CLUFF FAMILY NEWS

GYPSOMS!

2012-04-03T19:27:00.002-07:00

We went gypsom hunting. There is a huge hill full of them. It was so fun!

2012.... 3 months later

2012-03-27T14:20:00.002-07:00

So much catch-up I can't even try. I love, love, love my family. And I love that we are all healthy! JD has not been to the doctor since November when he turned 8. No more checkups til the summer. (Which is coming fast) Taylor loves dance and it is so fun to see her show me what she learned. I can't wait for her first recital! Too bad aunt Kelly can't teach her. :( She is the best. Jordan will soon begin pee-wee baseball. Excited for that too. JD just had his 1st pinewood derby. He and Josh worked on it together. He kept getting 2nd and last place. He quickly became upset. (He hates to lose.) I was up north and talked to him on the phone. I tried to explain it was most important to have fun. Right before his last race, he said a prayer and he won 1st place that time. He was soooo excited (an under-statement). He was pumping his fist with a joyous, "YESSS"! I wish I could have seen it. When Josh told me, I cried. Not just little tears. I couldn't stop. I am so proud of my kids. JD is such a special spirit. His faith is already so strong. He is a great example to me. I got to spend the weekend with girlfriends and do what I love: scrapbook stuff! I try to win anything and I did the dance competitions. Fri and Sat night. Lost both times. Next time I will have to bust out the worm. I had fun making a fool out of myself anyway. Then we headed to "The Hunger Games". Awesome! I really enjoyed it. I can't wait to see it with Josh!

WOW I LEFT THE BLOGGER WORLD

2011-12-05T14:45:00.001-08:00

I dont know where to begin. JD turned 8. We had a great Thanksgiving. And just last Saturday, JD was baptized by Josh. I am so proud of my little boy. He seems so grown-up to me. He was so happy and excited. He really surprised me. He is usually so shy he looks upset. Not on Saturday! He had to stand on stage with the other kids getting baptized. He was next to his good friend, Taylor. He was chewing gum, reading the words and singing! He didn't have his head down like I would expect him to do. I was such a proud momma! Jordan said to me, "JD isn't singing, he is just chewing his gum!" Jordan is very observant for a 5 year old. But JD was singing-while chewing his gum :)
After he was confirmed, I asked how he felt and he replied, "Really good!" He had a huge grin on his face and was literally jumping with joy. The next day was fast sunday. Testimonies were born. Josh rarely gets up in sacrament. He did. It was such a sweet testimony filled with faith and the spirit bearing witness. I could not go up. I was crying too hard. It would be impossible for me to go up and talk after hearing his sweet and tender words. He spoke of JD, the year we had and that without faith- we have nothing. It is so true. Faith is everything to us. Without it- we would fall to pieces. I love Josh so very much. I am grateful for his example and that he is such a wonderful father and husband.
I love my children and I am extremely proud of them.
For Thanksgiving, my mom asked everyone to tell her 3 things they are thankful for. and she put them on paper and baked them in rolls. So we opened the rolls and got to read and guess who said what they were thankful for. I asked my kids individually in this order. They did not hear each others answers.This is what my kids said:
Taylor (3)- Jesus, friends,baby sister???
JD (8)- People who found America, family on earth, Jesus for making our Earth
Jordan(5)- balloons, paint, toys
Some of these answers really surprised me! I am thankful for good health, (I have come to realize how important it is) My savior, and that I am able to be a mom and wife.

Legoland and Disneyland and SeaWorld, Oh My!

2011-09-09T12:49:00.000-07:00

The boys at Disneyland!

Taylor and Princess Belle. So sweet. She loved Belle.

Sooo much going on!

2011-08-19T14:09:00.000-07:00

My friend, Steph at Auburn Soul took these amazing pics. She is so great. We had an amazing trip in California. JD's wish came true and we have just been so blessed. I will post more when I have a second!

So happy

2011-06-13T08:52:00.000-07:00

Saturday JD had his PICC line removed. He thought the nurse was cleaning it and changing the bandage. I knew he would flip out if we told him they were taking it out. It scares him. As soon as she started cutting the stitches, he knew what she was doing. He asked me if she was taking it out and I said, "Ummm maybe!" And before he knew it, she had pulled it out. I told him to look, it was out. He looked and began to cry. Silly boy. He just gets worried. He later took the bandage off and put a band aid on. I didn't even know until I saw the band aid. He takes oral antibiotics- Amoxicillin. For 6 months he will have to take it! Just as a preventative. I am hoping he will stop fighting me to take it soon. He will just have to get use to it! We were very blessed to have our Stake pres. Pres. Bangerter come with Pres. Wilkinson (one of the Seventy) to come and visit us in our home. The spirit was so strong. They are very good men. Pres. Wilkinson blessed our home and our family. It was a great blessing. We have been strengthened by our trials and it was such an honor to have them in our home. This is the true church. Heavenly Father is mindful of us and loves us, wants the best for us. We need to put all our faith in him and we will be blessed more than we can imagine. I never would have thought we could endure what we did. We almost didn't. Because of the faith of prayers of hundreds of people, the love of our Lord and God.... We did. And we are all the stronger for it!

