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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.

Monday, August 27, 2007

Surgery Scheduled

We went to Alex's Cardiology apt. today. They were impressed that we have been packing on the lbs. he is at 12lbs 12 Oz's. I mentioned that we wanted to have his Glen done while Ry was in Florida. So Sept 21st Alex will go in for a cardio cath, and on Sept. 26Th he will be having his Glen.... I will write more later... Just a little tired tonight.

Saturday, August 25, 2007

Sun worshipper and mush mouth


This is how Ry catches her rays and the other picture is of Alex trying rice cereal for the first time.

Thursday, August 23, 2007

A few new things.

Yesterday was an event. Alex went to the pediatrician for his four month well baby. He got his shots and did well the rest of the day by sleeping. Last night wasn't so hot he got up a bunch and had a low grade fever..... those things are normal.....these are the new things.... He weighs 12 lbs and 10 Oz's, he can come off the Zantac med, we can reduce his calorie count on his formula to the normal mix ratio, and he can start eating rice cereal.... it is all so exciting to have normal baby things for him. He was in the 15Th percentile straight across the board for his height, weight and head circumference.We have to get past the post shots blues but I think he will be fine. His cardio apt is Monday I wonder what they will say. His ped said "It wouldn't surprise me if they want to give you a date on Monday" so I guess we'll see.

Monday, August 20, 2007

Our friends the Dumas's


Three generations of baldies.....Our little Haley was loosing her hair in clumps. I can't imagine what that is like for a little girl (or her mother who is a hair dresser, for that matter) So to show our support Jeff bic'ed his head. We hope the best for the family. She has an amazing story, you can check out her family blog by clicking on Dumas's link under friends on our blog. I think they will post pictures... Although Hays has no hair, it won't surprise you how beautiful this little girl is... She is darling. good luck guys....As for the guys.....They all look more like each other now.....
You will never guess what I did. That thing on Ry's face was slowly getting better and I put her in the tub last Thurs. only to have the yucky scab almost fall off. I helped it a little and it began to ooze. So I laid her down on the bed and squeezed a little until this huge core popped out. Oh it was so gross. The thing was the size of ten big zits...EWWWW. I don't like to pick other peoples zits (gagging). I do like to pick sunburns. It bled and Ry screamed.... Needless to say it is looking sooooo much better. I forgot to tell you that Alex is up to 12lbs and 4 Oz's now. He is doing so good right now. He has the yummiest rolls under his chin. And you can actually see the dimples in his elbows and hands now. On Saturday I cut off his mullet. The crazy hair on the back of his head that look more like a go-t (sp?) on the back of his head than anything else. We think he is going to have curly hair. It looks curly when he gets out of the tub and I gel it a little on Sunday to get it to spike.... So cute.

I have to tell you a funny story about Ry.

The other day it was getting late and Ryleigh was very tired. I was feeding Alex and she came into his room. I told her to go get back in bed. She didn't want any of that and started ranting and whaling and carrying on. Well that was all she could take and raised her hand, just then dad came in noticed she was about to hit me and said..."Don't you dare hit mom!!!!" knowing full well she had been caught she smartly replied "High-Five mom!" she saved her back end, WHEW.......

Well that's it for today. Kind of a random collection of things.... Brynn

Thursday, August 16, 2007

Twilight, Collin Raye, hypoxia

So I finished a new book called Twilight..... Preslee, Lisa and mom all read it before me and said it was a good read. I loved it and can't wait to read the next one. Last night Jeff and I went to see Collin Raye. He is pretty good, but we both agree we like to listen to the nice, perfectly recorded version. And yesterday we took a little visit to Primaries after Alex had a little hypoxia (his sats were on the low side) everything was fine and we got to leave in a short time. Ry is almost over her thing.. and we are cruising along now.....

Sunday, August 12, 2007

Ryleigh's turn!!!

You will never believe what Ryleigh had, has, is getting over. A huge boil the size of a dime on her face by her ear. It was this huge painful gross thing.... I thought that it was a bug bite or an ingrown hair and it just never went away, I even tried digging at it with a pair of tweezers (with much crying and screaming) but it wouldn't get better. I ended up taking her to the Dr. and she decide we should lance the sucker for draining. It was so painful for Ryleigh, she was a total trooper through the whole ordeal. They swabbed it and sent it for a culture that came back with staph -infection, or a boil. We have her on a very strong antibiotic (clinda) and we are also doing compresses 3 times a day with a topical antibiotic. We are a regular RX at our house. Other than that we are doing great. Alex is making the cutest giggle noises now and weighed in at 11 lbs 12 Oz's last Wednesday. We worked on the yard again this last week, it looks amazing. Thursday was Jeff's 28Th birthday. Ry helped all day making signs and writing in cards and she even helped build his cake.... I took loads of pictures I need to download a few. I tried to spoil him a little, my mom and 'lil sis came up to watch the kids while we ran away to dinner. I hope he had a nice day.. We sure do love him....

Monday, August 6, 2007

So much love!!!!

