Brent Update

Oh my goodness, I guess it is high time I updated!

Brent had his appointment in NYC last Friday. The appointment went really well. Dr. Yazici was amazing, kind and very, very smart. He does think it is Behcet's. However, because Behcet's is a clinical diagnosis and doesn't have an actual test, he ordered a ton of blood work to rule out other things. Brent had the blood drawn at NYU Friday and they literally took about 15 different vials. As the doctor said, he does not think the blood work will show anything but he wants to make sure he rules out everything else. He said he is 98% certain Brent has Behcet's. He did start him on one medication, an anti-inflammatory, and gave him a prescription for another. However, he wants to work with Dr. Shelly, the infectious disease doctor, right away and get Brent on some sort of antibiotic. His main concern is that many of the drugs used to treat Behcet's are immuno-suppressors. One of the main ones is Methotrexate. Given the active MRSA infections, he doesn't want him to start the other meds until the infection is more under control, for obvious reasons. We explained to him that that made total sense given our experience with Tyler.

Brent will have to see some doctors here very soon. He needs to have a colonoscopy as well as see an ophthalmologist. Dr. Yazici is very concerned about some of the eye issues Brent is having and wants to have those checked out soon.

We also have to find a new PCP, soon! We do not want to work with our current doctor any longer. We explained to Dr. Yazici how he has treated Brent and he was disgusted. He is also very concerned with how much narcotic pain meds he has prescribed. He does need to have a PCP to work with so he advised us to fire our current doctor and find a new doctor as soon as we can.

There is still so much to digest. All in all, it went great and we feel like we are finally on the right track. Dr. Yazici is very hands on and very open to communication. He told us to email him directly and not to hesitate to call him if we need anything at all. He will need to see Brent every four to six months so we'll be going back again in not too long.

It is a huge blessing to feel like we are finally on the right track. Knowing that we have a specialist on our side, who is willing to help Brent get back to good health, means the world. It has been a long journey thus far and although we are far from the end, we are finally starting to see some light.

Thank you all for your continued thoughts and prayers. We are certain that it is because of the prayers and love from family and friends that we are strong enough to get through this. Happy Thanksgiving to all of you!!

Thanks, Girls!!

Hey Girls, you know who you are.....we love you! Thanks for all the great care of Natey. :)

Bring it on.....

So much news. First with Brent....my friend Nikki emailed me and said she thought we should look into something called Behcet's Disease. Brent and I couldn't believe the similarities. We are praying this is the answer. We found a doctor at NYU in New York City that is a top specialist in Behcet's Disease. We contacted him and his answer was quick and unexpected. He asked us to come to New York City and meet with him. We are thrilled! He cleared some time for Brent in his extremely busy schedule and we had planned to go to NY tomorrow to meet with him on Wednesday. (More about that in a minute.) We are praying that this is the answer and that Dr. Yazici will be able to help. The more we learn about Behcet's, the stronger we feel that this is the right path. We are truly thankful that Dr. Yazici is willing to see Brent on such short notice. I spoke with his patient coordinator and she said that he sees patients from all over the world. We feel so blessed that we live close enough to the city that we can travel there easily.

My mom arrived last Monday to help with the kids and stay with them while we're gone. We are so glad that she is able to be here. We have never left the kids while we've gone out of town so this is a big step for all of us. We pray that things will go well while we're gone.

As I said, we had planned to leave tomorrow. But of course, life can never be plain or dull or boring for us. Over the weekend, we had a little bit of drama.

On Thursday night I noticed that Nate had a sore on his upper left thigh. I just knew that it was a MRSA sore. Sure enough, by Friday morning, he was running a fever and the sore was huge, hard and hot to the touch. I called and made an appointment for him for that afternoon. By the time we got there, his fever was 102 and he was hurting so bad that he was shaking. The pediatrician sent us directly to the ER. They gave him some mild sedation and incised and drained the sore and sent us home with antibiotics. We were hoping that would do the trick. Sadly, it did not. By Saturday night his entire scrotum was swollen and red and full of infection. Back to the ER we went. They admitted him and on Sunday morning they took him down to surgery to incise and drain again. They wanted to do it in the OR so they could give him more sedation and make sure that they got it all.

