They are growing up

It hit me today that they boys are really growing up. Tyler is over 5 feet tall, Davin is completely potty trained and Ryan is speaking in full sentences. Next year Tyler will be in Jr.High, Davin in kindergarten and Ryan in pre-school. To be totally honest, the baby phase was not really my thing. Don't get me wrong, I love babies, I just don't want them to be mine 24/7. I really enjoy the more self sufficient child that can tell me what they want- even if it includes the word no now and again.

I'm Drowning

OK so I'm not really drowning, but it sure has felt like there is not enough hours in a day!!! This is why it has taken me so long to post. The kids and I were able to go to the Navajo reservation in New Mexico and visit some of our dearest friends. We were able to take all the generous donations to their school to help those families with supplies. Thank you to everyone who gave of yourselves. It was so appreciated. It was such a wonderful experience, the only regret is that Trevor was not able to come with us. I also started my new job this week, and all I can say is the training is the most intense training I have ever been in. It is fascinating and I'm sure once I get the hang of it, I will be easier. We have one month of full time in class room training then two months of dispatch training. Then 6 months of probationary training until we are able to move to the level 1 position. They teach us to speak in codes and manage, multiple phones- 3 computer screens- several radio channels- two keyboards and multiple agencies/cities at the same time. I had no idea it was this intense. I am so grateful to my mom and friends who have helped me with the kids. It has been hard for me to not be in contact with them whenever they need me. You know the "poof what do you need, poof what do you need" scenario. Anyways Trevor and the boys are surviving and Tyler is doing a great job taking on more responsibilities around the house. At any rate, things will get better once I learn to swim!

National Institute of Health

So we just received word that Dr. Kastner and Dr. Holland want to see the boys at the Fever Clinic at the NIH the beginning of next year. We hope that this will give us some more detailed information on how to manage their disease. We have taken them off the Enbrel shots and both boys are now on Septra to bring down their T-cells and hopefully pull their immune systems back in line. Also, we think that Davin can build white blood cells to immunizations. So far the data is not conclusive, however, we think that he just might require more immunizations to get his titers to a protective level. We will find out in a month if it works. Hopefully he will not need a surgical port and monthly IVIG treatments. Right now we are hopeful that he will be able to attend school in the next year or two without issues. At any rate this is all good news:)

Processed Foods

Our one child who has re-defined the food guide pyramid to include chocolate, sugar, over-processed, over-refined and microwavable. Seriously how he can get as big as he is and insist on the food he does is beyond us. Our other children love their fruits, veggies and homemade foods. This one, well let's just say the more processed the better. Good thing we love him:)

Chasing Rainbows

A couple nights ago, Davin and I were out shopping when a fairly large storm hit. After 20 minutes of heavy rain, there was enough of a break to make it to the car. As I was loading up the car, Davin noticed a large rainbow that looked close to us. In his excitement he said we should go find the end of the rainbow. I figured, it wouldn't hurt. So off we went chasing the rainbow. As we crossed a main intersection, Davin noticed that the rainbow appeared to be touching the top of a book store building. He insisted that we stop and go in to investigate. No sooner was he out of his car seat than was in the store. He went running in saying "there is a rainbow in your store, a rainbow" then insisted on finding it. As I explained what was going on to the nice clerks, Davin started yelling "I found the rainbow". I thought to myself, kidding me? Next thing I know. He found a Noah Ark book that really looked like a rainbow was actually caught in the book. So excited, he asked the clerks if he could buy the book or if they needed to have the rainbow in the store. Of course they told him he could buy it, so I pulled out a gift card to that particular store that I won a couple days prior. Amazingly, it was for the exact amount. So to make a long story short, we are now the proud owners of a rainbow that we found. I guess it is out little pot of gold.

Davin's Drama

OK no surprise that Davin has health issues. I just feel so bad for him quite often. The current thought is that his allergies are exacterbating his TRAPS which in turn is causing recurrent sinus infections. Although we have treated his allergies aggressively, the Md's seem to think that even the slightest allergen will cause his other symptoms to flare. His eyes look like he has cataracts, but it is actually inflammation of the eye. When it covers a lot, he has difficulties seeing, but once the inflammation goes down he can see better. He still is sensitive to light so I bought him some sunglasses today with hopes that he will spend less time hiding out in the house or in doors. For now we are adding two more medications that will hopefully help him get over this hump.