Milestones

2011-06-09T12:12:00.000-07:00

Yesterday marked the 3rd week of being home! It is so nice to be here amongst the chaos. :) This is the longest we have been home since January. Ahhh. No more docs waking us up at 5 or 6 am. I have a huge grin on my face. JD and everyone else does too. The outpouring of love and support is so amazing to us. People are always so thoughtful and we are still receiving things for JD. A sister in our ward made some big dogs from a patchwork material and a quilt. It is so sweet, the things people do for us and especially JD. My BFF Kelly did a fundraiser for us and she raised $1010.oo!! We are very blessed. I am speechless. Strangers have just poured out their hearts and donated and done anything they can. THANK YOU Kel. I love you. My dear friend Amanda, even though she has struggled herself this year; has been there helping every step and stumble of the way. She had her baby about 3 months early and she had to keep him in her bedroom for 3 months without even her other kids holding him. She had a hard labor and delivery, very hard; and she still was asking me how she could help. She was keeping up a blog, We Love JD. So that people could get updated with info. She brought dinners, gifts for JD, cards, etc.... Then to top it all off, during her trials of having her new baby get surgery for a double hernia- she puts together info and sends it to a local company to get fundraising set up for our family to go to Legoland! That is JD's wish. So the Wade Foundation will be setting up some fundraisers to raise enough money for us all to go to Legoland. THANKS Amanda. I don't know how you are able to do all that you do. You are amazing. JD has his PICC line he gets his antibiotics every 8 hours. So when he is off of the antibiotics is when I will be more of a worry wart. He has a check-up on the 23rd of this month. They will do another MRI and the ID docs will decide what to do next medication wise. He will probably do an oral antibiotic for a while rather than just stop. The day before his last day of school, JD got a fever and rash all over his stomach, back, legs and arms. He slept it off with Tylenol and they ended up switching his meds. He got two more rashes with this new medicine, but not for over a week now. Thank goodness! I don't know what that was all about, just glad he isn't getting rashes anymore. He is starting to see a therapist. He does really well. He is so strong and brave. I am very proud of him. Proud of my other 2 kids too. It has taken a toll on the whole family. The youngest are having a hard time with listening and minding, but we are trying to get that under control. They just have different personalities than JD. The other morning, Jordan was sitting on the couch with an old cell phone. I didn't even know he was awake. I asked who he was talking to, and he answered, "Michael Jackson." I laughed and said that's cool! He said Michael was in our house on a motorcycle. Come to find out he has a motorcycle with a guy on it and for some reason he thinks it looks like Michael Jackson. He is such a funny kid. He is always making us laugh. He looks so old with his haircut too. I cut it into a faux-hawk and he likes it. Jordan had SafetyTown last week and this week and today was finally the first time he didn't cry and I left him without him clinging to my leg with desperation. YAY! Of course it was the last day. His graduation is tomorrow. He gets anxiety. I was going crazy. I was ready to quit taking him and say FORGET IT. Now the one day of him going by himself and not crying made it all worth it. Taylor has switched from daddy's girl to mommy's princess. She LOVES me. Daddy tells her she is so pretty and she grunts and comes to me for a hug. LOL I love that stinkin cute lil girl. She can be a brat, but I will always love her no matter what. I am in Young Women's now and I love it. The girls are so excited and it helps me to want to be a better example. I am so very blessed. We live in a wonderful place full of amazing people who are like family. Our trials have made us stronger. I am grateful for that. The sweetheart that JD is always prays that nobody will be sick and that those that are will get better. He knows it isn't fun and doesn't want anybody to have to be sick! He will grow up and help others in some huge way, I should say while growing up too. He is already a great strength and example to others around him at such a young age!

Home again!

2011-05-21T11:19:00.000-07:00

Wednesday at noon we were able to drive home. It is so nice to be at home with ALL my kids and my sweet husband. It was a much easier drive with just JD than all 3 kids. JD was very excited to go home. I made him go to 45 min. of school on Friday. I am such a mean mom. The last day of school is on Wed. His friends in his class were so excited to see him there. It is so sweet to see. It brings tears to my eyes. JD was happy to be around his friends too. The nurses and doctors at Primary are so great. They make the hospital stay so much easier. Thanks for the constant prayers. We really feel that this will be the last time. Of course there are check ups, another MRI on the 23rd of June and we will see from there. The shunt should be fine. (Thank goodness). I think the eustachian tube was the key. I just wish it were found in January! So we are just trying to get back to normal. JD is on IV antibiotics at home for 2 weeks. His PICC line was clogged this morning. I was getting really nervous. We don't want to have to replace it! Luckily I was able to get it working again. (Maybe I will have to go to Nursing school :) ) He had his PICC bandage changed today. It is torture for him. He was a champ and did great. We are so proud of him and grateful to be home again. While in the hospital we found these awesome videos. Check them out. JD laughed harder than he has in MONTHS! Start with KID HISTORY episode one.

