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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.

Sunday, February 24, 2008

Remembering Ian

We have been thinking about our little friend Ian... His mom and dad and big sissy, are doing a special project to "give back".... I am posting a link to their blog so that you can find out how they will be honoring their little boy...I know that many of our family and friends have felt close to them because of their friendship with us and I wanted to share with you what they have been doing...Thanks...Brynn http://emilyandian.blogspot.com

Monday, February 18, 2008

Alex's Song of Love



We just got Alex's Song of Love... We love it... It is a special song written for Alex by Donna Britton.. This has been such a fun thing.....Ry has been singing it around the house all evening... Songs of love is a non-profit org that makes fully-produced songs for children (up to age 21) who are facing life-threatening illness....If any of our friends or family know someone who would like this simply click http://songsoflove.org/ and fill out the form... (I know that this is just a tidbit of the song..but someone had a stinky diaper.....)

Saturday, February 16, 2008

What did we do!!!

 

The top three pictures are of Ry and Alex's playroom..They got this for Christmas.. It has taken forever to post about..Sorry!!! The other pictures are of Ry..We had a wild 'hair' and blew her hair straight...Daddy and I both agree she isn't our little Ry with stright hair...But she looks pretty any way...She is such a DIVA.
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Friday, February 15, 2008

How was your day?

We had a nice Valentines Day..My mom met the kids and me for lunch, and we enjoyed spending time with her... A couple days ago Jeff tried to get reservations at the Melting Pot... But they were way booked...(thanks to the Mocks, our home teachers and friends) we enjoyed a very nice Sam Pan dinner while The Homers stayed with the kids.. This morning Alex had his Synigis... Dillan our home-health nurse, came out to the house to help minimize the amount of time spent in the clinic.. The less amount of time we are there the less likely we will pick up a bug from one of the sickies...He said to tell the Dumas's Hi..he was their nurse too. He can't believe you are having twins....We are just hanging out today trying to clean up a bit... Ry has been night potty training and she had an accident for the first time in two weeks.. IN MY BED!!!! So I will be changing sheets and working on the stain.. Of course she couldn't do it in her bed where we put that special plastic sheet and mattress saver... So all you have to do is wash this little pad instead of the whole stinking bed... O-well... I am glad she is doing so well..She is an all or nothing kid..We had to stick her in with no diaper and know we would have a few messes. She would just keep having accidents with pull-ups and diapers...By the way, pull-ups are soooo expensive... Why don't they put the princess's on the cheap Sam's club brand diapers... I'll tell you why, because they would like you to spend the same amount for a third of the product. (or have to finance your house for a months supply)..just so your little one can have a "diaper" that looks like panties and feels just like a diaper...Anyway...I am excited to see how Taylor Andrews did on the fund raiser... I will post totals.. Until then TTFN!!!

Wednesday, February 13, 2008

In review

It seems like I have so much to write about lately that I don't know where to start.. We visited Orem on Sunday.. The food was fantastic and the company wasn't so bad either... My little sis was just two months away from being seizure free for six months and had an "episode" Dang it! No driving for longer now... Monday the kids and I ran around and did errands and hair.... Tuesday we spent a great deal of time at Taylor Andrews as the students will be doing a fund raiser this week for a support group we belong to.. Intermountain Healing Hearts... This week is CHD awareness week..Ryleigh and I made sculpty heart pins, we've been passing them out to friends and family..We took a few to the school, the pediatrician's office today, we left some on the table at PCMC, and Diane passed some out to the guys at Jeff's shop. CHD week is a great time to help get funds for research and to help our group get care bags together for families at the hospital.. Today Alex had a ped appointment and a developmental evaluation again... Dr. Mashkuri said he looks great. He is up to 17 lbs (15%) is 27"(25%) and his head is in the 25%.. He is gaining weight and everything is still on track.. She would like to wait until he is over the Lovenox and about a year old before we have his circumcision.. This will give him a nice couple of months to really get well. She wants to see him really pick up on his solids intake... I feel like we are starting over with his solids because he gags so bad, but we are going slow and trying new things. She is going to leave him on the Previcid until he is a year old too.. The developmental specialist says he is starting to catch onto things. There is still a bunch of work to do with his little rubber legs..He won't put any weight on them at all... But we will do exercises with him everyday to get him stronger and stronger... He isn't getting so tired anymore, so we can push him a little more.. I still feel like his incision sight must hurt him to put pressure on, because tummy time is out of the question. He bawled today when we put him on his belly... The MD thinks he should just keep trying everyday until he becomes use to being there..So we are going to try some shorter intervals... We continue to do well as a family and can't wait for the warmer weather when we can play outside...
p.s. No word yet on Princess On Ice.. But we for sure will let you know...

