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.

Friday, February 27, 2009

Play by Play

Gator was at the top of his game Friday at the Safe Kids Fair. His event? The Diaper Derby. He would be participating in the fifth heat of the day. The pressure was on, the little girl in the pigtails next to him was definite competition. On the go and bribed by mom with a balloon and a toy truck, he flew. There were no distractions for Gator. The little boy who was laying on his belly crying did pose as a small detour, but he soon made it back to Auntie Lisa for the WIN!!!!! He would go to the finals... During finals he was cheered on by the best cheerleaders ever. NAMELY- Ry, Arli, Ellie J., Gogie-man, Tyden, Reagan and Tyler. We knew it might be tough; but, He showed no fear. Reminding him that "Speed, he is speed!" The announcer said; GO! He was off. Gator did so wonderful, a flawless performance... He WON, FIRST PLACE!!!! Our little half-hearted manskie won a running race.....WoHOOOOO! He got some amazing prizes (about 250.00$ worth)

We had a great time.

Ryleigh got her face painted, played with Arli, checked out the fire truck, colored on the wall, cheered for Gator, and loved seeing Ellie J.

She also went swimming and to a birthday party. She has had quite the day.

We are so grateful for full, happy days like today.

AND- For those of you who have asked about the online photography classes. It is also Free.99$ (always a plus) Once there, to the right side it says classroom. Click on that and it takes you to a list of lessons. Start on the first one or if you are more advanced and want a refresher, click on one of the classes further down... If you decide to take the class too, don't leave me out.. I want to see your pictures, so blog about them and send me a comment that you did so I can see what you are doing.... http://morguefile.com/


I have a few pictures from the fair, I just need to upload.. If you see this tonight or early enough tomorrow, it is still going on tomorrow (Saturday 28th) and it is at the Southtowne Expo Center. It is also FREE.... So go enjoy!

Thursday, February 26, 2009

STUCK


I am taking an online photography class. It has been really amazing and exciting to learn all about something I really enjoy. The problem is..... I can't move past the first lesson.. Not only that; I can't move past the first assignment. I wanted the first assignment to come easy. I didn't know what I would take pictures of. I kind of waited for something to scream, TAKE MY PICTURE. It never happened... So I went with what I like... FOOD and FLOWERS.... Even after taking these pictures I am not happy... They just aren't doing it for me... So I guess I need some suggestions. The assignment is to get in really close. Almost to the point that you don't know what the subject is. I guess I will try some outside shots. I will forever be stuck on the first assignment until I can find something that Screams... Or talks..... or whispers.
Posted by Picasa

Monday, February 23, 2009

On the Surface!!!

Gator had an appointment today to see his Cardiologist and have a limited echo. He is eating well and weighed in at 25 lbs. Eating is one of our strong points as Homers. He is doing well in other areas and for this we are so grateful. We are so lucky to have him home and doing so well. The only little stress is that his function is pretty crappy. Dr. Su put Gator back on Dig- to hopefully improve this. He had always had non-stellar function, but it seems it has gotten worse. What this means is, we go back to see Dr. Su a lot sooner, we treat his blue spells with a little oxygen, and we try this medicine that will hopefully help with a little tweaking. We also talked about the Fontan. This is the next and last stage in his palliation. At this point we won't think about it until function is up and he weighs a little more. This is the reason that we need to address the function issues now. We don't want to cross bridges we haven't come to yet. We are so lucky to have great Doctors to care for us..... We have a Synigis injection later this week. One more in March and we are done with them....Hurray!!!!!!! Ry played with friends and loved every minute. Thanks for your help, friends. We are so lucky to have so many friends and family who care for us and are so willing to help us out. I won't forget your kindnesses and I am determined to pay it forward.... SO CALL ME!!!!!!

Wednesday, February 18, 2009

Sparkly Whites

Gator went to his first Dental appointment. He wasn't a fan of the masks/scrubs they wear (maybe something from his past) but, he let me hold him and let the doctor look at his teeth. He has a little break down from his oxygen and a little from juice in a sippy, AND from his reflux, but overall he is looking good. Those darn Nubies I thought were so wonderful are really close to a bottle and act the same way on teeth. We learn right. They didn't do any cleaning other wise he would have to go on an antibiotic, but the dr. doesn't do actual appointments on little ones until they are three, unless they need intervention. So we will keep up the brushing (he doesn't let me floss yet) . And doing his "happy" visits. A ride in the chair, a peek if possible and the best part a new TOOTH BRUSH!!!!
Posted by Picasa

Sunday, February 15, 2009

Big Boy

Yes, I have started trying to introduce the potty to Gator. Yes, he is only 22 months. Yes, I know that you think I am silly for starting early.

But, I think every child is entitled to an early start. I think that he can do it. Besides isn't potty training in the beginning; training the parents to be aware of the signs that their child needs to use the restroom.

