Story of Short Bowel Syndrome

He is 3!

2010-10-16T17:24:00.001-07:00

Jordan just turned 3. He is growing and very happy boy.
We celebrated his birthday with family and friends at John's Pizza. The place offer different games, rides and a buffet.
Can't get enough of balloons but sure he had fun and his friends :)

Summer

2010-09-09T10:53:00.001-07:00

Summer summer summer! We had a fun summer. Jordan is at 31 lbs!

His dad and I decided to take him for a swim and we both surprised how much he loves the water. We are very cautious about his line. Before we take him for swim, we change his catheter dressing and wrap all over his chest, the tagaderm stick well and doesn't come off easily. We let him swim for about 30 mins only, as soon as he done we give a bath and change this catheter dressing again.

Eating a plain nachos and drinking water

2010-04-22T22:01:00.000-07:00

Jordan is now 2 1/2 yr old. Very active and learning a lot skills. He is 30 lbs.

Jordan is so good in drinking water in the with a straw
He loves ICE
and Car Race

Happy 2nd Birthday Jordan!!!

2009-09-19T23:29:00.000-07:00

Wow! Another year for our journey with our son miracle. He is 2 and growing fast!
We celebrated his birthday at the park with our family and friends. We had Diego go Diego theme party since he loves watching Dora and Diego. The party start at noon and ended until 7pm.
Jordan had so much fun playing in the park with his friends.

We are so Thankful and feel blessed having our son being home and hasn't have any line infection since his last birthday. Unfortunately though his broviac catherter keeps braking and two days ago we have no choice but to replace it with a new line.

Medically, Jordan is doing good, we are still working on his feeds and weight. He is starting to learn to eat by himself, no more highchair for him. He loves to eat with us in the table. He also starting to learn to drink from the cup especially with a straw. He is so bubbly and loves to talk.

Below are the pictures taken from his birthday party.

Here he is at 23 months old!!!

2009-08-27T00:38:00.000-07:00

Jordan's 19 month old loves to play!

2009-05-29T18:02:00.000-07:00

He is 27 lbs heavy! At 19 months, Jordan is now only 16 hours on TPN yehey!!! Here's a new video of him playing in the fountain.

Jordan is growing fast and becoming more curious and playful. He have so much energy especially in the morning. He can say few words like up, mama, or he call my name Jacky and he's favorite word is to say "uh oh"! its so cute especially when he thinks its wrong, he would say it.

Jordan's playing at the water fountain 1

2009-05-29T18:00:00.000-07:00

Jordan's dacing at Disney Park

2009-05-29T17:59:00.000-07:00

Jordan meet Mickey Mouse at Disneyland

2009-03-25T10:46:00.000-07:00

Such a big 18 months old!!! Hooray!

2009-03-25T01:47:00.000-07:00

Big Bear

2009-03-09T00:46:00.000-07:00

Last two weeks ago we decided to packed our stuff and drive to Big Bear, have our son get a chance to play with the snow. Since he is walking now and a good runner...we thought it is the best time to take him to the mountain. Surely we are right, as soon as we got to the Big Bear, Jordan couldnt stop talking and he wants to get out of the car right away. When we got to the hotel and I took him to the play ground, we started playing snow, at first he doesn't know what it is but he likes it because its cold. The weather was perfect a little warm, we didn't even have to wear thick jacket. We had so much fun.

Jordan's 16th months old today! Wheee!!!

2009-01-19T12:48:00.000-08:00

Jordan is 15 months old and a very good walker!

2009-01-15T23:11:00.000-08:00

Playing basketball with dad and grandpa

2009-01-09T20:49:00.000-08:00

2008-12-24T21:29:00.000-08:00

Merry Christmas to all of you!!!

Keep Walking

2008-12-04T22:53:00.001-08:00

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 :)

Glad to be home on Thanksgiving :)

2008-12-02T12:04:00.001-08:00

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

Laughing with dada

2008-11-23T00:17:00.000-08:00

Watch Jordan trying to walk!

2008-11-22T23:37:00.000-08:00

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!!!

Veterans Parade

2008-11-17T15:35:00.001-08:00

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.

a kiss from mommy

2008-11-08T17:18:00.001-08:00

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.

Daylight Saving Time

2008-11-02T23:18:00.001-08:00

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.

Up up and away!

2008-11-01T19:57:00.001-07:00

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.

2008-10-31T00:21:00.000-07:00

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.

New Hair style

2008-10-17T00:14:00.000-07:00

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

Feeding Tube and backpack

2008-10-16T23:26:00.000-07:00

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.

Baptism and Birthday Party

2008-10-10T23:53:00.000-07:00

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.

Walking & climb up

2008-10-03T12:35:00.001-07:00

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

He is becoming a big boy!

2008-09-28T00:36:00.000-07:00

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.

Grateful

2008-09-27T23:54:00.000-07:00

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.

2008-09-19T00:21:00.000-07:00

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

2008-09-18T21:58:00.000-07:00

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.

Bye old catheter, hello to new line yet

2008-09-03T22:27:00.000-07:00

The past few days Jordan temperature have been stable, no high fever for 3 days so we are thinking that the yeast is actually going away. Yesterday, he had a blood transfusion and after 4 hours of transfusion he got a fever of 103! Doctors ask for blood culture to check if the blood transfusion causing the fever but this morning the test came back positive for the fungus bacteria. It is still in the blood and sad to say it grew to his catheter line. Doctors been trying to tell me that they might replace it soon but Im not expecting its going to be today. We are supposed to wait for one more week before they decide to replace it but because Jordan had a fever yesterday its clearly that the anti-biotic he's receiving is not enough to kill the yeast.

The plan today would be remove the old broviac catheter and just give him a PICC line. Wait for couple of weeks to heal and kill the yeast before they place a new line, maybe about 6 weeks. Meaning we might go home without a broviac line and instead a PICC line. The first thing I thought about is since Jordan won't have a broviac line, we can give him a real bath in a tub and he can have a chance to play in the water...yoohooo! Now we are excited to go home.

