Help Make Raymond's Birthday Magical

I recently read about a young man named Raymond. Raymond is nearly 19, his birthday is coming up this month. Raymond has developmental delays and therefore functions closer to the level of an eight year old. His amazing mom posted a wish on www.wishuponahero.com asking for birthday cards for Raymond's birthday. Raymond loves to get cards but they have very little family and his mom would love for him to get as many cards as possible.

Let's help make Raymond's wish come true. If you'd like to send a card, you can check out the wish HERE. Let me know and I can get you the mailing address.

Thanks!!

Brent CaringBridge

I decided to go ahead and create Brent a CaringBridge page of his own. That should make it easier to follow along on this journey while we try to figure out what is making him so ill.

http://www.caringbridge.org/visit/brentgardner

Thanks Sue!

While blog hopping tonight I clicked on my friend Sue's blog and found this post. I just had to share. Thank you, Sue!!!

An update, finally.....

Thanks to everyone for the emails, phone calls, etc. I figured it was high time to get an update posted.

Brent was released from the hospital last Tuesday. Basically we felt like they were at a loss as to how to help him and instead of trying, they sent him home. I am frustrated in many ways by this. They told him to continue taking the Bactrim, which makes him sick and isn't really helping. I'm more and more convinced that he is allergic to it. If he didn't already have the appointment with the infectious disease specialist, we would have fought really hard for him to stay in the hospital. However, knowing that he was going to see Dr. Shelly, we decided to get him home and let him rest here.

Monday this week brought about its own challenges. Tyler's g-tube came out. We're not exactly sure when. It was in and working fine on Sunday night and I saw that it was in on Monday morning when I changed his diaper. However, Brent went to change him for nap and it was out. I tried getting it in and it wouldn't go. So off to the ER we went. They tried but had no luck. They decided to admit him and hope that they could get him scheduled for surgery yesterday. That didn't pan out. So now we are home again and hoping to get surgery scheduled next week to replace it. Having a vacation at Hotel Strong was not exactly top on our list. But it was nice to see all his girls, (the awesome nurses and techs) and also a couple of friends who are inpatient right now.

Brent had his appointment with Dr. Shelly yesterday. For the first time in a long, long time, we finally feel like we have a plan of action. Dr. Shelly spent a lot of time listening to Brent and I, attempting to understand the situation and reading through all of Brent's medical records. He spent a lot of time studying his labs and trying to understand everything. Finally he explained things to us in a way that makes some sense. He told us to ignore the MRSA for a minute. He said that he doesn't consider Brent to be a person who simply has MRSA. Instead, he considers Brent to be a person who gets these horrible, open sores that refuse to heal. The sores can, and do, appear anywhere. He has had them on his hands, legs, arms, feet, etc. He gets them, they get larger and larger and they don't heal. The question is why. What underlying issue is there that is causing him to get these? Second to the sores is the fact that our family is colonized with MRSA. Once he develops one of these sores, the MRSA takes advantage of it and makes it worse. So, the doctors and the hospital see the infection and attempt to treat it. But they aren't trying to figure out what caused the sores in the first place. That is where the mystery is.

So now what? First of all, he told him to stop taking the Bactrim. THANK GOODNESS!!!! He said that it clearly isn't helping anyway and it is causing more harm than good at this point. He said that we need to be diligent in watching for fevers and such because of the MRSA. The next thing he is doing is a whole lot of blood work. He is going to test for many things that no one has looked at yet. Everything from rheumatoid arthritis to lupus to hepatitis, and the list goes on and on. He is thinking that Brent has some sort of autoimmune disorder that is causing him to not be able to heal these sores on his own. That would also explain his other symptoms....fatigue, muscle aches, etc.

So for now, we wait again. We are praying for an answer. We feel like at this point, we can handle anything as long as we know what it is. Brent has been a trooper through all of this. I know he is miserable. I know he is in pain. But he is strong and I know we can make it through this.

Please continue to pray for our family. Your prayers are heard and they are being felt!! Thank you for all the love and support you give to us!!

Brent Monday Update

Just a quick update. Brent has developed a very scary complication to things. They had to remove his IV because it got infected. They put in a new one and that was almost immediately infected as well. They won't even draw blood at this point. Every time they poke him, he gets a new infection. His arm is starting to solidify where the infections are. Because of this, they obviously will not put in a central line. If it were to get infected as well, it could be fatal.

Now they are at a loss as to what to do. They are thinking of sending him home because there really isn't any reason to keep him in the hospital. He will come home on oral antibiotics again. Right now there just isn't anything else they can do for him.

