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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, December 29, 2007

#3

Bryson boy, loves the camera!!! Oh.... he is too yummy!!!!
We hope Alex looks this good in a couple more months...
Can you believe how cute these little guys are... We met the Quinney family through a support group before Alex was born. They were at Primaries for Bryson's Glenn while we were there for Alex's first surgery (Norwood)... They have been the most amazing and supportive friends... I don't know what I would do without them. They have cried, laughed, and prayed right along with us. Alex has given us the greatest gifts with his broken heart, a new extended family...
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#2

Christmas day was spent with the Homers.... We had yummy brunch, opened presents and played.

We have been so lucky to see so much family. Jeff's brother and family from Florida came for the holidays.... We had a slumber party with Grace our niece. They decided to draw on their faces while I was in the (2 minute) shower... Grace hardly had any, Ry on the other hand, wanted it to look like make up. So after a shower I put real make up on them and did their hair....

My kids don't need toys next year, just send them all the boxes from your stuff and they will be happy.

We have truly been blessed this year... We have been the recipients to so many generosities... We don't know who to thank because most are anonymous and so we will thank everyone... Every time I opened the door I burst into tears. Thank you so so much.. Not only for all of the things that we have been given, but for the prayers and the fasting, and for strengthening our testimony of caring for others and bearing our burdens... We will have some huge shoes to fill as we try to say thank you by giving in return....

With surgery just a few days away (hopefully) we are getting ready and nervous, we know that we are not alone during this time... Thanks again for the prayers.... Brynn
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The First of many!!!!

This is the first of many photo's and stories..... I am going to try and post as many highlights as possible...

We went to Clawson's Christmas Eve for our special dinner..mmmmmmm....The kids loved the Hannah Montana wig Ave got from us, I think my Dad looks the best in it.... Ry can't wait to wear it again.

The kids look darling in their jammie's from the Elves....

I would like to take credit for the hat and sweater combo Alex is wearing although Jen E. gave it to him and it is soooooo cute.... I just

added my mom in the middle cause she will love seeing herself....
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Sunday, December 23, 2007

Kaidence's heart

Our little friend Kaidence got a heart for Christmas.... We Love you!!!! we are sending good vibes and prayers your way....

Friday, December 21, 2007

Christmas Cards..



If we didn't get you a card/letter/thank you/gift, this year; it is not for lack of effort... we wish all a very Merry Christmas and A Happy New Year... We are thankful for all that we have we have been truly blessed beyond measure.... LOVE with all our "HEARTS" the Homers.
P.S. We will try and be better next year...
P.S.S. These darling pictures and cards, were done by Bishop Images... Thanks again Amanda

Wednesday, December 19, 2007

Better now

Dr. Su called a while ago and he said we shouldn't worry that we will be in the first week and he would take care of things and then Bonnie called me personally and said that he is going in on the 2nd and made sure I understood sometimes some schedule changes need to be made... I am relieved, and grateful for her call, and we now plan on having an amazing Christmas (with no unscheduled visits) We wish this for everyone.

I am way too high strung right now...

(Breath Brynn...)


Thanks everyone...

We've hit the wall!!!!

I am done, I don't know how to work this anymore... I thought we would be scheduled for surgery the first or second week of January but we aren't going until the *17th...don't wipe off your glasses that is the date I was told.. I tried oh so hard not to hurt any one's feelings as I rambled.. The but but but but.....It wasn't the schedulers fault, she didn't need the melt down... So I hung up the phone and burst into tears and called Jeff.... We both fumed, me more than him... then we decided to be proactive. While he called the cardiologist I talked with the Ped (thanks Dr. Mashkuri) and the social worker (thanks Laura) and Jennylin (thanks).. Bawling the whole way through some of the conversations.... I guess our thing is... We thought they said he couldn't wait any longer, he needs it soon... He needs it while is doing good.. Now there are so many things that can happen....I want to be able to love every minute with him, but those minutes are terrifying if he NEEDS this and I can't help. He will be nine months if we wait until then... This surgery was supposed to be done between 4 and 6 months.... Anyway.. I am expecting many phone calls.. Hopefully we can sort this out... I just hate having Alex be labeled as ANOTHER patient... I am never like this. I usually can see the light at the end... But I don't have anymore patients...grrrrrrrr.....Am I being unfair???????

Sunday, December 16, 2007

Loved this too!!!

I stole this from Curtis's blog.. It is a poem a heart mommy wrote... I loved it...