Sunday, February 10, 2008

Seven things about me!

This one is about me, I am sure you will get bored so I won't feel bad if you skip over this one....Seven simple things about Brynn.

*I love to read.. To get all snugly, quiet, and involved in the story or plot...
*I love to organize things...I love to see things tidy and know where things are..
*I should have stock in Rubber Maid because I love totes...It goes with the organizing thing...
*I love KeyLime Pie...MMMMMMM and I really like Diane's chocolate-chocolate bunt cake.
*This won't surprise most, I love food... All kinds of food.. The only thing I can think of that I don't like is Clam chowder.. (I vomicked it as a kid...)
*I love to have a veggie garden.. I can't wait for the spring so I can plant my garden...I already started planning how I want it to look and the things I would like to try planting this year. I can't wait for the fresh tomatoes...My grandma and grandpa Groesbeck have the BEST garden.. We have been spoiled as kids to have all the yummy things that came from their garden..Then my mom and dad have one every year and I just loved it..
*I Hate laundry!!! You would think that because I like my whole house tidy..Almost to a clinical state that laundry should be easy and yet the laundry always has been an issue for me... Jeff has been helping out a ton with it. Soooooo nice... I think it's cause he doesn't have anything to wear...Bad wife, do the laundry...

Friday, February 8, 2008

Jeff!!

The hubs Tag-
1- What is your husbands name? Jeffrey Glen Homer
2-How long have you been married?- 6 and 1/2 years
3-How long did you date? 2 months until we were engaged and a 6 month engagement.
4-How old is he? 28
5-Who eats more? What kind of question is this, have you seen me? I don't say no to too many foods... Although the poor guy is always hungry. He can't even chew gum because he forgets it is not food ans swallows it...Quantity, Jeff.. Quality, Brynn.
6-Who said I love you first? I think it was me. If you ask Jeff, he would say it was him...
7-Who is taller? I think we all know.. Mr. 6'4"
8-Who sings better? I love to hear Jeff sing...I am a shower Diva... I won't admit to anything...
9-Who is smarter? What kind of smart? I can read directions and LIKE to read... Jeff can figure anything out.. Is great with his hands... can remember things better.. is a champ at making things look good and... Yeah it's him.. I was trying to make myself feel better.
10- Who's temper is worse? Have you ever seen me on fertility drugs...
11- Who does the dishes? I do.. I am a little OCD.. A lot OCD... He does them to help out sometimes and it is such a treat.. But I usually have to keep to my routines..
12-Who sleeps on the right side of the bed? I do.. It is closer to the door or the babies.. When I was prego I slept on the left because it was closer to the potty..
13-Who pays the bills? we share this, it depends on the bill.. if it hospital insurance stuff, I do, if it deals with the home, he does.
14-Who mows the lawn? he does, this is where his OCD kicks in.. He must have the right length and the right angle..Men and their lawns..
15-Who cooks dinner? I do. he does on occasion...
16-Who drives when you are together? He does.. I hate to drive with him in the car because it makes me nervous.. plus, I HATE driving at night and in snow...
17-Who is the first to admit they are wrong? we both do pretty good.
18-Who is more stubborn? ummmm, He is..
19-Who's parents do you see the most? His, they live in the same town... We would love to have my folks closer (HINT)
20-Who proposed? Jeff
21-Who is more sensitive? I think cause I am a girl I am.. but my Jeff is the sweetest daddy.
22-Who has more friends? We mostly have "couple" friends... So I would say we have the same..
23-Who has more siblings? ME-4 Jeff-1
24-Who wears the pants? Um, Jeff...
25-Where did you meet your husband? We met through Melissa who is Jeff's cousin... Lucky for me I get to keep and Good friend in the family.
26- Where did you go on your first date? We went hiking at Moss Ledge, This is the location he also proposed at..
27-Where was your first kiss? The night we got engaged.. In my driveway...
28- Where did you get married? the Timpanogos Temple
29-Where did you honey moon? In Jackson Hole, Yellow Stone, and Park City...
30-If you could change anything about it what would you change??? I got so sick we had to come home early..