Now back to reality, Jordan had his broviac line removed today at 2:30 pm, we got the chance to walk with him all the way inside the O.R room, he was playing and looking around. Once the Doctor started giving him the medicine to sedate him I can see how he started to fall asleep and still trying not...looking at me and then he closed his eyes holding my hand. We gave him a kiss and me...oh gush I feel like this is our first time in the O.R, ( about 3 times) I have tears all over my eyes... Im just really stress and can't believe he's going back to O.R again and he's gonna have another broviac line. Geoge told me that it's about time to change it anyway cuz he had at least 4 line infections(came from the gut) and he had broviac line since he was 4 months old. We are so careful on caring his broviac line, as much as possible we want to keep this line as long as he need it. After one hour the nurse came out and she told us that the IV line on his hand came off literally so they have to do another line since Jordan will be needing it. I said ok since he is sleeping. OH gush another one... this time they put on his right ankle. He did really good after the O.R. He was smilling at me and a little bit sleepy. He slept for two hours after he woke up, there he is full of life. Standing up and crawling around, about 8pm while we were having dinner, Jordan was lying down in our bed when I noticed there's blood all over his legs and as soon I search where it's coming from...its from his new PICC line. The line came off literally! We called the doctors and they told us they don't have a choice but to take him back to O.R and put another line. This time it's going to be on his groin like in between his thigh, they really have to sedate him. Finally after an hour and a half he is back to our and was crying loud. I think he is really mad. It's so hard to put in sleep and he feels very unconfortabel with the wrap on his legs.

Another plan came up now, we need to have a least 5 negative blood culture before they change his anti-biotic to much lighter (the one he is getting is very strong). We will wait for 14 days before he gets his new broviac catheter. I talked to our GI and told her that would it be possible we can go home before his birthday and she said it is and keep the date we have for his party, which is on the 21th of Sept.

We are so tired right now. Please keep your prayers for our son that he will continue to fight and get better very soon. Thank you to all!

Infection, bacteria and virus!

2008-08-30T23:36:00.000-07:00

Hi to all! I apologized for not blogging in a few days. Things are not going well with our little champ. Jordan was positive in klebsiella infection, it is a bacteria that came from his colon and had excaped and went to his broviac line, we are threating it with anti-biotic called Cexrophine (not sure the spelling). We got discharged last Monday and will continue to give it to him within 10 days. Two days after being discharged, Jordan spike up a fever of 102! I really don't know why he has a fever so we decided to take him back to the PICU, maybe it could be another infection or something else, but that can't be, he's on anti-biotic...oh well.
Anyway, we've been in the PICU since Wenesday. Jordan is still getting his fever on and off until now up to 105! Whenever he get his fever he gets little fussy and had hard time to breath, very unusual for us cuz he never had a breathing problem before. Doctors suggest to do all kind of test like urine, nasal congestion and of course blood culture.

There are two test came back positive, the first test is called fungus bacteria. Since Jordan have some small rushes on his lower abdomen between his left thigh (first skin rushes he had for long time), we are thinking this could be one of the reason why he's still having a fever. The fungus bacteria grew in his blood, very scary to think of it but come on who would think of a small rushes on your baby skin could cause a fever! I guess if you have a very delicate child you really have to be extra-precaution, if you see something weird on his body, skin, or even just when baby is sleeping call a doctor right away. We added another medication for him to treat this bacteria called Amphotericin, and this one goes to his IV line instead. They placed the IV line on his right arm, amazingly Jordan can still be able to sit down by himself and pull himself up, thats how strong his arms and hands.

The second positive test is called Respiratory Syncytial Virus (RSV), this is causing his breathing, if you listen to him, he sounds like he is congested and have a very stuffy nose (not looking like he's having an asthma) a little caugh too. Doctor said this type of virus usually comes on fall like October and November until spring. Oh well Jordan caught it first than anyone else. I knew I shouldn't leave the window open at night, I've learned my lesson. There's no medication on this one. Doctors just want to leave it and just keep him away from any germs meaning we are back on wearing isolated gown and he is not allowed to go out side of his room. Is this virus could be causing him a fever? we don't know yet. We still have to wait and see how he would react when he get a fever and no tylenol were given. So far the last fever he had was two hours ago and it just went away without the tylenol and he wasn't fussy at all.

This is what I am thinking, because of Jordan having a klebsiella infection recently. Base on my research this type of infection can usually get from the hospital and if you get it outside the hospital it is called klebsiella phuemonia. I think this is why he got the RSV. His immune system is so weak that he could get virus easily.

With all this infections, bacteria and virus growing on his blood at the same time makes me worried. The first time I cried and worried about is when I found out he had E.Coli ( two months ago) The rest of our hospital stay I didn't worried much cuz I know he will get better. But right now its been 4 days and yet he still get high fever. I am worried and every single day I cry thinking my baby is getting sick. Will he get better and when? doctors wants to see negative culture first before we go home.

On a bright side...even though George and I are stress we still try to keep our faith and keep our positive outlook in life. We are still excited on his first birthday. Thank God for Jordan strength, he always make us happy and laugh. He just learned how to clap his two hands, before when I clap his hand he would do the same thing to me like he would hold my two hands to clap. but now he claps when he's watching t.v or if he see something funny especially when he see us smilling at him. He also talking more like dada, dada and more daaadddaa and sometimes he say mum and brrrrr. When he doesn't have a fever he just want to play with us and always try to impress us with his new skills. I love it when he does something new like one time I can't believe he just bend over his kness and laugh hard. I think he likes the view upside down.

I hate E.Coli

2008-08-22T22:24:00.000-07:00

We had a long night last night. Poor Jordan he was running a fever at 12 midnight and was really fussy. I knew he is going to get sick again. So we rushed him to the PICU. They did blood culture and urince culture...ofcourse Jordan wasn't happy with all the needles. We almost finish about 6 am and went back to our room when doctors started doing their rounds, Jordan was up all night until 8 am! He started shievering and his temp spiked up 104. Oh gush another infection is back.
We gave him Tylenol to help his fever go down and as soon as he settled in he went to sleep. Right now doctor said that the culture seems like their is bacteria growing and they suspect it might the E.Coli but we will find out deffinitely tomorrow.
Two hours later and Jordan is feeling better. He is back to his normal activities...cooing, crawling and standing up. This boy is really amazing!