That poor little boy! He has been in so much pain and I feel so badly for him. He spiked a fever of 104 last night and gave us all a scare. But, he has been fever free since then and they sent us home this afternoon. We are so glad!!

Needless to say, we have postponed our trip. Brent and I called this afternoon and they were able to reschedule his appointment for Friday the 13th. We are going to leave on Wednesday and spend a couple of days in NYC. Hopefully Brent will feel up to the trip.

So that's our crazy life. Not sure what I would do if things ever slow down around here. Maybe I could sleep. :)

Thanks to everyone, as always, for your love and prayers.

Nathaniel's Song

You know how certain things can trigger memories? Smelling cinnamon at Christmastime reminds me of family holidays when I was growing up. Hearing wind chimes reminds me of my Grandma's house. Watching "Hope Floats" reminds me of my friend Marcella.

For me, though, music is the strongest trigger. Sometimes I will hear a song on the radio that my dad used to sing to me when I was a child. Suddenly I am five years old again, standing on my dad's feet as he danced me around the kitchen while he sang to me. If I hear a song from my high school days I'm transported back to the Career Center during Marketing class with Ms. Boyd. And there's a certain Mindy McCready song that always reminds me of a guy I once thought I was in love with.

Today I heard Nathaniel's song. I never even realized he had a song until today. I was driving and it came on the radio and I was immediately overcome with emotion and memories.

It was a beautiful Fall afternoon in September, two years ago. The phone rang and it was Adoption STAR. I remember clearly the case worker introducing herself to me, as we had never met before. She explained that there was a baby boy born a couple of weeks previous and they were searching for an adoptive family. She told me all of his information -- he was a micro-preemie, born fifteen weeks early. He was very ill and they weren't 100% certain he would survive. Nevertheless, he needed a family and they were hoping we would consider adopting him. I can remember frantically writing everything down and hoping I wouldn't forget anything so I could repeat it all to Brent. I remember being totally speechless and trying to take it all in. And in my heart, I already knew this was our child.

While I was on the phone, Emmalee was watching "Piglet's Big Movie." This song was playing as I was learning all about our soon to be son. When I heard it again today, it brought back all the emotions, all the excitement and fear, all the joy. To me, this will forever be Nathaniel's song.

Prayers for Tyler

Tyler is having surgery in the morning to replace his g-tube. He's had the surgery before and the procedure itself doesn't scare me. I just hate having to put him through it at all. But, we know that the g-tube is necessary, especially for him to continue his chemo treatments. He is a brave boy and I'm sure he'll sail through with no trouble. He'll be inpatient at least one night, just to make sure there are no complications. Please say a little prayer for him.

Prayers are Answered

Hurry up and wait. That's how I feel lately. We seem to take one step closer to an answer only to fall two steps back.

There is good news, though. Actually, there is great, incredible, fantastic news. There is NOT yeast in Brent's blood! It took four lab techs at two hospitals but they are sure there is no yeast. I can't even explain what a relief this is. We found out yesterday that having yeast in your blood is extremely serious. On it's own, regardless of the original cause, it carries a 30 to 40% mortality rate. I'm not sure either Brent or I grasped the seriousness of it until they told us that. So finding out that it was not there was a feeling beyond relief. Once again we realize that prayers are heard and answered.

So, once again, we wait. They decided last night that since there was no yeast in his blood, and there aren't any test results back yet, he might as well come home. We are thankful. He is miserable but it is always easier to be miserable at home than in a hospital room. Besides, I may not be a great cook but I do a bit better than the hospital cafeteria. :)

We are praying that we will find out some results today. Some of the tests can take several days to come back. Some may be back today. I've got a phone attached to me at all times.

The day dawned bright and beautiful. A bit chilly but not in a bad way. The sky is blue and the sun is shining...a perfect Autumn morning. That alone gives me renewed hope. We'll take it one beautiful day at a time.

$1 Fundraiser

Well, as you can imagine, this whole thing with Brent being ill has taken a toll on our finances. He does receive disability pay but it is 60% of his regular pay. We are incredibly blessed that he has an amazing job and such awesome benefits.

My very sweet friend Kerri decided that she wanted to help. So she set me up with a Paypal donation button. If you can spare $1, that would be a huge help to our family!!

Thank you Kerri for your love and support!! We love you!