The latest

2011-05-14T12:09:00.000-07:00

We were walking around the hospital and we saw this lady carrying this tiger. We saw her twice. JD was commenting on it. Later she came to his room and gave it to JD. Lagoon donated it and they gave it to him! I am not sure how they knew where his room was. But he was very excited. He named him, Big Tiger.

One of the tests they did was taking fluid out of his neck with needles. They were unable to get very much out. We still don't know if it is spinal fluid (CSF), brain tissue or just body fluid. The tape on his nose and forehead is holding a string that goes into his nose. They put a cotton thing clear up there. They did another spinal tap and put a radioactive dye into his spinal fluid. Then he got scanned with a machine that takes pictures of all the radioactive stuff in his spine and then covering his brain. They have scanned it twice and will do it again tonight. He has to sit there for 30 minutes very still. He does really well. I would be claustrophobic. They have the machine inches from his face and he can't move for 12 minutes and then it is moved to the sides of his head. Last night he fell asleep. He was counting by twos to 100. I was glad he fell asleep. But then they pulled the string out of his nose, had to rip the tape off his face and that hurt him. He was really mad. We had to tie him down to the bed. He was trying to kick me. He was yelling and screaming. He felt bad after. When he gets mad like that, he is a totally different boy.

His Eustachian tube will be "stuffed" on tues or wed. Not sure what the Neurosurgeon will say. I feel we are back at square one without any answers. They tried to take CSF out of his shunt last Monday and they were not able to get any. They think he has a collapsed ventricle. I don't know if that means he needs a new shunt or if the ventricle will get better? Still wondering how the brain tissue or CSF got down in his neck since they didn't see it after surgery? Is it OK to stay there? So many questions still unanswered. We just don't want to go home and come back in two weeks again. It is so hard to have the "mystery" boy. Nobody knows what is going on. He has kidney stones and gall stones. They have not caused him pain. We hope they will stay where they are so he doesn't have to pass them. They changed his antibiotics since that is what was causing the stones.

JD has been having fun. He feels good and plays with his bouncy ball every day. He talks with the nurses and even played with a little girl yesterday. They were yelling, screaming and running up and down the halls. It was so great to see. It fills my heart with joy to see his smile and hear his laughter. He had so much fun he even said he wants to stay here. Now he says he doesn't want to! :)

I am sure we won't know anything new until Monday. The docs are gone for the weekend. Thanks for the love and support of everyone. We are so very blessed. We couldn't do it without our family, friends and especially our faith!

Facebook

2011-05-14T11:25:00.000-07:00

So many of you know that I vent and grieve and get support from family and friends on Facebook. It really is therapy for me. I am able to get my feelings out and I can see what is going on with other people. Helping me to get my mind off of things. Without service in the room, I don't talk or text much so I turn to friends on facebook. It is the easiest way to get information out to people too. So this is the story. An old "friend" from high school was new to facebook. He posted things about religion, particularly Mormons. I am fine with others having different beliefs, that is great. I just can't stand when people are negative and try to tear down others beliefs. He was posting videos, etc about how Mormons are wrong. So I got and and told about being positive, not negative. State your points or opinions without tearing others down. I got into it a lil bit about JD. How my faith and religion has helped me through these trials. Josh talked on another post from him where he stated, "Faith is a cop-out." Josh said in so many words, "Don't tell me faith is a cop-out! I am sitting here looking at my son laying in the hospital bed....Faith is the only thing keeping us together." Basically, we couldn't handle this without our faith. Then I got on and posted my opinion and how much we have been through. Then he sends me a video about being wrong. The "W" word. OK? I go to bed exhausted I was so mentally and spiritually exhausted that I felt like I had just worked out all day. And the next morning I see that he sent us a message. This is what it said. "Again, totally understand you are hurting right now. Really I do. I get reminded about it 6 times a day about blog updates and your comments on other peoples walls and your own walls...Just don't get why you would want to argue with an athiest at this time in your life??? Its like your setting yourself up to be hurt even more. Why would you even spend all this time on facebook talking about it every second you can? (seems like your beggin for more and more sympathy) Maybe you need it...i dunno... but maybe keep your whiny, I only have faith and hope anymore plea crys to your own page. People are starting to loose respect for you guys as you keep hyjacking other peoples pages, posts and threads to talk about your own problems. Guess what! Every has some type of garbage going on in their lives. Most people dont feel like they have to publish it on 3 different public forums though. Just being honest---" I was shocked to say the least. I could not believe the gall of this guy. Our high school friend sure had changed! I posted his comment, my reply and people were so mad. They went to his page and yelled at him and he had already blocked me, so I could not see his wall anymore. He blocked everyone that supported us on his wall too. Well, come to find out, somebody took his family picture from a blog or wife's facebook account and made up his own account under this guys name so he could get out all his anti-Mormon media he could. He changed the picture and his middle initial. I am sure he did this so he can't get shut down. He got reported, but since he changed the info, it probably won't change. People were ready to go and beat this guy up! I can't believe that others can and will do this. They must not realize how much impact it can have on so many people. Wow, that was a little craziness that took my mind off of JD's situation for a little bit. But it also made me stronger. It strengthened my faith. It made me realize there are more people out there concerned about JD and our family than I ever knew. For some reason, it made me feel closer to Josh too. So I got some good things out of it at least. It just goes to show, you don't always know who you are actually talking to!