Happy 11th months old!!!

2008-08-19T22:29:00.000-07:00

Mommy baked this for me chocolate fudges brownies with a lot of icing!

Im a big 11 months old baby!!!

I love playing, I could play all day

I feel like we've been so much blessed for the past few weeks. Thank you God! Jordan has been good, no fussy or fever! Although we are still very careful especially on keeping him away from infection. With all the Ostomy bag leakage and sometimes his caterer keep pulling down, it is always still scary for us. I hope he will continue this and just keep growing big. You should see his chunky legs :)

So today, I decided to make something special to celebrate our son's 11th month. I bake brownies and I actually burned the top ( never broil it...)ahhhhh what am I thinking,,, but anyway good thing I had some frosting and candies so I removed the burned top part and put a lot of icing instead hehehe. Luckily, my hubby and our friends like it better. Also I cooked some bake macaroni (my specialty, it reminds me home in manila) and some pork steak. Yum yum yum!

To our son, Thank you for being a fighter and believing! You amazed us each day with your strength. We love you soooo much!!!! love mom and dad!

Who's crawling and walking?

2008-08-16T23:53:00.000-07:00

Here are some of the pictures we had when we were in L.A. After surgery Jordan had been feeling better. Thank you so much to all of you for your love, care and prayers. Truly God is always there to watch over our son!

Check out my two bottom teeth :)

Playing with cousin Josie

Happy Birthday Daddy!!!

At the Aquarium

Finding Nemo

3rd day after surgery he is already playing

LUV!!!

Update- The past few weeks Jordan is getting better on his knees and legs. He is crawling around the house and sometimes I have to keep my eyes on him make sure he doesn't leave his TPN bag. He is also getting ready to walk! We got him a walker and the first time he used it he was going backward...since then we always try to walk him around the house and I leave him in the walker once in a while and he is getting better, also he could stand up by himself without holding anything for a second. So proud of our little champ!

Jordan had an Iron infused last Monday and he did really well. He got rosy cheeks again and feeling much better. We will start doing it every week now. We increased his feedings and we started the MUD treatment again to clean his guts and to keep away the bacterial overgrowth.

Ah Jordan is getting big and heavier too. His birthday is so close and we are preparing for the big day. We've already found a location were we will be celebrating it with families and friends and I can't to send out the invitation to everyone. In the meantime I am still thinking about the party theme. Here are some of the theme on my list:

A. Circus and clowns

B. Lion and Different animals

C. Toys and Cars

Please help us to decide which are this 3 list are more fun...I think they are all heehhehe....

We saw poopy!!!

2008-08-06T00:28:00.000-07:00

Our prayer had been answered! Yes, he finally poopy today! Awhile ago while I was busy preparing food for George's birthday. Jordan was really fussy, he won't seat on his swing or even play or hangout with other people, he just want me. So I decided to take him up to his room and change his diaper. When I grabbed him I kinda smell something and it stinks and Im thinking "did u poopy Jordan?" hmmm well maybe its something else and when I changed him I was surprised when i found it on his diaper. I called George immediately and showed it. We look like we had won in the lottery for excitement, we were dancing around wheee! This is the first time since he was a month old, of course it is a good sign that his colon is working right! A wonderful gift for daddy's birthday hahaha.... good job Leon!!!

For the past weeks, we've been busy hanging out with our families in L.A. Leon anxiety with stranger or unfamiliar face are really not so good. He cries and get fussy, he just want me or daddy but sometimes he just really wants me. I am not happy about it because I can't leave him or I can't do some errands. Some tricks we do sometimes so he get familiar with the other person is we play with him or we introduce the person who wants to hold him like his grandma or papa that way he could feel safe but sometimes it doesn't work, he knows right away if its different people. He will cry like he sounds like he is in pain :(

Last Friday, we came back to UCLA for his follow up check up. Everyone are happy to see him and also Dr. Farmer , he was impressed to see Leon wound had healed quickly but he is not impressed with Leon Ostomy. Unfortunately it is a little push out and every time he cries it push out a little bit more although it doesn't look bad like before but we still get crazy and frustrated sometimes when Leon cry so hard. Dr. Farmer said the good thing about this is you can push it back in and the best time to do it is when he is sleeping. Hhhmmm we never thought that before but we will try it when the ostomy got push out more. But right now we are not

touching it. Another down side is of course the never ending change of ostomy bag. I really hate it when I run of supplies, its so hard to keep his bag sealed on his skin. I've tried probably 6 different bags and yet the best one is his newborn size bag (ref 3778). Sometimes though the bag stay at least a day or two depending on how much he move and play. Oh well in regards of his ostomy supplies I really need to change the amount of items of ostomy bag he is getting and I will call the health care provider tomorrow for follow up. We will see Dr. Farmer again in about 6 weeks.

Anyway, tomorrow we have a check up with Dr. Boamah. She is excited to see Leon and his new site of ostomy. I am excited too because we are going to weigh Leon and talk about new foods for him. Hopefully he will be able to try something new and may increase his feedings too... cross finger. Oh yeah last night while unpacking his clothes I decided to put away some of the small ones and put it on the upper cabinet when suddenly I found some big bags full of his old clothes, when I opened it, it was his preemie and newborn size clothes and suddenly I got teary eyed. I was just thinking of how small he was and these are the clothes that he wore when he was still in the NICU. I can't believe my baby is growing so fast :(. Fra

nkly I treasure each day with him especially our play time together, when I bath him, when he try to impress us with his new stunts which is by the way he could seat up by himself now and crawl at least 2 to 4 steps ( thank God not all the way just think about his bag would be left out). I don't want to miss a thing (like they say). I love when I put him in sleep, it is the sweetest feeling, hug and humming a song to make him fall asleep. I love just every moment with him. By the way our little champ will be turning 1 year old next month unbelievable!!!

