Davin Turns 4- Happy Birthday

Yesterday, December 21st- Davin turned 4 years old!!!! Our outgoing, feisty, determined, video playing, energetic, cuddly, miracle child survived another year. He has been such a blessing in all our lives and has taught us so much. He definitely has focus and knows what he wants and is not afraid to tell us. We were so nervous the day he was born, all we wanted was to hold a healthy baby in our arms. As only in Davin style, he came out feet first and after his head was unstuck he definitely had some healthy lungs. That was a sound we thought we would never hear, and we have heard it over and over again! Davin loves his friends, family and of course video games. Although he is small he is fast and can be the most loving child we know. It is not uncommon for him to grab a strangers hand, sit in their laps and just strike up a conversation. So to our little Finn, we love you and are blessed you taught us that miracles can happen. Happy Birthday

You Say It's Your Birthday

Yes Ryan is TWO years old today. I can't believe that my baby is now a toddler- so fun. He is such a great kid and is our resident "bulldozer". His MD was very pleased with his continued growth. He is still off the charts for height but over 98% for weight and 94% for head. Yeah I know, feel sorry for us! We are going to start calling him gigantor. He is talking a lot more, however, if you ask him what his name is he will say "I'm baby". Only now has he been interested in a Binky and is fascinated with other babies. He thinks he is potty trained, and I guess in a way he is-- if you don't mind cleaning up messes here and there. I'm grateful he is still in his crib (it gives us a little more peace at night). However, since he is so big, he has to go to a toddler car seat which he can get out of easy. So guess what he is getting for his birthday. Today he has been all smiles, singing himself happy birthday to baby- everywhere we go. His grandma sent him a card with Spider man- Awesome- and then he spent several hours at Chuck E. Cheese with best friend Parker (and guests). Teaching him to be the center of attention might have it's down sides, but for today it is priceless. I'm so glad that we decided to not give up after Davin and had him in-spite of the risks. He has brought smiles to our faces, love to our hearts and faith to our souls! So happy birthday little fry, we love you!

Happy Birthday To Me

Yes, I'm 23 again! It has been a wonderful day, starting from getting a full night sleep to an uninterrupted bath. The icing on the cake was my friend Liz taking my kids for a couple of hours so I could go see Twilight by myself. It was awesome, thanks Liz! Then we had a great dinner and of course I was spoiled with gifts and food. So exciting, so fun. You know you are only 23 once (or twice or thrice or- OK I'll just stop now.) Thanks to all my family and friends for making today special! Thanks to my kids for the yummy cake. Yes you get to finish it all! Love You-

Medical Diaries

So I feel like all I have to say is medical. I really do have other things, however, not much. It is exciting that today and tomorrow there are no Md's, Hospitals or paperwork; now I can focus on Birthdays and Christmas. We had a wonderful Thanksgiving at Sari & Brett's with Trevor's side of the family. Sadly, my Aunt Delores (the aunt who was living with my parents) passed away Thanksgiving. She didn't look well at my grandfathers funeral and suffered from many organ problems. The funeral will be this Friday in my parents ward building. I feel so bad for my grandmother who in 10 days lost her husband and only sibling/twin sister. I don't know how anyone is holding up anymore.

We met with Dr. Osgethorpe the other day and he is excited to take the boys cases. He said that the boys are "famous" in his medical circle. Some Md's are frustrated they missed the diagnosis and others are just happy to know what the cause is. He also has encouraged us to look to the NIH for some answers and better understanding of the disease process. He is also not convinced that Davin's other problems are not related to TRAPS since there are not many diagnosed cases. There is a 50% chance that they have the HLA-B27 gene as well. So we will probably need several specialists in DC that can sort this all out. Trevor is felling better so hopefully they can blast the other stones before they start to pass and cause too much pain. He is sched. for next Wed.

Well I better go Christmas and Birthday stuff awaits. So much fun!!!!

Trevor's Surgery

Trevor had surgery today to remove a couple kidney stones that just weren't passing. They were able to get 4 stones, two were blasted very nicely, however, the other two had to be removed by the MD. Since there were some concerns with bleeding, they were not able to remove the two larger stones that are still in his kidney. Instead, they want him to come back in for a second procedure in a couple of weeks to remove them. He is still in a lot of pain from the stent they had to leave in. Hopefully he will be feeling better soon! Also, just wanted to wish everyone a very happy and safe thanksgiving.

Melting Popsicle and So Much More

This week has turned out very eventful. Sometimes I wonder if we will ever get back to "normal". Sunday, as we were leaving for church, we got the call that my Grandfather Taggart was very sick. We were able to be with him during his last couple of hours. He was a very strong man who loved his family and country. He will be missed.