Tays big day

2011-05-13T21:00:00.000-07:00

Grandma Cluff planned a party for Tay since her party at home had to be cancelled. I should say post-poned. We will have it later. She turned four the day JD got sick. So not a very good birthday for her. Grandma Cluff then came and played with JD so I could go to the party. Thanks Grandma! Grandma Martinez helped too. They brought the cotton candy machine and made cotton candy there. So fun! Taylor loved it.

Taylor opening her presents. She had so much fun. The girls dressed up as princesses. So pretty.

Checkin out the goodies!

This is the cake I made for her at home. Just a princess hat. They got to have a bite the day after her b-day. The rest was wasted. :( It was fun making it for her though. She seemed to really like it. That makes it all worth it.

#4.....

2011-05-09T16:19:00.000-07:00

Taylor turned 3 on the 3rd of May! It was fun to see her so excited about her big day. She has been talking about her b-day for months. I just wish we could go back in time and change the day. I took JD to school in the morning. I helped his class so I was there for a while. He told me his left side of his stomach hurt. It didn't seem too bad so I told him to tell me if it got worse. I went home and made Tay's cake and got a call that JD was not feeling well. I picked him up and he didn't look very good. I thought he was sad and tired and didn't want to stay. So I took him home and he slept for 2-3 hours. I was a little concerned. His head began hurting at school and it was alternating between his head and his side. Well at this point, I had the strong feeling we would be in the hospital very soon. At midnight he came to my room and told me that his head hurt really bad. He slept in bed with me. I gave him Tylenol and he slept until 4. I knew it was bad. Josh gave him a blessing. I was going to give him more Tylenol and then he threw up. He kept throwing up, was just dry heaving. He hadn't eaten since breakfast. I took him to the ER and they tried to get fluid from his shunt with a huge needle. They tried 3-4 times. They just poke the needle right into the top of his head. Luckily he was so tired and out of it he was not screaming. They didn't get very much fluid, mostly blood. They later had to do another lumbar puncture. He was admitted for Meningitis again. We found out the next day it was bacterial and we drove to Primary. Big mistake. I drove the three kids by myself. Stuck in traffic for an hour. JD was hurting really bad. He wasn't eating or drinking because we were going to get a PICC line when we got there. Right at the point where I was looking for my turn for the hospital, Jordan was choking on a toy. I was yelling at him for putting it in his mouth. He was yelling for water. Taylor had thrown his in the back. I couldn't pull over. I missed the turn. Jordan threw up (Luckily in a bag). Finally got to the hospital. Took JD in to get admitted and they weren't expecting us. I had to go to the ER. WHAT??? We should have been life flighted. I had the choice!! So we got there at 7pm and got into a room at 11pm. JD was hurting so bad. He still had his IV from St. George. They didn't give him anything for pain until after he threw up two times. The antibiotics were about 4 hours overdue. It was such a joke. I was furious. I don't think I have ever been so mad. So many little things going wrong, I can't begin to mention them all. I called Josh and just sobbed to him. I let so much emotion out that had been built up inside. It felt good to get it out. Josh was so mad he was ready to leave right then. I told him he needed to stay. I called my mom and she came over and it helped so much to have someone there. By this time, he finally had his meds for pain and was sleeping. We got to the room and JD's doc called from St. George to check on us. He is so nice! He had a 103 fever in the night and headaches. The next two days was mostly sleeping for JD. He hurt so much when he was awake. Then we found out that he had more fluid in his neck that wasn't there after surgery 3 weeks before. I also forgot to mention that he had kidney stones the day after we got home from his last surgery. He passed it in the hospital and found out that it is made from Rocephin build-up. So the antibiotics are causing stones. We now know that he also has gall stones. Most likely from the antibiotics too. They switched the meds so hopefully it won't happen again. He is finally feeling better. Awake, alert and playing and eating. He has lost more weight. :( He is underweight so any weight lost is not good. We finally got some news today on a plan. We have just been waiting around with all the docs telling us different things and it changes throughout the day. Nobody knows anything for sure. So frustrating! So the plan for now is to have the fluid drained from his neck on Thurs. He will be asleep and they will also to a dye in his spinal fluid through his spine so that they can see where it goes. He has air in his Eustachian tube that was stuffed 3 1/2 years ago in order to keep him from getting meningitis. That means there is some kind of leak if air is in there. They will stuff it again and then do the dye thing again to see where and if it comes out. That way we will know for sure if there is another leak besides his nose (Eustachian tube). If the fluid in his neck is infected, it means surgery. A very complicated one. We are praying very hard that there is not any infection there. They can drain it and treat with antibiotics if it is not infected. That will be the best scenario. Of course we pray for this to be the case. Thanks for the love and outpouring of support. Facebook is such therapy for me right now. I will post later about the FB incident. Thanks again for your love, support and prayers. It is humbling to know how many people care!