First time in the beach, he loves sand at Santa Monica Beach

Surprise!

2008-07-25T23:28:00.000-07:00

Aaahh what a busy week for us. We are tired and very exhausted especially me had been staying in the hospital all day and night with my son. Although it is not as stressful than I thought it would be, it is actually more like learning new stuff for us. The only thing that made me stress about is keeping his Ostomy bag on his skin without leaking. Lately we've been changing his bag about 4 times a day, his skin are so irritated and the only way is at least change his bag before the output leak or touch his skin, some other items I used to help it seal are the stoma adhesive powder and my favorite Barrier Film by Cavilon, this help to stick the bag more, so far the skin is getting better. When I get a chance I will show you how I do and change his Ostomy bag. Also his wound (the old site of ostomy) is healing and we are trying our best to keep it clean and away from any infection. Unfortunately, every time his ostomy bag leak it always touch the wound dressing so we have to change everything. This is another dressing that I learned and have to go through everyday until the wound heals. I am glad some part of the skin is healing and closing up.

Well we got discharged today! This is probably the fastest discharged we ever had. We thought that we are going to stay for another week but I guess Leon is doing good and feeling much better. We started his feedings yesterday at 2cc per hour with Pedialyte, he tolerate it good and later we switched into formula. So far no vomiting and feeding rate was increased at 3cc today. We will keep that rate over the weekend and on Monday we will going to call our GI doctor for follow up. We are still in LA, Leon has a follow up check on Friday and make sure that he is good to go back in San Diego. We are home with our family and everyone are happy to see Leon being home with us again. Tonight I can't wait to get a good sleep and get some rest. Maybe I should try to work out tomorrow just to burn all the fatty food we had ate, UCLA has really good dinning food.

To all of our Family and Friends We THANK YOU all for the love and prayers.

Leon turned 10th Months old!!!

2008-07-19T13:18:00.000-07:00

Hello, I'm 10th month old!!!

What can I say our little champ is growing :). It has been another month Leon makes us smile and laugh! I never thought I could love sooo much like this. He is truly our precious! There's no minute, time or day that I don't think of him, seeing him getting better each day from the recovery is a blessing and a miracle. I love my baby more than anything in the world. I thank God he gave me Leon.

Grandpa and aunt Ana were here to celebrated our little champ special day. Leon is doing good and seems like he is back to his normal routine "playing and standing up". If you look at him you wouldn't even know he had a surgery 4 days ago. He always try to impress us, what a strong boy.

We just settled in a comfortable room with lot of lights and a view of the healing garden, he is more stable and recovering really good. George and I spent our first night together with Leon in his new room. So glad he slept through the night. We are trying to put his weight back again. I'm glad Leon made it to 16 lbs before the surgery, he only lost about 10 grams and we are hoping he could get that back in a week.

Tomorrow plans is to start his feeding. We will see after they do an x-ray of his stomach just to make sure there's no obstraction or anything. I pray that he will tolerate his feeding very well that way he can eat and be able to eat more food. I can't wait for him to try cereal or a fruit. I can tell Leon got a big appetite just like his dad.

3rd Day from Revision urgery

2008-07-17T22:52:00.000-07:00

Leon is recovering really good. Surprisingly he could seat now and talking a lot, looking more comfortable. Once in a while though he cries a little when he sneezed or cough because he could feel a little pain but thats about it. He hasn't receive any pain reliever sine the 1st day of the surgery. Yesterday, I changed his ostomy bag for the first time and I like it the way it look. More easier to place the bag and hopefully when his wound get heal and close up, the ostomy bag would stay and keep longer. He threw up a little bit of some extra fluid due to he hasn't eaten anything. Doctor said we have wait for 7 days before he can start to eat again. This morning he received some platelet due to his level is low. He did very well and I noticed right after he received the transfusion his color had changed. His eyes are more brighter, his lips is more red and he got a rosy cheeks :) so cute.

We hope and pray that Leon will continue to get better. We are not in a hurry to go home, we wanted to make sure that he get treated well and he is able to eat more food. Well we'll find out next week once he start eating.

Hello!!!

They said I look like more of my mommy

1st day of Revision Surgery

2008-07-16T10:31:00.000-07:00

Leon was admitted this morning at 6 am. He is feeling better even though we stopped feeding him last night. We went to the Admission's Room and met up with Dr Farmer to talk about

the plan for his surgery.

The game plan would be to revise his Ostomy then attempt to reconnect his colon together. His ostomy has been in the prolapsed condition 4 months now ever since we got discharged. I think every month his gut pushes out an inch or so? Anyways, we are hoping this surgery will help his ostomy stay intact. Dr Farmer will try to straighten and stretch out his small intestine to prevent another prolapse, then they will try to reconnect his colon. Actually there are two plans for Jordan's colon: Dr Farmer will have to see if reconnection is possible and thats dependent on the size of his colon. If it's too small, the doctor might have to leave it as it is and use a re-feed method. That translates to... more work for us!

We pray that it will be a success, God only knows.

The surgeon nurse just called us. He said they started at 10 am and

it might take 2 to 3 hrs. We will keep everyone updated on developing events. Right now we are in the

OR waiting room. Thank God we are able to use our computer here! The new

UCLA building is really beautiful and futuristic, it eases our minds a bit from the worries and stress.

This is the entrance of Mattel Childrend's Hospital U

CLA

Here we are in the OR waiting room

Update 12:25 - Nurse called and they are done closing up. We are surprised Dr. Farmer came here 10 mins to talk to us. He said Leon is doing great! His ostomy will be on the left side now which I think is better to keep off away from his broviac line. He did reconnect the bowels together! A good relief to us yehey no more prolapse. Leon just transferred at the Post Recovery Room. We will get back to you all as we need to see our lil' fighter Leon.

