The Fun Never Ends

I went to the doctor yesterday for another follow up on my ankle.  Unfortunately it is just not healing correctly.  The screws that she put in during the original surgery caused a fracture.  The fracture is worse which has cause the bones to heal improperly.  It's hard to explain without showing an x-ray.  I have been in a great deal of pain and the swelling never really went down.  When she started to fiddle around with it yesterday I nearly cried it hurt so bad.  She gave me two options...surgery next Monday or surgery on the 16th.  Yep, I'm headed back in.  I chose the 16th. This time she is going to take out the screws so she can determine the level of damage.  Then she is probably going to put a metal plate in there instead to secure the bones.  Yikes!  Sadly this means yet another twelve weeks of no weight bearing on the right foot.  No driving.  No solo shopping trips.  No going downstairs to the laundry room.  (Oh wait, that's the one good part!)  

I am more than a little disappointed.  I'll admit it, I had a good cry.  I am really not looking forward to doing this again.  I was fairly certain that something wasn't right but I was praying that it wouldn't require another surgery to fix.  

The good news is that my mom is going to be able to come back and help out.  

I guess we're starting 2009 off with a bang after all!

Humbling

A few weeks ago we were asked by the oncology social worker if we would be willing to give an interview about our family for the paper.  We were a bit surprised.  We said we would, believing that they would be doing stories on several families for their Christmas edition.  The reporter came to our home, as well as a photographer, and we were able to talk about our favorite people in the whole world -- our kids.  :)  We assumed that it would be a small story, again thinking that there would be other families featured.  We asked the reporter where the story would be so we could look for it.  She told us it would be on the front page.  We were more than a little surprised.  

The article came out today and we are very happy with how it turned out.  You can read it here,

http://www.democratandchronicle.com/article/20081225/NEWS01/812250330

2008 Isn't Over Yet

Based on the events of the last few days, 2008 refuses to end without a fight.  On Friday night I slipped and fell....shocking, I know.  I tripped over Brent's shoe in the breezeway and thought I broke my shoulder.  A quick, (sort of) trip to urgent care and an x-ray later....my shoulder is sprained, bruised and very sore.  The doctor gave me a sling to wear.  I laughed out loud.  Seriously.  I don't think he was amused.  

When I fell I also hit the side of my face pretty hard.  However my shoulder pain was worse than my face pain and I didn't really focus on it.  I did think it was strange that I didn't end up with a black eye.  Then tonight when I was eating dinner I bit down and my molar on the bottom left broke.  Apparently I broke the tooth in the fall, hence the pain, and it didn't come loose until tonight.  There is a pretty good sized chunk missing.  Nice.  The nerve doesn't seem to be exposed so that's good.  Here's the thing.  I don't like going to the dentist.  Okay that's saying it mildly.  I am afraid of the dentist.  For real.  I haven't been in way too long.  I won't tell you how long.  Suffice it to say I don't have a dentist here.  However, my friend Teri sees a dentist whoseo office is literally right next door to our house.  I called his office tonight to see if they do after hours care.  They don't but they did leave an emergency number.  Turns out it was the doctor's  number and he actually answered the phone himself.  I was shocked!  He is the nicest guy and he will for sure be my dentist starting on Monday.  He gave me some good tips on how to get through the weekend with my broken tooth.  I will call Monday morning and walk over.  I think this is God's way of telling me I need to take better care of my teeth.  

As if all this weren't enough, Brent woke up today with a very swollen, red hand.  Yep, his infection is back.  Lovely.  He went to the doctor and got another antibiotic along with some more pain meds.  Hopefully we caught it early enough.  

How many more days in 2008?  I am so ready for it to be done!

Merry Christmas

I can hardly believe that Christmas is just a couple of days away. It has been a very long, very difficult year. I have really been trying to write a Christmas letter. I just can't seem to put into words all that has happened in 2008.

This has been one of the most difficult, exhausting, trying years of our lives. Tyler was diagnosed on Leap Day this year and it seems like our world has been upside down ever since. Brent has been in and out of the hospital. I fell and broke my ankles and had surgery. Tyler has been in and out of the hospital. We've had to juggle medical issues with trying to have a normal family life. Most days seem to run into one another and there are days that we just get through moment by moment.

And yet this has also been an incredible year. We have been incredibly blessed. We have met people we otherwise would never have known. Yes, it has been difficult. But Heavenly Father has helped us every step of the way. Yes, there are days when we cry and question why. But Heavenly Father always puts someone in our path that helps to lighten our load. Yes, it is heartbreaking to see our perfect little boy suffering and in pain. But Tyler has shown such great strength and power. His example has helped us get through this. 

If I have come to realize anything through all this it is that we are strong. Stronger than we ever realized. Stronger than we ever thought we'd have to be. We have a strong marriage. We have amazing children. We have loving parents and family members. We have been loved and cared for by friends and strangers. We have been helped and strengthened by so many. No matter how difficult things have been, there has always been someone there to ease the burden.

We know that Heavenly Father loves us and watches over our little family. We know that He has sent earthy angels to lift us and love us. We know that He will always be there to guide us. We have witnessed firsthand how when God closes a door, He opens a window. 

We know that we have been so richly blessed this past year. We have not been blessed in spite of our trials. Rather, we have been blessed because of them. We hope and pray that we can continue to see the blessings in our struggles.

May each of you have a very blessed Christmas. May we all remember the joy and peace that our Heavenly Father and our Savior bring.

Too Funny

I realize this might not be funny to anyone but me but since this is my blog, I am writing it down so I don't forget.  