Garden Harvest

Trevor and Tyler deffinately have green thumbs. We have been enjoying the "fruit" of their labors. It has been something that the boys have enjoyed taking a part of. They actually love the eat the veggies from their garden. Yumm! Great work guys. We have also had a lot of fun with playdates with some of our friends. Staying close to home has it's advantages and having great friends are even better. I think we have went though at least a dozen boxes of popcicles. All worth it!

July Fun

So much fun over the 4th of July. We went to Newdale, Idaho for Trevor's family reunion. It was a lot of fun to see all the extended family. I even got to visit with my old mission president and his wife (Pincocks). It was so amazing to see them. My cousin Stacy came into town for a couple of days and we had a chance to hang out. I sure have missed her!!! For now we are enjoying the summer, just playing it low key! Just relishing in my time before I have to work again:( Oh, by the way, I'm giving up sugar. So we will see how it goes. If I'm crabby for a couple of days. . . you will know why!

Here I Go Again

I think I want to see how many Universities I can attend or something like that. Actually, with the boys health issues, I have found it necessary to make some career changes. Even though Trevor is an excellent provider, medical bills and RX's are robbing us blind. Now, if you think I am for socialized medicine, think again. But that is a topic for another blog. So a couple of months back I felt impressed that I needed to do something that will still allow me to be a mother and take care of the boys concerns. So here is the story. When I returned from my mission as a mission nurse, I decided that medical school was not something I wanted to put a family through. Instead Shane (my brother) talked to me about going into Family Therapy. Since I already had an associates in biology/psychology I didn't think it would be a big leap. So I ended up getting my bachelors in Family Therapy from BYU. It ended up being a huge blessing after Tyler was born. They I started working for a medical diagnostics account and they offered to pay for me to get an MBA. So I did it, but quit work a couple classes away from finishing. At $2000 a class, I couldn't keep going on my own. So then came Davin and Ryan's non-stop health issues and once again, ,I found myself drawn to the medical field. Last month, I went back and got my CNA license (just past the tests last week:) and I also got accepted to Weber State University for the fall. My goal, to get accepted to Weber State University Nursing program that starts in the fall of 2010. If all works out, I will be an RN in the next couple of years. I figured, hey, I'm already doing this with my kids so I might as well get payed for it! So as life has taken so many turns, I decided so should I. Yes I'm not excited about paying for college again, but feel that this will ultimately be the best thing for my family and myself. So here I go again

Swine Flu

OK so it really isn't that bad, feels just like the flu that keeps on giving. Of course, Davin has it the worst but he is on Tamiflu now and I feel a lot better that he is. We also have a RX for Ryan just in case, but since he hasn't been spiking as high of fevers we didn't get it filled. Actually, as of today, there is only 1 more Tamiflu Suspension formula in the area (Rite Aid in Provo). That is part of the reason that they are telling most people that they don't need it. But in the boys cases, the risk was just too high. I feel bad because Davin and Ryan's TRAPS symptoms are a lot like the Swine Flu, however, when they didn't come down with rashes and the rest of us got sick, I knew they were dealing with something contagious- so Parker and Aimee, I hope you guys are OK. I guess I will keep them in Quarantine for a couple more days.

Marseilles Dress SHABBY APPLE GUEST GIVEAWAY!!!!

Marseilles Dress SHABBY APPLE GUEST GIVEAWAY!!!!

$50 Richer

Tyler decided that he was going to enter a contest for Springville City, where they were asking the residents to clean up the gutters. All on his own, he found about 80 feet of debris filled gutters and cleaned them up. He submitted his entry to the city with the attached pictures. So today we received a phone call that he was one of the people chosen to receive $50 cash for his work. He is so excited, I'm proud of him that he did this all on his own. Way to go Ty!

Summer Is Here!!!!!!