hmmm

2011-04-29T12:50:00.000-07:00

So we walked to the park. Taylor thought she had to push the stroller. She gave up on riding her trike. It was so funny. That stroller was not light and the wheels were a little flat, making it harder to push! She was groaning really loud!

This was his first day back to school. JD was not happy to go to school, but he gave me a smile anyway!

He likes to frown when I ask him to smile too!

This was Jordan's choice of outfit after church. He put his vest over the tank top. Silly kid. This was Easter Sunday. We went and flew a kite. It was really windy and started to rain. I was running home with all 3 kids on the stroller, the trike on top and on my cell phone. I am sure I was a sight to see.

This was after we drove from the Dixie hospital to Primary Children's. It was better to drive with the family than to fly the little plane with 2 ambulance rides just with JD!

Time really flies when you are NOT having fun...

2011-04-28T13:47:00.000-07:00

I wanted to be really good and update a lot about our family, life and especially JD. Well, that hasn't happened! So in the hospital, JD did pretty good for a few days and then he was just straight depressed. He never wanted to do anything. Not the new Wii game we bought him, not Legos, NOTHING! And then he went to bed late, was afraid to go to sleep and then would wake up all night long. He would try to sit up and begin crying and he didn't know why. He said he was just sad. He still had his drain in and we had to clamp it every time he moved and then level it again to make sure his spinal fluid didn't drain too fast or too slow. I think he would wake up and not know where he was at first. So I had to run to his bed and get him to lay down again. I know the long hospital stays had taken its toll. This made being in the hospital a thousand times harder than before. There were 2 days that he basically cried the whole day off and on. He is an emotional roller coaster. One minute he is happy and the next he is really sad and bored. The nurses and staff are really so great. This guy, Tony helped JD by talking with him and getting him some more Legos to build. He is great with having the kids try to express how they are feeling. Another problem was getting him to eat. He is so little in the first place. He lost weight and all the muscle he had. He is literally skin and bones. He barely tipped the scale at 38 1/2 pounds. Jordan is almost three years younger and weighs more than him. We are trying to bulk him up with cookies, chocolate, peanut butter (of course) and Pedia Sure choc milk. In the hospital, JD didn't have an appetite at all. He said "I think when they did surgery, it made me feel full all the time." It was a huge effort to get him to even eat one saltine cracker. He did like the microwave popcorn. He had that for all three meals most of the time. He didn't like anything the hospital made. We had to bring the cereal he likes, the milk, and got Little Cesar's pizza and bread sticks quite a few times. Anything to get him to eat. It was exhausting. Threatening him that he could never leave the hospital if he didn't eat. They had to draw blood I think and he was screaming bloody murder. They weren't able to get the blood from his PICC line this time so he had to get poked. His teenage neighbor next door felt sorry for him and brought over a turtle cookie and a Sunshine Carebear for him. It was so sweet of her. I cried like a baby. Her mom had tears too. That little girl got to go home that day. He mostly watched movies, played Legos and played the Wii everyday. They removed his drain and put his shunt in. It is a tube going from his brain to his stomach and it drains his spinal fluid. He was that indefinitely now. That recovery was harder than I expected. He had to stay 2 days more after the shunt. I was hoping to leave the day before, but he was in a lot of pain. His ventricles in his brain were not large enough, so the doctor had a hard time getting the shunt in. He did it though and we had another CT scan the next day to check the placement. He still has a little bruise on his neck from where they put it in. He was very sore for a while. Tamarah picked us up and we left the hospital and stayed at my grandma's house that night. Josh was at home for work. My mom drove us halfway to meet Josh. JD did really well. He was really tired. The next day was Saturday the 16th and JD had a kite festival to go to. We went to get his free kite for reading. He rode in the stroller with a blanket over him so people would not see him. He was afraid of all the people. Then we got to go see RIO. (Very cute movie) Our awesome insurance company and friend Ryan Bishop had rented out the room to watch the movie for free and we got fun prizes and gift cards. It was sweet! Then we went home and vegged out. So at 2 AM, JD came to our room and said his stomach hurt. I thought he had to go poop and couldn't. He went and it still hurt. He began throwing up. 4 times he threw up. He was in so much pain he said he wanted to throw up more because then it didn't hurt for a second. I knew his pain was really intense. We tried his Lortab after he threw up the first time and he obviously wasn't able to keep it down. I took him to the ER. We were there for 9 long and agonizing hours. Poor kid was begging to go to the docs. Once we got there he said, "I just want them to put me to sleep." He is use to going to sleep for surgery so he doesn't feel anything and that is all he wanted. :( They took forever to bring some Morphine for him. He was getting so mad as I would too. He kept asking, "What is taking the doctors so long?" I just wished I could take his pain away. (As any mother would) Long story short, he had Kidney stones and was admitted to the hospital. I had a little scare thinking that he would have to have surgery at Primary again for the stones. I was ready to punch somebody at that point. Well, really I was dumbfounded- speechless and almost emotionless. I knew I could not handle another stay at Primary. Not right now. So he was admitted here and only had to stay one night. He passed the stone in the hospital and it was pain free! :) Now he has started going back to school after lunch. We are starting with half-days for now. It has been rough for him but each day gets better. Today he showed his class his scars and talked about the hospital a little bit. He let the kids ask questions and I helped him answer them. He did really well. His teacher is going to have a hat day next week so all the kids will wear a hat in honor of JD. He loved that idea! I seriously love my family. Jordan and Taylor love their big brother. Taylor rubs his face or back and you can just see it in her face how much she loves him. Jordan shows it in his own silly ways. It is the best feeling to be at home with my kids surrounding me. JD is still not his normal happy self. We are getting him set up with a councilor. I am pretty sure that he has Post Traumatic Stress. It has been a long and hard year. I need to find out the best way to help him feel loved, happy, safe and most importantly, for him to love himself and realize what an impact and strength he is to our family and others out there as well. We have felt the love, prayers, thoughts, concern and faith from so many. Thank you is not enough. It means more to us than you will ever know.