Yesterday Brent & Emmalee went to Wendy's.  She got a kids meal and the prize was a Snoopy keychain thingy.  She didn't know who Snoopy was so she asked me several times what his name was.  Fast forward several hours to around 4:30 this morning.  (Emmalee was up all night but that's another story!)  Anyway, I finally got her back to bed and she was freaking out because she wanted her Snarky.  She kept crying and getting frustrated and wanting Snarky.  I could not figure out who on earth she was talking about and then she found it under the covers.  It was Snoopy.  I got the giggles like crazy.  Could be because it was really funny.  Could be because it was 4:30 in the morning and I hadn't slept yet.  Either way, I got a kick out of it!

Emmalee has been kind of a picky eater lately.  She hasn't wanted much of anything.  I try not to push her too much, I always figure she'll eat when she is really hungry.  The other night for dinner she wanted plain spaghetti noodles with butter so that's what I fixed.  She sat down to the table, took a bite and said, "mom, you're the best maker in town!"  

Christmas Music

Emmalee LOVES to sing.  She sings all the time.  She sings well known songs and songs she makes up.  She has been learning lots of Christmas songs at school.  Yesterday she came home singing Deck The Halls.  She only knows the first line and she sings it over and over and over and over again.  This is how it goes, according to Emma...

Deck the halls with pals of olley....la la la la la la la.

Hopefully she will learn the remaining verses soon.  

Emmalee's Christmas List

Emmalee just dictated her list to Santa for me.  She is a hoot!  Here's her list for her, Ty & Nate.

Dear Santa-

I want a princess doll with lots of stuff, an Elmo kitchen, my own 'puter, a new dolly, a new pen and skates.

Tyler wants to get a new holiday decoration, a new fan for the ceiling and a new toy like a bouncy ball that changes color.

Nathaniel wants a new picture of me & mommy, skates for when he's big and a new music toy like the music box we have at school.

Also, I want Tyler to be home for Christmas and not at the hosapole.

Love,

Emmalee

Unexpected Gift

A few weeks ago I came across a group called the COLE Foundation.  I emailed them and shared Tyler's story and asked to be added to their prayer list.  They quickly obliged and we are so thankful to know that countless people, strangers, are praying for Tyler and our family.

Today in Tyler's Caringbridge guestbook there was this message...grab your tissues!!

I made a slideshow to wish everyone a Merry Christmas from the COLE Foundation. There are a select few children (19 to be exact, and it was very hard to chose from the 500+ children we have) who are featured in the video. However, I chose your child to be in the slideshow. Please go take a look at it. http://www.onetruemedia.com/otm_site/view_shared?p=7920cacbfb3135bcc73d9e Merry Christmas COLE Foundation

Beth White

Life In The Fast Lane

That's how I feel lately.  We have been on overdrive for so many months.  I am really praying that we have a peaceful, HEALTHY Christmas.  

I am way behind on blogging.  I have so many new pictures of the kids including Nate's first birthday update from September, Emmalee's first day of pre-school and super cute pictures of Tyler.  Hopefuly I'll get them all posted before Christmas.  

My mom leaves today.  I'm not sure what I'll do without her here.  She has been such an incredible help over these last three months.  I simply can't imagine how we would have made it through without her.  It is going to be strange to wake up tomorrow morning knowing that she isn't here.  The kids are really going to miss her!!

We have yet to put our Christmas tree up.  I'm hoping to get it done before the end of the weekend.  I am never this late in decorating.  I think part of my delay is knowing that Tyler and Nate probably won't leave the tree alone and it will be a constant battle to keep them away from it.  Should be fun!  We learned a couple of years ago not to put any presents under the tree until Christmas eve.  I think we'll have to do that again this year.

Updates

Lots to report.....let's see.....Clinic went well today. Ty got Methotrexate, Vincristine and IVIG. He also started a cycle tonight which means 'roid rage. Hopefully it won't be too bad. His immunoglobulin counts are coming up which means the IVIG is doing its job. He is gaining weight, slowly but surely. Thankfully he is doing really well!

Thank you all so much for your continued love, support and prayers. We truly could not make it through without all of you!!

Brent Wednesday Update

Ty is doing well. He has clinic on Friday and starts a new cycle. It will be a long day with IVIG and such. Luckily we won't have to go back for three weeks. Gotta love that! Brent is still not doing great. The pain isn't much better. His hand and arm are still very red and swollen. Then last night when Emma and I were visiting him I noticed that his left arm was getting red and swollen also. We told the nurse and then I marked the redness with a pen. About an hour later the redness had grown outside the line quite a bit and his whole arm was hot. They took him down for an ultrasound of his left arm and discovered that he had a blood clot. Yikes! They are treating it with blood thinners and such. Not sure what caused that. They are obviously watching him very closely and still trying to determine what is causing the other infection. They don't have any blood culture results back, as far as I know. So, that's where we stand this morning. I will update more as I know. Thank you to everyone for your love and prayers for our whole family.

Brent Update

Brent had a horrible night. He is in agony. The pain is now all the way up his arm and into his shoulder and underarm. He wasn't able to sleep last night because of the pain. They took him down for x-rays this morning and he has been seen by several doctors including infectious diseases. He is in good hands as far as his care goes and I know they are working hard to figure out what is going on with him. I just hope and pray that they will get it under control soon, figure out what is happening and get him home! I'll update again as I know more.

Just Another Night in the ER

Yep, it's true.  Seems we can't go for more than a few weeks without a visit to Hotel Strong.  This time it isn't Tyler or me....it's Brent.  He has a nasty infection in his right hand and arm now.  His hand has been red and swollen for a couple of days.  By this afternoon the redness was streaking up his arm and his whole arm was hot.  Thankfully we got him to the ER before it got much worse.  They didn't give him any choice, he was admitted right away.  He'll likely have to be there for two or three days to get a good round of IV antibiotics going.  They think it is likely MRSA, given his history of that.  

Thank goodness my mom is still here.  I'm also thankful that I am now more mobile and able to drive.

