Pages

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...
Posted by Picasa

#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
Posted by Picasa

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....
Posted by Picasa

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.....
Posted by Picasa

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...
Posted by Picasa

Monday, December 3, 2007

quick pics


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

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)
Posted by Picasa

Friday, November 30, 2007

Gearing up

Jeff and I are gearing up for the holidays and also for Alex's appointment. He goes to a limited echo and cardiology visit on Monday. We hope for more conclusive answers and hope hope hope we know what is going on. I think it would be a little crazy for us to go and STILL not know when things are happening. I did go up to PCMC and fill Alex's meds this week. We bumped into one of the Dr.s and he said they have talked a bunch about Alex. I also got a phone call from his cardiologist who apologized that we have been riding the roller coaster so long and hopes he can see what to do next. He didn't feel as though the angioplasty did much and he also feels like waiting and waiting isn't one of our best options either. We certainly can tell a difference in our little man. Before, we could take off his O2 to change his cheek Tendergrips or to get him the tub without worrying about him turning blue or struggling.... Now he turns blue so fast and he starts tugging or tracting. He is sleepy and cranky a lot more in the day but sleeps about the same. He just gets tired of playing and will chill out on my lap. I have tried some new measures in clearing up his bum and it looks better (thanks Glenda). The hardest time is night time and by the time I wake up and change him there are new bleeding sores. I am working on it. All in all we are doing pretty good and just hanging out.

Saturday, November 24, 2007

week in review

Pre-parade ....
Middle
The Box

The End...Get me off!!!!

This week has been so eventful and busy, I haven't had much time to post. So here are a few things that happened. Sunday, Ry and I went to Malad to welcome home my cousin Ches who just got home from a mission. Alex got his Synigis shot Wed. I am not sure what is going on with his surgery yet and I thought he at least needed the protection from RSV. That night we went to Orem to be with my family while Jeff did a little work. I ordered the Vinyl lettering for the play room. Thursday was turkey day... I have so much to be thankful for this year. Black Friday, Jeff and I got up at 3:45 and waited two hours in 30 degree temps, then we worked and cleaned and set up Christmas, then I ended up taking Alex to PCMC for a stool sample, we hope hope hope, it's not C-Diff yet again, his little bottom still isn't better and I tried it all. (thanks for the suggestions everyone) I must have spent thirty dollars on products for his bum... Today we have cleaned and Jeff has been working like crazy yet again and had accomplished sooooo much down there, I am so excited. We think Ry and Alex will love it.... I will call tomorrow and find out if the cultures grew and if we have something yucky to deal with. I will post more when I know.... I was hoping we would be able to have a nice quiet Holiday season.... Who was I kidding????

Jeff is the best person to take to the parade, he always gets the t-shirts and the treats and all the big stuff.... this time he scored a whole box of chips from the Lays people..... he's so awesome....

Posted by Picasa

Monday, November 19, 2007

Do you ever wonder "what the heck did I ever do without my sweet-heart" well I can tell you for me it was NOT MUCH..... Just wanted everyone to know that my "boyfriend" rocks...... I also wanted to add that I messed up the gradient pressure percentages.... It went from 30% to 8%, a much bigger change.... We got Alex all scheduled for his Synigis, I just have to get the okay from Cardiology to do it..... I would hate to have him get sick while we keep getting put off on the surgery.

Ry's dance class gets to ride a float in the parade on Friday.... If it's televised, watch for KC Dance Company and little girls in white hoodies... That's Ry's group... I will of course be posting pictures.... She can hardly wait...

Saturday, November 17, 2007

Well we had a busy yet fulfilling Saturday... I felt like we ran ran ran. We got up and Jeff put the Christmas lights on the house. We drove to Orem and hung out while Jeff worked at a neighbor of my folks.... we went to his parents house to help out but found out we need to do it Monday, we went to Ikea to finish getting a few things for the playroom and now we are finally home. Whew! Alex is running a low grade fever and had a really sore bum, I think he is cutting teeth. I did call into the cardiologist just to get an opinion, but they seem to think the same. So I guess that is all for today.