JD's surgery in 2007

2011-04-04T17:28:00.000-07:00

You can click on the link below to see pics from JD's surgery in 2007. CLUFF FAMILY NEWS

He is doing better!

2011-04-04T15:55:00.000-07:00

JD was in ICU for one day and now we are in his room. He did so well. We are so grateful. We know it is because of all the thoughts and prayers for him and our family. He looked pretty good that first day and then the next day he got really swollen. His right eye was swollen shut and you couldn't even see his long eyelashes. It bothered him a lot. I felt really bad. But early this morning, He was able to open it a crack and it looks even better now! He has had one yogurt and maybe two chocolate milks since Thurs night. He finally got up today and walked from the toilet to the bed. He was hurting so much, but he did it! We are so proud of him. He barely moves at all. His head, stomach, legs, right hand all hurt. I feel so bad for him. I wish I could take it away. He has been through so much. The plan is to watch him, get his meningitis under control and then put a shunt in. It sounds like he will have this shunt in for a LONG time. What is a shunt? It is a drain under his skin that begins at his brain and ends in his tummy. It drains extra spinal fluid (CSF) . I have mixed emotions about him having it in for so long. But it will be for the best. We don't want any reoccurring leaks. He played the X-Box for the first time today and he has napped a lot too. I had the docs switch from Morphine to Tortol pain meds. He has weird nightmares on the Morphine. He did 3 1/2 years ago too. He sleeps much better now! I am glad there are choices out there. We tried Lortab 3 days ago, but that is by mouth and he just threw it up. He has nothing in his stomach, so he can't handle that yet. It is nice to see him starting to do things he enjoys again. JD has been taken care of (spoiled) by so many people! My friend, Denise came to visit with Legos for JD, and the sweetheart she is, came back a little while later and brought pillows, pillow cases, a sign that says "Bless the family gathered here" some flowers to brighten the room, a mattress, blankets, a Superman blanket for JD... She goes above and beyond. Thanks Nise! Josh came today with Bryson and I was able to go to the JCC to workout. It felt really good! I ran on Sun too, (I know it was the Sabbath) I needed to walk after 2 minutes. I am such a fatty outta shape girl! I can't believe how bad I am now. Sitting in the hospital this long is not good for a person who finds a release in eating food and I am too cheap to fork out the dough to buy healthier food. Plus chocolate just tastes so good!

update

2011-04-01T17:46:00.000-07:00

We are just waiting for JD to wake up. The docs are done and hopeful. Everything went better than they expected. No blood transfusion. They didn't have to remove his inner ear. They didn't have to take a piece of his skull from higher up on his head either. It is so nice to be done with this part of it. Thanks all for your thoughts and prayers. They help us more than you will ever know. He will be here for longer than a week. He has a lumbar drain, they have to keep that in for a week and then they will put in a shunt. So I am guessing we will be here for another 10-14 days. I am hopeful he will recover very fast!