Brent Tuesday Update

Alright, here's what I know today. Brent spent yesterday in the ER and came home last night. They chose not to admit him. We were both surprised and apparently rightfully so. They called this morning and had us bring him back. There were some concerns in his blood cultures. One culture showed yeast. They aren't sure why his blood has yeast in it. Again, there is some underlying cause that no one seems to have an answer to.

We are thankful for the fact that the doctor called him back in. At least we finally feel like they are taking this seriously and working to get us an answer. Hopefully we should know something soon. They are finally taking active steps to come to a diagnosis.

Right now I am attempting to not let my imagination run wild. Attempting. It is hard not to worry. I have not allowed myself to go to Google. I'm not sure I'll get any answers anyway.

I just want answers that are real. I want something concrete and some sort of plan. My friend Amy gave me the greatest analogy today. She said that this whole situation is like being a swimmer that is stuck on the starting block. They put you up there and tell you to get ready and then leave you there. Then your legs start to cramp up and your back starts to hurt and you are just praying that someone will finally give you the okay to jump in and swim. You don't even care what stroke they want you to swim, as long as you can get in the water. Right now that's how I feel. We have been on the starting block for so long. It's time to start swimming. As long as we know what we're facing and what we can do, we'll be okay.

Thank you to everyone for your love and prayers and support. I can not imagine doing this without you. We are finding so much strength through others right now and we love each of you so much!

I'll update again when I know more.

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!

Swine Flu

We've had a Swine Flu scare around here. We're still waiting on Brent's test results. He has been miserable with all the classic Swine Flu symptoms. I feel pretty yucky myself though it hasn't hit me as hard as him. None of that really matters....all that matters is making sure Tyler doesn't get sick. His oncologist went ahead and started him on Tamiflu as a precaution and so far he is doing fine. We just pray that we started it soon enough.

Grab Your Tissues

I saw this story online this morning and just couldn't help but cry. Grab some tissues before you read it!

Update

It has been quite awhile since my last update. Here goes....

First and foremost, Tyler is doing well. We still have our challenges, especially during "roid rage." But, for the most part, we are holding steady. He continues to amaze us each day with his strength and perseverance. He had clinic last week and he did great. His counts have been pretty typical, no real alarm bells. We just pray each day that this will continue and that we can get through the next ten months without any major issues.

I stay very positive for the most part. But then I will hear about another child who has relapsed and it freaks me out. I try hard not to imagine what that would mean in our own lives. But cancer is not predictable. All we can do is live day to day, be thankful for each moment we get, pray and fight!

In other news.....Nathaniel had his rectal biopsies done and, thank goodness, it does not appear that he has Hirschsprung's disease. He did show ganglion cells in his tissue samples. This is both an answer to prayers and frustrating because we are back at the beginning. Don't get me wrong; I am VERY thankful that he does not have to have surgery or a colostomy. I just wish we had some more definate answers. However, we both trust his doctor and know that he will help us get through this. For now the plan is to increase his dose of Miralax and begin adding additional medications to help ease his constipation. If this doesn't help, we will explore some other options. Dr. Rossi thinks that because he was a micro-preemie, he may just need continued time to grow and he may grow out of this phase. We certainly hope that is the case.

Emmalee, Nathaniel and I got back from our trip last Monday. Please let apologize to all of our friends and family in Utah. We literally had less than 24 hours in Salt Lake. We drove straight from the airport to Elko when we arrived, drove straight through to Wyoming the next weekend and then spent less than 12 hours in the hotel before we flew home. I am so sad that we didn't get to see all of you! I guess this means we'll just have to come out again....or you'll have to come and visit us!!

We had a great time, minus the fact that the kids were sick for a few days. They both ended up with a nasty stomach virus and then poor Emmalee got a urinary tract infection. Not fun. As Emma said, "you're not apposed to get sick on cation." So true!

The rest of our trip was a lot of fun. My oldest niece graduated from high school. I'm still not sure if I believe it or not. Where did the time go? It was a blessing to be there and spend time with my family. I can't believe how much I missed them! It is very hard to live so far away.

We spent the second week of our trip in Wyoming, spending time with my dad and my grandma. My grandma has Alzheimer's and her memory is really starting to deteriorate. I am so thankful that I had time with her! She is one of the kindest, most loving people I have ever known. It was just incredible to be home with her and have that time together.