Some people have asked multiple times if there was anything that we needed or if they could bring us a meal. We thank everyone for offering and couldn't think of anything that we NEED! We have however started food cards, these are like gift card to the hospital cafeteria. If you still would like to help us out in the meal department you can add some $ to our card and we can eat on you at the hospital. To do this you call, (801)662-1000: ask for Cathy in food services, ask to add $ to the gift cards for Jeff and Brynn Homer ( card # 01641 and 01642) and the amount.. Don't feel obligated, I just thought I would let those of you know who asked...

For those of you who have linked to us from another family whose child is in the PICU or still at the hospital, you can do this for your family member and get it started for them... It helps out sooooooooo much....


All our love the HOmers.

Thursday, November 15, 2007

We are hanging out.

Sorry that I haven't posted yet. Alex did great in the Cath Lab. The Dr.(Dr. Holly) was so nice to give him a little happy gas before actually trying to stick him again. The ballooning itself (done by Dr. Gray)(also very nice)tried multiple times to stretch open that narrow area. So for those who understand. I guess it changed his gradiant pressure from 15%to 8% still not perfect but getting better. We are in the same day recovery over night, which is good because he keeps acting a little funny with his Sats and dropping them as low as the 50's. He has on two probes to monitor it all and they also did a chest x-ray but all looked great... so he must be throwing us off somehow. No, we still don't have a time frame for the Glenn. It's okay we'll just keep hanging out. On one had, I wish I could be here for our other PICU buddies, on the other, I am so happy to be able to be home doing our somewhat normal things....Brynn

Pictures

We got the proofs from our family pictures... I think they look soooooooo Awesome... Thanks girls... You can check them out and Amanda and Lyndee's work by going to http://bishopimages.instaproofs.com Thanks again girls.....Brynn

Down in the cath lab

Here's a little update:
I just dropped Alex off in the Cath-Lab, received my pager, called Jeff and I am hanging out. I think everything will go well. Last night Alex pulled off his little hat and pulled out the IV. I should have held him all night so he wouldn't do that. The things you wish you'd done,right? Jeff is working for a little longer while I got Alex all checked in and started and then he'll be here. I guess this is going to be around a three hour procedure and then we will see if he even needs to be admitted, there is talk on the street that we might just go home today.
Brynn

Wednesday, November 14, 2007

No Really, are you sitting?

We got up bright and early this morning... We got everything ready, we arrived at the hospital by 7am were we checked in and proceeded with all the right things... We dressed Alex, took pictures, went to the OR waiting area with him. The nurse brought over some meds and was explaining them to me when the surgeon came over and told her to hold off and wanted to talk to us. Apparently Alex's case was brought up again in his conference. The Dr's and surgeon's agreed that Alex's heart is just not going to handle all of those fixes very well. There are too many things that could and potentially would go wrong. They were able to aggressively come up with a new plan. (so glad they have those) They decided that they wanted to try and do another angioplasty. This time using a larger balloon and hopefully making the coarctation better without the need for cuts and "surgery". This in turn would help take work load off the right side and make function better. So we could do the Glenn with a better result. So we hung out for about an hour... (The computers were down) And found out that the cath lab was all booked up for today.... I begged to let them keep his IV in because it took another 4 sticks to get it today. (The IV team wants to turn and run when they see us. But they are soooo patient and willing to try what ever I suggest.) They did leave it for me and I will be in charge of flushing it and babying it until tomorrow. WHEN, we go back for the Cath and the Angioplasty. Yes, we feel a little crazy by the whole "roller coaster" of events, but we want everyone to know that this is an answer to prayers too. We have been praying that the Dr's and Surgeons would have all the knowledge and understanding to help Alex and us make the right decisions in his behalf... So although we wait yet again..... We wait WITH Alex and know that this smaller procedure will aid in his BIG procedure... They haven't given us any time frames because it would be so hard to judge at this point. We will be in the hospital over night, I think we get to go home Friday, after that we will just take things day by day...

