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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, 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...

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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.
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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

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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....
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Thursday, October 4, 2007




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Ry in Florida

Here are a few pictures of Ry and her Grandma and Papa Homer and cousin Gracie....I don't have all the pictures from the trip, so I can't post auntie and uncle, but I will get some... She had soooo much fun and already misses spending time with Grace. She has been asking when she can go back to see her... Thanks guys....

Wednesday, October 3, 2007

On my mind

Cardiology called this morning and Alex has his appt. for Oct 15th. I hope he is a good boy and his heart looks better. Ry comes home today.. I can't wait to see her. It has been nice to have this alone time with Alex, but Ry is so much fun and I missed her. Yesterday our heart friend Ian received his new heart. I don't know how things are going yet, but I have been praying for their family...Any way I guess this is just a little post.