On our way back to the airport we stopped and spent time with my aunt, uncle and cousins. That was so much fun! I just wish we had more time together.

I think Emmalee's favorite parts of our trip were spending time with her cousins and following my dad around like a puppy. She had so much fun! She tells me every day how much she misses everyone and wishes we could see them. I agree!

Tyler did alright while I was gone. Brent said he asked for me quite often. I expected him to be thrilled to see me when we got back. He wasn't, at least not at first. It took him several hours to really pay attention to me and a couple of days for him to get over being mad at me. Poor kiddo. As much as I enjoyed my trip, I don't think I will ever be able to leave him for that long again. Thankfully he had his daddy home with him during the evenings and weekends and our amazing friend Hannah with him while Brent worked.

I have a million pictures to get posted but that will have to wait for another day. :)

All in all things are going well. Thank you to everyone for your love, prayers and support. It is because of you that we make it through this fight every day. We love you all!

Thank You!

Emmalee has truly enjoyed her time in Nursery School this year. Tomorrow is the last day. I'm not sure which of us is sadder to see it end. Although, her reasons are probably different than mine. *smile*

I wanted to do something special for her teacher and the assistants. I really wanted to avoid the typical teacher gifts but I am painfully non-creative. Never fear, Google to the rescue! I found this super cute idea and it was very, very easy as well as affordable. We got each of them a small plant. Then I took a picture of Emmalee and went to the store to one of those photo machines. I added text and a border to the picture. The picture says "Thank you for helping me grow," along with her name and the date. Emmalee decorated the little pots to make them extra special. They ended up being around $3 each.

Thank goodness for Google!

Music Education

There are many things in this world that I simply don't understand. One that always upsets me is when I hear that schools have had to cut music education programs due to lack of funds. I truly believe that music should be as fundamental as reading, writing, math, etc.

I have seen music work wonders in my own family, especially for Tyler. Watching him engage with his Dad while Brent plays the piano is incredible. Seeing him interact with his music therapists is amazing. It has opened up his level of communication and brings him out of his shell. I simply can't imagine him not being able to experience this in school....or any of my other children, for that matter.

Here's another example of the importance of music education in schools.

Be The Match!!

From now until June 22nd you can sign up to be a bone marrow donor for FREE! By joining the registry you could potentially help save the life of someone with cancer. You can sign up through the mail. It's quick, easy and painless. Please take advantage of this great opportunity to sign up for FREE today!!!!

Emma-Isms

"Mom, please stop talking to me like that.  I can't stand it.  Don't you even know me at all?"

"Don't worry about me, Momma.  Just be worried about yourself."

While emptying the dishwasher......"I can hold sharp knives Mom.  I'm really very asponsable."

My all time favorite...."You're a great Mom!"

Mark & Janet

This may be a long shot but I feel compelled to post this on  my blog.  We have some amazing friends named Mark & Janet.  They have been hoping to adopt for three years.  Please, if you know anyone who may be interested in placing their child for adoption, forward this video to them.  I can't think of anyone else who would be more kind, loving and committed to a child.

Never A Dull Moment

Sometimes I wonder if good health will ever come back to our family.  I try not to complain, really I do.  But sometimes I think that I'm one big complaint factory.  Here's the latest.

*Disclaimer - This first part is all about poop.  Read at your own risk.  

Since bringing Nathaniel home, we have struggled to get him to poop regularly.  He never really has.  We have tried Miralax, enemas, different formulas, prune juice, etc.  Nothing seems to help.  He generally poops about every two weeks or so....and when he does it is awful.  He screams in pain.  The stool comes out hard and huge.  We just want to cry for him.  His stomach is very distended.  He looks like a little pregnant woman.  It is so sad!

I have taken Nate to the doctor and they have told me that it isn't unusual for micro-preemies to have issues with pooping.  Sometimes it just takes their little bodies longer to get everything working right.  They gave us new things to try.  We've tried to no avail.   