We wanted to also let Noah's family know that we are so sad for their loss.

Also, Good luck Kaidence in figuring all this crazy stuff out.....

All our love the Homers

Tuesday, November 13, 2007

Are you sitting down for this.......

Alex had Pro-Op today and what a crazy day we had. We had a sedated echo, 4 try's and one successful IV, weight checks (16 lbs 4 OZs), blood drawn, waiting and then......We found out how serious Alex's surgery will be tomorrow. We are not talking about your run-of-the-mill Glenn. We are talking new info about how things are looking.... Alex will need the following repairs tomorrow... Tricuspid valve repair, Aortic arch repair, two holes repaired, the sano conduit removed, and on top of all that the Bidirectional Glenn....We plan on having him in surgery for six hours. We don't even have a guess time how long it will take to recover. The good thing is that he is bigger at this point and seems to be checking out in other areas. They are still concerned that his heart is not functioning all that stellar, we hope having these surgeries takes some of the work load off the right side.... So we are worried sick and just hanging in there right now.

Sunday, November 11, 2007

In the works...

Thanks to Amanda Bishop and Lyndee George we got our family pictures done yesterday.... I was so glad to have them done. What a relief....The lady's were so awesome and I know the pics will turn out awesome. So be looking for them soon. I now have compiled my list of things to get done before Tuesday... I am a list making fool. It makes me remember everything I need to do, and reminds me of all the things I'd like to do. The kids seem like they know something is going to happen; we've talked it all over with Ryleigh and she understands some. She mostly gets the fact that she gets to go stay at grandparents houses. In other news, I am taking all the vitamins I can, washing my hands even when they aren't dirty and staying away from sickies, to stay well. I always get some kind of a cold when the season's change and I am determined to have it pass me by. One of the items on my list for Monday is to get the flu shot that I haven't made time for. I don't mind shots all that much and I give blood every eight weeks, so I should just do it right? Jeff went to church today and I think everyone will know after sacrament that I got released from my calling in Young Women's and I am going to teach RS every second Sunday... I am so sad to leave my girls, they will be missed and I have been so grateful for all the things they have done for our little family. Those girls have kept us in their prayers, fasted for us, brought us meals, they even have brought little gifts for our kids.... They are so amazing. I understand that someone else needs the blessing they offer. I am also excited by my new calling. I am not a very good teacher, hopefully I will just be an instrument for Heavenly Father... I heard this is a really good calling because as the teacher you learn so much from the studying you do to prepare... Well we will post more when we can...Brynn

Friday, November 9, 2007

We got our call!!!!

So Alex's surgery is scheduled for Wednesday. He goes to pre-op on Tuesday. My little sister Preslee is going up to PCMC for some testing for her seizures on Tuesday and my family will take Ryleigh back to Orem to stay with them while Alex is in the hospital. We hope he will recover quickly. We have only planned her staying there for this far along since we can never expect when he will come home. I am trying my guts out to get a family picture done before, so I can have projects like Christmas cards to work on while he recovers. Thanks for all the continued prayers.....

Kaidences news spot

ksl.com - New Device Helping Babies with Heart Problems

It's really easy to see Kaidence's new spot, just click on the sentence above.... Yeah!!! for her....

Wednesday, November 7, 2007

On a personal note....

I added Jeff and my email addresses to our toolbar if you would like to send a personal message to either of us. I understand that sometimes you would rather just send a message to Jeff...... Yesterday we all attended the funeral of Ian Pearson. It was a special and sweet day. We could feel his spirit so strong. Justin and Jenn where amazing. I wanna be like them when I grow up. Today is a good day, and we hope the good vibes are going our little friend Kaidence's direction. We are praying her surgery to receive the Berlin Heart goes well.... Smooches and all our loves...The Homers

Monday, November 5, 2007

Yeah!!!!

