Please Pray for a child that had a heart Transplant

Please help us praying for a little boy who had a heart transplant and going into a critical condition. Please check his own site for more information.

Bicycle Trailer

A week ago we bought a bike trailer. Since we only have one car to get around the town, and Ralph normally has the car when he goes to work. My kids and I usually stuck in the house for four days, and we couldn't get anywhere with two kids without any form of transportation.

Anyway, today Ralph finally hooked up the trailer unto my bike. I haven't use my bike for almost two years, so I was so excited about it. I can finally have an exercise buy pulling my kids trailer. BUT as we went down the drive way my bike got flat tires, both of them. I knew Ralph filled the tires up with air. I was frustrating. Well, since my kids enjoying the ride in that trailer, we still walked around the block since the trailer can converted into a stroller. We got this from Walmart.

Two onces at a time!

Gerald had a great day today in his feeding. We fed him every half hour two ounces at a time. Its a lot of work, but whatever works for him thats what we are going to do. Great Job GJ!

Fruits and Veggies

I was confused about my homework this weekend. I thought that I must have to seven to fourteen combination of fruits and vegetables. So, this morning I told my husband that I need to go to the store and buy more variety of fruits and vegetables aside from the fruits and veggies that we already have.

I normally buy fruits and vegetables every Wednesday because that is where every store have their " specials" meaning cheaper prize. But anyway, my confusion lead me to the store and spent more than $35 for fruits and veggies. Which is very irritating because these fruits and veggies go on sale every Wednesday :( that I could spent less. Anyway, as I was unloading my grocery bag I put all the stuff that I bought and took pictures of it. Also, I called my husband and told him that all of these fruits and veggies I must consume it in one day. I my self can't believe it because that is a lot. My husband said " wow thats a lot!". No one ever eat that much of fruits and veggies everyday. ( I just measured a cup of every thing :) a lot easier).

Breakfast omelet

So for breakfast, I made omelet. I used four egg whites and one whole egg, 1 cup of chopped celery, and 1 cup of finely chopped carrot and onion. It turned out delicious and as my hubby said " weird but good". In this was I got 2 kinds of veggies and 2 kinds of fruits an orange and an apple. So I need five more combination of fruits and veggies right? 

So for lunch time, I separated my fruits and veggies. I cooked the bakchoy with 1 small can of sardines so that we can have some protein. After eating all of these made me so full, and I was thinking to my self that I don't want to eat dinner tonight.

After lunch, I started my homework and the first question was way off than what I thought. 

" Task: select one day during the week to achieve the U.S. Dietary Guidelines of eating a combination of seven to thirteen fruits and/or vegetables daily.  Incorporate these foods into your regular diet."

I thought I have to eat in one day those 7 to 13 combination of fruit... I guess I just don't understand the question.

Okay, the more variety of colors of your fruits and vegetables in meal is a good practice. Also, use fats that are good for your heart like olive oil or canola oil. Avoid trans fats because it increases your bad cholesterol and increase the risk of heart disease.

IEP Meeting

Last Tuesday Gerald had an annual IEP meeting at school. I was pleased that going to school helped Gerald a lot! My husband thought before that going to school of such a young age ( 3 years ) will not do him any good, but I was an opposite outcome because he learned a lot from school. He is totally different Gerald since a year ago. He is very soical and not afraid of playing in the playground.

Snce we do not have a babysitter we took the kids at the meeting. I was amazed how Gerald play in the classroom. It seems he know how to operate everything. There are some goals ( OT, PT and Speech) that have been met over a year in the program, but some are remain the same goal since he hasn't mastered them .

 

I thanking the all staffs at his school who work hard with him for teaching him and helping to meet his goals.

