Home!

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. 

Back to PICU

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

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

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

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!!!

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!!!

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!!!

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

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.