On Monday Davin decided to "help" by putting the Popsicles back in the fridge instead of the freezer. My coveted all-fruit Popsicles at that. Also on Monday, Dr. Krantser's, who is the leading expert on TRAPS in the world, assistant called me about getting the boys into the NIH for research. So needless to say, more paperwork, Md's and research had to be done. In fact I didn't even notice the melting Popsicles in my perfectly groomed fridge until the sticky damage was done. YUMM. Tues I was back to the MD's and rushing to get pictures and paperwork in the mail. Wed we were at Primary Children's Hospital to meet with Gastroenterology. We did not get as many answers as we would have liked, just more blood work and "wait and see" answers. Basically I was told that potty training Davin should be one of the last things on my list since we don't know how to treat his condition. In the hospital Ryan had an accident so we rushed home instead of going to the Zoo. On the way home, you guessed it, Ryan threw-up. After cleaning him, I put him down for a nap, only to have him wake-up one hour later screaming. For the next two hours all I did was hold him with his feet to his chest. As he cried. Since we just got back from Gastroenterology, I didn't know who to call. An hour later he went to the bathroom and I noticed blood. After that he was fine. Let's just say, I was glad to go to Enrichment Night. Thanks Elodie for taking me!

Finally after I came home from Enrichment, Trevor asked what I needed. I said, "Sleep and some time with no medical issues". Well, true to his word, he gave me 7 hours before waking me up in incredible pain. When Trevor asked me to take him to the ER, I knew he was not kidding. So come to find out he has kidney stones. Since the biggest was 5mm they gave him a lot of pain meds and he is trying to work through the problem now. Luckily, Ryan seems to be feeling better today- just moody! So in the end, I guess the coveted-melting-Popsicles were not that big of a deal, however, one sounds good right about now!

24 Month and Counting

So today was the day I put Davin's pants on the last notch. This is a good thing because even though he is small, he still has height and 18 month pants are not cutting it anymore. Now he can hold up most 24 month pants with diapers on. This is a huge step for him. He can wear 3T tops because it doesn't matter how big around those are, he just needs height. I don't know what we are going to do when he is potty trained. Next week he is back at Primary children's to see Gastroenterology , so I'm hoping that they will have some practical answers. I think he is hypotonic as well as having TRAPS. Since he will be 4 next month and still showing issues we are hoping to get him the help he needs.

As far as the shots are going, it couldn't be better. I'm getting used to mixing the solutions, drawing, prepping and injecting my kids. The needles are small so it is not as bad as it could be. I honestly don't know how parents of diabetic kids do it day in and day out. 4 a week is enough for me.

I'm doing well, still VERY tired all the time. Luckily the pain is not bad, in part because I'm still quite numb from my surgery in May and I kind of know what to expect. My MD's said that they could not find any ovarian cancer so I am very excited. The survival rate of stage 3 ovarian cancer is 25% and I had a hard time wrapping my mind around that. The ovary was the size of a grapefruit and severely infected with some other concerns so they took it. They are 100% confident that they got all the uterine cancer and since the margins were clean I don't have to worry about it anymore. I also have not lost as much hair as I thought I would. Honestly I don't know how people do this.

Finally, to my surprise --- or maybe it was wishful thinking --- but Tyler and I do not have TRAPS. I was hoping it would explain the uterine cancer cells for me and Tyler's Autism, but I guess we will just keep those things separate. So our assumption is that Trevor has it, and I thought he was the healthy one! There has just been too many health issues in the last 4 years. I really feel like I should be getting a medical diploma right about now or at least some deep discounts!

So Thankful

I'm grateful for such great family and friends that have been so wonderful! I'm doing better, my fever is gone and all the blood work is looking better. The Md's still are not sure what happened but we are grateful that they ruled out complications from the surgery. Another day in the hospital was not fun and Tyler asked me if I can postpone any more surgeries until after the holidays (poor kids), but when I started spiking fevers over 104 a week after surgery, the doctors didn't want to take any chances. I have a couple more weeks until I'm back in full force (heaven help us) so I'm looking forward to a great holiday season. Again, I can't thank people enough. Beacuse of medications, I have had a really hard time staying awake and lifting my kids so I am grateful for every act of kindness. Thank You!!!

Not A Joke

As I was getting ready to be taken back into surgery, I got a phone call from the Davin and Ryan's specialist. We knew their medication would be expensive but this is ridiculous. The total cost for a months worth of medication is between $6,000-$7,000 for both. Our out of pocket will be around $1,300 every month. Yes that is thousands. I don't know how we are going to do it. I'm sure we will figure something out, it is just not the news you want right before going back to surgery. I started to cry and then told my mom "what am I going to do about it right now? I'm a little tied up at the moment". At least the good news is we are "maxed out" medically for the year so the insurance company can't charge us anything for the first 2-3 rounds of meds. Until then I will be looking for a better answer!

They Got It

You would think I was becoming a pro at this, but I guess I'm a slow learner. The surgery went really well and the pathology reports showed that they got all the cancer cells. They had to take everything except one ovary and they are hoping that it will kick into high gear so I don't have to do major hormones. They said that they filled me up with air and fluids to try and separate the organs and reduce the amount of cutting. This should take my recovery time down from 8 weeks to 4 weeks. I'm not in a lot of pain, just extremely tired and I feel like I have been punched in the stomach a lot. Thank you to everyone who has been helping. I was in the hospital for 3 days and at home I find myself so tired I can't wake up so I am grateful for everyone taking care of my home and children. I'm still having a couple of minor problems, but I'm sure as time goes on they will only get better. I just really wished they could of done this back in May. At least on the bright side, we might have a Christmas with no Hospitals or surgeries.