Feeding Issues Once Again

Sighhhhh I thought I completely transitioning Gerald to a day feeding, but I guess not! He did really well for almost three weeks without puking at all. I was really proud of him and bragging about it with his GI doctor that he was doing real well and no more puking. The doctor went up one knotch of his calorie intake from 1100 kcal/day to 1400/kcal/day which gives us upto six bottles of pediasure. He did well for one day of no puking and for the rest of the week and until now he puke and puke and puke every time I gave him his feeds. My husband and I were talking about blended food, but I said that it is not appropriate for us because I couldn't keep up my kitchen regularly. Once I get done everything I need for school and be focus on hose cleaning and other stuff I might considered the blended food. Plus, he has diarrhea everyday. For  more than 2 years he had the constipation, now he have diarrhea. Is anyone know how to treat diahhea naturally? I gave him pedialyte just to balance his electrolytes since he is puking and diarrhea at the same time. Poor GJ :(

Candle Blowing and Dad's Birthday

Candle blowing

It was daddy's special day when I saw Gerald Jay blew the candle. HE FINALLY KNOW HOW TO BLOW! Wow! I was surprised when I saw him blew dad's birthday cake :). The therapist and us worked with him for quite sometimes just to teach him how to blow bubbles or whistle or something. And I finally see him did it in action that he can really blow. Oh! for the record we probably lite that candles more than 10 times before dad did...lol

Happy birthday to my beloved husband and a great father of my kids :)

As you can see Gerald jay was holding the matches and actually asking for more fire :(. Now, we have to be careful of where to store our matches.

Roosevelt Lake

Last day of the spring break! 

Time flies so fast it seems Monday just started and now its Sunday. Oh boy! Anyway, we went on a road trip this morning and came back at 8pm. We drove to Payson and unto Heber and ended up by the Roosevelt lake. The lake I think was over flow since we got more rain last month. I was beautiful lake but too crowded in the recreational area. 

This picture was taken at the entrance of our favorite campsite. It was close due to the winter season as you can see there were pile of snow that are not melted yet. 

Daddy need to hang on to Gerald because he loves to take off towards to the on going traffic.

This picture is by the Roosevelt lake. It was too crowded maybe because of the weekends and plus end of the spring break. Gerald can't stay in one place. he run and run and never get tired, but we are by chasing him all the time. But he was happy thats what important.

Roosevelt lake picnic area 2010

Successful Feeding Transition

Gerald is finally on a day feeding since Thursday. He is doing really well so far. I would say that it was a successful feeding transition for a short period of time. There were some dilemma that going at school since the nurse cannot feed through the G-tube unless she has an specific order.  I got the prescription last Thursday and send it in , but the nurse want more than the note saying " nurse may feed through g-tube or oral thicken feed". She need more than that she said. I was freaking out when the nurse called me at 9 am and saying she can't feed my son. He was hungry already and tell me that she can't feed him because the order was not very specific. Gush! I quickly dress up and went to Gerald school. luckily it was my spring break, and I have the car available for me to do such abrupt notice otherwise my son will e hungry until he gets home. So, my advice to anyone that have the same problem make sure that you tell your doctor these important details in your prescription: the time, amount, name of the product or medications, how many times should be given, and route.

St Patrick's day and GI visit

March 17th: Saint Patrick's day

It has been almost a week that I been picking up my little boy from school because of the feeding schedule has changed and I want him to drink milk right after school instead of being in the school bus for more than an hour with an empty stomach ( teacher or nurse at school would not give any milk unless we provide prescription).

Anyway, I was trying to unlock the car when Gerald Jay run away from me and decided to walk on the concrete beam at the school parking lot. I called him many times, but he wouldn't listen.

Then finally he got tired and sat down and yelled for help! Help him get up... oh boy

After lunch we took Ralph to work early and dropped by at the park to take a family pictures. Gerald was not really liking my idea because, he want to play instead.

he was ready to go

... yup he run fast to the play ground and play fro few minutes. Leaving us (KC and I ) behind while daddy chased him. In this picture  u can see them far behind on the right side.

Well, while kuya GJ was away KC planned something else too. She crawled up in the car seat...

and made herself very comfortable while mommy continues to take lots of pictures.