Long awaited and dreaded surgery....

2011-04-01T14:12:00.000-07:00

What a week! We had appts in SLC last week. On the way there, JD and I hit black ice, slid off the road, spun around and went down the embankment backwards. We missed the sign by inches. We had to get towed and we were very late for his appts. We spent the weekend up north. I got to hang out with my friends and go to the Scrapbook expo on Fri and Sat. We got home sun evening. Monday morning, JD played video games for a bit and then came to me with a headache. He was nauseous too. I knew it wasn't good. I gave him Tylenol. He couldn't even sit up, the pain was so bad. Then I took him to the doctors office. I was crying on the way and when we got to the office JD was crying becuse his head hurt and I was sobbing because I couldn't believe this was happening again. I just kept rubbing his head while holding him in my arms and telling him, "It's ok, it's ok." They let us straight to a room. They drew blood, checked for strep, and other things. Strep was neg. He threw up there and again in the parking lot on the way to the car. Then I took him to the ER and he had a spinal tap. His spinal fluid was cloudy.... MENINGITIS. For the third freakin time. ARE YOU KIDDING? He took another ambulance ride to the hospital and was admitted. We were there until thurs morning. We left there and drove straight to Primary's. It is now Friday and we waited all day for him to go into surgery. He was really scared, but he was so brave. He was grabbing his chameleon and had his trick gum in the other hand. Offering a piece of gum to whoever came near. He tricked them all! He cracked a smile every time. It was a nice April fool's joke. Now we have to wait for the 5+ hour surgery. They will call us every hour and a half. They have to remove his whole inner ear. We just found out yesterday. It will throw his balance off for a few days and make him naseous. We hope that all works out fine, it sounds scary to us. We are really nervous. So much can happen. They are removing a fluid filled sac that is up against his facial nerve, so a million things could go wrong there. Just before they took JD back, the doc informs us that this might not fix everything. He may have to have more surgeries. He will have a shunt put in in a few days. Surgery is a risk because he has an infection, but they have to do it. There are just so many negative things that it is really really hard to stay positive. We have reached our limits. Our faith is being tried. My beliefs are still strong, I am just struggling to think of the positive in all of this. Josh is really having a hard time. He is wondering what he is suppose to learn from all of this. He has become more ornery and pessimistic. It is so wearing. He also has the stuggles of work to deal with. Things are not as great as they use to be with his job. Jordan and Taylor are having a hard time with not having a normal life this whole year. It is hard to see them go through this too. They miss their big brother. We all miss sleeping in our own beds too. We have the best support system ever. We are so greatful for all of our families and friends. We are thankful for our faith in the gospel. There is power in prayer. Our Bishop (Walker)and his first counciler (bro. Kimzey) gave him a blessing. Thanks for everything!

Just some more fun stuff...

2011-03-15T13:16:00.000-07:00

Kids were exhausted from four wheeling. This was after the first meningitis and before the second life flight!

Four wheeling!

She fell asleep with her snack and on the foot stool! I forgot about this picture when she fell asleep like this at my mom's house.

Can you find them? This is the new time out. Just kidding! They did this on their own. The new time out involves a belt, rope and tape! Ha Ha Ha

Just for fun

2011-03-15T13:06:00.000-07:00

Nana and Grandpa Cluff came over and we had a picnic. The kids loved it. It was a lot of fun. This is what Nana did with her kids when they were sick.

Taylor did a makeover on daddy. So pretty! Don't forget the ears! I always forget to make my ears look pretty!

She is still busy applying makeup on herself.

Having fun with tape. Silly kids.

My lil piggy!

Some Pictures

2011-03-15T12:50:00.000-07:00

These are the Legos we got for his BIG surgery that is now put on hold. This kid just can't get enough Legos!

He is flexing his muscles, look really hard and you might see them! Poor kid has zero percent body fat and a tiny bit of muscle. He is just skin and bones. :(

Here we are leaving the hospital. Doesn't he look so happy to leave? Well, he was mad at me. I took too long getting his meds and he lost his place on his game. It asked a multiplication problem. (He has never done times tables! He is in 1st grade!) So he was waiting for me and it turned off and he had to start over. Sorry bud!

DISNEY ON ICE. Jordan had to pee really bad! That is the face he is pulling. It was fun, but it was over too quick. I spent too much time taking kids potty and we tried to sit closer after intermission and we were in some other peoples seats, so embarrassing! We had to go back to the nose bleeds! Oh well. The kids had fun.

Taylor fell asleep standing up at my mom's house. I was laughing so hard! She was pooped.

My little missionary...