So Pathetic

Don't laugh, this is my view several times I day. Don't get me wrong, I understand that Ryan does not feel good most of the time, but holding a 32 lbs. child all day starts to wear on you. But really, could you say no to that face. Anyways I have been wanting to capture his pathetic face so I would have proof that he can manipulate me to the core.

On a side note the boys health is the same. We have completed their preliminary testing and now have to do base-line tests before we can start the Enbrel shots. We will be giving them shots 2 times a week (each) and re-evaluate their health at the end of 6 months to see if we have noticed any improvements. Luckily the Rheumatology department at Primary Children's are going to fight the insurance company about picking up some of the cost of this EXPENSIVE medication. Although, they have used Enbrel shots for lots of kids with JRA, Davin and Ryan will require twice the amount of other kids their age so we have to monitor them closely. It is an immuno-suppressive medication so we will be a little crazy about being around sick people, but hopefully the medication will work, their bodies will tolerate it well and their illness will go into remission soon. Of course with a rare disease, you never know what will happen so for now we are hoping this will bring a little normality to their lives. They are concerned about Davin's size, I guess his BMI is only 7% compared to Ryan's 100%. They are not sure why he is so small since there is no genetic predispositions and TRAPS is not known to cause waisting. We are interested to see if treatment will help him bulk up to a healthier size. Since there are less than 25 children right now with the disease, they are not sure if there is a correlation or not. I guess anything is possible right?

Orange County Register

My sister Holly and her family were featured on the front cover of the Orange County Register yesterday. Their story is amazing and I am proud of her speaking out against aborting terminally ill babies and letting women know that there are other options out there. This is quite a feat, especially in liberal Southern California. Love you Holly & Mike!

http://www.ocregister.com/articles/holly-aubrielle-michael-2185921-elise-baby

Happy Birthday

Just wanted to wish Trevor a happy birthday yesterday! We had so much fun celebrating! The boys went all out (at least in their own way) and they were very excited for dad to come home from work so the "party could begin". At any rate, Happy Birthday love, you are the best!

My Handy Man

Trevor can fix practically anything. Sometimes it is amazing to watch him fix something that I thought "there is no way". Of course, when possible, he finds a way. Most of the time he does a better job than the professionals. This weekend he has fixed my phone, SIM card, replaced the garbage disposal, took the old one apart, figured out part of the navigation system and has said he would fix the blanket basket and blind wand. I'm sure there is even more that he has fixed because let's face it, we do have three boys. Also in his spare time he has attended a gardening class and visited the teachers garden (where the gigantic watermelon came from) and has several ideas on how to fix our currently producing garden as well. If it is something mechanical, electronic or anything with an engineering component- I have no fear! My handy man has a beautiful mind.

Davin's Testing

We recieved the results for Davin's genetic testing. He is positive for TRAPS as well. We were not very surprised since it explains his recent 104 degree temperature and symptoms. It also explains a number of his health issues over his lifetime. We are going to meet with some specialists and try to sort out his issues. Since this disease is in every cell of the body, some of his issues differ from Ryan's so we might have to see different specialists and convince them that TRAPS really does exist. Some MD's have been supportive and some think we are inventing this. If I could invent anything it would be a super vitamin that is a "cure all" and sell it for three easy payments of $39.95. OK just kidding. At any rate, we feel bad for Davin, but are happy to know what is wrong. Hopefully we can find effective ways to help him be happy & healthy.

Congratulations Terra & Josh

Terra (Trevor's sister) and her husband Josh, had a healthy baby boy last night. He was 8 lbs 6 oz and 21 inches long. They named him Benjamin Huff. He was born via C-Section, but it sounds like it was the way to go. Both mom and baby are doing well. I just think he is adorable- Terra and Josh you do good work. We are so happy for you!!!!!

So My Child

Today I was taking advantage of some quite play time. However, as most moms with active children can attest, too much silence makes you wonder if everything is OK. After several minutes I went to go check on Davin. Of course the negative in me said "I wonder what he has broke", only to find him in the bathroom with the trash can in hand. I asked him what he was doing, he said "Chores, of course". What? Yes you read right! He was emptying the trash can, picking up toys and singing in the process. At that moment I thought, "He is SO my child". Now if I can get that gum out of his hair that he just put in (while I was blogging), then I might get some real down time today!!!! Here (or hair's) hoping.

Thanks to the Taylor's

I just wanted to thank the Taylors for taking our children and for the yummy dinner yesterday. It makes all the difference in the world to have friends, especially ones that support and care for one another. We are grateful for their continued friendship and example. Everything went well at the hospital yesterday and I should know next week the results of the biopsies. I feel that we have a couple more hurdles, but we should get some supportive answers soon. Also a big thanks to Trevor for taking the day off work to be by my side. Love you!