I am yet again humbled by the power of fasting and prayer.... Alex's appointment went so well... Dr. Su was so glad to see that his heart had had great improvement. Now his case will be presented on Wed. to all the teams and they will hopefully be calling for his surgery date to be next week or the following. I am scared and glad all at the same time.... Thank you everyone...

Sunday, November 4, 2007

Family of Four!!!

We have been blessed with such great family and friends. I am so grateful for everything we have been given. I may not have sent you a personal thank you note, please forgive this slightly-not-so-good-at-that-crazy-busy-mommy!!!!! We have totally loved everything. We got these darling hats from my aunt Mary who rocks at crochet and made us each one. My other aunt Karen sent a package for both our kids and wrapped each gift so that Ry could open them. It was like a mini Christmas. We have gotten so many wonderful, fun, and generous things... Ry comes home from both grandparents house spoiled... Neighbors and friends took Ry and even took her boating while we had and emergency day.... "GO FASTER". We have received so many meals and even the words of concern and prayer is so amazing. I just wanted to say THANK YOU!!!!!!! From the four HOMERS......
Posted by Picasa

Thursday, November 1, 2007

Our Sweet little friend

After the hardest fight ever, Ian went back to live with Heavenly Father today. His daddy and mommy and big sister Emily are doing okay. We are so sad for their loss and we hope that they know of our love for them....Ian was only ten days younger than Alex, so we've been friends since right after the boys were born.

Prayers for Baby Ian

I wanted to get as many prayers for him as possible and I know many are checking on him.... He really needs them today....... Also a special prayer for Justin, Jenn and Emily to be strong... We have really become close to our friends and wish them the very best.

Also, there is account set up at Wells Fargo that you can make donations to. It is very easy and you can just say it is for the Ian Pearson fund. I know that many are in our same situation and making even the smallest donation is something they are most grateful for.... All our Love... Brynn

Monday, October 29, 2007

"The Frog Prince"

Our theme for this Halloween is "The Frog Prince" Ryleigh is the princess who lost her little golden ball in the pond which was found by the frog who loved her and would only turn into a prince if she gave him a kiss. Alex is our little Frog Prince...

Posted by Picasa

Friday, October 26, 2007

Crazy Kids

He looked so awesome in his mullet we are thinking about letting him grow one.
Ry is helping daddy with mom's car.
Posted by Picasa

Thursday, October 25, 2007

Pediatrician appointment

Both my kids had their pediatrician appointments yesterday. I was happy to have one visit and get them both in and out. Both kids did very well... Ryleigh is tall and very healthy, the dr. is always amazed that she is so articulate and "doing" so many things. She is totally over the boil on the side of her face although it did leave a very unimpressive purple mark. She is cute enough that no body will notice. She got her three year vaccination. I think it was just one shot and her flu shot. She kept asking "will this hurt?" I couldn't lie so I told her it would only hurt for a minute but I would hold her and it was okay to cry. She only cried for thirty seconds or so. Alex is doing good too. He weighed in at 14 lbs 14ozs. He is not gaining as fast as he was before but his height and weight percentiles are the same so Dr. Mashkuri didn't seem too worried. In fact she said he was fine as long as he didn't lose weight, this being an indication that he was starting to struggle with his heart. Through all of his heart failure they have been amazed that he still eats and gains. The developmental specialist also saw him and said she was impressed that he was catching up so nicely. They don't count any time that you are in the hospital as progression so Alex started out two months behind. It is crazy as I look back at Ry she was crawling around right about now and eating everything in sight. I just keep trying to do all the things the specialist said. (her name is Susanne Barnes, by the way) He doesn't even sit up without support yet. Well, we'll get there. Alex also got his flu shot, but because of his situation we are holding off on his vaccinations. I don't understand totally why, except they will become eradicated from his system when he goes on the heart and lung bypass machine and we would have to do all his last shots over again. He doesn't do very good after shots. eg. low fever, cranky, etc and so that might be another thing. Any way. We are doing good. Jeff's hair is almost all grown in and we will be doing family pictures soon.