2011-03-09T11:49:00.000-08:00

While watching Letterman last night (we go to bed late at the hospital), Justin Bieber was on. JD asked me when he is going on his mission. I explained that he is not a member and will not go on a mission. He got sad and said, "But Jesus gave us life so we can go on a mission!" Then he later asked if Michael Jackson served a mission. I told him no. Then he asked why don't any famous people go on missions? Then he said, "I will teach them when I go on my mission. But, I will miss you and my family a lot." How sweet is he? He already has a strong testimony of our Savior and that He wants us to be happy. In each prayer he says, "I know that Jesus lives". He teaches me so much. Man I seriously LOVE this kid sooo much! Another thing... everything he is eating here is either filled with chocolate or a strawberry yogurt! Chocolate milk, choc chip pancakes, chocolate chip cookies... these are his fave! He takes after me. :D

GOING HOME (more or less)

2011-03-09T11:10:00.000-08:00

JD has the ok to go home. We are sooo happy! His spinal tap went well yesterday. They got the fluid and his white blood cells are down from 300 to 36 (or so). So that is great! We will continue antibiotics at home, through his PICC line. He also has lactobacillus probiotic. To mix with yogurt and eat. That helps give him the good bacteria he needs. Then he has Flagyll to take by mouth every 8 hours? He hates that. It will be a battle every time. But I don't care as long as we aren't here! He is doing very well. Uncle Bryson came with Gram and Gramp Cluff yesterday and he just lit up! He doesn't get excited to see anybody but Bryson. It is so cute. He loved playing Legos with Bryson. He told me I could leave and Bryson could stay. That is HUGE! Even when Josh stayed with him he called me a couple times crying that he missed me and was scared. We have to come back in 2 weeks to do a check-up for his appendicitis. Then in another 2 weeks or so, we will have the brain surgery. We are praying with all our might that he will stay healthy until then! Anyone know of a good BUBBLE we can use to put him in! With Josh's drive, it only took 10 HOURS for him to drive home. Two semis jack-knifed and the roads were at a stand still for hours. Poor guy. What a couple of weeks. WOWZA! Thanks for the thoughts prayers and strength. We can't express our gratitude enough.

Just another day

2011-03-07T22:08:00.000-08:00

The morning started out with a spinal tap, or LP. They put a needle in his spine while he's lying down in a fetal position and extract spinal fluid from his spinal area. They test this fluid for different things, the main ones being infection and white blood counts. But, they were not able to get any fluid for whatever reason. Fortunately he was asleep (sedated). They tried three times and couldn't do it, so they have to try tomorrow with fluoroscope, to see where the needle is. I am sure thy will get it then. The bad part is, this adds another day here at ol' Primary Children's. The nurses and docs are great, some of the best. But it still really sucks to be in the hospital this long. I have to keep my chin up though. Cancer is so much worse. That would be harder to deal with. They are in and out of here so much for years and years. We are truly blessed. The days go by fast, slow and all get mixed together. Tomorrow will be 11 days in the hospital. If it were only appendicitis, it would probably be a week max. I knew this would happen, he was dying of thirst and starving to death and now that he can eat and drink, I am back to forcing him to take bites and drinks now. So- that is the way life goes! JD just has to throw curve balls everywhere he goes. He has been so patient and strong. Right now there is a little boy screaming next door. It is almost midnight. JD is asleep. It could be worse! We can't thank you all enough for the love and support you have and continue to show us. My facebook postings and blogging is keeping me sane. It is a good release. Now if I could just get my butt to the gym! I think I inhaled 5000 calories today. I am a really bad stressful eater and when I just sit around here all day, that is what I end up doing. It really sucks. I am gonna be 20 lbs heavier by the time we finally get home. Man that sucks! And I have to mention that Josh drove home tonight in the blizzard and got stuck for over 3 hours on I15, with nowhere to go. He is still driving. I wish he woulda stayed here! Not fun.

Saltines, yuuummy!

2011-03-06T11:27:00.000-08:00

JD started with a spoonful of ice chips every hour. This was two days ago. He was watching the clock and made sure we gave on the hour every hour up until eleven at night. Then yesterday he was allowed one ounce of water every hour. Today he is allowed sprite and saltines. He is a happy boy now! He is so funny. He has to smell each cracker before he eats it. He likes the smell of them and has to taste it with his nose first, I guess! He has had 8 crackers, half a can of sprite and is doing great. Who would have thought saltines would be so filling and such an exciting treat? He is still looking forward to eating oreos, pizza, m&m's and peanuts, but we will work up to that. His stomach has been asleep, so we have to slowly work up to it. He might be able to leave here on Tues! We are so excited and proud of our little guy. Our friends, the Wittwer's came to visit today. They brought him a cool Lego Hero Factory guy. They were in town and made a trip to visit. Thanks Danny and Jill! The infectious disease doctor is very surprised at how well JD is doing. I think it is because of the many prayers going out to him. Thanks everyone for all you do for us. Kristy watched JD for us so Josh and I could go on a date. We went to see "The Adjustment Bureau" with my cuz Boon and his wife. It was really good to get out. Mitzi watched the other kids and she is sick too. Thanks girls!