Christmas Card Picture Attempts

It is a never ending battle in our house to get a decent picture of the kids for our Christmas cards.  The whole thing just cracks me up.  I can get one or two of the kids to look at the camera at the same time but never all three.  One will smile and the others won't.  They'll all smile but be looking the wrong direction.  Nathaniel just tends to look bewildered at the whole thing.  They are just too funny.  Here are the most recent attempts.

Usborne Books at Home

Hi All!

I have recently begun a new and exciting business with Usborne Books at Home.  Usborne Books are amazing!  A child's interest in reading and learning is stimulated by the lavish illustrations and informative content.  There are over 1300 bright, colorful and fun titles covering activities, puzzles and a wide range of subjects for children of all ages.

To get my business started, I am hosting an eShow and you are invited!  You can shop online, in your own time, from today until Saturday, December 6 at 11:59 pm.  I wanted to end the show in plenty of time for you to get your holiday shopping done and receive your orders.  Usborne Books make wonderful holiday gifts for every child on your list!

Usborne Books - the books kids love to read!

Hosted by: Jodie Gardner
Place: www.ubah.com/HOS133068
When: Today thru 12/6/2008 11:59:00 PM
 

Everyone is welcome, so invite a friend.

It's a rewarding experience when a child opens a book and discovers the magic of reading.

Please let me know if you have any questions!  Enjoy your shopping experience and most of all, enjoy your Usborne Books!!

Learning To Walk Again

Finally, after thirteen long weeks, I was given the green light today to start walking again.  Of course, I will have to wear my boot and it will be awhile before I can walk without it but at least I'm making progress.  She also said I can drive when I'm ready.  I'm not yet but at least I know that she says it's okay.  

I will have to start physical therapy again, two times a week for six weeks.  They will come to the house, though, so that's a huge blessing.  I know my leg is very weak.  Even the little bit of walking I've done today is making me sore.  That's okay, though.  I'd rather be a little sore from walking than not be able to walk at all.

In other news....Tyler is doing well today.  He is more tired than usual but seems to be feeling well.  What a blessing!  I am so thankful that we are home and things are settling down a bit.  Thank goodness my mom is still here!  I don't know how we would have made it through these past few weeks without her help.

Tomorrow is going to be a long day in clinic.  Tyler has to have a lumbar puncture with meds and that always takes awhile.  He also has an appointment with the GI docs to follow up.  

Brent has to go out of town for work on Saturday.  Once again, I'm glad my mom is still here.

Fun Contest!

Check out this fun contest over at 5minutesformom.com  You could win a $500 grocery gift card!!

Here are pictures of Emmalee making and eating scrambled eggs on her first day of pre-school!

Home Sweet Home!

We got home this afternoon and Tyler was so excited! He has been in a great mood all day and I know I am just as excited as he is. Thanks to everyone for your continued love and support!!

Tyler Tuesday Update

Sorry for the late update. Ty had a pretty good day today. He went down for an ultrasound of his pancreas pretty early this morning. We haven't heard any results yet but I'm assuming things are okay. When we got back, he was sleepy and climbed up on my pillow and laid down. I decided that was too good an opportunity to pass up so we napped until noon! He is such a snuggle bunny. The afternoon was fairly calm. Dr. Asselin came in and said that things still look good for going home tomorrow. Ty's blood cultures are still negative for bacteria. The new antibiotic seems to be working fine with no reactions. I learned how to use the pump for his feeding tube today and that is pretty simple.  So, we're crossing our fingers and toes in hopes of going home tomorrow. I'll keep you posted!!

Tyler Monday Update

Tyler is having a pretty good day today. He has been entertaining all the doctors and nurses with saying his ABC's and singing songs. He knows how to ham it up!

Dr. Asselin is on service this week and when they came in to do rounds this morning she said she thinks it will likely be Wednesday before we can go home. She wants to make sure everything is in place as far as the IV antibiotics and such. She also wants to make certain that Tyler's blood cultures continue to be negative so we don't risk having to come back in. Also, we need to make sure that GI is on the same page and everyone feels confident with him going home. He will also have to go home on tube feeds so we'll have to learn how to do that. So, we're looking at a couple more days. As much as I want to get home, I also don't want to go sooner than we should. Goodness knows I don't want to have to come back anytime soon.

They weighed Ty this morning and he has gained a little more than a pound since he was admitted. That is very encouraging. He is looking a little puffy and such in his face so they took him off his fluids for awhile to see if that helps.

All in all, things are going well. I'll update again as we know more.

Tyler Sunday Update

Another quiet day, for the most part. Tyler seems to be feeling better today. He and Daddy slept quite a bit and I think he got more caught up on some much needed rest.

The good news is that he has tested negative for bacteria in his bloodstream for the past two days. That is one of the requirements for going home. The other good news is that they narrowed down the type of bacteria he had. Dr. Bruckner felt much more confident today knowing what it was. That made us feel much better. The antibiotics he is on seem to be doing the trick. He'll have to go home on IV antibiotics for awhile but that is totally doable. 

His g-tube feeds are going well. We're praying that the combination of increased nutrition and the proper antibiotics will be just what he needs to finally start feeling better. 

There is talk of possibly going home Monday. I think they want to see what the GI docs have to say and make sure, once again, that his blood cultures come back negative. We'll keep our fingers crossed. 

Thank you to everyone for the nice guest book comments as well as the love and prayers. Those prayers must be working! We love you all. I will update again tomorrow.

Tyler Saturday Update

Not a lot of news today. Brent stayed with Tyler last night and it was nice for me to come home and sleep in my bed. I sure missed them both, though. 

Dr. Bruckner, Tyler's primary Oncologist, came in today to check on him. She is worried since Tyler's infection is in his blood. The fact that she is worried makes us worried. She is thinking of running some more tests tomorrow. We'll see what she decides.