Sunday, October 21, 2007

A little something to Brighten your day.

This is Ryleigh and our little friend Haley. They are dancing fools....

Friday, October 19, 2007

Kids say the darndest things

Not just little kids, but I have just recognized that I am my mom. Who is probably laughing at this very moment. This morning as I was doing Ry's hair and she was squealing to be done with it, I said, "You need to hold still!" She started to cry a little. I then proceeded to say "Now stop crying or I'll give you something to cry about." it popped out of my mouth without a moments hesitation..... Ry looked indifferent. I could not believe that I had actually said those words... My mom never ever "gave me something to cry about" nor was I planning on doing this to Ryleigh. It was just what you say when someone was crying while getting their hair done. Anyway... I couldn't believe it. All those little things I say now will someday be the things that Ryleigh and Alex say to their kids..... I hope Hope HOPE!!!! they remember I love you the mostest, please, thank you, I wanna be the helper and so on. I am thankful my Mom AND Dad taught me to pray, clean, be happy and work hard. (besides the cry about thing :) )).. Thanks guys..... WE LOVE YOU!!!!

Thursday, October 18, 2007

Baby Jack

One of our heart friends.. Baby Jack, passed sweetly into our Heavenly Fathers arms yesterday... It is hard to watch another heart baby struggle and we again are soooooo grateful for the time we have had with our little Alex.....

to send baby Jack's family condolences... visit jackbnelson.blogspot.com

Tuesday, October 16, 2007

Witches

Just a short note-

Ry, Alex and I went to Gardner Village for a little witch hunting. The witches are life size and darling and such a fun little activity for FREE! It was kind of yucky weather but we had fun looking at them all. Ry's fave was the witch that is using the outhouse. I liked the one flying her bicycle. It was nice to get out. If your have a minute, it is something to consider doing. I also get the itch to do some decorating, room planning or even more cleaning...

Monday, October 15, 2007

Today's appt.

While our news about today is better news than last week, we are not out of the blue.... I was a little early to our appointment today. We got to go right in. It was soooo nice. Alex did great through his echo, he didn't even cry. Then we spoke with Dr. Su. the function of his right ventricle is better. The drugs seem to be working or at least that is one of the theories. The other could be that he needed some more time to get better from the angioplasty. Needless to say, they like the numbers to be above 1000. Last visit Alex was at 700, this time he was 1500. While we wish that the numbers meant more they aren't really an indication that he is doing sooooo awesome, just a little better, we will take it.... So now we are moving in a positive direction. We also discussed his tricuspid valve. He has leakage that seems somewhat extreme and need repair. So our plan of action is to up Alex's dose of Enalipril to 1.5 ml 2xs daily and keep his other meds the same... We go back to an echo just like today's on November 5th. At this appointment we will see if there is some new improvement. If there is new and better improvement then we will try waiting a little longer for Alex's Glenn. If the hearts function stays the same we will then say that the meds have done all that they will do and we will schedule his Glenn. We hope the function improves more because now that we are adding the new repair of the tricuspid valve we are not just having that standard Glenn we are also having a very intense repair. They say that the Glenn is the easiest of the three planned surgeries, well now it is right with the others being very complicated. So tonight we are so thankful for this news. We are thankful for the fasting and prayers because we know it has helped so much, and is the reason he is improving. Sometimes I get a little hot and think we are doing so great and I know Heavenly Father wants me to stay humble and not get ahead. It is experiences such as these that I have a hard time with in the beginning but when things start going in the right direction again I am thankful for them.... It really puts things into perspective....Thanks again for all the help and prayers...

