Care For Christian.com

I am so happy to report that Christian is doing well. He graduated from elementary school on June 16th and it was a lovely event. Christian got a standing ovation and there were many tears of joy. That Saturday he participated in his 2nd Torch Run for the JJCCC through Miller Children’s Hospital. I spent last year wondering if my son was going to die. Now a year and  half later, he’ s recovering and thriving from this whole ordeal. Dr.’s at UCLA are very pleased to see him responding so well to the transplant. They are continuing to reduce his medications which makes Christian (and us) very happy. He is enjoying his summer vacation and looking forward to returning to school. Things are great right now and we are looking forward to the 4th of July. 

Ismael has started the SOAR program for his new (can’t believe I’m going to say it) High School. My first born is growing so fast and I’m very proud of the young man he is becoming. I am so grateful to him because he was my right hand when Christian and my Mom were at UCLA. He was always willing to help me care for his sisters and pick up around the house without complaining.

Noah got his “Perfect Attendance Award” for the 3rd year in a row. With Christian’s condition, I know it was even harder for Noah not to miss a day, especially when Christian would be home after being hospitalized for weeks at a time. Isabella is a bubble of joy. She’s strong, loving, and bossy. Victoria is 11months now, has to bottom teeth and is a big, precious and healthy baby girl.

Yes all our children have made great accomplishments and we are very proud of them all.

 Victoria is teething and has been fussy lately, so I have to go now.

Today our oldest son Ismael graduated from Junior High. Funny, that on Wednesday someone asked if Ismaelito was my little brother. I can’t believe how the years have flown by but I thank God for granting me the gift of being a Mom and living these moments. It was also 6 months ago today that Christian got his transplant.  Now that Christian can eat at restaurants,  we went to Domninck’s for dinner. As we were gathered around the table, talking and laughing, I looked at my family and felt so blessed to be where we are right now. I remember how my husband and I agonized when Christian was at UCLA  and how I would literally drive in the middle of the night to and from the hospital because I couldn’t handle not seeing him daily.

We didn’t think that 6 months after all that emotional anguish and fear, we’d be where we are now.

Okay, I’m going to stop for now, because I get so emotional thinking about all we’ve endured and how far we’ve come, but know this…our family is very happy and thankful to the Lord our God. 

We got such great news at Christian’s clinic appointment today. He got 1 1/2 medicines taken away, so he’s on even less medication which he loves. Christian has maintained his weight and does not need the NG feeding tube. He is now off the Low Bacteria Diet. I wish you could have seen the look on his face when Christian was told he could eat at a restaurant. In celebration we went straight to Mc Donald’s. He savored and enjoyed every bite. When he was done he told me it was well worth the wait. The Dr. told me Christian is responding  fabulously to the transplant.

We are also very happy that Ismael Jr. is graduaing from Junior High this Friday. 

Today I told my Mom that I didn’t think everything we’ve been through would start to feel like a distant memory so soon.  At least it feels like time has gone by fast. I know it was God speeding up time for us so we could get through it all. I met a little boy at a  friends baby shower on Saturday with Leukemia. He was diagnosed just 2 weeks before Christian and he has to have chemo once a month for the next 3 years. I told Christian and he feels about the boy suffering with nausea for all that time. I can’t imagine going through this for 3 more years. I do feel that we are so blessed.

Things are looking good for our family, so please continue to pray for his full recovery.

I am sorry it’s been so long since the last update. I know many of you check this site often and we thank you so much that. I found that often times when I would post about Christian feeling great, there would be a bump in the road and he’d get sick. Now that more than a month has gone by, I feel comfortable telling you that Christian has been great. He has not needed a transfusion of any kind in almost a month. This is fabulous, because it means his body is producing on it’s own.  He is feeling a little stronger and happier everyday. He’s being silly and even getting into trouble again. :o) This is so good because it’s really hard watching him lay in bed all day too weak to get up.

On Monday May 18, 2009 we got the good news that Christian was accepted to the Jr.High he had been hoping to attend. There is a great posibility that he’ll return to school this September. This news has fueled much improvement in his studies too. On Thursday he moved his teacher to tears when she read his homework assignment. He went from writing one sentence to writing a four page detailed story. He later told me, “I like when everyone is proud of me”. I told him he had no idea how proud of him we are. His Dad told him, “We’re always proud of you”. 

