Wednesday, December 24, 2008

Merry Christmas to all of you!!!

Thursday, December 4, 2008

Keep Walking

I always wanted to take Jordan to the Seaworld at least before the weather become colder, but we couldn't see the right date. So finally last Saturday we were able to get there and the weather was perfect, warm and sunny. Jordan is so close to be a walker, he can walk more steps each day and last Saturday while his grandpa was watching him, he made his first walk when he stood up by himself. Grandpa and mama were so impress how strong he was. It always make my heart melt whenever my son did something amazing, it's like hey that's my son yeah!

Here is the short video of him walking in the park. He likes to watch Sesame Street and see Elmo every morning so taking him to the Sesame Park was perfect. He thinks he is actually in the Sesame Street :)


Tuesday, December 2, 2008

Glad to be home on Thanksgiving :)

We had a busy weekned, we enjoyed our Thanksgiving with Jordan being home for the first time. I prepared almost everything, from food to decorating the house with Christmas Tree and some fresh flowers. I wanted to make it special since Jordan is home. Grandma and papa were here and Auntie Ana to celebrate with us. Our good friends came too for a dinner. The meals I prepared was perfect and I am proud to say I cooked the Turkey and roast beef really good. They all love it. What a perfect Thursday night :)


     Happy Thanksgiving!
Thank you Lord for this blessing 
Our beautiful Christmas Tree, Jordan loves to pull off the ornaments

Sunday, November 23, 2008

Saturday, November 22, 2008

Watch Jordan trying to walk!




I've finally learned how to download videos in You Tube yehey and I can share some of Jordan's video to everyone. Here we are at the Village during the Veterans Day. Jordan can walk anytime soon. He is into walking right now, he usually pull himself up when he hold something and then he will try to walk across the room... he looks so cute. I think once he learned to stand up all by himself  then he will be officially a walker. 

Jordan just turned 14 months and I am happy that things are still on the right track. He managed to gain weight with only 18 hrs in the TPN. Proven that those guts are still working and will adopt slowly as he gets big.  He is 23 lbs  almost 32 inches tall. I think he will be tall like his dad. We added Pectin in his formula for more calories and nutrients. Right now he gets a total of 461 ml (per my calculation) for a day and I mixed it with a tablespoon of Pectin. He can now have 5 bottles of milk and 1 ounces of baby food. He loves rice cereal and oatmeal. Jordan doesn't like sweet taste yet. He is still sensitive in different taste but thats ok as long a he eat food I'm happy. 
We are hoping he will make it to 30 cc per in milk in two months, if it happen then he can be in TPN for 12 hours...yeah...I will be praying hard for that :)

Anyway, I'd like to Congratulate two beautiful girls and their wonderful parents, Ellie Brogan and Caleigh on winning off from TPN. You go girls!!!

Monday, November 17, 2008

Veterans Parade


We celebrated Veteran's Day at Pacific Hwy in San Diego last Thursday. This is Jordan first parade, he was so excited to see it and waited for his dada to walk in the parade.  





 

Saturday, November 8, 2008

a kiss from mommy


I am blessed to have our son home with us. I love every minute of it, sometimes I get really stress thinking just how to keep up with all of  his medical needs and doing all this every day sometimes we get too tired, but I don't give up because each day we see the improvement. The most important is our son is healthy and growing. 




 



I can't resist how chubby his  face! He is getting chunkier! Those huge legs are so strong... he could walk any time soon. 








He had reach 10. 5 kilos last thursday and our GI doc did some changes on his TPN rate, she lowered it because she think Jordan is gaining a little too fast. He did good on the first day of 18 hours TPN, with a 6 hours off from TPN, during those time he is still very active. He loves to cruise and walk under the dinning table, and climbing up to the stair. We have to start buying those gates, I actually bought one and had placed in one of our stair, as soon as Jordan saw it, he crawl straight to the gates and started pulling it, the gate I got is not strong enough to stay and it fell down. We have to buy the real one and have to install it.
We also started giving him rice cereal and he tolerated it good. We will also going to give him some oatmeal too. I think he is getting tired of baby food like the green beens that we always give him. 