. Summer is in full swing. We are having a ball and trying to find fun ways to make the most of our time. Tomorrow we are off to the Discovery Museum, today we did "bugs, boys and water balloons", next week is Art City Days and maybe a day or two swimming. Ryan is still getting into all kinds of mischief. He can now jump up onto the counters, open locked doors with a penny, get out of his car seat and thinks he is old enough to run away from me EVERY where we go. Davin is growing up so fast. He is such a blessing to us! However, I am waiting for my genetic mutant to gain some super powers. We just found out that his labs showed he does not have immunity to Varicella immunizations even though his is fully immunized and was exposed to Tyler's Shingles last summer. This is the second immunization that he has been tested for and both showed no immunity. Kind of scary knowing we live in a society where passive immunity might not protect him. Also, he has the HLA-B 27 gene. Seriously, he is a walking auto-inflammatory anomaly. As far as Tyler, well he surprises us every day. He has been such a blessing in out lives and has taught us to keep moving forward no matter what. He really works hard and inspires me on a daily basis. Trevor and I are busy with the boys and trying to find ways to make everything work for the best. Some days we do a great jobs and others--- well lets just say we are glad for another chance come morning. For now, we are enjoying the fresh air and sun.

Is Anything Safe Anymore

Davin's Surgery

Davin's surgery went well yesterday. The good news is that they doctors were able to see what we have been reporting to them. Now we have medical documentation that there is a reason he is getting recurrent croup and laryngitis. He had marked inflammation on his larynx and his trachea was riddled with tinny bumps. His lungs looked great so his inflammation is located in his upper respiratory tract. They sent several biopsies to a pathologist so hopefully they will reveal more information. The difficult news is that they were not sure exactly how to treat what they saw. There is just not enough documented about TRAPS to say definitely that it is the reason for his respiratory concerns. More often kids with uncontrolled GERD have similar findings. The hope is that by treating him for GERD, the recurrent croup, sinus and larynx inflammation will disappear. I sure hope so, however, my gut tells me that this is not what the problem is. Time will tell, so for now we have added two more medications to his routine. If anyone has had experience with this or any insight, I would love to hear from you. Davin is struggling a little still with his breathing, but he should get better soon! Here is to hoping:)

Yard Sale Sucess!

Thank you to everyone for all your help with the yard sale, it was a huge success! We raised enough money for two plane tickets and maybe a little more. I am very grateful for family and close friends who, without them, we would have nothing. Thanks again for all your love and support!

Change in Yard Sale Date

So we just decided to change the yard sale to next Friday, May 8th from 10am-7pm. The bad weather and a friends illness has inspired the change, hope you get to feeling better soon. Thanks to all who have supported us and our efforts. We appreciate your love.

This is the boys with their cousin Ethan. So much fun when they get together. We love having him around. Now if I can just get my sister Holly to come visit more often, we would be in business.

Holly & Mike's little girl would have been 2 last month. In honor of Aubrielle's birthday we let pink balloons go so she could get her happy birthday message in heaven. We love and miss you! Happy Birthday Aubrielle!

I Know

I know that everyone is disappointed that I haven't blogged lately. I know you have all been waiting at your computer for my update, so here you go. We had a great Spring Break last week. We made a last minute decision to go to Casper Wyoming to visit Trevor's parents. It was a nice break! Ryan was still not feeling well, in fact we had to drain a boil he had on his arm- it just got too big. It looks better now and the one on his foot is going away on it's own. I took him in to the MD today and he diffidently has croup and ear infections. He also has a couple of abscesses in his throat so he has had a hard time eating. He is down to 33 lbs. and just wants me to hold him (day and night). His rash is all over his chest and has had a lot of chest pain but his lungs sound good so we think the inflammation is localized to his plural lining. Ouch! We are starting another steroid and antibiotics today along with more breathing treatments. Hopefully he will be feeling better in the next couple of days! Tyler and Davin are starting swimming lessons today- I don't have a camera anymore so I will post pictures once we get one that works! Hope everyone is well. Enjoy the spring- Jen

Fundrasing Garage Sale

We decided to do a fundraising garage sale for the boy's TRAPS disease on Saturday May 2nd. I hope that we can bring some awareness to their condition. We are going to use 100% of the proceeds to help cover the cost of plane tickets to the NIH and if there is money left over to cover their medications which runs $1300 a month. The good thing about the NIH is once they are in the program 100% of their TRAPS medications will be covered. We will just cover the costs of their local medical care & surgeries. Yeah! Thanks to the ward, we were able to bring home the left-over household items from our last ward activity that we will use to sell. My parents are also letting us "de-junk" their basement to donate items for the garage sale. If anyone has anything they would like to donate or need help de-junking just let me know. If I could just get help getting the word out that would be awesome! Thanks

Arrow of Light

Last week Tyler was awarded his Arrow of Light. We are so proud of him and how hard he has worked. Way to go Tyler! We love you.