One day my world came crashing down,I'll never be the same.They told me that my child was sick.I thought, "am I to blame"?I don't think I can handle this.I am really not that strong.It seemed my heart was breaking.I have loved him for so long.I will not give up on this child.I will listen to your advice.I will give my child any chance.No matter what the price.I will learn all that I need to help my child thrive.I'll even use that feeding tube.My child must survive!Will he need a lot of therapy?Will he gain the needed weight?Please God, help me do this.I will accept our fate.When the monitors beep at night, it serves as my reminder.How many parents would love that sound.Tomorrow I will be kinder.As another Angel earns his wings,I run to my child's bed.I watch him sleep for quite a while.I bend down and kiss his head.I cry for the parents whose hearts have been broken.I look to You wondering why?Oh Lord, I just can't know your ways....no matter how I try.And yet, I trust you hold his life, and guide us through each day.My mind says savor each moment he's here,but my heart begs, "PLEASE let him stay"!From pacing the surgical waiting room, to sitting by his bed.From wishing for a good nights sleep, to learning every med.From wondering, "will he be alright?", to watching him reach out his hands.With every smile my heart just melts, despite life's harsh demands.For all who see that faded line.I look to them and smile.You see my child is loved so much.I would face ANY trial.That scar I trace with my finger (It's the door to his beautiful heart).God must have known how much I'd love him (Just as He loved him from the start).A heart mom is always a heart mom.Now wise beyond her years.For those who have angels in heaven,Our hearts share in all of your tears.Every day I will try and remember,I was chosen for him (and no other).I will always embrace that beautiful day.......When I became a "Heart Mother".

Wednesday, December 12, 2007

Pink Ranch

What kid doesn't love Ranch.. Ryleigh just happens to love it the most. She also likes "Pink Ranch" and "Brown Ranch"(Balsamic vinaigrette). She had about three rolls and some meat dipped in the good stuff. I don't mind that much if she is eating all that good-for-her-food.

Monday, December 10, 2007

Alex's Christmas Card

My dad did such an awesome job of putting this together... I wanted to share it with everyone..
Thanks Dad!!!!

Sunday, December 9, 2007

Doing fun little things!!!


Ry is loving having play dates with friends... this is her little friend Ellie... She loves to play tea party and is soooooo funny about it... the girls are having a cocoa party and putting their pinkies up... Ellie is so cute and did her pointer instead....







































One day I decided to bath Alex in the kitchen sink. He thinks water is about the coolest thing in the whole world and would spend all day playing in it if I let him. He is such a little fish... Maybe we will try mommy and me swimming lessons this summer like we did with Ry. Anyway, Ry decided she would join in... She loves the water too.....
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Thursday, December 6, 2007

What we found out...

Well we got a call from Dr. Su today. He was so apologetic for having us ride the roller coaster. We understand to some degree and we know that they have Alex's best interest in mind. As well as the rest of our little family. He talked with the surgeon and they came to the conclusion that it would be best to wait until the first week of January. It will be good to have Alex home with us so that we can enjoy the holidays as a family. He also said that we needed to be careful not to get Alex sick, but that we could enjoy our families homes and a couple other outings if needed. So we will be careful but still try to make memories with him. I haven't totally made up my mind about it, but I was thinking of taking the kids to sit on Santa tomorrow. I think Ry is really at an age when she is begining to understand and I would love to have her remember fun and happy things. She is loving the season and all the bustle that goes with it. I collect Nativities and She has taken all the baby Jesus's to watch over. I have to round them all up and place them back with their appropriate families each time. Today we made a paper chain that counts down to the day. At the top we put a big yellow star. We wrote Christmas Day, Jesus's birthday, Gracie comes and Santa comes on it. She is so excited. We really enjoyed the achievement day carollers the other day. Thank you. I don't think I ever posted this, but all of Alex's stool samples came back negative.. Good thing too, I hate C-diff. He still has his little flare ups but I think that it is just because he is just about to break two little bottom teeth through.....

Ginger bread houses


We made real ginger bread houses this year...
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Monday, December 3, 2007

quick pics


Just learning a few new photo things and I love the blurry edges....He is soooooo yummy.
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Eyes





My darling cousin Jennifer, gave me the idea. This is what our families eyes all look like I think it is interesting that our little man is a perfect blend of mom and dad with one brown eye and one green. This picture doesn't show the contrast all that well... But this was one fun post to read on her blog and then to steal and do on ours.... We wanna see your families eyes too!!!!! WE'LL BE WATCHING FOR IT...hahah (good punn)
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