Sunday, November 2, 2008

Daylight Saving Time

We woke up early this morning, it was around 7:30 am usual time we wake up every day. My in-laws are busy playing peek-a-boo with Jordan when I told them excitedly and proudly that Jordan will be done on his TPN at 12 noon. After two hours of playing, Jordan was so exhausted and took a nap at 9:30, as soon as I put him in bed and tried to changed his ostomy bag (leaking on the left side) I was counting the hours left and really thinking it will be done by 12 when I look at our wall clock and it's 10:30, oh gush I totally forgot about the time savings will be change at 12 midnight last night...TPN will be done by 11 am! hmmm now I'm a little bit alarmed because he will be disconnected until 6 pm, meaning he will be off for 7 hours, an extra hour. Since this is his first day on 6 hours off, I hope his blood sugar wont get too low and he doesn't get dehydrated. So I called George and told him that we need to set up the TPN and hook him back at 5:30 p.m that way we avoid him having miss the hours and we could go back to normal hours tomorrow. Later afternoon we left the house and do some errands and shopping when we check the time and found out that we only have an hour to get home to set up the TPN.  We rushed back home and we tried to set up on time unfortunately Jordan ostomy bag leak again and I have to change and clean him, by the time Im done changing him it was almost 5:45 p.m. There will be nurse coming tomorrow to draw blood and check his blood sugar level.  

Ah what a day and starting to get a little chill here in San Diego. We love it and can't wait for winter. It has been a little bit warmer for the past few days.
 

Saturday, November 1, 2008

Up up and away!


Jordan had so much fun yesterday walking around. He is our Superman, he saved mama from a monster dada :). At 7 pm the weather was warm and beautiful and we decided to take a chance to take him out at night. We dressed him up as Banana Monkey and we headed to the Halloween Festival at our church... Jordan got so much candies and prizes. Im so happy that we were able to take Jordan out and do trick or treat. This is his first time, last year though he was still in NICU and was only 2 months old. 




Anyway so much things had been changed and Im happy things are going right. We had been increasing his milk and he is on 16 cc per hr right now and will increase it again on Monday. We are trying to get our goal to 20 cc. Jordan is now 21 lbs and 11 oz and our GI doctor decided to decreased his TPN hour since he is eating more. He will be in TPN and Omegaven for only 18 hours. Wow!

This morning we had a Feeding Therapist came over and she will going to help Jordan to eat more food. We discussed about trying new food and different texture of it, by doing this we will be able to find out what Jordan really like if he likes cold or warmer, thicker or more watery, for some reason I've never thought about doing this before, I always try to warm the food but never really mix it with different kind. Im going to discuss this to our GI doctor and see if she will give us a go that we can give him more food like rice cereal. 

Another exciting thing is that Jordan two upper teeth are starting to come in. We can see it every time he laugh or giggle. It's so cute and I cant wait to see them all the way in. He is drooling a lot and wants to eat every single toy he holds. 

Grandpa and Grandma are here right now for visit. They love playing peek-a-boo with Jordan. His is becoming more and more active. He loves to move around the house and his favorite spot right now is our dinning table. 

Friday, October 31, 2008

Happy Halloween!!!

Jordan enjoyed playing with dada while checking out all kind of pumpkins. He also got the chance to ride a train with me. 




Friday, October 17, 2008

New Hair style

Jordan always scratch his head or his hair, maybe he is getting too itchy with having so much hair so we decided to take him to the kids salon and make his hair a little bit shorter ( im afraid i won't be able to cut his hair perfectly). We ended up shaving his hair shorter and turn out it really so cute on him. He looks like a baby again and all his chubby face pop up. 

While getting a hair cut, trying to play with the car


ok its getting shorter ma...