A couple of weeks ago, the boys were felling well at the same time so we did our monthly "cooking club" they had a blast making Scottish Scones and Irish Stew- you know I have to get my Viking heritage in there somewhere (Aut Pax Aut Bellum- Clan Gunn)

Enough Already

This is the boys the past couple of weeks. Their TRAPS has been flaring despite treatment. High fevers, swollen eyes, rashes, joint pain, stomach problems, ENT issues. The specialists that we have been seeing say this Enbrel the only medication, however, I do know a small percentage of people that have been to the NIH who have been told differently. What to do? I also started charting their symptoms in a calender so see if I can find a pattern so we can tell the difference between a true TRAPS event and other illnesses. Right now the boys are soooooo grumpy, I know that they don't feel well, but I have been feeling like we still need to have some normality in our lives. It has been years since we have seen a light at the end of the tunnel. It is funny because Tyler was recently on a basketball team with some of his friends. It was a great team that didn't win very often. After his last game he seemed down. I asked him what was wrong and he expressed frustration that he didn't win more. In one of those "mommy moments" I explained how grateful I was that he was not on a "winning team". He looked at me with shock that I wanted him to loose. I told him that if he was on a team that won all the time he wouldn't have worked so hard and learned so much, even though he felt like he was running all the time and not getting anywhere. Of course the scoreboard would agree with him, but I could see things the scoreboard couldn't keep track of. I guess in a way, I understand how he felt. I am tired of running all the time and seeming like the scoreboard isn't keeping up. It isn't that I don't have faith that something will give, I'm just exhausted in the meantime. I have grown dramatically in the past several years, as I'm sure my children have a well. It is just hard for me when I know there are answers out there, but I don't know how to get them

Spring Is In There Air

I'm so excited for Spring. Last week we had so much fun playing outside and going from park to park. I even signed Davin and Tyler up for swimming lessons next month. I decided not to do the "mommy and me" class for Ryan b/c I thought Davin might need me to cheer him on a little too much. Winter is always a little hard on us, not that the rest of the year is much different, it is just people get a little more stressed out with children who appear "sick" more in the winter than in the summer. In the summer most people just think my kids have bad allergies. I need to find a way to bring more awareness to the boys disease. I was trying to explain TRAPS to a doctor who was treating Davin on an emergency basis a couple of weeks ago. The MD said "I don't know about that disease, are you sure?" and "that is a very interesting story". Seriously, I thought of just telling him how to write the RX so we could be on our way. He felt that his symptoms warranted more investigation, as if his file is not thick enough. At any rate, I am very grateful for Spring to come. I was hoping to get the boys into the NIH this summer, but I don't know if I can sell that many cookies between now and then to afford the plane tickets. It would be nice to get the boys into the MD who found the disease so I can ask some of those questions that have been bothering me. For now I will enjoy those daffodils that just bloomed and wait for sunnier days.

What Is The Deal

So I'm on my 6th day of insomnia. I'm not sure what is going on. I woke up at 1 am and haven't been able to get back to sleep. I've taken melatonin, haven't drank any caffeine the day before, worked out early and have drank plenty of water. I've tried deep breathing, relaxation, praying, changing my environment and nothing has worked. It would be fine if I didn't have active children ALL day. I know by noon I will be crashing- just wish I could sleep when my kids do. I guess since the practical approached has not worked I should try eating some chocolate.

As far as the kids are doing- Tyler just received his report card and he is doing better than I thought. He has strait A's for his effort and all A's and B's. Not bad for a kid with a Central Processing Disorder. I am proud of what a hard worker he is. I know he has been getting very frustrated with himself lately because of his difficulties with handling noise and his recall abilities. But, he has proven to be a strong individual.

Davin is still as feisty as ever. I wish I had some answers for his health problems- the Md's have been ignoring the issues until the trial of Enbrel shots are over. But in the mean time, he is still not doing very well. No luck on potty training, still small for his age, still hypotonic, still showing language delays, still recurrent sinus and trachea inflammation, still inflammation in his intestines, still has rashes and his crazy toe, still eye swelling, still periodic fevers. I mean really- is there an end? The good news is Davin is doing great in Pre-School, he is starting to read, knows all is numbers and letters and can recite many things.