He does have an appointment to see an infectious disease specialist next week. We are praying that they will be able to give us some more help.

This whole thing is just scary to me. I am worried about him. I'm worried that the oral antibiotics won't help. I'm worried that this will just continue to happen. I just don't know what to think at this point. As much as I want him home, I also worry that we're just going to end up in the same position soon. I guess for now we'll just have to wait and see.

Brent Update

Brent is in the hospital again. This is the second time in about a month. Once again, he is fighting MRSA.

The Infectious Disease docs saw him on Friday. They are all in agreement that something besides the MRSA is going on. Yes, MRSA is a nasty infection. However, most people who get it can fight it off either on their own or with oral antibiotics. For many people, it doesn't ever return. They are concerned that there is something else going on with Brent that is causing him to get this over and over and over without being able to fight it on his own. So now they are talking about doing some tests to figure out if there is something going on in his immune system. So that's kind of the next step. They are also talking about sending him home with a central line, probably a PICC line, so that he can continue IV therapy at home. This is something we have been pushing for for a long time. We are really glad that the docs are finally starting to come around to this idea. The bottom line is that oral antibiotics just aren't enough for Brent. This infection continues to return, he goes to the hospital for a few days of IV treatment, comes home on oral antibiotics and we're back in the same boat again in a few weeks. All in all, this is his fifth hospital stay for MRSA and I'm not even sure how many times he has fought the infection out of the hospital. More than anything else, we just want him to get well. Hopefully by tomorrow we should have more information.

The other concern with Brent coming home without a treatment plan is Tyler's health. Obviously Ty has also battled MRSA quite often. Tyler's immune system is compromised due to the chemo and they're concerned that Brent and Ty are just passing the infection back and forth to one another. Tyler's Oncology team is starting to advocate for Brent and Tyler as well so that we can come up with a plan for both of them. We are so thankful for all of Tyler's doctors and nurses. They truly do have his best interest at heart as well as the rest of our family. We are so blessed!

Unfortunately Tyler has the same nasty head cold that Emma and I have. He has been pretty miserable today. Thankfully Em seems to be feeling better though she still has a yucky cough. Nate has started coughing and has the runny nose. Sounds like a barrel of laughs, doesn't it? :) The kids all want to go see their Daddy but I'm afraid to take them up there. I don't want to share germs or contract any new ones.

I will update again tomorrow when I know more. Thanks for the emails and comments left here and the love and prayers. We truly appreciate it!

Kid-Isms

This isn't just about Emmalee. :) But I have to share what she said first. She is so dang funny.

Emmalee was eating dinner and spilled a little. Her reaction? "Dang, and on my beautiful wedding dress and everything. I'm doomed!" I swear, she kills me sometimes!

The other comment recently came from Tyler. I just want to cry thinking about it. We were having dinner the other night and I was helping Ty eat. He looked at me and said, "I want to try." Wow! He asked, in a full sentence, for something he wanted. I am so proud of this child!

Fun Times in the Middle of the Night

Yes, it's 4:45 in the morning and I am awake. Or still awake, I should say. Darned insomnia. Too bad I didn't go to bed when I had the chance. Since I was up anyway I decided to Jenny, our dog, out to run. She loves to do that at night. Well, she ended up getting sprayed by a skunk. Lovely. I didn't realize that's what had happened until I had already let her in the house. So now the house smells awful. Luckily I found a good skunk smell remover for Jenny. I had to send Brent to Tops for peroxide. Thank goodness they're open 24 hours a day. It seems to have helped some though I will probably have to do it again. Incidentally, it is 32 ounces of peroxide, a cup of baking soda and some dish washing liquid. Mix well, rub it in, scrub well for about ten minutes, rinse well and ta-da. The benefit of that is apparently fleas don't like water or peroxide or baking soda. I didn't know she had any fleas. Now I realize the flea treatment hasn't worked so I'll have to try the more expensive one. Good to know. The other plus is that I just finished scrubbing the bathroom. Didn't really want to shower in there after giving the skunk smelling dog a bath.

I'm telling you, there are good times to be had around here in the middle of the night. Too bad they don't seem to include sleep.

Any tips on getting the skunky smell out of the house??

Too Funny!

Emmalee just asked me what would happen if the little mouse got out of the computer!!! I asked what she meant and she told me she thinks that the computer mouse is a real little mouse inside the computer and that he moves around inside and pushes all the buttons and stuff. She is too much!!!