And when they came Gerald was not very happy for cutting his play time off too soon. He run to this tree and sat there. I picked him up and put him on top ... but he was not really trilled about that. As you can see... he had a false smile!

Well, mommy knows how to make him smile quickly... put him on my shoulder and few seconds later he was giggling.

After the picture taking, we dropped of daddy to work and went to GI doc appointment.

He was quite happy messing with the examination table. I figured I should take some photo of him.

Anyway, the Gastrointerologist visit was great. Dr. Finch was pleased to see Gerald's progress after the last the last visit which was 8 months ago. He increase the number of pediasure that we giving from 5 cans to 6 cans everyday. Total of 1410 calories. I hope it won't get GJ bigger but maintain the good weight that it appropriate for his heart to handle.

Night feeding will be over soon!

Pretty soon the night feeding will be over.

We were successfully transitioning GJ's over night feeding to day feeding. We were feeding him more during the night to avoid the throwing up episode and it doesn't make any sense if we feed him and then he will just puke them all.

Now, he was taking more liquid during the day and if he doesn't drink it I gravity feed him. I think we are more successful of this transitioning thing because he is cooperating with us.

I am very proud of him. Great job GJ!

He is taking only 1400 fluid per day!

at the park

at the park

swinging

 GJ was running away from me :)

I was not successful of taking his picture like Kathlyn

My little girl

the poses!

me and kathlyn

Changing the Feeding pattern

Spring Break is a perfect time for me to change Gerald Jay's feeding pattern/ schedule. We normal feed him more (G-tube) during the night. Since, he have the issue of puking everyday before he got his G-tube, and we continue feeding him until last week. However, his feeding therapist (seen him once a month) advised us to cut down the feeding during the night because it is not normal to eat during the night. I suddenly realized that we kinda forgot that normal people eat during the day and sleep during the night. While in GJ's case he eat and sleep at the same time at night since we fed him through the G-tube ( which serves as his normal routine).           

Anyway, I tried to cut down GJ's feeding since Monday and slowly transitioning into day feeding. He has been drinking milk through a straw ( a big progress in his feeding part) for quite a while now, but there were days that he will not take any fluids then we have to hook him up again into the feeding pump.

Also, after we have the g-tube placed his puking episode has been down dramatically. When he was using the ng-tube ( that also contribute esophageal irritation) the puking is almost every feeding or maybe 10 times a day. And that is why we divided to feed him more during the night.  That is why the feeding therapist kinda back off of him since he was not getting any progress. But now, we are glad that we got the g-tube because it help GJ a lot. His puking episode has been down to 1 time a week or sometimes none.

Gerald Jay with the NG-tube.

GJ with the G-tube placed on his tummy!

GJ's feeding stuff

He is only allowed 1400 fluids intake per day

We normally feed him 700 - 850ml during the night and 550ml during the day through a straw and feeding pump.

This is his feeding bottle with a straw. I tried to put it in  the zippy cup for a change but we would not touch it or drink the milk. So , I switch back to feeding bottle and straw.

New Feeding Pattern:

we are now down to

400ml during the night for 2 days

1000ml during the day for 2 days

Then 

300ml during the night for 2 days

1100ml during the day for 2 days

 and then 

200ml during the night for 2 days

1200ml during the day for 2 days

then

100ml during the night for 1 more day

1300ml during the day for 1 more day

finally

1400 ml during the day

I will need to get a prescription for his feeding from his pediatrician so that while he is at school the nurse will be able to feed him by mouth or g-tube.

I hope this new feeding schedule will work for him and no puking episode. Wish us luck!

CHD Awareness via NASCAR! Help vote us in! (Please share)

CHD Awareness via NASCAR! Help vote us in! (Please share)

Tears

I couldn't help myself to cry this morning in the class while my teacher discussing about diabetes mellitus. Why? Because both of my parents are diabetics, and they are not getting the right treatment that they need due to lack of financial assistance. I found my self irresponsible because at this moment I have no money to give them to get them treated. My heart is aching so much and how I wish I have a job so that I can help them. How I wish I can get on the plane and be with them so that I can explain them how important to treat thier illness. How  I wish to see them before everything is too late... how I wish that they are with me and see my growing kids for the first time. How I wish that one of these days I can go back home to see them.