Update 7:42 - Leon has been transferred to PICU. We are happy and thankful because of the result of the surgery, Dr. Farmer did his best to make the first plan on reconnecting his bo

wels. The fistula and the old prolapse sight is now closed and he has a new ostomy which on his lower left abdnomen, looking preety good. I hope it'll stay like this until it is ready to close. Leon is comfortable resting on his bed, stable and just relaxed. He usually cries and get really fussy but now we are surprised on how he handle this...maybe he is getting expert on how he handle his body whenever he go under the surgery...but surely he knows how to make us smile :)

Right now, he is being observed for 24 hours. They are working on getting his TPN back, there might be changes on the TPN doses but he will still getting the full nutrients. We brought our wonderful Omegaven and gave it the pharmarcy so they could store it and prepare for him. We are glad that they allowed to use it on him here. Anyway, we will continue to update you all tomorrow as we have to get some rest. We would like to Thank everyone who prayed for our little fighter. God Bless your hearts!

Here's our little champ sleeping quietly with his favorite pacifier and pillow around him

Getting ready for the big event...

2008-07-15T09:41:00.000-07:00

And we started our week by visiting grandma and grandpa in Long Beach. It's been a month since they saw Leon. They were amazed how he got so big and chunky. We left Sunday afternoon. Our car is packed with all Leon medicines and toys! George and I shared in one luggage and Leon has one luggage himself and 3 huge bag full of his stuff. It took 3 hours for us to pack! We were so exhausted by the time we had to leave.

Anyway, our plan for the week is to spend time with our family before we headed to the hospital tomorrow. I will find out later what time he will be admitted. This surgery will help his ostomy to re-insert inside, reconnect the large and small intestines and hopefully he will be able to stool and eat more food. Right now he seems like he is not interested in food, he only like milk and his pacifier and lots of play time. He is getting more active everyday. I wonder what will happen when he started walking, I would probably loose weight from chasing him around with his 20 lbs of tpn and milk bag. Last night he is busy playing, he laughed so hard that made him vomited and he was up until 9 p.m. He had a great day with his grandma and grandpa. Today we are going to the Aquarium in Long Beach with his cousin and uncle.

Leon is exhausted from playing around

Happy 4th of July

2008-07-10T07:44:00.000-07:00

What a long weekend in the PICU! Yes we just came home from PICU. Last Friday we are so excited to take Jordan at Coronado to watch the fireworks with him for the first time. This is the same place we go every 4th of July, just hangin out and have a picnic with friends. Anyway, Jordan was having so much fun, after I gave him his last bottle for the day,after 15 minutes he started shaking and threw up all the milk. So we guessed the fever is coming and he must have caught a bug since we were sitting on the grass and it was 6 pm. Jordan usually home by this time and resting. We placed him on his stroller and he fell asleep after I gave him a massage on his feet to make him feel better and we wrapped him well. After an hour his temp came down and well as usual he is smiling again. He watched the fireworks for the first time and he loved it so much! He was amazed with all the lights and sounds. After the show, we headed straight to the PICU and they started to draw blood. After 24 hrs the culture came back positive. Jordan has the same bug called E. Coli from his intestine that grew back to his line. This infection is really scary and can could kill him. It frustrates us because it normally grow from his intestine and we can't do anything to prevent it no matter how much we are careful with his line. Jordan intestine doesn't have a mortality to block it as being a short gut though Dr. Boamah says this can be treated with some medicine just like the one we did few weeks ago (MUD Treatment) and since we only did it once we are going to continue to use it every 3 weeks, this will help to clean out all the bacteria from his intestine. I noticed after the MUD Treatment his ostomy output has been low and our GI doctor is happy about it so she decided to increased his feeding. He is getting 15ml per bottle 3 times a day and 5ml continues feeding, also he can have more than 1 ounces of greenbeens. His weight is going back on track again, 15 lbs and 80z .

At the Coronado Ferry Landing

With friends

Here he is first time he pulled by himself up!

Home finally and he is crawling like a lion!

He's getting big!

2008-07-03T23:19:00.000-07:00

Today was very exciting. First, Jordan did actually crawled with his feet and hand moved forwards, he did at least two steps. We are so amazed and proud of him , who knows tomorrow will be the first day he will be crawling around the house.

Second, he is now 15 lbs and 3 oz, 25 inches long yehey!!! he gained at least 7 oz in a week even though he's been so active lately and playing a lot, burning a lot of calories. I try to limit his playtime though because sometimes he worn out himself too much from playing and his body temp get little bit high around 89 to 99. We are trying our best to keep him away from getting sick because he will be having a surgery on the 16th of July. We want to make he is strong and bigger.

Third, Jordan got his big boy stroller, meaning he is ready to face and see the world!

Jordan enjoying his new stroller and showing off his two big feet hehehe

Mom, I think its too sunny :)

A Cup of Comfort

2008-06-30T23:07:00.000-07:00

"The LORD is close to the brokenhearted; he rescues those who are crushed in spirit."

Psalm 34:18

Happy 9th Months!!!

2008-06-26T00:00:00.001-07:00

Jordan turned 9th months old last Thursday of

the 19th. We had dinner at the house and celebrated it with a slice of cheescake.

JOrdan is in crawling position. He is getting to learn to crawl. He loves to roll around and trying to stand up.

Happy 1st Father's Day Dada!!! I love you

Last Sunday Jordan had a fever of 100.4 . After church we head back right to home and packed our bag to go back to PICU. After 48 hours of blood draw it came back negative for infection. Thank God. We came home the next day and we started the MUD treatment right away. Since then Jordan ostomy output has been stable and he's doing well and gaining weight.

Jordan first time to play at the pool...he loves to kick his feet in the water.

Well after 5 hours of being outside, I checked his temp and he was hot! around 99 to 100. So I got a little scared and my husband told me that he might be too hot because of the weather. Yes he is right, as soon as I gave Jordan a nice bath and turned on the AC and put cold wet towelet on his forehead and put him in sleep, his temp started to go down at 98 to 97. Just to make sure I kept checking his temp and after two hours it went back to normal temp. haaayyy...It was too hot that he got dehydrated, his diaper wasn't even full after 5 hours from hooking up from the TPN.

Here's Jordan trying to walk with daddy. We were at the Farmers Market in Otay Ranch

A Cup of Comfort

2008-06-14T00:28:00.000-07:00

"I will be your God throughout your lifetime-

until your hair is white with age. I made you, and I will care for you. I will carry you along and save you."