Ty hasn't had anymore of the shaking & fever episodes. They have been giving him Benadryl and Tylenol before they start the antibiotic and that seems to do the the trick. Hopefully that won't happen again.

Hopefully we'll have some more answers soon. I am staying home again tonight. Hopefully Brent & Ty can get some rest.

Tyler Friday Update

It has been a long week! I came home tonight to stay for the weekend and Brent is staying at the hospital with Tyler. The past 24 hours have been pretty busy. After Ty got the fever yesterday, they started him on some antibiotics. He never did throw up again, thank goodness. The blood cultures came back and he does test positive for some bacteria, meaning he does have an infection. They're still trying to narrow down exactly what it is but they switched to a different antibiotic in addition to one that he was already on. About 11:00 last night he got really shaky, irritable and pale. His heart rate was very high and he spiked a fever again. He was shivering so hard. His nurse came in and then quickly went out to call the doctor who called another doctor. Soon we had the docs in checking him out. They thought he may have had a reaction to the new antibiotic. They pumped him full of fluids really quickly and gave him some Tylenol. He seemed to settle down and then he was exhausted. Poor little man. I was so worried about him that I couldn't sleep. I finally fell asleep only to hear his heart monitor going off again around 7:00 this morning. He had the same reaction again and his nurse called in the doctor again. They pumped him full of fluids again and that plus the Tylenol helped.  Today during the day they went ahead and gave him a blood transfusion. His counts were a little low and they were hoping that would help.  This evening right around 7:00 Ty had another shivering, fever, heart rate episode. It happened after they did the antibiotic again. We're not sure if they are going to eliminate this antibiotic but that seems to make the most sense to me. We'll see what they decide. Brent said it didn't last long but I think we knew the warning signs and caught it early and gave him the Tylenol right away. Poor little guy! They said that he will probably be there several more days until they can figure out exactly what type of infection he has. Plus he has to be infection free in his blood cultures for 48 hours before they will release him. He will have to come home on IV antibiotics but that's nothing new.  They also decided that he was not getting enough nutrition and finally started him on G-tube feeds tonight. Brent and I have been asking about this for the past few weeks so we were really glad they finally made a plan and got those started. Of course, he has had such horrible diarrhea that they were trying to give his tummy a break too.  So, that's where we are tonight. I hope he and Daddy can get some rest. I will update again tomorrow. Thank you all for your love and prayers. If you haven't signed Tyler's guest book in awhile, please do. We love hearing from you!!

Tyler Thursday Update

Well Tyler certainly knows how to keep the folks here hopping. I guess he likes it here too much. He spiked a fever of 101 this morning and had a heart rate of 156. He also threw up in his bed. Not sure what is happening now. They gave him Tylenol right away which seemed to kick in quickly. They have him on a heart rate monitor which he hates! His heart rate is still running a little high and his blood pressure is too low. They started him on two different antibiotics just to be proactive in case he is getting some sort of bacterial infection. They also took blood in order to culture it and find out if there is something going on.

Like I said, Ty likes to keep us hopping. They did move us into a bigger room. Actually, we're back in room 28 which is where we spent the first eight weeks after he was diagnosed. They brought me in a hospital bed so I don't have to sleep on the horrible fold out recliner that we have nicknamed the crippler. It's not home but at least we'll be more comfortable. I didn't get to my doctor's appointment. I'll have to try and go another day.

I'll keep you all posted as we know more.

Tyler Wednesday Update

Not a ton of news tonight. Still waiting on some of the test results. Ty did have an ultrasound of his pancreas today. It didn't show much because they forgot to tell us that he shouldn't eat for four to five hours before the test. They may end up repeating the test tomorrow but we aren't sure yet. 

They are thinking that all of this is related to one of the chemo drugs, L-Asparaginase. He gets that as an injection once a week. They said that sometimes it can start causing issues with organs, stomach, pancreas, etc. The good news is that Tyler only has four L-Asparaginase injections left. We're hoping that maybe these issues will go away after that med is done. In the meantime, they started him on some pancreatic enzymes today and they also switched him to a lactose free diet. 

Tyler is still having diarrhea and still seems to be in pain anytime he eats. I guess we'll just have to give it a little time to see if these steps help. They don't want to release him until this is under control. 

So that's where we are at this point. Thanks to everyone for the continued prayers, emails, guestbook comments, etc. You are all incredible!

On another note, I go to the doctor for my right ankle again tomorrow. With any luck, she will give me permission to start putting some weight on my foot. I am sooo ready to get moving again! I'll keep you posted.

Tyler Tuesday Update

We're still here. We did get some answers today. First, Tyler's pancreas doesn't appear to be working properly. The question now is why. There are differing answers on that. They are going to start giving him some pancreatic enzymes to help replace what is being lost. Hopefully they can come up with the reasons why this is happening. 

There is also some concern because his counts are really low...even more so than they would be with a regular chemo cycle, and they don't appear to be recovering as quickly as they should. Also his glucose levels are low. Not sure what the cause is for these things either or if they're all related.

The upper GI test that he had yesterday showed that there are no blockages in his system. Instead, things are moving through way too quickly, thus resulting in malabsorption. So at least we know for sure that he isn't absorbing anything. Again, though, the question is why. 

So now that we know a little of what is happening, we need to try and figure out what is causing all of these issues. We still don't have any ideas as to when we will go home. Ty is still struggling with sever diarrhea and stomach pain. That has to be under control before they will let us head home. 

So for now, we wait. They took more blood and samples today so we'll have to wait and see what the results are and hopefully we'll get some information. I will update again when I know. Thanks to everyone for your love, prayers, emails and support!

Tyler Monday Update

We are still in the hospital, trying to get some answers.  We spent almost four hours today in X-Ray having tests done.  They have drawn vial after vial of blood and taken a bunch of stool samples.  Still no news.  Hopefully we'll hear something tomorrow.