A Strange Answer To A Prayer

I feel like we have had to make so many big decisions lately, that I almost want to crawl under a rock. But life has a way of forcing us to decide. One decision was about Ryan's treatment. Last week the Md's said we should go right to a new medication for Ryan, but because it is experimental I was concerned. So I have been praying to know what to do. The Md's said that we could try steroids again and see if it has any effect since steroids have a lot less negative side effects than the shots. We were instructed to start the steroids when he had a flare-up and try it for 5 days. We were told that it would work within a day or two. So the next day he started with a flare-up, we started the medication and he seemed to only get worse, not better. At first I was frustrated, however, I soon realised that this was an answer. I know that no one wants their child to get "sicker" with treatment, but in this case, I needed to know for sure. AND I am grateful for the guidance we have been given. Now if I could come up with some winning lottery numbers so I could hire a maid, chef, nanny and personal trainer, then we would be in business! JK.

No More Junk Food

We met with the TRAPS "expert" here in Utah. I was very impressed by him. He is actually colleges with the MD that is the leading TRAPS expert in the world. There where some questions I had that he was going to ask him for us. Apparently there are about 100 cases in the world and most people come to the US for treatment at the NIH. There is also another little girl here who is a year older than Ryan that they have been treating. This gives me hope that he will not be such an experiment. Even though he is the youngest case right now, the shots we might do with him have been studied on kids with Juvenile RA. We are not sure how it will work for TRAPS, but we do know what type of side effects we will be dealing with. The bad news, Dr. Prahalad is moving to Atlanta in January. Yeah, I know, that is all we needed. He said we can come see him there or call him anytime, which is good news. I think once we find out how widespread this is in our family we will have to travel for treatment. Now on to explaining the "NO MORE JUNK" title. I think if I write it then I will be more compelled to follow through. I have decided to give up junk. I am going to stay away from sugar and highly processed foods. I know they cause all kinds of problems and are not helping my situation any. I found out this last week that I have a type of endometrial hyperplasia and they are concerned they didn't get it all with the ablation. So if cancer or abnormal cells come back, they will not know until it is upon me "like wild fire". It is looking like I will probably have another surgery this year, however, I'm not convinced these abnormal cells are not related to the TNF in TRAPS. So, next week I am scheduled for yet another procedure to see if inflammatory cells are in my colon as well. I think in the next couple of weeks I will know more about what I am up against. It still makes it hard to sleep at night, however, my gut tells me this is all related to TRAPS. I am so anxious to get my testing back now. So in the end, I am going to be careful about what I eat. I figure it is a pro-active thing I can do with no negative side effects. So any support I can get would be great! I'm not in the mood for cancer, chemo. or one more medical mystery. I need to sleep peacefully again.

Pre-School Has Started

So Davin started pre-school last week. He loves it! Not only does he get to go with friends but he gets his own backpack and homework. They go 2 days a week for a couple of hours. It has been fun having some one-on-one time with Ryan and know that Davin is well taken care of in the process. Also, Trevor had a business trip to LV. He seemed to have a good time, maybe it was all those restful nights? We are happy to have him home, goodies and all.

"I Win"

My favorite saying is "there is nothing more complicated than perception" and sometimes the best perception of all is in the minds of children. That is why I love this clip. Oh to have this type of clarity would be awesome. Enjoy

Mom, I'm not a little kid anymore

So it is happening, our little boy is growing up fast. Tyler has informed us he is no longer a "little kid". For example, Ryan was watching Wiggles and after Ryan left the room, Tyler asked us to turn it off because "it's for little kids". He also told us that Chuck E. Cheese is not a place he should go to anymore because of his age. He feels that when we go to "kid" places, he should just stay at home. I know that he still "needs" us, but this is the first day he has logically verbalized his ideas for independence. Since it wasn't accompanied by ranting, we know that he is not a teenager YET, but it hit me that although he will always be our baby, he is not a little kid anymore.