Surprise dada I look like you more 


No more scratching head!

clap clap clap

Thursday, October 16, 2008

Feeding Tube and backpack

The past few days we've been trying to keep Jordan's feeding tube stay connected on his g-tube. As he grow he is getting a little more curious and just loves to cruise around the house. Every time the tube came off I pick it up right away and I clean the tip of the tube with the alcohol pad before connecting it back to the g-tube, its just one way to keep any germs away. We had tried to put a tape on the tube so it holds better but it still doesn't work so we decided to connect the tube from the top of his shirt that way he won't step on it when he's cruising, and it worked! Two days ago, while disconnecting Jordan on his TPN. I had an idea of putting the backpack on his back with just the milk pump (really light weight) just to see how he would feel. At first he didn't move and he was just sitting on the floor, maybe he's trying to figure out what's on his back. Then a little while he started crawling until he grabbed his push toy and started to walk around the house. He likes it and he look good on the backpack and the feeding tube is stayed connected without pulling off.

First time with the backpack on


We will wait though 'till Jordan get a little bit bigger and really be able to wear the bag, maybe when he started to walk.

Last Thursday was the last day of dose of his antibiotic so we are back to normal hours of TPN. So glad he had more free time to play without worrying the TPN tube. We are going to keep bumping up his feeding every Monday and Thursday. Right now he is at 12 cc per hour plus 15 cc of bottle feed 3 times a day. He is also eating good food with the total of 1 ounce a day, I do give him at least 2 spoon every feed. He likes green beans, sweet potato and butternut squash. His ostomy output still good with the average of 370 the most. No sign of bacteria overgrowth. He is teething again, although the tooth on the top hasn't really come in yet, hopefully it will soon.


Friday, October 10, 2008

Baptism and Birthday Party


We finally had a chance to baptized Jordan. We dicided to do it on the same day on his first birthday party. The party was so much fun, we are so blessed that we were able to get home before his birthday and we had a chance to prepare everything in last minute for the party, although I've been busy organizing it for the past two months. My husband and I decided to do a Circus Theme party with animals since Jordan doesn't have specific favorite thing yet ( although he loves toys and animals) we thought circus theme would be so much fun and glad we did.

Just before he recieved the holy water

Our little family

With Dr. Boamah, Jordan's GI doctor is so sweet to dropped by to see him


1st Birthday Cake, it fits with our little Champ!

Jordan's cousins and friends
Our great friends from church
Here is my little Leon, grrawl!!!
One of our happiest day, a celebration of our son's first birthday!
We can't believe Jordan's just turned 1!

He is trying to dig in the icing cake...too bad he can't eat it all

Daddy and little Leon
Im so glad Jordan did really enjoy his party. He really knows how to enterntain his guest. He even get the chance to play with the clown and had his face painted, its sooo cute. He also enjoy the bouncer and the balloons.
Thank you so much to everyone that made this celebration with us!

NOTE: So sorry for the delayed on posting his birthday pix, I know you all wanna see his first birthday event. Our computer got virus and so happy that we had fixed it and its working well again.

Friday, October 3, 2008

Walking & climb up

He's doing great on pushing his car. Jordan will be walking soon!
This is his favorite choo choo train, a gift from Nurse Ellen
I just found out the other day that he could climb up stair

Sunday, September 28, 2008

He is becoming a big boy!


This is one of Jordan's new favorite toy, we call it "red bambol bee". Every 5 pm after his TPN done, we take him outside for a walk. You should see his face whenever he rides in his car...a huge smile!

Daddy's trying to teach him how to hold on the steering wheals and then honk 
I think he gets too excited that he forgot what daddy just taught him hahaha

Jordan is surely growing so fast, new skills he can do is pushing the walker, he received a gift  from his nurse Ellen, its a push walker and he loves playing with it, he is walking around the house pushing the train, he also likes to play around the dining table, cruising around it. Every time he fall he will get up and walk again. I am still adjusting on his short hair though. He looks like more of his daddy now. 