Poor Tyler was so dehydrated that it took more than 15 hours for him to have a significantly wet diaper.  He was feeling better today because he is finally getting hydrated.  They also kept him off food and oral liquids today and he seemed to be happier and out of pain.  Something is just not right in his tummy.  Now we just have to try and figure out what it is.

Thanks to everyone for your love and prayers for Brandon and his family.  I am sure they appreciate all the love and support they have received.  

I'll keep you all posted on Tyler's progress.  

Hotel Strong

Well, we are hanging out in the ER at Hotel Strong. They are preparing to admit Tyler as I write this. He has never recovered from the horrible diarrhea and throwing up and he is super dehydrated. They have tested him for bacterial things which have all been negative. Now they're thinking that he is suffering from malabsorption. Basically his body is not absorbing anything from what he eats or gets through his g-tube. It is just coming straight out. Now we need to figure out the underlying cause.

I'll update again when I can.

Brandon

It is with great sadness and a heavy heart that I let you all know that our sweet little friend Brandon Polito passed on today and returned to live with his Father in Heaven. He was surrounded by his family and friends. Please continue to pray for his family. If you had planned to join us in fasting tomorrow, please do. We will fast for Brandon's family. Please visit his Caring Bridge site and leave a message.

Please Pray!

There are times in life when it is necessary to ask for extra prayers.  Our family believes strongly in the power of prayer.  We know that Heavenly Father hears our prayers.  We know that there are times we need to pray together, as a whole, for something specific.  This is one of those times.

Anyone who follows Tyler's Caring Bridge page knows of our little friend, Brandon.  Brandon is literally fighting for his life right now.  He has fought and won the battle against cancer.  He recently underwent his third stem cell transplant to fight his leukemia.  Yesterday they found that he is cancer free.  Unfortunately while he has been fighting the cancer, he has had no immune system.  Because of that, he has developed pneumonia.  He is now fighting with all his might to pull through this.  

Brandon's family is incredibly strong.  Brandon is incredibly strong.  But they need more!  They need prayers.  Prayers from family, friends, and strangers.  They need prayers for comfort and prayers for strength.  They need the guidance of the Spirit and the  love and peace that Heavenly Father can send.  

For us, as members of The Church of Jesus Christ of Latter Day Saints, tomorrow is fast Sunday.  Please include Brandon and his family in your fast.  Even if you are not a member of our church, if you believe in the power of fasting, please join us.  

There isn't much more I can do for this incredible family.  I am not a doctor or nurse.  I am not a miracle worker, though I wish I were.  But I can pray.  I can include my voice to the many who are already praying and I can ask for more to join us.  

Please pray specifically that Brandon's body can fight this infection.  Pray that his family can continue to be strong both physically and emotionally.  Pray that the health care professionals can do everything in their power to help.  

You can follow along with Brandon's journey on his Caring Bridge site.  www.caringbridge.org/visit/brandonpolito

When you're there, please take a moment to sign his guestbook.  Let his family know that you are thinking of them and praying for them.  

Thank you all so much!  

Blast From The Past

My friend Teri sent me this picture last night.  I almost cried!  This was taken three days after we became Emmalee's parents.  She was eighteen days old.  Tyler was almost eleven months!  Can you believe how tiny Emma was?  She looks like a doll in her car seat.  Time sure flies!

Fun

Leelou Blogs is hosting a fun Launch Party complete with give-aways.  Check them out!

 

So I Won't Forget

Emmalee is very funny.  I know I say this all the time but seriously, it is true.  I hear her pop off with funny things all the time and wish I were better about writing them down.  Tonight I had her in the tub and she was cracking me up.  She was checking out her tummy and chest and she looked up at me and said, "Mom, my boobs are getting bigger and bigger all the time."  I just agreed and moved on.  A couple minutes later she started singing, "When I grow up....I'M GOING TO WEAR A BRA!  When I grow up, I'M GOING TO WEAR A BRA!"  Seriously I thought I would wet my pants.

Just now my Mom was putting Emma's lotion on her and Emma asked if she could have some of my Mom's "magic lotion," (Sweet Pea Body Cream from Bath & Body Works.)  My Mom said yes and went to get it.  Emma says, "Wow, I am such a lucky girl!"  I love that the simple things in life make her happy.  

Insomnia

Insomnia strikes again.  It's 2:30 in the morning and here I sit.  I can't shut my brain off.  Oh well.  I guess this is a great time to give a quick update.  :)

Nathaniel turned one on September 1.  (Yes, I am a bad mom.  I haven't updated his pictures yet.  Long story.)  We took Natey for his one year check-up on Friday.  He is really growing!  He is now 17 lbs, 13 oz and 26.5 inches long!  He still hasn't registered on the growth charts but he is doing awesome considering his start in life.  He is now eating stage three foods, rolling over like crazy, trying to crawl -- he can get on all fours and rock! -- babbling non-stop and smiling all the time.  He gets a huge kick out of Tyler & Emmalee and loves being around them.  He loves watching Sesame Street, especially Elmo.  He LOVES hanging out in his jumper.  He is the easiest, happiest little guy ever.  His smile just lights up a room.  He is such an amazing gift to our family.  I can't imagine our family without him in it.

Emmalee started nursery school a couple of weeks ago.  It is two and a half hours, two mornings a week.  She LOVES it!  Her teacher is wonderful and the class is quite small, which I really like.  She is attending the same school that Tyler goes to.  Although the children in her class do not have special needs, they do have the opportunity to spend time with the other pre-school kids.  

Emma also had her check-up on Friday.  She is now 39 lbs and 39 inches!  She is growing so fast!  She is still testing her boundaries as much as she can and giving us a run for our money.  :)  Even so, she is one cute kid and I love her sassy personality, (most of the time!)