TRAPS Explained

We met with the Paediatric Infectious MD yesterday and were able to get a couple more questions answered. He is fairly confident, just by looking at him, that Davin has TRAPS as well, however, the testing takes 2 months to get back. We are also going to need to meet with the Genetics Department at the UofU. I'm not sure how many answers we are going to get from Md's since Ryan is one of three known cases in Utah. Most Md's that I have spoken with haven only read about TRAPS in literature. We were told that everything is experimental and that there is no cure since it is a genetic defect at the cellular level. All we can do is treat the symptoms. The good new is the type of mutation that he has is not the one that is known to cause death. His mutation is R121Q also called R92Q. He also had a heterozygositc polymorphic mutation on IVS4-33, which at this point no one is sure about. For those of you who are saying "what", don't worry, most Md's that we have spoken to have said the same thing. This is how it was explained to us. First forget the assumption that virus, fungus and bacteria make us physically sick, it is actually cytokines that our bodies produce in response that gives us symptoms. The most important cytokines are called TNF. The more abundant/long lasting TNF in your system the more inflammation and symptoms you have. Most cells are able to absorb these TNF, however, when you get sick the virus acts like a goalie and keeps the cell from absorbing these TNF. The TNF then sends a signal back to the body saying "we need more". So the body produces more until the virus is defeated and the cell can absorb the remaining TNF. While the TNF remain outside the cell, you get symptoms of the illness like inflammation, congestion, stomach upset, etc. It is the TNF's way of saying "let us in". Once the infection (or goalie) is defeated, then the cell can absorb the TNF and symptoms go away. That is why antibiotics work well for bacterial infections, it is because it kills the "goalie" and allows the TNFs to be absorbed again. The problem with Ryan is his body lacks the right gene sequence to let the TNF's into his cells in the first place. It is like he has a top rated goalie all the time- he doesn't need the help of a virus. Something as little as a cut could send the TNF's out of control because his body doesn't understand when to stop. So when Ryan appears sick with something contagious, he isn't. He just has the symptoms- fever, rash, stomach problems, swelling, gunk. Right now we are trying to understand how to treat his symptoms. We have to make major decisions of giving him injections with potentially dangerous side effects or let him push on through. Right now this is what we are trying to figure out. My gut tells me there are reasonable answers out there, it's just trying to find Md's and people willing to work with us. I also believe this is an under diagnosed disease and one day will not be considered as rare as it is today. If that is true, the more "popular" something becomes the more willing people are to help and the closer we come to answers with real value.

A crazy life and School

I know it sounds crazy but I had another surgery yesterday. Besides being a little tired, I am doing well. My mom took care of the kids all day yesterday and Trevor took today off of work so I could sleep. Thank you to both! Hopefully this is the last surgery for a while. I've decided that I don't handle morphine in IV's very well.

Also Tyler started school on Monday. He loves his class so far (yeah). He started the 5th grade at American Leadership Academy. They are starting a sports track in two weeks where he will play soccer, gymnastics and basketball throughout the year. He is excited to learn all about sports he didn't pick up in his "younger" years

True Genetic Mutants

Right now I'm flooded with emotions. Not sure if I'm happy to finally know what is wrong with Ryan (and probably the rest of us) or upset that it took this long to get a diagnosis or scared for what lies ahead. But, I do know that my prayers have been answered. It's funny that I got the answer long before the Md's. Kind of like "living on a prayer". I know most people thought I was nuts, but in the end the prompting I was given was right on (imagine that). So it turns out that Ryan has an extremely rare genetic disorder called TRAPS (Tumor Necrosis Factor Receptor-Associated Periodic Syndrome-TNFR1) also known as Familial Hibernian Fever. Apparently it is an autosomal dominate disease, which means this could explain all the "weird" medical issues our children have been having. At this point I don't know much more than what I have read in medical journals, but the specialist that he has been seeing is going to send us to other specialists who deal more with this type of disease. Since I just got the information this morning, I'm not sure what the next couple of months are going to be like. I'm sure they are going to want to check several things including the rest of us since it is an inherited disease. The infectious disease MD said that in the 3,000 cases that he has tested, only one other person has tested positive. This means he needs to check with the heads of other departments at Primary Children's to see where we need to go from here. At least we are getting closer to understanding how to treat our children when they get sick instead of throwing one medicine after another at them, hoping that the "problem" will go away. I'm very thankful for a wonderful Pediatrician who fought so hard for Ryan and loved him every step of the way. Without her we would still be wondering what we were doing wrong and possibly doing more harm than good. I mean we have plenty of years to mess him up, we didn't need to get it all in during his first two. Thank you Dr. Kendall and thank you to all our family and friend who supported us as well. I have been blessed by being friends with some of the "salt of the earth", who loved instead of judged and supported when we needed it the most. Thank you, Thank you, Thank you!!!
http://www.wrongdiagnosis.com/medical/hibernian_fever_familial.htm

Summer Fun

To Bug or Not To Bug

Our Summer Has Started

So I know that we are a little slow but our summer has started. We are having a lot of fun, carnivals, camp-outs, swimming, batting cages, miniature golf, visiting with family and friends. All this in just a week and half. Eventually I will upload the pictures if I'm not spending too much time eating bon-bons and taking long naps (yeah right!). At any rate it is nice to have a little break and spend time as a family.