A few weeks ago Christian’s weight was a big issue because he went from weighing 60lbs to 54lbs. He was losing 2lbs a week and he would not eat. The doctors seriously considered putting the NG feeding tube in, but because he can’t stand “that thing” Christian PROMISED he would eat. I must say that he has definitely kept his promise and then some. Last week he gained 3lbs in one week. Things are looking good for him right now. Please continue to pray for our son.

I want to start out by inviting you all to see the video of this extraordinary family, that we are proud and privileged to call friends.  Meet The Litton’s

Bone Marrow Donor Activists Host ‘Rebirth-day’ In Honor Of Their Daughter, Jillian - cbs2.com

They are such a kind, generous and giving family. We love them and plan to be there on Saturday supporting them. If you can, please come out and show your support.

Christian is getting platelet and blood transfusions every week. He is now off that I.V. medicine Gancyclovir. HOOORRRAAAAAY!He began to sneeze quite a bit on Friday, but he seems to have stopped. Yesterday uncle Adrian and Minerva came to visit from Las Vegas with their 2 month old baby girl Emma. Isabella was so excited to have a little baby in the house, she didn’t know what to with herself. She kept offering Emma all her toys and wouldn’t stop ”chattering” saying “Emma, Emma look at my toys. “You want to play with them? Here you can play with them”. Victoria was also very excited, she smiled and laughed the whole time. Christian got to hold Emma and was very excited too.

Victoria Grace finally started to take steps forward in her walker on April 13, 2009. She’s barely beginning to show signs of crawling, but now says “Da Da”. Go figure, I’m with her all day, up during the night, yet she learns call her Daddy first. That’s gratitude for ya! LOL  Today Victoria  turned 9 months old. She is so BIG, such a happy baby that doesn’t cry when “strangers” hold her. It’s truly a testament to God’s greatness. I can honestly say hers was the worst pregnancy of all, because of the emotional stress, anguish and constant fear that my little boy was going to die. Being pregnant only heightened all those emotions. Looking at Victoria’s sweet smiling face now, you’d never know the strenuous 9 months she endured in my womb. Victoria knows all her brothers and Bella very well now. When Ismael and Noah talk to her, she smiles and gets all excited. When Bella comes around Victoria cracks up. But when she sees Christian, she stares at him for a long time and then gives him this gentle, little smile as a reminder that they are one. It’s amazing and she does it all the time.

Funny thing is that after I had Noah, I constantly said I didn’t want anymore children. My husband really wanted  girl. Well… 5 years later I got pregnant. 8 weeks into my pregnancy, I got very ill, was hospitalized and miscarried. I was quick to tell my husband that we were not meant to have anymore children and he should be as okay with it as I was. I tried to convince my husband that a Vasectomy was the “right thing” for us. Reluctantly he scheduled an appointment and we went for a consultation. 3 days after that consultation in May of 2005 I found out I was pregnant with Bella. In February 2007, I got pregnant again and in April 2007 I suffered my 2nd miscarriage. To our surprise in November 2007, I got pregnant yet again. This was our Victoria Grace. If my husband had gone ahead with procedure in 2005, Bella & Victoria would not be here today. Most importantly Christian would not have gotten the life saving stem cells he needed for his 2nd shot at life. This is why I never questioned why I lost the ones I did,  or why I have five. I believe that God knows what is and when it’s right for me. Many people ask if I’m “done” or if I’ll have more? To that I say “Only God Knows”.

Things have been pretty good lately. Last week Christian went to clinic, got a blood transfusion on Tuesday and a platelet transfusion on Thursday. When Christian’s teacher came last week, we learned that Christian is having a really hard time seeing the words in the text book. He says it’s all blurry for him. There’s an appointment scheduled for him in May to have his vision checked. I can only imagine how over whelming it is for him to be going through all these drastic changes almost at once. For one his hearing loss, he had another hearing test done on Monday 4/13/09 and he has 50-60% total hearing loss. His skin is still  Ms. Espinosa might be coming today, but for sure tomorrow.