Tyler is doing alright, for the most part.  We are trying to learn to take it one day at a time.  Some days are great and we love those days.  They get us through the not so great days.  We had a bit of a scare concerning his blood glucose but thankfully it ended up being okay.  He continues to show us what it means to be strong and brave.  He is an incredible kid!  He seems to be learning new things all the time.  He hasn't been able to attend school since last February and he misses it so much!  None the less, he works hard to learn.  He can count to ten, say most of his ABC's and he has many new words.  He never ceases to amaze us!

Brent and I are doing well.  Brent's job is going great which is such a blessing.  I am so thankful that he loves his job!  I am healing more and more each day.  I go back to the doctor on November 6 and hopefully I will be ready to start putting some weight on my right foot.  I really miss walking...and driving!  

My mom is still here helping out and we are thankful for that.  She is planning to stay until after my appointment, just to be sure that I will be able to get around a bit easier.  We have been tackling quite a few projects and getting our house clean and more organized.  That is always a good feeling.

I suppose that's it from here.  Now it's 3:20 a.m. and I'm still pretty much awake.  Hmmmm, what to do next......

Autumn in Western New York

Make a Smilebox scrapbook

Out Of Touch

It has been awhile.  Life has been predictably busy.  Let's see...where to begin...

After my last post, Tyler was in the hospital.  Again.  It was only for four days, thank goodness, but it was a long four days since I was pretty much confined to the room just like he was.  Poor kid.  I have new respect for how he must feel when he is confined.  After four days and finally getting his antibiotic levels back on track, we came home.  We were thrilled!  He has been doing really well since although he is still on the IV antibiotics.  He continues to fight the MRSA around his g-tube.  Because of that, he is having surgery tomorrow to replace the long tube with a mic-e button.  We're hoping this will make a big difference for him.  He also has a scheduled lumbar puncture with spinal chemo therapy medications.  It's great that we can do it all at once so he doesn't have to go under anesthesia more often than necessary.

Brent's mom went home on September 3rd and I have missed her every single day.  We tried to convince her to stay and live with us but she really did have other things to go home to so we tried not to be too pushy.  LOL  She is incredible and we are so thankful for the time she was able to spend with us.  

My mom got here on the 10th.  It has been great to have her here and the kids are starting to settle into a routine again.  She is planning to stay for about a month.  By then I should be back on my feet.

Speaking of my feet....they are healing.  It is a slow, often painful process, but happening none the less.  I went to the doctor and she gave me permission to take off my left boot, as tolerated.  I pushed it pretty hard last weekend and then regretted it.  I ended up having to wear the boot all of this past week.  I have been keeping it off again this weekend and it is getting stronger.  I'll probably need to wear it again for a few days but it is nice to take a break, (no pun intended!)  The right foot is healing.  They took x-rays again and the surgery seems to be doing what it should.  I have several weeks left in that boot, with no pressure on my foot.  But, I am getting more and more mobile all the time.  I am getting quite creative when it comes to getting around. 

Brent is feeling better but again, it is a slow, sometimes painful, process.  He is getting stronger but still gets tired really easily.  We realized, too late, that he was allergic to the antibiotic they put him on to fight the MRSA.  Poor guy.  We thought all the awful symptoms were side effects from the infection.  Only after the antibiotic was finished did we realize that he was actually having an allergic reaction to it.  Luckily it did seem to kill the infection in the process.  Still.  I feel terrible for pushing him to finish all the pills!

Emma is doing well.  Feisty as ever.  She can be the sweetest girl in the world and then turn into a little stinker in a split second.  I suppose that's part of being a three year old.  She is starting pre-school at the end of the month and she is thrilled!  We ordered a super cute backpack and a few school clothes and she has been in girl heaven!  I am really excited for her to go.

Nathaniel is amazing.  I simply can't say enough to express just how incredible that little boy is.  He is the easiest baby ever.  He just hangs out, happy to get his bottle, happy when he gets his diaper changed, thrilled when we sit and love and play.  He doesn't cry much.  He doesn't get too upset.  He has grown so much!  He is rolling all over the place, trying to crawl some and working on sitting up.  He smiles non-stop, makes all sorts of fun noises and eats his toes as often as possible.  Quite frankly, he is the perfect baby.  :)  He turned one on September 1st.  (I still have to get that post put together!)  I can't believe he is one already.  Of course, he wasn't due until December so he is still small for his age but catching up all the time.  We just can't imagine our family without him in it!

I suppose that's enough from me for now.  I will try and do better at keeping up here.  Thanks, as always, for your continued love, support, prayers, emails, phone calls, cards, etc.  We simply could not make it through all of this without each of you!!  We love you!

Stir Crazy

That's how I feel. Cabin fever, I suppose. I am tired of being stuck inside. Summer in Western New York is very short. I am now destined to miss the rest of it due to my stupid broken ankle. Blah! No amusement parks or camping or day trips to the lake for me. Double Blah!

Alright, thanks for letting me vent. Actually, I really do have much to be thankful for. Brent is home. Although he is still not up to par, he is home and recovering. I am so happy about that!

Brent's Mom is here visiting and helping. To be honest, I don't know how we would make it without her. She is incredible and I am so thankful to have her here. The kids have all bonded with her but especially Nate. He gets super excited when she comes near him and I think that he is going to be really sad when she goes home. That goes for all of us, though.

Tyler is in the midst of "roid rage" and it is the worst we've seen. He is miserable. Poor little guy didn't sleep at all last night which meant Brent was also awake since I am of little use. Luckily he went to sleep pretty early tonight and we're hoping he gets some good rest. He is still doing his IV antibiotics and we pray that the infection gets better.

Emmalee has really enjoyed having her Grama Gardner here. They have been playing outside and reading lots of stories. Emma has also shown a real love for laundry! She was quite disappointed today when Grama told her they weren't doing laundry since it was Sunday.