We need your help!!!!!!

Ryleigh really really REALLY wants to go see Princess's on Ice and we put her and Alex's picture's up for vote on the Kozy 106.5 web site... So here's how you can help us...Go to kosy.com and click on the Princess wishes VIP box..It will take you to a screen, at the bottom it will say VOTE NOW, click on this and then vote for #52 it will make you put in your email address.... Then your done....Yeah!!!!! thanks so much in advance... I hope we get the grand prize and she gets to go in the Limo....She needs these fun things and attention when Alex is the one who usually gets most of it... Also for those trying to reach us..We have a new Home phone..We have had Cell phones only for 4 years...So that new number is 801-878-4832... In our first day we had around 8 solicitors.. O well... Thanks again... You can also see Alex's picture I think he is number 49...

Wednesday, February 6, 2008

02-06-08

We went our cardiology follow up today.. It went well..They did a chest x-ray, it looked good and drew some blood to see if there were any infections.. It came back negetive for infection. They would still prefer us to be on the 27k cal formula, and they don't want ot start weening off oxygen yet, that's okay for a little while longer. I want him to be off it before he crawls though. No new things to report wich is nice for a change.. I may be able to write about new teeth in a couple days.. So we seem to be on the road to recovery and he seems to be getting back into his old routine.. He also started like solids a little more without totally gagging... It took us forever to get to the hospital this morning.. when it usually takes around twenty-five to thirty minutes, it took nearly two hours...YUCK!!! Good thing Jeff came with me and we drove the truck because I don't drive well in the thick white stuff... The Florida Homers called and said it was 80 at their house... LUCKY-(think of that as sounding like Napoleon)
Ry said the funniest thing today...She has been very clingy to me.. She needs help with everything. She won't go into a room without someone with her and she really hates going to the restroom alone... Well today she darts for the bathroom and shouts "I need a little help mom!" so I get up after her and she is already sitting on the potty when I get there growling up a storm... I look at her and in the middle of a grunt she says "Where the heck's my magazine" I guess she needed a little reading material while she finished up her business. I tried to control my laughter but I finally ended up on the floor rolling.. The only thing I could find was the 'Friend'... It all came out in the end..HEHEHEH...
And our newest and funnest thing (is funnest a word?) Alex says Dada..Yes our little man decided to make his first word Dada... I think Ry's was Hoooooot.. and NO! I tried to get him to say Mama, he won't....
p.s. I think blog spell check is off.. I can't check it.. I am by far the worse speller ever.. I believe you are not truly creative unless you can spell a word at least three different ways....SORRY

Sunday, February 3, 2008

Englands

 

Our friends (family) were sealed this past week. It was amazing to see...They have four beautiful children...We are so lucky to have them close..
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Friday, February 1, 2008

Going soon!!!

 

Just had to show you how happy she was to go on a date with daddy!!!!!
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A date with Daddy

Ry has been looking forward to today for a long time... She is going to see Hannah Montana in 3D with daddy... She got a special shirt and gets to have popcorn and treats... She can't wait.. I will post a picture pre-show...