As you know, Tyler has Hirschsprung's disease and he has a colostomy.  Hirschsprung's is a genetic disease, meaning it is something you are born with.  There is a section in the colon and intestine that is misshapen.  Therefore, once the poop gets to that point, it can't go on.  The misshapen section is missing the necessary cells, called ganglion cells.  This prevents you from being able to poop, causing constant constipation.  Most children are diagnosed with Hirschsprung's shortly after birth when they fail to pass the meconium.  This is how it was for Tyler.  They realized right away that he was sick and he had his colostomy placed very early in his little life.

Sometimes kids aren't diagnosed until they are older.  I didn't realize this until just recently and didn't really think that Nate's problems could be Hirschsprung's.  However, I started reading more about it and realized that some kids are diagnosed later on.  I decided it was time to call Tyler's GI doctor and get Nate in to see him.

I took him in a couple of weeks ago and the first thing the Nurse Practitioner said was that she suspected Hirschsprung's.  I was really hoping she was wrong and that maybe there was some other explanation.  She did switch him to a soy based nutritional drink,  just in case it was a milk protien allergy.  She also ordered a host of tests, including a barium enema x-ray.

Nate had the x-ray last week and it showed the classic signs of Hirschsprung's.  There is a section, just near the rectum, that is misshapen.  The saddest part of the x-ray was seeing just how much poop is backed up into his intestine.  The radiologist pointed it out to me and I could clearly see it, all the way up.  It went almost all the way to his appendix.  That made me cry.  No wonder my poor baby is in so much pain and agony.  No wonder his tummy is so big.  After seeing that, I was almost hoping it was Hirschsprung's just so we would have an answer and be able to get him some relief!

The only sure way to diagnose Hirschsprung's is to do a rectal biopsy.  They take tissue samples from the sections that are misshapen and if they are missing the ganglion cells, that is the certain diagnosis.  Nate goes in on Tuesday for the biopsies.  Once we have the results, we will know for sure and we can make a plan.  He may have to have a colostomy and he may not.  It just depends.  Either way, we are ready and hoping that we can just get him some relief.  

Okay, that's the end of the poop story.  :)

As for the rest of our health issues....my foot is infected.  Not sure what that is all about.  I went in to have my stitches removed on Wednesday.  For a few days before that I had felt kind of yucky.  Running a slight fever, chills, extra tired, etc.  I thought maybe I just had a cold or something.  Apparently not.  The incision site is infected and there is redness all around there as well as in the ankle and foot.  My foot is swollen about three times the size it should be.  Needless to say, she started me on some strong antibiotics.  Hopefully that will knock it out.  Honestly, this darned ankle is just one frustration after another.  

The kids are sick.  Again.  Both Emma and Nate have yucky coughs, runny noses, and complaints of ear pain.  They are headed to the doctor today.  Tyler has a yucky nose but none of the other symptoms, thank goodness!  We are on constant fever alert for him but so far he has been doing well.  

I suppose that's it for my complaints today.  :)  I'll update as I know more about Nate.  As always, your prayers are greatly appreciated!!

The Emmalee Tree

We rent our house from the greatest guy!  He is truly kind and we are so thankful for him and for our nice home.  Also, Emma has him wrapped around her little finger.  :)  

Jason was here planting some new trees the other day.  He is always very good about including Emmalee as his "helper".  They planted this cute little tree and he snapped a picture of her.  I'm curious to see who grows faster!!

Points To Ponder

For as long as I can remember, my grandma has had a plaque hanging in her hallway. It reads, "Never Judge Another Indian Until You Have Walked A Mile In His Moccasins."

As a child, I never really understood what that meant. As an adult, I am beginning to comprehend.

It is so easy to look into the lives of others and question their actions, motives, etc. It is easy to look at others and think how easy they have it and wish to switch lives with them. It is easy to look at others and judge, one way or another, good or bad.

The hard part, at times, is loving people no matter what. Loving them and accepting them and lifting them when they're down.

I'm learning. I'm learning that even if you go through the exact same experience as someone else, you will handle it differently. You will get something different out of it. You will learn different lessons. You will apply those lessons to your own life and your own circumstances. Perhaps your choices are right and perhaps they are wrong. There are many times when you will go back and reevaluate, try again, learn something new. That's all part of life.

Brent and I have been through some of the most difficult experiences of our lives in the recent past. We have struggled. We have tried hard to understand the lessons that our trials are teaching us. We have tried to apply those lessons to our lives and allow them to strengthen us. Sometimes it is easy and sometimes it isn't.