Nathaniel is doing great. That boy just stays calm even during the craziest circumstances. He is such a love! He is truly a calming influence in our home. He has changed so much, even in just the past couple of weeks. He is very vocal now and loves to chatter, scream, squeal, etc. I think he likes hearing his own voice. Speaking of hearing...it is becoming more and more obvious that he does hear. He is very responsive now, turns when we call his name, looks when he hears a noise, etc. He is also beginning to imitate sounds. I think that perhaps he just needed time to catch up and for everything to start working together. We will still take him to the neurologist at the end of October but I am getting less and less concerned. I honestly believe that he will be just fine. I think it will just take him longer to develop than other kids. Considering he was nearly four months early, that is totally understandable. Either way, Nate is one amazing, adorable, sweet little boy!

As for me...I go to the doctor on Thursday and I hope and pray she takes this cast off and fits me with something more manageable. The cast I am in now is really starting to bug me. It is a temp cast anyway but I am hoping the next step isn't something even more confining. Most people don't know this about me but I have very claustrophobic feet. I know that sounds odd but these past two weeks of having to have them bound up has really started to get on my nerves. Sleeping is almost unbearable. (I don't even like to sleep with socks on!) Luckily I can take the boot off my left foot and give it a breather once in awhile. It is going to be a long twelve weeks....only ten to go!

All in all, things are getting better. Maybe the voodoo dolls have been put away for awhile. Thank you all for your continued love, support and prayers. We truly appreciate each of you!

From Bad to Worse to HOLY COW, Are You Kidding Me?!?

I am beginning to believe that someone in this world has voodoo dolls of our family and is trying to find new ways to torture us.

Brent is in the hospital. He was admitted early this morning. He has an infection in his arms that they are fairly certain is MRSA. He started getting redness and pain in his arms earlier in the week. However, he sort of pushed it off, thinking it was nothing, and trying to focus on me and the kids and everything else instead. On Thursday night I finally convinced him to go to urgent care. They took one look at his arms and sent him to the ER. They wanted to admit him right away but he refused because of the need to take Tyler to clinic on Friday and my obvious inability to drive. They pumped him full of IV antibiotics and let him come home.

By last night, the redness was beginning to streak up his arms and he had a fever. Obviously this caused some alarm and he went back to the ER. This time there were no excuses, they admitted him right away.

Right now they are trying to determine if he has MRSA. They are pretty certain he does but they are waiting for the final culture results. They are strongly considering removing a section of the muscle in his left arm because that is where the infection is concentrated. If the damage is too great, they will have to remove the muscle. They are hoping that the IV antibiotics will reduce the swelling and get rid of the infection. They just aren't sure yet.

I am beside myself with worry. I can't drive, I can't go to the hospital, I can't be with him and that is killing me. I hate that he is there alone. I hate that he is there at all. This whole situation is like a bad dream that I pray we will wake up from.

As if that isn't enough, Tyler was put back on his IV antibiotics on Friday. They actually wanted to admit him from clinic but they decided to go ahead and try the home treatment again. He still has a nasty infection around his G-Tube. So far he has no fever so we pray the antibiotics will do the trick.

All I know is that we could not make it through all of this without the help we have received from our friends, church family and health care professionals. We have had meals brought in, help with childcare, help with housework, etc. Our friend Tasha is staying with the kids and I and we are truly thankful for her. Also, Brent's Mom is coming in from AZ late tomorrow night. Having her here is going to be such a blessing.

I am a strong person and I know that. Brent and I are strong together, we have an incredible marriage, and we will get through this. I just wish I could understand why on earth these major challenges continue to present themselves, one right after another. We keep saying, "it could always be worse." I think it's time to quit saying that because it keeps getting worse.

Please continue to pray for our family. Your prayers are carrying us and they are being felt!!! Thank you....I will update again soon.

Hooray For Home!!

I am home! They released me last night and I got home about 6:00. I am so glad to be home. The kids were happy to see me and it was wonderful to sleep in my own bed. There's just no rest in the hospital!

I had surgery on my right foot on Monday. It is very sore and I won't be able put any pressure on it at all for twelve long weeks. That should make life very interesting. The left foot is in a big brace, kind of like a boot. I can put pressure on it, thank goodness. It is still sore but I think it is healing pretty well. The swelling seems to be down some and it doesn't throb nearly as much as the right foot. Luckily, after more x-rays, they found that there were no broken bones in the left foot. But, the sprain was really bad and there was some ligament damage. Nothing like the right foot but still enough to cause a good injury. I will probably have to wear the boot on it for a couple of weeks and then it should be healed up enough to go without.

My right foot is in a plaster cast of sorts and I can still feel how swollen the ankle is. The doctor said it will swell for quite awhile. After a few weeks they should be able to switch it to a fiberglass cast which will make things like bathing a lot easier. I still won't be able to put any pressure on it but at least it will be easier to manage.

Obviously I can't drive so that is going to make life tricky. Brent is going to have to take the next several Fridays off of work in order to take Tyler to clinic. We also have to have someone here at the house whenever Brent isn't home because I can't take care of the kids by myself. The help we have received already has been tremendous and we are so appreciative! Thanks to everyone for constantly lifting our family up in prayer as well. We certainly couldn't make it through all of our trials without all of you!

Never A Dull Moment!

Well, apparently we love Hotel Strong, (aka Strong Hospital) so much that we simply can't stay away. Thankfully it isn't Tyler who is here this time. This time it is me.

Yesterday Brent was putting Emmalee in the car to make their traditional Saturday morning drive to McDonald's for pancakes. I was bringing Tyler out and somehow managed to trip and fall. I severly sprained my left ankle and broke my right foot and ankle. I will be off my feet for several weeks. I have to have surgery sometime tomorrow to put some screws in to repair torn ligaments in the right foot. Thankfully Tyler escaped with nothing more than a scrape on the back of his head, thank goodness!