Yard Sale & Update

Ty is doing pretty well. He is a little bored with having to be at home and not really getting out. It may be a long two weeks. :)

Brent and I are planning to have a fundraiser yard sale on the 29th of August. Ty has some medical bills that aren't covered and we are also hoping to raise some extra funds to replenish our savings. When Ty was first diagnosed Brent took a lot of time off work. Then I broke my ankles and Brent was in and out of the hospital....needless to say our savings is wiped out. So we are having a yard sale. If you have items that you would like to donate to the sale, we would greatly appreciate it!! Just let me know and I can make arrangements to pick things up.

Thank you all for your continued love and support of our family.

Tyler Update

Well, I should know better than to say that things are going well. Ty had clinic yesterday and I am sad to say that he is fighting yet another horrible MRSA infection. His stomach and chest are covered in little sores and it is very, very red and irritated. I can't imagine how it must feel.

MRSA seems to like our family. Brent has a horrible sore on his foot right now and I just got over another round. It's bad enough for us to fight it. But when Ty gets it, it makes me very nervous. Thankfully his counts are still holding steady and he hasn't been running a fever. Because of that, and the fact that we have been down this road several times before, they let us come home. Ty has to be on IV antibiotics, (Vancomycin,) every eight hours for the next two weeks. We pray that this will do the trick and we can avoid a Strong vacation.

The saddest part of this whole thing is that Tyler will have to miss his last days of pre-school. I am so disappointed. He has truly enjoyed getting back to school this summer. He is just so cute getting on the bus!

So for now Ty is on quarantine again. Please continue to keep him in your prayers.

Much love!!

Emma-Isms

I haven't posted Emma-Isms in awhile. That kid cracks me up!!

We were driving the other night and Emmalee was asking about school, when it will start, where they will go, etc. I told her that she only has one more year of pre-school until she goes to kindergarten. I told her that I was kind of sad and that she and her brothers are growing like weeds. She got really offended and told me, "Momma, we are not weeds. Weeds are yucky. We are growing like trees!"

Last night Emmalee asked if we could go to Chuck E Cheese after church today. We told her no, that we stay home on Sunday. She wanted to know why so we told her that Heavenly Father has asked us to stay home, not spend money, and keep the Sabbath Day holy. She thought for a few minutes and then told us that Heavenly Father told her she could go to Chuck E Cheese on Sunday. Brent asked her when He had told her that and she said, "before I left heaven."

She's got an answer for everything!!

Our Crazy Life

I have so much to catch up on blog wise that frankly, I am overwhelmed. Do I attempt to write it all out? Do I post it all in one long post or do I make them all separate? What if I don't remember everything? What to do, what to do? THE PRESSURE!!!!

Okay, it isn't that bad. Here's a quick run down of the past, oh, I don't know how long.

I still have tons of pictures to post from our trip to Nevada and Wyoming. I miss my family. So does Emmalee. She asks about them all the time, especially her cousins. She sure had fun getting to know them. We went primarily to celebrate with my oldest niece, Miranda. She graduated from high school. Personally, I still cry thinking about it. I'm not exactly sure how my sister functions. I mean, her girls are growing up. FAST. How can it be possible that Ranny is heading to her first year of college? COLLEGE! Wasn't she born about five minutes ago? She turned eighteen in July. Merissa is nearly seventeen. Marriah will be thirteen. I watched her come into the world. How can that possibly be thirteen years ago?

I can't even explain how much I love my nieces. I love them like my own children. I miss them every single day. Living so far from them is beyond difficult. When Brent and I got married and I moved away I left a piece of myself with those girls. No matter how old they get, I will always see them as they were the day I got married. I will always treasure the years I spent as their nanny. Most of all, I will always be thankful that I have the privilege of being their aunt. I love you, girls!!

Okay.....what else.....

Thankfully Brent did not end up having the Swine Flu. He did have the flu. Just not the Swine Flu. Our doctor said that the regular flu is just as nasty and I have to agree. He was pretty miserable. Thankfully the kiddos seemed to escape it.

Brent still struggles with MRSA and the horrible side effects of having that infection. As I type this, he is at the doctor because he has a new sore on his foot. I wish I could wave a magic wand and get it to heal. Tyler, Emmalee and I also struggle with MRSA but not to the same extent. Hopefully Brent will get some relief quickly.

Tyler has been doing well. He is holding steady health wise and we haven't, (knock on wood,) had a Strong Vacation in several months. That is always good news. His counts have been great and he has been pretty healthy minus some cold symptoms and the like. We just pray that it keeps going like this.