In most countries besides the USA, they start very early. Six months is the earliest that I have heard of a mother training her child. Too early for us. I started Ry at 18 months. The process is extremely slow. I don't think it is the easy route. I don't even want to toot my own horn for starting early. It is just another choice we make as parents. I prefer my children to learn early to save me the expense of diapers. So it is kind of selfish. But, he is doing wonderful at it. In fact today he has used the restroom twice. This includes washing hands, a huge happy dance from mommy, sissy, and daddy, and a special treat to show him that it is a fun/exciting thing to do...... He may be turned off from it in the future and if so, that is okay.

Ry also informed me today that "P" is not a bathroom word. It is a letter in the alphabet. SMARTY PANTS.
Posted by Picasa

Thursday, February 12, 2009

Yummy

Yes his kisses are that wonderful. He is so sweet!

Can you tell it is a heart. I have been trying out some of the heart hair do's.... I saw a darling one I want to do Saturday.

I am forever trying to find a solution to all of the hair things that we have collected over time. And here it is. I saw this on another blog. It is a shoe organizer and it holds EVERYTHING. I pretty much love it. If you have girls and you have tons of hair things, bows and flowers and such, you can see everything and still have a home for it all.......
Posted by Picasa

Monday, February 9, 2009

Necktie tutorial

I hope this link works. This is the necktie tutorial... If I can do it so can you... http://www.ottobredesign.com/en/print/index.html once there scroll through until you see the little picture of a pink tie and a polka-dot one and click on it. That is the pattern and instructions... I printed off four of the same thing so that I could cut them up for a pattern and use one for instructions..If you give it a shot... Post a picture so I can see...

Wanna make someth'in of it?



So it was my birthday... I am getting old.... Crusty if you will.... When I hit thirty in a couple of years I am sure my life will be over... In the mean time... My birthday rocked. I got some spank'in new whites for when I attend the temple, all from my in-laws. My original dress is a little on the small side, I am keeping it though. I am gonna get back into it someday. I love my new one... (I feel pretty, oh, so pretty) On my actual day, I went to Taylor Andrews to help kick off CHD week so I got to party with my hair-homies. I also got to hang with some of my heart buddies. After that, my mom took me out to lunch at my favorite Korean place, Sam Hak---- YUUUUUMMMMY.. I got the usual, and I can't spell it to save my life so I will just tell you it is scrumptious. Then I went over to my other old stomp'in grounds Dallas Roberts. My little sister is going to aesthetics school and gave me a fantastic facial and pedi. Here is a picture of my toes

flipping the naughty- It doesn't look too bad, but Puff and I laughed so hard.


Then my boyfriend arranged a date to a new place that is now another new favorite. A real live Italian restaurant right in Provo. OOOOHHHHH... Good.

It was fun to be alone together, enjoying each other.

Then when I got home I found another fun surprise on my front porch... It had hearts on it, and a new stitchy!!!! I am so spoiled....

*Contented SIGH******

Sunday, February 8, 2009

CHD Awareness Week

February 7-14, 2009 is Congenital Heart Defect Awareness Week.

**A Congenital Heart Defect (CHD) means a child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, may be put together the wrong way, may have holes between chamber partitions or may have narrow or leaky valves or narrow vessels. There are approximately 35 different types of congenital heart defects.
**CHDs are the #1 birth defect in America, affecting approximately one in one hundred or 40,000 newborns every year.Each day 10,830 babies are born in the U.S.; 411 of them have a birth defect -- of those, 87 will be born with a congenital heart defect -- that's more than cerebral palsy (27), sickle cell disease (27), Down Syndrome (12), and oral/facial clefts (11) combined (total of 77). (According to the March of Dimes)
**CHDs are responsible for one third of all birth defect-related deaths, and sadly 20 percent of children who make it through birth will not survive past their first birthday.In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
**For many children a new heart is the only option, but only about 30% of the children who need a heart transplant receive one in time. Elaine was one who was part of the 70% who could not wait long enough. In 2007 there were 327 pediatric heart transplants performed in the United States. The average heart transplant only lasts around 10 years

Penny Left me a comment that I thought was very important and thought I should add. "Just to add to your statistics, as you are referring to CHD, it might be appropriate to point out that of the "Down Syndrome (12)", about 6 of them will also have CHD as nearly 50% of babies born with Down's Syndrome also have CHD.

I am so amazed at all of our little friends... CHD's are sometimes very complex as in Gator's case. Sometimes CHD's are something that accompany another complex issue. So here is a shout out to all our little friends with CHARGE, T-21 (Down Syndrome), T-13, And CHD's alike!!!!

DOD


Dance Observation Day!!!

Even if she doesn't grow up to be a famous dancer at least she loves it now.
Posted by Picasa