yet ANOTHER parent of a child with Autism! Excited about tomorrow's Pre-IEP meeting!
I came home and spent the rest of the afternoon making a communication binder for Porter incorporating these photos, velcro, word strips...the works! Then, I contacted Wendy Fitch at ABA. (Applied Behavioal Analysis) for a Therapuetic Program for Porter come September....it's going to cost me MULA! They only accept Tri Car, unless our BC/BS of TEXAS works with them....another phone call, left a message with 3 phone numbers for our Insurance Advocate to call me in the am, BEFORE the Pre-IEP (12:30).....WHEW!!!! Are we tired yet?
Oh....and I also ordered myself some Vera Bradley Goodness....all these babies were discounted, because they'll retire this fabric soon. I will have them in my hot little hands sometime next week, when they arrive UPS!!!
ALL in Petal Pink
Out To Lunch $15.00 was $25.00 (using it as a scipture tote- fits everything...wahoo!)
On The Go $37.80 was $63.00 (My purse)
Mini Zip Wallet $15.00 was $25.00 (smaller wallet, less cc's)
Hard Eyeglass Case $10.20 was $17.00 (Need the hard case...too many scratches lenses)
Small Bow Cosmetic $13.20 was $22.00 (lipgloss, tissues, etc...)
Subtotal:
$91.20
Shipping: $7.50
Tax: $4.56
Total: $103.26 (I saved $51.00 before tax/shipping charges!!!!!)
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I told James they could just be an early Birthday gift....my bday isn't until July 12th though....Oh Snap! hehehehe! (I'm worth it!)
New Fridge and Freezer are now coming tomorrow, since James cleared space and installed the electrical for them both...wahoo again!
Utility sink and washer and dryer need to get installed in garage this weekend, if James gets everything plumbed in time. He decide to install the leftover kitchen counter as a laundry table for me too, so we can fit the laundry sorter on wheels underneath it. We'll lay down the interlocking foam mats in that area too, so I have something cushy to stand on when doing laundry now. Fans are also in the garage, now just need more lighting installed.
So...see what I meant by the title of this blog post? (Where shall I start?). We are busy, but loving life!
Hope all of you are well. Be good to yourselves and one another, will ya'?
Updates as they come.
Peace Out!
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