Ryan is so funny. He started in his terrible two's a couple of weeks ago. It was in coincidence with a TRAPS flare and RSV, so I was hoping that it was a result of his health issues, however, since he is starting to get better and still yelling/stomping his feet at us all the time, I think it is a behavioral issue tied more to his age. Oh fun. It is actually less guilt racking disciplining him for behavioral issues related to age than behavioral issues related to his health. I'm still not competent in corrective behavior methods when a child does not feel good. But considering he doesn't feel well 70 % of the time, I guess I need to figure it out right? Ryan is potty trained and starting to talk more. I think he gets confused between English and Spanish (since I speak both), but he loves to copy his big brothers and me.

Well, I'm going to try to lay back down. Good Night!

California 2009

What An Example

Last week was a little discombobulated. One day Ryan and I were running around town and decided to stop at the Subway in Spanish Fork for Lunch. I didn't realize that this was a popular place to "hang out" for the local High School kids. As we were eating, the kids starting coming in by the drones. One boy in particular seemed to lack certain "social" skills. One girl seemed to be the "popular" one and another boy "the man on campus". As I watched Ryan take notice of the kids, the one boy who's social skills were not all there, started to become offensive in his behavior. Before I could say anything, the "man on campus" told the kid, that even though they were used to his obnoxiousness, it was not something my Ryan should be seeing and to tone it down. I was floored. Who was this boy and what kind of family did he come from to take notice of what my little "Ryan" was experiencing. Why did he care and why did he stick his neck out for a total stranger. It was an amazing experience, I'm sure that boy will never know how much it meant to me, as a mother, to have a great example for my child. Hopefully, I can teach my child in such a way that he to will stand up for what is right, even if it is for someone he had never met.

Davin's Breathing

So it seems that being dx with a rare disease has been good for a decrease in hospitalizations, however, we are starting to find out how much the medical community DOES NOT know. Specialist visits are being filled with "I don't know" and "what do you think we should do". It is clear that we will need to rely heavily on the Lord. I am so grateful that things are working for Ryan. He seems a little sicker than most kids, but almost normal- it has been such a breath of fresh air. I hope that he can continue making progress! The shots seem to be helping Ryan (knock on wood), but Davin is another story. No one is sure how to proceed. We might have to consider more radical sinus surgery for him, however, I'm not sure if that will work either. At any rate, we are adding another medication to help them fight off infections. My head is just spinning. Davin is so skinny, even with the steroid injections and medications he still is small. One of our regular doctors feels like his speech delay has more to do with his chronic sinus inflammation which makes sense to me- that is good news. Attached is a file of Davin's breathing. You may need to pause the music. Even though it sounds like he is snoring, it is his normal breathing while awake and just sitting (called a stidor)- hence the steroids. It is getting better in his windpipe, just not in his sinus. Any ideas??? I'm maxed out of ideas?

Root Beer Floats Never Looked So Good

Congratulations to Tyler, who yesterday won in the 5th grade ALA science Fair. He did his project on the re-crystallization process of ice-cream in varying temperatures of root beer. It was a yummy experiment! He now gets to advance to the state competition in the up coming months. Job well done Tyler!

Luke Michael Rossiter

Congratulations to my little sister, Holly & her husband Mike. They welcomed a healthy baby boy to their family yesterday. Holly and baby Luke are doing well. He weighed 7 lbs and 3 oz, 20 inches long. His big sister Elise is excited to be able to bring home a healthy baby brother & I'm sure Aubrielle is smiling down from heaven as well. We wish them all the best!!!!

The New Year

So since Ryan is in big boy underwear, I've decided to stay as close to home as possible last week. With the down time I read the Twilight series- it was great. It was also nice to do something for myself. I know that there was a lot of other things I should have been doing, but Oh Well!

This week has been a little nerve racking for Davin and I'm hoping he is on the up swing. He has croup and his stridor was starting to compromise his oxygen saturation (80-90). I decided that the doctors should give him a shot of Decardon (a steroid) to help with the swelling. He didn't like it much, however, with in a couple of hours his breathing went from hospitalization scary to a normal case of croup. He is sleeping soundly now and hopefully Trevor and I will get some real sleep tonight. I know the last time I said that I ended up taking Trevor to the ER- so I hope I'm not jinxing myself. We will see what tomorrow brings! As for now I feel soooooo blessed.

Happy New Year

Happy New Year! Well we hope that everyone had a wonderful Christmas season. Here is to a less eventful 2009!