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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Saturday, March 29, 2008

Haley's Star Raising, Easter and a Brett Michaels sighting.

These are all the stars from Make-a-Wish.....
Haley is pulling her star up
Ry wanted to make a wish too!!! It was all so special and neat...But, alas we do not want to go through all the things you have to go through to get to make THIS kind of wish! We are so glad our little friend is doing so well and glad she was able to have this.
ME!
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These are a few family Easter pics

Jeff dressed up like Brett Michaels from Poison for an Elders Quorum party..Check out his sweet mullet..

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Friday, March 28, 2008

Photo Contest

Okay all my photog buddies... I just found out about a contest in West Jordan... I think we should all enter and see what they think... The contest title is "West Jordan-In, Out, and About"..... If your interested there are Cash prizes... If you want more info email me and I will tell you the rest....Brynn

Thursday, March 27, 2008

I woke up this morning to two more inches of SNOW!!!! Most of it has melted this afternoon... Crazy mixed-up West Jordan, Utah weather....

Wednesday, March 26, 2008

I love the warm weather.... We just want to be outside enjoying it all day....We decided since Alex doesn't seem too sick to not get him on an antibiotic and try to regulate his flora with lactobicillis...He seems to tolerate it well and his doing a lot better. Ry is taking the cranberry juice just fine and hopefully she will stop having her "hot" peepee soon.

Our little Gracie friend has had a rough go. I wish there was more that we could do for her sweet family.. Please remember an extra prayer for her. We know what power this has. These prayers lift you and carry you through these very hard times...

We feel more normal everyday as things slow down for our medical things and speed up in fun...

Monday, March 24, 2008

Baby Grace

Today is a big day for Gracie, she is having the Norwood... We just wanted to add our prayers, and if your reading this maybe you could say a little prayer for her, and her sweet mommy and daddy and her very loving brothers and sister. It is a long emotional day and the next twenty four hours after surgery are soooo crucial.... You can leave her a comment of encouragement at http://thegledhillfamily.blogspot.com

Sunday, March 23, 2008

Happy Easter!!!

This is a special day for us... As we remember the resurrection of our Savior... It has meant more and more to us as we have experienced the losses of so many sweet babies and also learning to trust in Him more as we have faced Alex's challenges...We are so grateful to understand that the Savior lives again and we find great comfort in the fact that families are forever and those special sweet angels can be with their families again... WE KNOW IT.... We also got a phone call this morning but didn't check messages until tonight... Alex's stool tested positive for c-diff. Good thing we had our ER visit so that it was found out early and he doesn't seem too sick...LOL... I think I need to have Ry tested as well because she has been complaining of a tummy ache for two weeks...and tonight she said her peepee was hot! that sounds more like an infection... So we will be calling the Ped Dr. tomorrow to sort it all out... We hope you had a great day as well....

Thursday, March 20, 2008

Feeling fresh!

As you can see we had a little face lift.. I love the new background dreamed up and designed by Heather Carson http://thecarsonians.blogspot.com/..... I love it... It feels good... Well here are a couple of little updates... We spent a good part of the night at PCMC emergency room last night... It was the worst stay we've experienced so far...Not because of the staff... not because of the reason we were there (Alex had blood in his stool) & ( a nasty rash all over his body) but, because it took soooooooooo long... We left our house at 6:45 pm and didn't get home until 3:30 am.... Whew! It was a hopping place last night... We found out he has a little virus that causes skin irritation and he most likely has fishers in his booty that are bleeding because of the loose stool from teething... So nothing too alarming, but better safe than sorry.

Sunday, March 16, 2008

Princess's



CHRISTINA....THANK YOU Thank You!!! We had so much fun at princess's on Ice... We did Ry and McKay's Hair all cute with glitter, we got matching princess outfits... We would have had some awesome treats too, if they hadn't been confiscated at the door... Ry is still talking about how much fun we had....





As you can see we had a blast sitting with all our friends... Emily, McKay and Ry loved sitting together and Miss Kenna shared her popcorn with everyone.. I think I sat on Melissa's hair ten times....(sorry again..) we just loved seeing everyone!!!! I had my telephoto lens so I was able to get some pics that looked like we were on the front row... It was amazing..
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Thursday, March 13, 2008

Work outs!