Even before Alex was born we have received so much love, support, and service in our behalf...... From our home teacher's entire family helping to weed, to Chels coming over so I can get a quick shower. We have so appreciated everything.... You would not imagine how grateful we are. I would be so crazy to say that we are ever so thankful for our entire ward to have fasted for us, thankful for all our "heart" friends who have done it all before so we aren't quite so scared, thankful to our parents who have diligently given of their time to help with both kids and cried just as much for our hardships. To our grandparents who have loved from a distance and sent wonderful words of encouragement and some very needed $.... Thankful for the England's and the Gammon's because their friendship is a huge help in our sanity. I am thankful for all the families who have watched Ry and taken such great care of her. Thankful for the Hansen's for putting up with our weeds and watching my kids so I could go to the dentist.... So thankful for big brothers and sisters-in-laws and little sisters who love us and helped us near and far... We love you all.. I could never give back all that you've done.... I hope to share all that I can because of your example.....Love Brynn

This picture is of our Home teacher's family (The Mocks) weeding our front yard while I spied and stole a few pictures through the window...... Thank you

I got tagged too!

My sweet sister-in-law Lisa, tagged me, I don't have a very exciting life so if you get bored just skip this entry....

4 Jobs I've had: (ones I liked)
1.stylist at home and instructor at Taylor Andrews
2. house keeper at a funeral home
3.Candy bar girl/birthday party hostess at Classic skating
4. Teachers Aid at elementary school

4 movies I could watch over and over: (this isn't a choice is it)
1. Shreck 1&2
2. Cinderella
3. Little Mermaid
4. Thumbelina

4 of my favorite movies:
1. Emma
2. You've got mail
3. Little Women
4. Princess Bride

4 places I've lived:
1. Orem, Utah
2. West Jordan, Utah
3. Lehi (hated it!!!) Utah
4. Tacoma, Washington

4 favorite T.V. shows
1. Prison Break
2. Doodlebops
3. Signing time with Alex and Leah
4. Hannah Montana

4 favorite Reality T.V. shows
1. Design Remix
2. Freestyle
3. So you think you can Dance
4. Survivor

4 Favorite foods
1. I love food I can't pick one... It would leave the others out

4 Wed sits I check daily:
1. Email
2. blogs
3. hgtv.com
4. Anything related to Alex's health

4 Favorite hobbies: (I like to do things when I actually have time)
1. photography (still a a hobby and learning)
2. reading
3. gardening
4. Organizing..... Lisa and I both love this...and new storage containers...( i should have stock in glad or plastic totes)

4 friends to Tag;
1. Heather Carson- like you have time!!!!!!
2. Jennylin Quinney
3. Jen England
4. Alisha Homer

Saturday, August 4, 2007





1-ry and haley in the tent at "The Race"

2-Ry is sleeping to nicely today....

3-Alex Too!

Look!!!!

We Got Grass!!!!! we wished we could have done this sooner, I guess if we hadn't saved for this, we wouldn't appreciate it as much..... Jeff was so happy about it he checked it out like ten times through the window and went out back to just sit and watch it grow..... I know there is still a bunch of work to do, but this seems like a huge hurtle. I am so proud of my big boy! He might be happy as a camper now, just wait until he has to mow it for the first time. Which he has informed me will be August sixteenth. It has been a crazy week trying to get this all in, plus: We got the results back from the Dr and Alex is C-Diff free. I know it was the amazing prayers. Thank you! Then on Friday morning I took both kids to Park City to meet my mom and do some power shopping on Friends and family discount day. I got a few items for Christmas and I can't pass up bargains like $1.50 outfits at Children's' Place and really awesome bargains at Old Navy....(3 bucks for a pair of jeans, for Ryleigh) My favorite finds were the 5 pairs of little girls tights at children's place for .25 cents each. Then we rushed home for grass. We had so many people help and offer to help although it was put in rather fast and done before many could get off work and over to help. Thank you anyway. After showers we all went to the park were our little friend Haley is doing the "Race for the Cure" we wanted to show our support. Jeff and Alex walked and Ryleigh and I did the bounce house and ran around the field. Ry cried most of the way home because she wanted to stay and sleep at the park. Today we are going over to Jeff's folks, his mom has been in the Morman Tabernacle Choir for 20 years. She has dedicated so much of her time and talents to the choir and we are celebrating her efforts and her retirement. Tomorrow will be her last performance. It is starting to feel like our crazy lives again. I will post a few pictures of the "race" and some of Diane.....

Wednesday, August 1, 2007

Today we took a stool sample to the Dr. and we are waiting to find out if Alex is completely over C-diff. I hope so, I don't like that stuff very much. He seems overall a lot better and is gaining weight. Our home Health Nurse came today and Alex weighed in at 11 lbs 7 Oz's. We found out the hard way how picky he is about food He can't just have the good'ol, huge, cheap, Members Mark Sam's club formula. He has to have room temp, bottled water, Similac with Iron, from the Nuk slow flow nipple. I guess he can be a little picky about some things. He also is learning to bring his hands to his mouth and makes cute little gurgle noises and smiles. We haven't heard him laugh yet but I think that will come soon. He is holding his head up well now and I think he is just doing so good. Ryleigh is still our adventure queen. It seems like she bumps her head or scrapes her knees daily. She loves to be right with me with what ever I am doing. In other news we are getting sod in the back yard on Friday. I can't wait to have the dust level to a minimum. I will be so glad when we are done back there. We are good and no news about the next repair is good news.....