Sunday, October 14, 2007

small miracles

This week has been full of small miracles.... I thought that I would share a few...
#1-Two nights this week Alex slept seven hours straight... which meant two nights in row that I had consecutive sleep too. This is a little scary because I wake a little frantic that he didn't wake me and I didn't check on him, but the sleep was good. Now all I need is to remember all the exact steps in getting him to do it again....
#2-Ry and I put together a job chart that I love and so does she. She is currently putting away all her toys, brushing her teeth, making her bed, putting away the silverware from the dishwasher, and getting dressed with out complaints on the outfit. This is huge business for a three year old.
#3- Jeff was able to finish a bunch of projects that make our home so nice and make him feel better too. Like cleaning the garage. Most of you know how OCD he is. Having a clean garage makes Jeff very happy.
#4-I stumbled upon a great deal at Old Navy and bought a pair of jeans for $6.00 (important to me to clothe my huge behind while I loose the baby weight)
#5- A sweet friend mailed us a note of encouragement and a sum of $. This is so amazing. Thank you so so much, we understand that this might be a burden on your budget, it may have been your lunches for a while, it could have been your date, it may have been that little extra you need to "get by", but to think of us and take the time to mail it is priceless. (We don't know who this is from... we have thought it to be so many of you, because we have such wonderful and loving friends)
#6 Today is fast Sunday. The day before our next appointment with cardiology. That so many of our friends have fasted in behalf of our family and if we ask, in behalf of our friends. We feel comforted knowing that we will be accompanied by angles tomorrow.
#7 I found the seat that attaches to the table so that Alex can be part of dinner...
#8 I finally get to wear sweaters again.
#9 Ryleigh is so loving and helpful and energetic, that she is healthy and strong.
#10 That I am very eager to be genuinely nice, helpful, and loving to everyone I meet because it makes me closer to my Savior.

Wednesday, October 10, 2007

Alex talking

Punk'in Patch

Check out Alex talking!!!
Today we went to the "punk'in patch" Ry picked out one for her and Alex... She had a blast

Posted by Picasa

Monday, October 8, 2007

Couldn't wait

I couldn't wait to hear how Ian and the rest were doing.... So I called and left a message... It just happened to be the exact time that they were taking Ian off the ecmo ..... A HUGE step... I just wanted all to know that he is doing as well as can be expected for the tiny steps he is taking, it has been a long and hard weekend for the Pearson's and I know Jenn will write when she feels she can take a few minutes away from her little man. Just know that the prayers and fasting are going in a great direction and being answered in our families behalf. We feel them each day. This Sunday being fast Sunday please remember the little heart babies... Thanks so much everyone

Sunday, October 7, 2007

Spotlight on Ryleigh

The story that goes with this picture is soooo funny and I was waiting for Uncle Ryan to email with the details, but I will have to tell it to you from how I heard it..... The last full day in Florida was supposed to be uneventful.... Auntie Lisha and Grandma were going out shopping together, kind of a girls outing. The men on the other hand, were watching Ry (3) and Gracie (4). They had some oral histoy recording to finish and they needed it kind of quiet. So they set the girls up in front of a movie in the other room. They started recording and had many interruptions. One of the interruptions was Ry coming in to tell them that the girls had decided to cut each other's hair. When upon further inspection the men found that the girls had taken a bib wrapped it around each other, got a glass of water and a comb, and were wetting and combing each other. Uncle Ryan thought this to be a harmless thing. But, instead of the glass of water he got them a water bottle with about two inches of water in it, and went back the recording. The girls soon ran out of the water and could not get the sprayer screwed off but tried filling it anyway leaving about 1/2 gallon of water on the floor. They discovered that Fabreeze has the same effect as water and finished combing and spraying with that. They finished up by using the baby powder (which when mixed with the water made an amazing paste) This all going on with the men happy to not have many interruptions. Well pretty soon Gracie runs in and shouts..."Ryleigh's Bleeding" Somehow the two little girls had scaled the bathroom wall to reach the leg shaver grandma had left. Ry tried to shave her pit..... OR her b--by. No stitches needed, just a couple of band aids and two very surprised women who had to clean up the mess....
This is Daddy, Ry and Alex today in their fort.....Ry loved it. Daddy is the best fort-builder-guy.
She gets into everything... This just happened to be chocolate chips and sugar....
Posted by Picasa

Thursday, October 4, 2007