Through it all, we have been lifted and loved by others. We have been strengthened and helped. We could not make it through our trials without the love and help we have been given. We have been sent Earthly angels and because of you, we have made it. We will never have the words to thank you. You are truly loved and appreciated.

Surgery Update

Surgery went well yesterday. I was in and out in about four hours. What I didn't anticipate was how awful I would feel afterwards. I threw up quite a bit yesterday which has never really happened to me after surgery. I was really surprised considering it was a minor procedure compared to the others.

Today hasn't been much better. Thankfully the throwing up is over but I feel like I was hit by a truck.

Hopefully tomorrow will be a better day!

For those of you who are curious, I did keep the screw she removed. I'll post some pics soon.

Thanks to everyone for checking in. I truly appreciate your love and support!!

But Not That Much!

I haven't posted any Emma-isms for awhile.  That isn't to say that there haven't been any.  Here are a two of the latest.....

This morning Brent was digging through our loose change container to find some quarters. Here's the conversation between he and Emma.

Emma - Daddy, get out of my money!!

Daddy - This is your money?  I don't see your name on it.

Emma - But it IS my money.  Get out of there.  Quit stealing my coins.

Daddy - Emma, I don't see your name on it.

Emma - Mommy, can you put my name on that?

This afternoon Emmalee was irritated with me for one reason or another.  I finally told her that it was time for nap.  I gave her her juice and she headed down the hall.  I said, "Emmalee, I love you."  She turned around and yelled, "Yeah, I love you too!  But not that much!"  At least I know she loves me.

True Beauty Comes From Within

Please watch this incredible video.  

And then read this article.

Baby Steals

If you have children, (or even if you don't,)  you have to check out Babysteals.

Baby Steals is an amazing website.  Each day, at 9:00 am MST, they post a new "steal".  It is always something fun and always at an incredible price.  For example, I have purchased Robeez Shoes, Teething Bling jewelry for moms, Signing Time videos, Zoobie Pets, Baby Legs and a host of other items all at savings of at least 50%.  They only have a limited number of each steal per day and once they're gone, they're gone.  Let me tell you, nothing makes me cry harder than the fact that I missed some adorable Robeez for Nate the other day.  They were only $18.47 and they were gone in a flash.  I'm still sad!

I generally have myself planted at the computer at exactly 9:00 am MST every day so that I can check out the daily steal.  I get super excited when I get an item.  I have purchased a few things that I otherwise wouldn't be able to afford.  I also like to try things that I may not otherwise purchase but because it's such an awesome deal, I try it out.  

Babysteals is having a birthday and they are giving away a $150 gift certificate.  I'm thinking of how many amazing steals I could get with that!  Check them out!!

One More Surgery....

Just a quick update.  I went to the doctor yesterday.  Things are looking good.  My ankle is finally  healing correctly.  The area where she added in the bone graft is filling in.  The tendons and ligaments are healing.  Overall, it's good news.  The best news is that I can walk!  I have to wear my boot for awhile longer but that's okay with me.  Walking is a beautiful thing.  

I do have to have one more surgery next Friday.  I have a really long screw across the joint in my ankle and she wants to go ahead and take it out.  I'm glad.  I can feel it when I walk and it isn't pleasant.  I will be really happy to have it removed.  I kind of want to ask her if I can have it after she takes it out.  Is that weird?  

I do have quite a bit of pain when I walk.  I'm sure that will just get better over time.  It's bound to be painful after not really walking for the past eight months or so.  I also have some areas of numbness in the top of my foot.  She's hoping those will get better after she removes that screw.  They may not.  I may never have full function in that ankle again.  She said it will very likely always give me problems with pain and weakness.  There go my hopes of winning the Boston Marathon.  :)

Everything To Me!

Dancing Machine

Tyler LOVES to dance!  He really gets into it.  Enjoy!

Make a Smilebox slideshow

ABC's & 123's

This is a pretty big file and takes awhile to load.  But, if you can get it to work, it is so worth it!!  Enjoy!

Make a Smilebox postcard

Family Fun

Make a Smilebox scrapbook

Tyler LOVES to slide!

Make a Smilebox scrapbook

Emmalee's Fourth Birthday

Make a Smilebox scrapbook