"I Love you Nanay and Papa"

Phoenix Heart Walk Awareness

February 26th, 2010
Tempe Beach Park

We went to Tempe Beach Park for Phoenix Heart Walk to raised awareness of CHD. We were up very early that morning since we did know how long will it takes for us to get to the place or what might the parking look like. But it wasn't so bad. Only 30 minutes to get there and parking were available.

The kids were very good through out the event. Gerald was very anxious to get out of his stroller and just want to run around, but it was quite a crowded area. So he was in the stroller most of the time just to make sure he won't wonder off. It would be bad! Kathlyn on the other hand she get want she wanted. She got carried by both parents.

 

The "walk" started at exactly 9am. We only did the 1 mile "stroke walk". My husband and I thought that we could do more than a mile walk, but we were happy to be part of the event.

Here we are, I was ahead of them because my daughter was behind my back and Ralph was keeping eye on her. We took pictures of each other with different cameras which I haven't get a chance to upload all the photos from my husband's camera.

Upon the finish line, there were people cheering up for all of us. I feel like I've done the best things for someone and most especially for my son. I was a good feeling. feeling of accomplishment and more hope for my son and other CHD patients.

He was happy to be up and running!

I don't what he was signing... it seems he was saying 'awe" looks like.

I made this sign that suppose to use during the event. But it was too big and no handle so I left it in the car...grrr

Next year I will make a whole lot smaller, and I will put a handle so that it will be easier to carry around.

Also, if anyone is looking for a support group in Phoenix please considered to join the Mended Little Heart Support Group.

CHD: Walk for Awareness

This coming Saturday we are  going to join the American Heart Association for the annual heart walk. This will be our first heart walk since Gerald was born, because I didn't know about this and probably we are busy in school. Anyway, to all my friends who live in Phoenix, Arizona please join us to this event. Our group coordinator Kym created a MENDED LITTLE HEART TEAM. Here is the link please join us!. Thank you!

CHD Awareness Month

This is my personal logo made for my son who is a CHD baby.

My friend JACY specially made this for me, so I would like to extend my heartfelt gratitude to her.

Many people never heard about the Congenital Heart Defect or CHD unless they have experience it or have relatives that affect by it. I never heard CHD before until my first born son diagnosed with CHD in the utero. I was nineteen weeks pregnant, and it was my very first ultrasound. My husband and I were very excited to know the gender of the baby when the lady that performed my ultrasound asked me to move all around and some different angle and position so that she can get a good look of my baby's heart. I knew from that point that there was something wrong. To make my story short after every month of going to the specialist and cardiologist they finally gave us what to expect for our unborn child. He was diagnose with a rare heart defect called HYPOPLASTIC LEFT HEART SYNDROME.

He was born in June 2006 and we named him Gerald Jay. 

He underwent his very first major open heart surgery at 7 days old and did very well.

He had his second stage of surgery at 4 months old, and again with God's healing power he did real well.

He celebrated his very first Halloween, first Thanksgiving at St. Joe's Hospital

He had his very first birthday party at home surrounded with family and friends. And he knew that day that it was for him and all about him.

After his 1 year birthday, he had to underwent surgery again for aortic reconstruction.

Again with God's grace and miracle he did well.

He is one happy boy and enjoy playing, trashing, and love music.

He had his last open heart surgery (FONTAN Procedure) a year ago and he is now doing great!

3 1/2 year old Gerald Jay

Here I am! A HLHS Baby and growing well with our God's grace.

HELP US SPREAD That CHD is #1 BIRTH DEFECT IN AMERICA!

Thank a Lot!

Sincerely,

Nelda