We are gonna PUMP you UP! We visited the early interventionists yesterday. We are so happy to be as far along as Alex is...They couldn't believe that he eats as well as he does; for a heart kid that is amazing...Plus he is on the higher calorie count formula so it is an even bigger surprise. He has in the past month exploded into doing things on a typical time frame... He has been babbling and can finally say mama!!! we are going to be working on a few things over the next six months to keep moving him forward. Some of those things are strengthening his under used muscles, teaching him ASL (just a few signs), encouraging his left side, because he seems to favor his right (silly boy) Rolling from back to belly, transitioning from back to sitting, gross motor skills, and we will start the very first stages of crawling... Yes, these things we usually take for granted... It was very interesting to have all of steps broken down. We just do them.. With Alex we have to teach him... Julie, also said that she was surprised he sits up so well... I was happy to hear it all... Even the work out parts, now I will know how to help him better... They were so funny about Ry too! They said she for sure didn't need speech therapy, funny little girl "like a teenager trapped in a three year olds body". You would not believe how happy he has been these past days off his leash... he can finally turn his head with out looking weird and pulling his cheek...WOOHOOO!!! Tomorrow is Synigis for Alex and Princess's on Ice for Ry.. Who probably won't be able to sleep tonight... (Maybe that's me).. Have a great blustery day!

P.S. I also wanted to let you all know we are not going to be put away forever for our Target theft...LOL...HEHEHe.. It was a really small clacker toy that Ry let Alex play with, Well he was in his car seat and it fell to the side of him... I usually check those spots but forgot this go around... We ended up walking out of the store with it nicely tucked away... I found it and decided we need to repent and return the dollar item or pay for it, the last time we went I gave the cashier and extra dollar.. No harm done.. The stolen tube of lipstick happened in much the same way, although I don't think my mother-in-law minds all that much... Or at least she hasn't missed it yet...Whew! I feel so much better with that off my chest....

Monday, March 10, 2008

#3

It was a big happy day for Alex... We had a very early cardiology appointment today..It seemed even earlier with the time change...I don't know if you all feel it, but we do, this will take a little getting used to...I will tell you about things as they happened there..First we had and x-ray...His lungs looked awesome, his heart size looked good the only little thing is that his left diaphragm is raised. It was explained to me that his diaphragm helps him breath and take deep breaths...So this being raised will need to be watched and monitored, but is doesn't seem to be a source of scare. Then we went to Echo. He was such a good boy and helped Evan hold the wand while they took pictures..The Echo looked great he has better function, he still has mild to moderate leakage from the tricuspid, but this is another thing to just watch and monitor, if it doesn't seem to make his heart work super hard it isn't horrible, he also had little to say about the pulmonary artery, so no news is good news to me...They still see the blood clot, the worry is that it will break apart and a piece will find it's way to his head and cause stroke and seizures, but so far it is not growing and doesn't seem to be giving him infections so we will just watch it for now.... Then we visited with Dr. Su.. Who said most of these things and also said we can go off of his Lasix in a week and he is done with Previced. When we are done with Lovenox we are done and I think there is only one or so more Synigis shots left....He will stay on asprin and Enalipril, but TWO meds I can live with that....And the best news....Alex gets to be free from his leash...That's right he can go off of his O2's in the day and will still need it at night for a little longer..This is really convenient because our handicap sticker expires tomorrow...No more lugging around that heavy tank.... So if you can believe it we are so stink'in happy... For the most part this was a very positive appointment and we will just keep moving in that positive direction.. He meets with Suzanne, his developmental specialist on Wednesday, she is bringing a PT so hopefully can get jell-o legs using those feet and legs for something other than toys.... Thanks ever so much for the thoughts and prayers... We will certainly be posting after Wed. and of course Friday when Ry goes to see the Princess's Ice skate..... If you want me to take anything to the Pearson's, we will be seeing them this weekend at princesses... I would be happy to be the in-between if you'd rather not mail...Thanks again..The Homers

#2


for adults.... The kids had a great time...

Don't you think this pie looks heavenly..This is from the Deheer's. Yvonne has been going through some heart surgeries around the same time as Alex and is amazingly graceful about it... They brought this to us explaining that they heard from a little bird it was my favorite... It is forever on my hips now, but it sure tasted wonderful..Thanks guys.



When this bloomed it felt like Spring was around the corner...Even though this is a winter flower is still made me happy about spring...
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the Low Down


We Visisted the Circus this weekend and had a blast... This is another of my attempts to give Ryleigh some special attention... We got all the kids tickets for free, no wonder they could get in for free, it was 16.00

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Thursday, March 6, 2008

What's in your wallet?

I got tagged by Melissa to tell what's in my wallet (bag, purse, diaperbag, etc.). Since my purse is in my diaper bag, you're going to get it all!!! Here goes!!!