Isaiah 46:4

He's growing bigger

2008-06-13T20:13:00.000-07:00

Two teeth coming out together!

Ahhh the most important thing in the world his pacifier

Smile my baby :)

Jordan is now 14 lbs and 2 oz. He gained 8 oz in a week yehey!!! and he's 25 inc long. I am really happy about his weight right now. Finally is he on the right track. We stopped giving him anti-biotic since last sunday and looks like the bacteria had been treated, he is doing so well! His output seems to be stable low even though he's not getting any Flagyl or Actigal. Our GI will be giving him a new type of anti-biotic that will go through his g-tube and we will start on monday for 14 days (Collistin, Nystatin, and Tobramycin).

We took Jordan on the theater for the first time today. We saw Kug Fu Panda and Incredible Hulk, he did really good surprisingly, he was quiet the whole time and just watching.

I think he like Indredible Hulk better than Panda. He took some nap at the end of movie. By 5:30 it's time to go home ad hook up his TPN. And now he is asleep quietly getting more bigger.

Baby Shower at our church welcoming Jordan!

2008-06-10T00:45:00.001-07:00

Last Sunday, our church Nazareth Parkway Hills gave Jordan a wonderful Baby shower party to celebrated Jordan's coming home. He is so happy to received all the presents and all the meaningful cards. The food are great and we had some fun games too. I also got the chance to meet all the our church members and to know them well. Since from the start these are one of the people who really care about Jordan. They always keep Jordan in their prayers. They have done so much help and support for me and George especially our time when we're in the hospital.

Thank you to all of you for the wonderful event you gave us. Your prayers are so powerful that our son is home with us and he is doing great.

Yummy cake

All the beautiful mom and girls hangout and having fun

Thank you Allyson for planning and hosting the party. You have a magic touch :)

Weekend

2008-06-09T11:35:00.000-07:00

Here's Jordan enjoying the sun in the patio with his toys.

9 am playing in the patio to catch some sunlight

Saturday having lunch at Fred's in Old Town

Hmmm I think I want to drink these...

Old Town Martket

Did I hear "Dada"...

2008-06-05T21:50:00.000-07:00

During bath time Jordan was all smiling and kicking when all of a sudden he said a word that something new "dada" with rrrr and high pitch note at the end. I was like did you said dada? and yep he said "dadada" and Im like rrrdadada and he goes dadada... I got teary eye and joy! Oh my gush he is such a smart boy!

This after noon we went to see our GI doctor, finally Jordan is back on gaining weight. Im so happy he gained almost 10 grams in a week, he's now 13 lbs and 10 oz. getting close to 14 lbs wooohoo!!! and he is 25 inches. No wonder his clothes got smaller. Our GI added more calories on his TPN, I guess he need it more because he's more active. We also did talk about our plans going to ULCA. Our doctors in UCLA are still waiting for some documents from our Naval doctors but they said that we don't have to wait long enough and we will be going back to LA soon, possibly before the end of the month. Also they wanted to make sure that UCLA pharmacy will allow Jordan to use Omegaven while inpatient. To be honest, we really wanted to get this thing done and head to UCLA now to fix Jordan ostomy. Jordan ostomy bag keeps licking a lot now because he moves a lot and the fistula between his ostomy and gtube keeps opening and thats how the leek start. I tried different ways to keep close and seal and I even tried to put small bag on the fistula so that way whatever the leek from ostomy some of it will go to the fistula bag but it didn't work. It'll be so nice if Jordan doesn't have any ostomy, I can put any clothes on him withour worrying about the stain or leak.

Anyway, this Sunday our church Nazareth Parkway is going to give us a baby shower to celebrate Jordan's coming home. I am excite about it and also this Saturday we will be attending the NICU reunion to meet and see all the babies that have been in NICU before. A lot of them are premies and Jordan is the only one with a short gut syndrome so they're all gonna be amaze once they see him :)

Home!

2008-05-31T23:43:00.002-07:00

We got discharge from the hospital last Thursday. Thank God, Jordan blood culture had been negative and the bacteria called E. Coli which from intestine and grew to his central line has been cleared. However he is will be

still getting a Cefotaxime an anti-biotic for anoth

er 10 more days.

Updates about UCLA, finally, our doctors from Naval had already communicate to our UCLA doctors and had faxed t them all the documents they needed. We will be waiting for their call next week for us to set a date when we are going back to UCLA.

Meanwhile here are couple of Jordan new pictures.

2008-05-31T23:43:00.001-07:00

Back to PICU

2008-05-27T23:51:00.000-07:00

We were having a fun all week until last Sunday night when Jordan got a high fever (102.00), he was shivering and was fuzzy so we rushed him to the hospital, soon as we got to the PICU his temp went down to 98...they did blood draw and run some test to find out if his infection went back or maybe a new bacteria is trying to grow. (It is hard to see those needle on him, it always brake me) Then I put him in sleep (he was really tired) after two hours he woke up crying and as soon as I picked him up he was shrivering so bad like his color had turned dark and his lips was so dry, we got really scared I never saw him like that and look so sick, we called the nurse and doctor right away. Good thing Dr.Rose is on call for the night, she was able to see him and gave Jordan tylenol right away. His temp was running high up to 102. I was sooo scared I didn't left on his side. After few minutes he calmed down and fellback to sleep. The next day, his temp went down to 97, but at lunch time during his nap his temp went back up again to 101 and he started to shake a little bit so I wrapped him and put some cold bib on the top of his head and they gave him tylenol and he went back to sleep. We started to give him anti-biotic yesterday, the one he had before Ampicilin and they decided to give him the Vancomicin which he gets every 6 hours.
I am hoping we could get the result today for the blood culture but doctor said its still showing negative and we should wait till tomorrow for the final result. They said if its the same type of bacteria growing from the one he had last time (two weeks ago)
culture should have been showing by now but it looks like its a new type of bacteria.
Today Jordan feels better and his temp has been normal but we are still watching him carefully. He is still active rolling around and cooing a lot. He is getting ready to crawl too. Everytime he's on tummy he try to push his legs up and push himself...but I think he might crawl with his feet instead on his knee heheehe. Oh yah another thing is Jordan got another teeth
growing on his lower gum right next to the big teeth hhehehe sooo cute I cant wait to see those two pop out.