Ty LOVES school. He has enjoyed every single day. He wakes up in the morning and the first thing he says when I open his door is, "okay, shoe shoes, go, the bus!" He is having such a good time. I am so happy about that! I was worried that he would be nervous or timid. I should have known better. He jumps into the bus drivers arms. He waves goodbye. He is sad when he gets home. My favorite part of the day is when he gets home and goes on and on about his day. Of course, I can't really understand what he's telling me but I love it none the less. What an amazing kid he is!

Ty will be going to kindergarten starting in September. After much deliberation, Brent and I decided that we were going to go ahead and start him at the regular elementary school. We debated quite a bit about weather or not to keep him at Mary Cariola or to send him to a typical school. We LOVE Mary Cariola. They know him there. He loves it there. It was not an easy choice. We visited the elementary school's special education classroom, met the teacher and checked out the school. We loved it also. The teacher actually got her start at Mary Cariola and taught there for several years. The classroom is very cheerful and the special education curriculum is exactly what we had hoped it would be. Ty will receive all his therapy at school. He will be in a class with very few students and many aides. There is a strong focus on language and that makes us very happy. There will be many opportunities to spend time with his typical peers. All in all, we think it is going to be a great choice for him. We are also comforted by the fact that if it doesn't work out, we can go back to Mary Cariola. But we feel like we need to give him the chance at the regular school. We'll hope for the best and pray a lot. :)

Emmalee has been having a good summer. That's my opinion. From her perspective, it is boring. She's such a hoot. She did attend Vacation Bible School for a week and she had so much fun. She is very ready for school to start again. She is still a total crack up and still keeps me on my toes. She will go to pre-k again in the fall. She is going back to the same class she was in last year. I am so happy for her. She loves her class and her teacher. The only difference this year is that she will go three days a week instead of two. She is so excited!!

Nathaniel is doing well. He went back to the doctor and is taking some additional medicines to help with his constipation issues. He also had a gastric emptying study done. That determined that his tummy doesn't empty quickly enough after he eats. This is the reason his tummy resembles a pregnant woman. We added a new medicine for that and it seems to be helping. He is getting a little more regular. We'll just keep going and see if these steps make a difference. Lucky for us he is such a trooper. He just sort of takes it as it comes.

In other Natey news, he is WALKING!!!! I love it! I love seeing him toddle around. He is too cute. I'll have to try and post a video. He really gets a kick out of being able to get around. Sometimes he gets so excited about walking that he tries to run and then he just topples. It's pretty funny. With walking has come climbing. That's the not so cute part. LOL I don't so much mind that he can get up on stuff but he can't always figure out how to get off properly. He either falls or stands there screaming until someone comes along and gets him down. What a goose.

In further Nate news....he is going to start school in the fall. Yep, it's true. He is going to attend Mary Cariola. It seems strange to think of sending my two year old on the bus. But the fact is that when Tyler got sick, Nate's therapy sessions took a nosedive. There were many, many cancelled sessions because Tyler was neutropenic and we couldn't let anyone in the house. That put Nate behind on his therapy schedule. He is playing catch up pretty well but after careful consideration, we realize that he would benefit much more from doing a center based program. He will get OT, speech, PT, music therapy and any other therapies they think he would benefit from. Brent and I are so excited for him! We aren't sure yet if it will be a three day a week or a five day a week program. Either way, I am so thankful to know that he will finally have the opportunity to get all the therapies he needs. He is still very delayed in many areas and knowing that he will be able to get all he needs is a blessing. I know he will love going and I also know that he is going to be everyone's favorite. :)

Collin was home for a whole month!!! It was fantastic. He has grown and changed so much. I can't believe it had been two years since I saw him last. He is way taller than I am, which isn't saying much. But he is also taller than his dad. He is so much like Brent in so many ways. He is very musical and plays the piano by ear, just like Brent. He is a very good big brother and the kids loved having him home. I think they were a little overwhelming for him at times since he is used to being the only one at home at his mom's. But he handled it well. He was very patient with them....most of the time. :)

While Collin was home we had a chance to do a few fun things. We saw a couple of movies and he and I went to the Hill Cumorah Pageant. We had such a good time.

Brent & Collin were able to spend about ten hours in New York City. It was a fast, tiring trip but I think they enjoyed it. We were able to get some buddy passes from a good friend of mine who works for JetBlue. So Brent & Collin flew to NYC on Monday night & took the subway to Time's Square. Brent had enough reward points from all his work travels to get a hotel for free right in Time's Square. They did a lot of walking and picture taking, got about an hour of sleep and took the subway back to the airport for Collin's very early flight to Phoenix on Tuesday morning. Then Brent flew home. Not much of a trip but since neither of them had ever been there before, I think they had fun. Someday we'll have to take a real trip to the city.