Please say a little prayer that my surgery will go well and I will be able to go home soon. I miss Brent and the kids so much! I'll keep you all posted.

Tyler's Funny Hat!

These were actually taken awhile ago but I just came across them again today and had to post. Ty had such a great time with this thing!!

Tuesday Tyler Update

We are HOME!!! Oh happy day! Ty is doing well. His skin looks so much better and the infection is nearly gone. He does have to do IV antibiotics every eight hours for seven more days. The hard part will be waking up for the 2:30 a.m. dose. But, it is a small sacrifice if it means we can be home. He was so excited to get home and began tormenting Emma and Nate right away. :)
Thanks to everyone for your continued love and support!

Monday Tyler Update

We are still here. Looks like we'll be going home tomorrow. Ty has to go home with IV antibiotics and that takes awhile to get set up. At least we have a plan and we can start getting ready. Tyler is ready to GO, GO, GO! I can't blame him. I'll update tomorrow; hopefully from home!

Saturday Tyler Update

Tyler continues to do well although he is super bored. Poor kid...it's no fun being confined to the room. We found out today that the infection is in fact MRSA. Yuck! MRSA in combination with being neutropenic is not a good thing. But, at least he is there and getting the medications that he needs. Now that we know that it is MRSA, they can get the right treatment going. We're still hoping for discharge on Monday but we'll have to wait and see. This throws his chemo off for a while until we get things under control. He sure likes to keep us hopping!!

Enjoy your weekend....I'll update again soon.

Friday Tyler Update

Ty is doing well today. He is feisty and keeps yelling "COME IN" anytime someone knocks. Funny boy! We're confined to the room so he is bored and making mischeif.
Still aren't sure what the infection is. We won't be able to go home until Monday, at the earliest. So, we'll just hang out here this weekend and hope for Monday! Thanks to everyone for checking in and leaving comments. Keep the prayers coming!!

Thursday Tyler Update

Tyler is doing pretty well today. Actually, he is in really good spirits and being his wild self. :) He hasn't had a fever, thank goodness, and they are pumping him full of antibiotics. The culture results aren't back in yet as far as what type of infection he has in the skin. They are worried about MRSA since he has had that in the past. Hopefully we'll know more tomorrow. For now, we're just prayinig that we aren't there the entire weekend. Brent is staying with him tonight so I can hang out at home. I'll update again tomorrow when I know more.

And off to Strong we go......

All our attempts to stay away from Strong have failed. Tyler appears to have an infection in the skin around his G-Tube, likely some sort of staph. Still running a bit of a fever and they are worried that it could be turning into something nasty. So we'll likely be admitted. Boo! Please say a prayer that all will go well. Thanks!! I'll keep you all posted.

Emma-Isms

Here are the latest Emma-Isms.....

Emma was saying the blessing at lunch and this was her prayer..."Heavenly Father, please bless us to have a good lunch. Please help me to be a good girl so that I can get a motorcycle. And maybe Bo-Bo (Tyler) will be good and he can ride on it, but only if he is really good."

She also just asked me if I would help her sing the "Apple Pets." I couldn't figure out what she meant and she said, "you know, the ABC's." The alphabet!

The "F" Word

The "F" word in our house is fever. We are constantly on the watch for a fever with Tyler because it signals infection. If his fever hits 101, we are automatically eligible for a "vacation" at Hotel Strong, (aka Strong Memorial Hospital.)

Last night Tyler and I sat up most of the night together while I prayed his fever wouldn't hit the magic number. Thankfully he stayed around 99.8 throughout the night and he is down again this morning. Whew! All I can say is thank goodness for our forehead thermometer. That thing is a true lifesaver and well worth the money. 

Tyler is neutropenic right now, (very, very low white blood count,) so we're laying low and hanging out at home. Please say a little prayer that we can avoid a Strong "vacation." Seriously not our idea of a good time!

Happy Birthday, Sue!!

Hope your birthday was fabulous! We love you!!

Frustration

I called today to make Nate an appointment with a neurologist. The earliest appointment available is October 29!!! I almost cried. I asked her to put me on the cancellation list, and she said she will but the list is quite long. I am trying not to be too discouraged. Can you tell how well that's working??

Unexpected News

Well, I guess I should see this as good news but I am having a hard time saying that yet. Nate had his ABR test today. He is not deaf. Please don't misunderstand, I'm not sad about that, that is good news. However, he does not respond appropriately to sound which suggests something neurological is going on. That's where the bad news comes in. I'm not sure what to think at this point. He now needs to see a neurologist. The ABR showed 100% hearing in his left ear and 90 - 95% hearing in the right. In other words, the sound gets from his ears into his brain just fine. From there, who knows. Unfortunately the ABR can't tell us what happens to it after that. The doctor who performed the test did repeat some other tests as well and said that he can completely understand why we think he is deaf. He simply doesn't respond, even though he clearly hears. I am somewhat beside myself at this point. I am disappointed because we don't have a clear answer which is what I expected to get today. So, we'll move on from here and pray that the answers come quickly. Thanks to everyone for your thoughts and prayers.

Tomorrow's Nate's Big Day

Nate has his big hearing test tomorrow morning. I am nervous. I didn't expect to be, but I am. I guess it's just knowing that by this time tomorrow night, we will have confirmation that Nate is deaf. I know in my heart that he is, at least to some extent. By tomorrow night we'll know how much, if any, hearing he has. We'll have a better game plan. We'll have some ideas on what we need to do next. I think I'm nervous because even though in my heart I know that he is deaf, in my head I can still believe that we are wrong. After the test there will be no more denying it. I won't be able to pretend that I am imagining it. I know that knowledge is power and knowing what we're facing is good. But right now, there's a certain level of comfort in the not knowing.

Please say a little prayer that all will go as planned. I'll update tomorrow.