A CUP OF COMFORT

2008-05-22T00:35:00.000-07:00

Collecting Treasures

"Mary quietly treasured these things in her heart and thought about them often"

Luke 2:19

When my husband and I got married, we moved far away from our parents but visited them when we could. One summer when we back home with our three children, we decided to play baseball in my parent's backyard. While we are playing, having fun, being silly, I looked over to my mother sitting on the porch.

I recognized longing into her face and I knew what she was doing- recording the moment so she could have a clear memory to sustain her until our next visit.

My children our now grown, and when they come home to see us, I find myself collecting memories of precious moment with them. Sometimes I stand back from activity and simply watch, taking it all in. Then, on those days when I miss them most, I can pull out a happy event from the treasure I stored.

Let us treasure each moment with our loved ones - by Jean Davis

A Cup of Comfort "Devotional for Woman" by James Stuart & Carol McLean Wilde

2008-05-22T00:04:00.000-07:00

During our stay in the hospital I have a daily inspiration book that I read everyday. This book made me inspired and gave me hope and mostly kept my faith with God. Thank you Auntie Helen for giving this book to me, she and her husband, Uncle Edward came to visit us last January. They are devoted Christian and they always include Jordan to their prayers.

Let me share you a cup of God's extraordinary comfort, written by women around the world. I hope this will give you hope, faith and strength that you need everyday.

UCLA

2008-05-20T10:51:00.000-07:00

Last Monday (May 12th) we went to UCLA and met Dr. Farmer (Transplant Surgeon) and his Team. They were amazed of Jordan's color and his being active. Dr. Farmer is really nice. The first plan is to fix Jordan small intestine that has been prolapsed and transplant may be the last option. We got lot of plans for him and make him bigger! They are goin to talk to our doctors here in Naval Medical and see what other test they can do before to start any surgery.

We will going to have another meeting to finalize and talk about more option.

Meanwhile we met Cheryl, a mother of transplant survivor from UCLA. She is really wonderful Mom and very nice lady. We are thankful for her time touring us around the Pediatric Building and showing us some of Dr. Farmer patients that has been doing great especially her son Ryan who had transplant two years ago. Thank you Cheryl!

Happy 8th Months!!!

2008-05-19T23:47:00.000-07:00

Happy happy 8th Months Jordan!!! You are precious!!!

Come on blow the candle :)

Mommy will help you...hihihi

Jordan is so busy playing with his new toys. He is sooo cute! He's finally fits well to exersaucer and stands really good. Two months ago when we took him to Babies R Us, this toy is too big for him, he can barely touch the floor with his two feet and he can't reach the toys around it and now we are sooo excited to get it for him. Jordan loves to play a lot now and wants to stand all the time, he can actually stand by himself by leaning on the wall and he thinks that he is a big person looking around and wiggling. So we decided to get this toy for him to practice his legs and to get him ready for walking :)

After 30 minutes of standing up and seating while spinning trying to grab each toys around it. He is exhausted!!! I gave him a nice bathed and as soon as I lay him in bed he fell asleep.

We are very happy today to celebrate his 8 months and not only that Jordan is starting to gain some weights again. He is now 12 lbs and 10z! I think the Iron and Epogen are helping him the gain, it develop his red blood cell. Two weeks ago Jordan had a bag of Iron instead of blood transfusion. We pray that he will continue to gain and grow bigger :)

Happy Mothers Day!!!

2008-05-12T00:01:00.001-07:00

My last day of pregnancy

Our firs picture together outside the NICU (Jordan first glimpse of the outside world)

I can't believe Im a mother!

My first Mothers Day celebrated at Tokyo Table and my first Momoko Martini.

(Jordan is sleeping right next to me)

This is my first Mothers day as a mom and I am happy and proud of myself. I feel like it's my birthday today! I always wanted to feel how to be pregnant. I remember how I always act like Im pregnant but its all in my head and my husband would always teased me about it. We were so excited when it finally came true. Unfortunately we lost our first baby on my 8th weeks pregnancy. When we had our first ultra sound, our baby does not have a heartbeat. My heart was broken and I kept asking myself why it happened. We decided to wait for a little while and time will come when we are ready. Two years later time came and we got pregnant, we made sure that we will have our baby in this world safe and happy. Leon Jordan came in to our world on September 19, 2007. The first time I heard him cry I knew I love him sooo much and it was the most beautiful sound I've ever heard! What ever happened to my son condition right now I don't blame anyone or myself. I always knew God has plans for me and he won't give me anything that he know I couldn't handle. This made me more stronger and matured. Every morning I thank God for giving our son to us and seeing him growing bigger each day is a miracle. He is strong and a fighter! I love my baby!!!

We are home and Jordan is the Iron boy!!!

2008-05-10T21:59:00.000-07:00

Good Morning!!!

Look at my hair...messy :)

Hehehe....

Jordan and the Iron

Thank God, infection had been cleared out but Jordan will continue to receive antibiotic at home so we have ano

ther medication added to our list. He will be getting Gentimacine and Amphiciline. Last Wednesday, our GI doc decided to give Jordan a Iron instead of getting a blood transfusion. He did very well and did not developed any allergies so I think our doctor will give him Iron every once a month from now on and that way it'll help his red blood to build

more.

Jordan alertness is getting better than ever, if you look at him he doesn't even look like he's sick. He is so active and now that he knows how to roll...gush its scares me sometimes because everytime he roll back from tummy he will arch his back and go up and push himself forward and when he is on his tummy, he push himself backward instead forward like crawling, but I think he might crawl too soon! with all his new acrobatic thing makes his wires go tangled and thats scary! so I have to make sure wires are all in placed. To all short g

ut parents, you are welcome to share us your tricks on keeping it in place :).