This  morning I had to take Christian to Miller’s, because he felt very weak. I told him getting a blood transfusion would give him the energy and strength he needs to decorate and hunt for Easter eggs and he agreed. While I was dressing him, I asked if he wanted his wheelchair. He said he wanted to walk, and that didn’t go over so well.  The clinic is on the 2nd floor and he struggled to make it up the stairs and collapsed when he got to the top. He was not hurt, but all that effort brought on the nausea and he had to throw up. I had to carry him to the car after that. Tomorrow he’ll get his much needed blood transfusion at 11am at Miller Children’s.

 Christian seems eager to learn and work now that his home school teacher comes over three times a week. He really likes her and that motivates him to try a little bit harder.

Yesterday Christian had his friend Derek come over. They played video games and watched the movie “Bedtime Stories”. Even though half way through the day he felt tired and fell asleep, he said he was glad his friend could come over. Derek is such a sweet and understanding boy. Christian slept for about 2 hours and Derek waited patiently, playing with Noah til Christian woke up.

 Today was clinic day for Christian. He was low on platelets and borderline on blood. He got the platelet transfusion, but the Dr. wanted to hold off on the blood, because he says blood transfusions too often will make his body produce it’s own blood cells slower.  Dr. said he might need a transfusion by the end of the week since he’s feeling weak and tired. The Doctors expressed concern about his severely dry skin. He is still suffering the effects from the radiation that basically fried his little body. His whole body feels sunburned and his skin is peeling. This is painful for him and we have to be careful how we touch him. 

He is really looking forward to Easter this year. For those of you who were not with us last year, we had to celebrate it days before, because he was going to be inpatient getting chemo on Easter. He says he wants to decorate eggs and have an egg hunt. We are looking forward to watching the kids enjoy this wonderful day.

I almost forgot. I took Victoria for her 1st Easter pictures with a live bunny. I did it with Bella for her first and second Easter, so I felt like I had to do the same for Victoria. To my and the photographer’s surprise, she was totally un afraid of the bunny. The bad thing was, she kept trying to grab it and smack it. She slaps things and people when she gets excited (so I call her the “Slappy Slapper”). I know it’s silly, but I am always making up goofy names for my kids. Well back to the story.  The photographer put the bunny on a tree stump prop and the bunny jumped off twice trying to get away from my little Victoria the ”Bunny Basher”. On the third try, in the blink of eye Victoria grabbed the bunny and pulled it down off the stump and onto the posing board next to her. Needless to say the session ended after that.  I was able to get a couple of pictures.

*DISCLAIMER*  For those that don’t know Victoria is only 8 months olds. I would never allow or encourage my children to hurt any animals. LOL

If I haven’t shared it before, I’ll share it now.

It’s so amazing to see how the little everyday things that can sometimes be over looked, now mean the world to us. I was over joyed to see Christian walk into our bedroom at 8:15 this morning. He came in dressed and said he had taken a shower by himself. This is HUGE! I can’t remember the last time I, my Mom or husband didn’t have to bathe him. He’d be shivering, moaning and crying, because rubbing soap over his weak body and the water that came down from the shower head hurt him. Today he did it himself. He has spent most of the day playing his new video game.

In other news, I am asking everyone to please click on the link below and help sponsor our brave little fighter. I know that times are tough right now. Just know that together we can make a difference and ANY and EVERY little bit helps. Christian is very excited about participating in the Torch Run this year, and often asks if he’s close to meeting his goal.

http://event.lbmmcf.org/netcommunity/christiankhernandez

Thank you

This past week went well. Christian went to his clinic appointment at UCLA on Tuesday and got his dose of I.V.I.G., Gancyclovir, platelets and blood. He had been so weak, but felt much better after. His new home school teacher came for the first time this week. Christian says he likes her. Ismaelito and Bella went to Mexicali with my parents, Noah is going bowling with his cousin Danny for his birthday. Christian, Victoria and I are going to watch the “Kids Choice Awards” together. My husband got called out to work, but hopefully he’ll be home soon.