We attempted to get some pictures of all four kids together while Collin was here. It was interesting. Imagine trying to get three small children to smile and look at the camera at the same time. We have about 200 pictures of Collin looking at the camera and smiling while the other three are in various poses, facial expressions, etc. It was a riot. I think I'll have to order a collage for Christmas cards this year. Either that or learn how to edit the pictures.

We also have a new family member. Jenny is about four months old and she is our new fur baby. She is a lab, retriever mixed with either some sort of spaniel or setter. Not sure. We don't care. She is a very sweet puppy. Although I must admit that having a puppy is about like having a new baby. Thankfully Jenny was already house broken. I will, however, be thankful when she is past the chewing, jumping phase. She is very smart and is learning quickly. She loves the kiddos and they adore her, most of the time. :) She is a great addition to our family and even Brent likes her. We are hoping to work towards training her as a therapy dog for the boys and even for Emmalee.

So I guess the only person I haven't updated about is me. I had a birthday....turned 34. Collin thought it was funny to put my candles on in the opposite order and make me 43 instead. I didn't find the humor.

I will be honest....I have been struggling lately. I have some health issues that I have ignored for a very long time. I can't ignore them any longer. I am going to the doctor on Monday and praying that we can come up with some answers. Life is never dull, for sure.

Well, if you have made it this far, I commend you! Thanks to everyone for your continued love and support of our little family. We love you all!!

Happy 10th Anniversary To Us

Today is our 10th anniversary. In some ways it is hard to believe ten years have passed since we got married. And then again, so much has changed in ten years. Here are a few of the highlights --

We have lived in five different cities and three different states -- Arizona, Utah, Arizona again and New York.

We have lived in seven different houses.

We have owned five different vehicles.

We have had three dogs and four cats.

Between the two of us we have had ten major surgeries.

We have suffered through infertility and miscarriages.

We have adopted three amazing children. Each one has been a confirmation that adoption is a miracle and God sends the right children to the right family, no matter how they have to get here!

We have suffered the loss of Brent's Dad and we miss him every day.

Brent has had four different jobs.

We have watched our child suffer through leukemia and keep fighting. He is an amazing kid!

We have each had several callings in church.

We have traveled to many different places. Some of my favorites include the Oklahoma City Memorial, the Grand Canyon and Disneyland.

We have endured many trials and had many blessings. No matter what, I can't imagine doing this with anyone other than Brent. He is.....well, he's amazing. There simply aren't enough words to describe how much I love that man. He puts up with me through all my moods. That in itself is a miracle. He is kind and patient, loving and genuine. He is an awesome Dad and nothing makes me happier than watching him with our children. Is he the person I thought he was when I married him? No. He is far beyond what I could have ever hoped for. He has changed me in ways I never expected.

I love you, Brent! Thank you for making the last ten years the best of my life. I can't wait to see what's next!!

Back To School

I haven't updated for awhile.....So much has been going on. Most notably, though, is that Tyler went back to school today! They go for six weeks in the summer and we were so happy to get a spot at Mary Cariola, the same school he went to BC, (before cancer.) We were also very lucky to get the same teacher he had before. She is amazing and Tyler loves her!

I am both thrilled and terrified that he is at school this morning. Thrilled for him because he has missed it so much. He has also missed out on a great deal of therapy this past year. He loves being there, and the routine of it is so good for him.

Then the germ-a-phobe in me kicks in. We have had to be so careful this past year. We have avoided church, avoided the grocery store, avoided any possibility of him being in contact with other kids and germs. We have carried Clorox Wipes and Purell and made sure that we wipe everything down before he touches it. We have kept friends and family at bay, avoided play dates, kept Emmalee home from pre-school if she shows any sign of sniffling. We have been warned and we took those warnings to heart.

And now, here he is, with full permission to go back to school. I am trying not to be overwhelmed with concern, really I am. But the fact is, I do worry. I know I can't hold him back forever. I know that the doctors and medical professionals have his best interest at heart and would never let him return to school if they didn't feel it was absolutely safe. I know. But I'm his mom and I will worry none the less.

Tyler, however, was not one bit worried! He was thrilled! He was so excited to see the bus. His enthusiasum made me feel better. Only two and a half hours until he gets home. :)

Good Morning! It's time to go back to school!!

Headed to the bus with my bus driver.

All strapped in and ready to go.

And they're off!