Anyway, we came home last Thursday and we are very exhausted but glad to be home again. We missed our bed and Jordan missed his cribs too. We had our home care nurse to help us to give his all new medication. Later at night while Jordan sleeping peacefully, I noticed his g-button is leaking a lot than usual and his onesie shirt is so wet in the front (I thought his ostomy bag had leak) so I changed him and put back to sleep. The next morning, Jordan is soaking wet and I check it and found out his g-button is leaking a lot and his ostomy bag is empty which is surprisingly i haven't drain it since the last time i checked him...hmm something is wrong. So I decided to call our Pediatric Dr. Rose and she adviced me to go to PICU so she could check his g-button. After 30 minutes we are back to PICU. They did an xtray on his stomach to see if the g-button had disloged but the resulted of xray g-button look fine and it is still on the right placed. The doctor decided us to stay over night so they could monitor his stomach and hoping his output would go back to normal. Ahhh we haven't had enough rest and we are back to PICU again...well I guess its better than worrying about something there might be wrong if we stay in the house. Few hours after we admitted, his g-button stop leaking and his ostomy output is back to normal. Doctor said previous infection probably caused it and while on antibiotic. Another reliefed, we can discharge the next day and I made sure to the nurse to discharge us early in the morning and she did. We left at the hospital today at 12 noon.

Line Infection

2008-05-05T22:51:00.000-07:00

We found out that Jordan has a line infection and they are treating it with two anti-biotic, one is Gentamicine which he gets every 12 hrs and Amphysiline. This is his first infection since he got his line 6 months ago. I am a little nervous because if the bacteria continue to grow, doctor might have to replace it so I am praying that the two antibiotic will work.

On a bright side, Jordan is doing extremely well. Grandpa and Grandma were impressed with his new stunts like rolling from tummy, holding his bottle and get giggle, seating down and he is talking so much! In short he doesn't look like he is sick or there's something wrong inside of his body. He is so active.

We are hoping tomorrow the blood culture they drew last Saturday will be negative. If its negative then we can go home this week but he will still continue to get antibiotics at home to clear well out the bacteria.

Anyway, we talked to our GI Dr. and we decided to go to UCLA for evaluation. We thought since its closer here in San Diego and we know that they have the best doctors and facility.

Fever!

2008-04-30T20:56:00.000-07:00

Jordan was admitted to the hospital yesterday because his temp was 101.09! It was higher than the last time he had fever two weeks ago. I phone Dr. Boamah and I was advised to take Jordan to the PICU East as soon as I can. I have a feeling that he might have an infection, he doesn't have any cold or caugh so theres a possible.
Today, our doctor says that the blood draw pre-result is showing a positive but will have to find the answer tomorrow after 42 hrs. Jordan is doing good and still a happy baby. Doesn't look like he's sick. He's on anti-biotic to stop any bacteria or virus. I think we might have to stay here for a couple more days.
We'll keep posted everyone. Please continue to pray for Jordan's recovery. Thankyou

7 months and we have so much plans for him.

2008-04-28T10:40:00.000-07:00

Jordan just turned 7th month old last Apr.19. We celebrated it with a dinner and a cheesecake (yummy). Each time we celebrate his birthdate month I thank God for his wonderful blessing that we have our son in our home. Although we are still adjusting in our daily life with him I still feel blessed and fortunate that he is doing good and growing big.

Our next plan for his treatment is to get him evaluated by one of the best transplant hospital in the US. One of the list we have are Nebraska Medical and UCLA Medical. Our insurance approved both of hospital and they're just waiting for us to decide which one we want to go. We talked to our GI Dr. Boamah about choosing the right one and asked her if she can help us, to be honest we are unsure of which hospital is the right and best for our son. Base on my research, Nebraska had done so many intestinal transplant and has the highest rate of survival. UCLA is the best hospital in the California and they are actively doing an intestinal transplant.

We will find out this week and hopefully we could start setting an appointment for evaluation. I am thankful that we have the best insurance for our son who help us so much.

March of Dimes

2008-04-26T23:51:00.000-07:00

Happy Day!

Getting ready to march

Ready get set go!

Ah what a beautiful day to go the park today...so went to our first March of Dimes in Balboa Park. George and I had been wanting to take Jordan to this park because it's really beautiful and finally we did. The weather is warm and sunny.
We decided to put Jordan in Bjorn so he could feel like he's walking too. A lot of mother and babies were there and we saw couple of parents from the Naval Medical NICU stuff, so happy that their babies are finally home with them.

Home finally!

2008-04-23T23:04:00.000-07:00

We finally learned how to use this blog and wait can't to share you all our everyday miracle with our son Leon Jordan. He has been home with us for almost 1 month & a half. Thankfully we adjusted very well and learned all the medical care he needed everyday plus with the help of our home care nurse makes our life little bit easier.

Leon Jordan is now 7 months, 11 lbs and 16 oz, 24 inches and his bilirubin level is 1!. We are proud to say that he is growing well mentally and physically, he is learning so much things like laying down and grab his two feet and move side to side (they say he might crawl soon). He loves to stand up and seat. So much to say but this makes us proud and excited, seeing our son growing and health!

We actually created an old website for him during our time in the hospital (5 months since birth). We wanted to move it here since we decided to use this as his main website, but I think it's better to keep the original. If you like to read the previous blog we did and learn some information regarding on his development and treatment he had previously please click or attach this...

www.leonjordan.multiply.com

Our Son

2007-10-27T11:28:00.000-07:00

My husband and I are very proud and excited to welcome our first son Leon Jordan A. Padin. Born Sept 19, 2007 (36wks) 4 lbs and 17 0z.

Our Birth Story.
My doctor scheduled to induce me on Oct. 1. Unfortunately, on Sept 18, 2007, during my third baby shower party, my contruction became stronger and thats when my husband and I decided to go to L&D, hoping I could ask for pain reliever or just to stop my labor.

Leon Jordan was born Sept. 19, 2007 by c-section. He weigh 4 lbs and 4 oz. and 17 inc. George and I are so excited and we coud'nt believe he's finally here. The first time I saw his face :) it was love at first sight.