Unexpected Answers

Last weekend we had a Howard Family Reunion. It was a lot of fun and busy, especially for Sari & Brett who had 26 people in their home. One night some of the sister-in-laws stayed up taking. The course of the conversation took many turns, however, one point we were talking about Brother Lund's book "Hearing the Voice of the Lord". I have to admit I haven't read all of it yet, but one thing became clear to me, I will explain. In the mist of all our recent unexpected troubles, has come a lot of unexpected answers. I will admit, the past couple of years has been very hard on me personally. There is so much that I don't understand and many days I am so exhausted just trying to keep things together it is hard to think straight. Some times I have spent so much energy trying to understand, I forget to listen to the answers that I have been given. Ryan has been spiking some high fevers, which is not unusual for him, however, post surgery it is not good. Fevers also bring his oxygen lower and since his oxygen was in the 80's while in the hospital, I knew that he would need to be re-admitted soon. While worrying about it, I felt I needed to put his name in the temple. I did and with-in hours his fever broke. He is not turning as blue as often and is smiling a lot more. I know there could be many logical reasons for all of this, however, I don't doubt for a second that the temple was instrumental in helping improve his situation. Now on to Tyler. His pain has been has been high and pain medications were not helping much. Most MD's that he has seen have not been very helpful. So I started researching and asking a lot of questions. Finally, I called some people I felt impressed to talk to. Through the course of these conversations we found a holistic cream that I could apply directly to his skin. My mother-in-law offered to ask some friends and put his name in the temple as well. Today is the first day he has not needed pain medications, the blisters are healing, his vision is improving and he has been awake all day. It is amazing how little unexpected answers can solve a lot of problems.

Ryan's Home & Tyler is not doing well

Ryan's surgery went well. He has some typical Ryan complications (and I am sure more to come), but we are home. He actually is doing much better out of the hospital than he was in. After he was able to stay off oxygen for a couple of hours we were allowed to walk the halls and that was all we did for the next 12 hours (all through the night- actually I did the walking and he was in the wagon). He was so non-compliant that I think they were happy to see him go. I was so busy just trying to take care of him that I didn't get any pictures. The only thing that caught us off guard was that he had to have his adenoids removed AGAIN. I know that 5% of cases they can grow back, I just was not expecting it to happen so fast. 2 adenoidectomy in less than a year seems a little crazy. Talk about crazy, I also rushed home because Tyler is not felling well. Apparently he has shingles on his face. He is in a lot of pain and has trouble seeing. I had the impression that something was not right, but people kept telling be their post-tonsillectomy stories and tried to reassure me that the pain was "normal". Unfortunately for Tyler, this extreme pain has little to do with his tonsils. I feel so bad for them. Every week there is another medical issue we have to work through. Right now we are trying to get through each day at a time with as little long term effects as possible. So far there are no blister on the cornea, just the inside of the eye. I guess blindness is only an issue if the blisters are on the actual cornea. So for now we are keeping a "eye" on him (HA HA). We also wanted to give a big thanks to Nana & Che Gunn for taking care of Davin so Trevor and I can take care of the rest. We appreciate the help!!!

Davin's Turn

Today was Davin's turn for surgery. He had oral surgery at the hospital. He is doing great and hasn't even missed a beat. This time he didn't yell or try to hit anyone at the hospital. In fact, he was quite polite. He made sure that all the nurses and anesthesiologist knew he had to go home but that THEY would be OK without him. What a difference from his last hospitalization (thank goodness). He is now at home and playing his new Dora Game Cube game he got for being such a big boy. Since they had to do root canals he might be a little sore, but other than that he thinks his 3 new silver teeth are great! The surgeon was able to fix the other cavities and seal the remaining teeth that had weak enamel so hopefully he won't need more work done for years. He is now our man of steel.

My X-Men

So we met with the pediatric infectious disease MD on Thursday. He went over all of Ryan's medical records and had some new ideas for us. Since there are so many variables, he is going to "round table" Ryan's case with the heads of the other pediatric departments at Primary Children's Hospital next week. One good news is that he feels his "infections" will not get worse and that his immune system is doing what it is supposed to do in response to infections. That is the good news. The bad news is we may never know what is wrong with the boys. He feels strongly that this is a genetic mutation- either cyclic neutropenia, Hiberian fever, pfapa or a ciliary dysfunction. We are going to do some testing so we will know how to treat him when he gets sick. He also told us that since it is probably a genetic mutation and not an immune function, he is not contagious when he presents with "cold symptoms" so there is no need to run the other way. After his surgery the MD said to take him out in public because he does not feel exposure to infection is the cause of the illnesses. So we are so excited that we don't have to live in fear of germs anymore. Hopefully this is one step closer to normality.

Happy Fathers Day

Happy Fathers Day to all the great dads, especially ours! To Trevor, thanks for being such a wonderful dad. You are the boys first exposure to a true "super hero". Able to leap tall buildings in a single bound (you know the ones made of blocks on the kitchen floor), you have X-ray vision (finding all the things Ryan loves to hide), you have super strength (just watch you break free from the pillow forts), you have mind control (able to convince the children that chores where their idea), you are able to fly into action (taking on projects and kids) and most importantly you have a strong moral compass that you children see and admire in you. Sure even your sand castles are artistic creations but the boys are by your side evey step of the way. We love you and hope your father's day weekend was well spent!

Tyler Is Doing Well

Tyler had his surgery yesterday and is doing well. The nurses said he was the perfect patient and the surgeon said his surgery couldn't have gone better. In all he was under for a little more than an hour and they were able to remove 4 moles and his tonsils/adenoids. The moles were a little deep so he has some stitches and a shaved head. Of course his brothers wanted their heads shaved as well. You know, they have to do what their cool brother is doing. Any who- right now we are just controlling his pain. He should be completely recovered in about 10 days, just in time for Davin's oral surgery. Oh joy!!!