1. 4 Similac powder packets
2. 1 entire package of Similac power packets
3. 1 bottle of water
4. 1 clean bottle
5. a container of diaper wipes
6. 3 size three diapers
7. 1 pair of blue stripey socks
8. 1 black and blue beanie
9. 1 "B is for Bus" blue onesie
10. 1 Safety First dirty diaper bag dispenser
11. 1 bottle Tylenol infant drops
12. a "Put me in the Zoo" boardbook
13. 1 cute Fisher Price toy Grandma bought
14. 1 nasal bulb syringe
15. a polka dot alligator toy
16. Grandma's pick that Ryleigh stole
17. Dr. Smith's diaper ointment
18. Lush Lip Gloss (pink sparkly!!)
19. pencil
20. Toothette mouth moisturizer
21. Avagard-D hand sanitizer
22. a squeaky alligator toy
23. a stolen toy from Target (long story)
24. my Travelon - in my Travelon: toothbrush, a pair of tweezers, little spray bottle of water, thermometer, thermometer shield, comb, six alcohol prep pads, 2 hair ribbons, 2 clips, small pill container full of hair elastics, 5 safety pins, 8 bobby pins, velcro cuff, Tylenol, bandaids, tendergrips, $1.00 in change, 3 zip lock bags, 2 disposable plastic gloves) WHEW!!!
25. Purell sanitizer
26. business cards
27. Valentines M&M's
28. 3 face masks,
29. Maxi-Pad (with wings)
30. Travel Aleve container with 4 pills
31. M&M Minis
32. Gum wrapper
33. Nuk slow flow nipple
34. Stride Gum
35. Tic-Tac container with 1 Tic-Tac
36. 2 barbie stickers
37. a sharpie, a pen, and a baby spoon
38. another toothbrush
39. chapstick
40. 2 3x5 cards (1 folded and written on)
41. a mint wrapper
42. another empty gum wrapper
43. Now for my purse, here goes!! A half eaten bag of Skittles, keys to the Honda, keys to the Toyota, key to Grandma and Papa Homer's, key to Papa Homer's truck, mail key, key to the house, 2 sided mirror (one side magnifies), OPI lotion, a hair elastic, a key to Taylor-Andrews, a tube of lipstick I stole my from mother-in-law, a tube of Bath and Bodyworks menthol lip balm, DoubleMint Twins mints, $1.81 in change, a handy dandy leatherman, my hectic thoughts notebook, sharpie, card wallet, photo book with pix of the kids, 3 tithing envelopes with tithing in them that haven't been given to the Bishop yet, Alex's medical card, Ryleigh's medical card, Bed, Bath, and Beyond coupon, another hair scrunchie, Mom and Daddy's checkbook, Alex's checkbook, my prayer notebook, 2 year planner/calendar, my cute little wallety thingy with birthday money and checks to take to the bank, $35 in cash, a pen, skittles in the bottom that I'm now eating, an empty gum wrapper. WHEW!!!!!!!!!!!

Tag, you're it!!!!!!!!!
Jen England, Terry, Jennylin, Mindy F., Heather C.

(Actually, this is Diane, Brynn's mother-in-law. I have been typing this as Brynn has emptied her bags. We can hardly see through the tears as we laugh our guts out!!!!!)

That's all folks!!!

Tuesday, March 4, 2008

Little Mug


This is a little preview of Alex's birthday pictures that I have been working on. It is interesting to see him without his O's. He looks like a totally different little kid.
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Monday, March 3, 2008

sniff!

Well we didn't get the princess wishes prize....Have no fear we are still going... And for free..Our friend in the support group Christina http://jacobsheart.blogspot.com called and was able to get a few tickets. We feel like winners because of her..We are so excited and can't wait to see the princesses ice skating. Plus not only do we get to share this with Miss McKay England (who Ry invited as a special friend) but we will also get to see a bunch of our heart friends too...Thank you everyone who took the time to vote for us...We appreciate it soooo much....

Saturday, March 1, 2008

I am messed up!!!!

We are all doing well and have been doing our regular things.....It seems like we have a new specialist or Rx to see or fill everyday.. I am doing hair now and seem to have most of my clients calling. They have been so kind to wait for me and get it done when we can... I am learning to juggle the kids and do hair at the same time. Alex is usually sleeping, Ry is hard because she wants to be right in the action. Those of you who have experienced her sitting on your lap while you get your hair done, know I feel horrible.... But thanks for your patients.... I feel like my social skills have gone completely in the toilet since we have been so focused on the hospital and staying well..I don't know how to talk to adults or to make simple things like visiting teaching go smoothly...So sorry if you've had to deal with me lately.... Anyway... I thought I would check in and say nothing has changed....