Update about what's goin, Jordan continues getting his fungus antibiotic ( 21 days more, infused for 2 hrs). We are back on actigal and he gets that twice a day. He can eat sweet potatoes and butternut squash (1 ounces a day) but I think he likes sweet potatoes so we tried to stick to it and greenbeens. When we started feeding him 4 months ago he did really good in eating but after we came back from UCLA (we kinda stop feeding him bec. of the surgery) when we came home he lost his interest of eating food so right now I ask for a therapy that will help him to eat again. Whenever I feed him he doesn't open his mouth although he does eat the food. Luckily our regional center were able to find us a therapist (from Sunny Day program school)  that will help him to eat. The therapist will be coming to our house once a week for one hour and would teach Jordan how to eat and help him to development other skills as well. I think we'll start next. 
Last Thursday we had an appointment with Dr.Boamah our GI doc, good news we weight Jordan and he is about 19 lbs and 6 ounces  yehey he gained 6 ounces in a week! I am happy he made it 19 lbs on his birthday. Although he didn't grow that much his length is only at 27 inches. Anyway, Dr. Boamah told us that she is planning to feed him more, since he is getting bigger we should try to do the bolus, like I think we can feed him more of solid food then we can reduce the TPN time. Ahhh this is another exciting thing to look forward. Jordan is getting 8cc per hour continous feed and 15cc of bottle 3 times a day. We will watch his output this weekend and if his output looks good, on Monday we can increase it to 9cc. by the way his stool is getting regular now, 2 to 3 times a day which is a good sign that his colon is working well. His ostomy bag had been behaving lately, what I usually do now is  I change it every morning and before he sleep at night to prevent the bag from leaking or getting worn out. Ah thanks for a little break, hope it will continue to stay like this, but anyway have I mention now that he is more active, he sweat a lot and whenever he sweat his broviac dressing comes off too...we've been changing his broviac dressing almost every day. Dr. Boamah told me to try the adhesive to keep it seal, it work but there are some spot in the dressing that is still coming off. I am a little worried about this, I hope he doesn't get infection from opening his dressing. I would appreciate if you have any suggestions on how to keep it seal and safe.  

So far Jordan's has been good, stable temp and he is just a happy baby. The only another down side is he got cold, a very stuffy nose and he is caughing. Im trying to treat it with Vicks vapo, every morning and night I rub it on his chest and back and we also got a vicks vapo steam, it helps him to breath better, every night we turn it on and put it on our bedside, its like we have a little sauna with the scent of Vicks. 

Saturday, September 27, 2008

Grateful


I love this picture of my son, very meaningful. I think of this picture as if my son is trying to reach on his bright future and at the same time this picture remind us what a eventful year he had and he succeeded. I am grateful that we are able to celebrate his first birthday. I am grateful that we are home with him. I am grateful with all the people who cared and prayed for our son. I am grateful with all the medicines he receives everyday, doctors and nurses cared for him. I am grateful to all our families and friends, they are very supportive and understand us and his medical care.  I am grateful God is always with us.

Friday, September 19, 2008


Happy 1st Birthday Leon Jordan!!!
September 19, 2007 at 12:35 am 4 lbs & 17 inc.

Here's Jordan a minute old :) 


And here he is now after 12 months filled with love, joy, hope and faith 

Did I tell you Jordan got a new hair style, I finally got to cut his long hair




Thursday, September 18, 2008

This is what he's been doing while we are in the hospital
Playing and exploring a lot of new things

This is one of his favorite toy in the play room
He is like a monkey, trying to climb up the crib and could stand as long a he wants



I think Jordan would be a captain or a pilot someday, he love this wheel, he thinks he is moving


He is learning to start to eat all by himself, he loves to play the spoon and biting the plate


This is his favorite page in the book, he likes color green and yellow
He got his new broviac catheter today and he recovered pretty fast, doctor sent us home this afternoon! Yep we are home yehey!!! Jordan got so much present from the doctors and PICU stuff, they even decorated his room yerterday with banners and poster for his first birthday. Before we left we had a little celebration for Jordan's first birthday with a slice of cake and a cookie for everyone.
Our little champ is home with us and we are going to celebrate his birthday tomorrow.