Enjoy Life

Jen's Surgery- Update

Well I went ahead with my "big" surgery last Thursday. Today is the first day I haven't felt "out of it". Our house seems so quite with the boys in Wyoming (thanks Marda) and at times it is sad walking past their rooms and know they are not in them. It has been such a blessing to know that they are with their grandparent and having a great time in the process. Two weeks with all three is a lot! Also, Trevor has been such a wonderful support through-out everything and willing to take on tasks. I love you! However, I think he is kind of bummed that he didn't get to scrub in on the procedures. My mom has been here taking care of me- it has been nice but I actually feel a little guilty since her life is so busy. She actually didn't want to leave while I was in surgery (4.5 hours) and has waited on me hand and foot since. Also thanks to Elodie for visiting me in the hospital and bringing dinner. Some friends you just can't do without! I'm also glad that Candi worked in the Med/Surgery wing of the hospital. I came home with 4 catheters in my chest and 4 large drains through out my abdomen. When I called her, she was so sweet to come and change all the padding and help drain the tubes. Now I'm down to one drain, that I should get it out next week. The good news is once the swelling and healing takes place I will be a new woman once again. I'm so glad that I went with a plastic surgeon this time. He was able to fix the problems from my previous surgeries and feels confident that I should not have any more issues with my stomach and chest. He also believe my back problems should be more manageable from here on out. So here is to a fast recovery!

Look Close- Great Parenting in Action!

Ryan loves his bread. I guess when he says "I want that", next time I should listen. Anyways, I didn't realise that the knife was in sight but he sure did. I guess he thought that by sticking the knife in the bread he would get a piece. Good thing I caught him trying to cut the bread before something serious happened. Needless to say the knives are locked in a cabinet and bread is at his disposal now. Yes I know I deserve the mom of the year award!

Total Frustration

So the surgeon canceled Ryan's surgery (after weeks of planning, quarantine, caution) because he got Scarlet Fever on Monday. Even though he was discharged from the hospital in good health, his lungs sounded great and his blood work was good, they just were concerned- because of that one stupid strep test. We would never proceed if we thought there was any increased risk. It is frustrating because this is healthy for Ryan- - - As his MD said this is as good as he is going to get. Part of me just wanted to be over with and done with it. I'm tired of worrying about it and wondering if the surgery will "cure" some of the issues. I'm tired of all the illnesses, MD's, tests, research and not to mention seeing my children sick so often. I wish I had the answers. I would love for us to do more as a family, go to church together, start pre-school, worry about things such as weight loss, selling our house, where to go out to eat, if these jeans make my backside look big. I guess I'm just feeling a little overwhelmed and depressed right now. It's time to get out the Magic 8 ball again so we can plan our future.

And this too shall pass?

So life is still pretty crazy. Ryan ended getting Scarlet Fever again (2nd time this year). We tried for days to keep him out of the hospital, but he ended up needing to be admitted for an IV. It was amazing to see a different child emerge as he was given fluids. Thanks to his Grandma who offered to stay the night with him so I could get some sleep. By the time his bag and bolus were finished he was bouncing off the walls and ready to come home. Once his MD saw how well he was doing she discharged him. FYI-We are going ahead with Ryan's surgery tomorrow at Primary Children's. I will try to let everyone know how it is going. He is getting his tonsills out and they are biopsying his trachea and checking a couple of other things. We so hope that this will solve his recent health problems. As for Davin, he is doing better on this new antibiotic. His sinuses look better and is eye is not swelling shut anymore. He is still very moody and his nose keeps flaring so I'm not sure what is going on, but at least he is sleeping through the night again. Tyler is doing well. He is scheduled to get his tonsils/adenoids out June 24th. He has been felling down lately and tired of being sick so he is excited to get them out. The surgeon feels that taking them out will solve a lot of his problems. As for me, I got sick the night before my first surgery so we canceled it until I was feeling better. It was nice not to have to worry about Ryan while I was trying to recover. So the next couple of months are going to be a little crazy around here but in the end we are hoping that we will have health restored to our little family. We are so glad we took our family vacation when we did. Looking back on it, we took the vacation at the perfect time (minus current gas prices).

So Much Going ON!

There has been so much going on I haven't had time to sit down and write. For starters, my sister Heather and boyfriend Todd are engaged. I think the wedding is next spring. Congratulations! More great news-- Mike is graduating from Law School next week- Holly (my sister) will breath again once he is through with all the testing. I'm sure Elise will be excited to see her Dad more. Finally, Terra & Josh (Trevor's sister) are expecting a boy in September- we are sooooo excited. Also, Terra just graduated from USU last weekend. Talk about being busy! It was so much fun to get together. Especially being stuck in the elevator for 20 minutes. Sorry about that!

As for us, next week will start a two month- world wind of hospitals & surgeries. I will try to keep everyone updated. Ryan is having his surgery at Primary Children's Hospital on the 15th. We should be in the hospital for a couple of days and then it will take about two weeks for him to recover. It will help out with his current breathing problems. We are not excited about him going under again, but we know he has needed this.

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California Adventure

So we are back from one amazing trip to California. We all went, including Jessica Evans (our rent-a-daughter). We were able to spend a night with Dustin and Melanie in Hemet and meet up with them and cute Damon a couple of times during the week. Danaka, Johnny and Heather have never met Ryan so it was exciting for them to meet their nephew. Thanks to Danaka and Johnny for being so gracious hostess. We spent two days at the beach and tide pools. Tyler boogie-boarded and was awesome for his first try. We were also able to spend a lot of time with Cousin Elise and Aunt Holly- which is always a treat. Disneyland was sooooo much fun. We won some dream fast passes for the big rides and hardily waited in a line. Two days of walking, riding and eating junk in the beautiful California weather. Talk about being spoiled. Now it's back to reality- (or is it?)

April Fool's Day is Here

March was a fun month! We had a lot of great pictures, however, I was teaching someone how to take pictures and many were erased. Sorry, I know that everyone is sooooo disappointed. We had the leprechaun come on the 17th, went to the zoo, had an awesome Easter egg-extravaganza at Thanksgiving point thanks to Che and Nana Gunn, had a great Easter egg hunt and dinner with Ethan and family and spent a great day with Sonya & AC. We may have had a little too much fun- I guess someone has to have fun, right? Ryan now loves to bowl and he is very good at it. He got a strike and two spares. Taking turns is another story!
We are so excited that April is here. We have regular health insurance again! The boys have been battling one infection after another so it is nice not to have to see how long we can hold off running test and seeing doctors. Ryan & Tyler both have strep (second time this year) and Davin has croup & sinus infections (third time this year). We finally took everyone in today and got some more meds. Ryan's Pneumonia is getting better and now only in his bronchial. We will be doing some sugeries this summer and hopefully things will be a little more calm. I can hope right? The MD said Ryan has dropped a significant amount of weight and is now only in the 75 percentile. I laughed because 75 sounds much better than Davin's 3rd. Of course Ryan is still above 100 percentile for head and height. We are going to be running tests for ciliary disease and cyclic neutropenia. Hopefully we will find answers so the boys can have more of a childhood and less worries of illness. We have been very blessed with answers when we need them most and medications that have worked. I am so grateful for a husband that is able and willing to bless our children. I am indebted to a Heavenly Father who is aware of our concerns and blesses us daily. I don't know if everything happens because there is a lesson we have to learn, but I do know that there is an opportunity to learn through every experience we have. Sometimes I feel like I am a slow learner!

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The Gift of Laughter

We just finished watching a movie given to us by my parents called the Ultimate Gift. One of the gifts was the gift of laughter. So I thought I would pass along this little video clip. Hope it brings a smile to your face. (You might have to pause the music below first)

On a more serious note, a good friend of ours was in a construction accident and is paralyzed. He is in the hospital and luckily is surrounded by the gift of family. It is Brody's (Davin's friend who lives across the street) Dad- Mike Kemp. If you could remember him in your prayers we would appreciate it!

Intresting Howard Info

There is so much to a name, however, we seldom ever know the story behind it. Here is how we named our boys.

Tyler- since he was our first the sky was the limit. His name means "tile maker" and anyone who knows him can attest that his is an incredible builder. His dad actually had the last say in naming him since I was in hard labor for 29 hours. All I wanted was to have him, then there was so much turmoil surrounding his birth that the name was secondary. However, he is the one who started the building of our family.

Davin- his name is the most interesting. I actually wanted to name Tyler "Davin", but Trevor felt that Tyler was a better name for him. When I was 16 weeks pregnant we found our that Davin was a boy (everyone knows he is not shy!) Tyler wanted to name him, so I told him he could nick-name him instead. After a week of thinking he started to call him "Finn". We found this most curious, however, since we promised, we started to call him "Finn" as well. A couple of weeks before he was born, I told Trevor we were picking out a name before labor started. Trevor said he wanted a family name, however, I was still partial to Davin. We looked up what Davin meant "bright and lively" (should have seen that one coming). However, this is the most fascinating part, the nickname for Davin was "Finn". Talk about inspired! We have asked Tyler how he came up with "Finn" and he is not sure. Actually, this story gets more interesting. When Davin was one, we were looking though Trevor's genealogy book and found that he had a great-grandfather who died about 150 AD named Finn. So Davin was a name that was meant to be! If you are wondering if this is true, it is!

Ryan- after two boys, it became harder to find one we both liked. We thought of Lincoln, Ryker, Luke and many others. We still wanted a name with meaning but one that fit him. Ryan was a family name on both sides and one that we agreed on. Ryan means "little king" and I loved to say "Oh Ryan". However, it wasn't until after we named him that Tyler pointed out one interesting fact. If you take the second and last letters out of Tyler and Davin (y,r,a,n) and put them together you spell Ryan. Anyone who knows Ryan will tell you he is the perfect blend of his two brothers.

At any rate, that is how we came to naming our children. Hope you found it interesting as well!

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