Tyler LOVES to slide!

Make a Smilebox scrapbook

Emmalee's Fourth Birthday

Make a Smilebox scrapbook

Update

I suppose it's high time I updated around here.  It has been awhile.  We are doing alright.  Sometimes I think that we live in the house that germs built.  We've all been sick on and off the past couple of weeks.  Okay, who am I kidding?  We've been sick on and off for the last several months.  Seems like someone starts the cycle and it runs through everyone then we're all well for a few days and someone starts it off again.  That someone always seems to be Emmalee.  I think she is picking up the germies at school and bringing them home with her.  I will be so thankful when it is summer!

Tyler has been doing well.  He is such a strong little man!  He seems to be learning something new all the time.  He is also walking 90% of the time now and I LOVE it!  He is just too funny to watch.  He has many new words and "talks" so much more now.  He is also quite the jokester!  He gets a huge kick out of making us laugh.  

The best news of all is that Tyler got the green light from his doctors to go back to school!  I am excited but also a little nervous.  It is going to be hard to let him go after being so super cautious and protective this past year.  But, he is going to be so happy getting back to school.  We met with the district representative recently and hopefully we'll find out soon if Ty has a spot in pre-k to finish out the school year.  

Emmalee is enjoying pre-school.  It is a really fun program and I am happy that she has had the opportunity to go this year.  We are planning to send her to the same program again in the Fall.  

Emmalee turned four on the 6th.  It is almost impossible for me to believe that at this time next year she will be getting registered for kindergarten.  Where did the time go?  

This past week has been full of parties for Emma.  She had her friend party at Chuck E Cheese on the 4th, her family party at home on the night of her birthday and a little party at school on the 7th.  After she got home from school that day she asked me when the next party was.  She wasn't too thrilled when I let her know that the parties are now finished.  

Nathaniel is a wild man!!  We have decided that trying to hold him is like trying to hold a Tasmanian Devil.  He is so busy and wiggly.  He is constantly on the go and he is never quiet when he's awake.  He crawls 100 miles an hour and cruises the furniture, pulls himself up to "play" the piano and drives Ty & Emma crazy!  (Isn't that what little brothers are for?)  Seeing how far he has come is incredible.  He is truly a miracle boy!  He still has a way to go developmentally but I have no doubt that he will catch up and do well.  

Last week we took all three kids to the eye doctor.  Emmalee had recently developed some issues with eye crossing.  I thought it was just me noticing until her pre-k teacher told me she was noticing it also.  The boys were due for check ups as well so we took everyone.  

Tyler's eyes are improving which is fantastic.  He is still very visually impaired but they are getting better a little at a time.  He still needs to have the lens replacement surgeries but his Oncologist wants to wait until he is further along in his leukemia treatment.

Nathaniel's eyes are still doing well.  He does have some crossing issues but the doctor didn't think that he needs correction at this time.

The real news is that Emmalee had to get glasses.  She is severely farsighted and her prescription was pretty strong.  I was surprised!  I expected that she would need glasses but didn't realize just how bad her vision is.  I am really glad we got her in.  She, of course, chose pink glasses. They are soooo cute on her!!  (I will post pics soon!)

I go back to the doctor next Thursday and I am hoping that she is going to give me the green light on walking.  I am beyond ready!  She said at my last appointment that there is a chance she will have to do one more surgery to remove one of the larger screws that goes across the joint.  I am really hoping she doesn't have to do that but I suppose it isn't the end of the world if she does.  She also said that quite simply, my ankle will never be the same.  I will probably always have pain and weakness.  I may have to wear some sort of brace.  I guess we'll just have to wait and see.

Brent is doing well and keeping busy.  He has had several out of town trips lately.  We sure miss him when he's gone!!  He is still having some health issues and we're working to figure out exactly what is happening.  One thing we did find out is that his vitamin D levels were extremely low.  He is now taking a supplement and starting to feel some improvement.  

I suppose that's enough for now.  :)  I will get busy and post some pictures soon!!

Love it!!

I am so excited!  I recently met another mom with a child with special needs.  She makes amazing, custom overalls for her daughter and other kids with special needs.  For those of you who don't know, Tyler has to wear overalls all the time.  It is necessary so that he doesn't get ahold of his colostomy bag, Mic-E button, medi-port needle when he's accessed, etc.  Overalls make life much easier.  :)

At any rate, Amy made Tyler some amazing overalls!  We haven't received them yet but she emailed me some pictures this morning.  I can't wait to get them!!  

If you happen to have any gently used overalls, boys or girls, any sizes, long pants or short, please let me know.  Amy relys on donations in order to make these.

Thanks again, Amy!!

Wow

Come What May

My friend Lanna has this posted on her blog.  I just had to add it to mine as well.  What a great message, no matter what your religion.  

No Place Like Home!

We are home!!! The docs came in this morning and said that things look better, the culture did not grow MRSA and since Tyler wasn't running a fever they felt that he was okay to come home. I certainly couldn't argue with that logic and we hightailed it out of there as soon as they gave the word. We were home around noon and we both got in a good nap. I am thrilled to be sleeping in my own bed tonight and Tyler must be also because he snuggled right in. There certainly is no place like home! Our friend Brooklynn also went home today but our other friend Maddy is still there. Please say a little prayer for her. Please keep our friend Anna in your prayers as well.

Tyler Sunday Update

Not a ton of news to report tonight. Tyler is still doing well. We did find out today that the culture that they took from around his g-tube grew a host of bacteria. They're thinking that it's probably a contaminated sample and they will likely repeat the culture to see if something definite grows. Until then they continue to treat him with the Vanco.

We did get to move to 4-3600 tonight and we are so glad! Everyone on 4-1400 was wonderful but it is nice being back here where everyone knows us. Tyler was thrilled to see "his girls!"

That's pretty much it from here. Two of Tyler's friends are also in this weekend so it's kind of a mini-reunion for the moms. One of these days our children will realize that they don't have to get sick and end up in the hospital in order to see one another. :) Please keep our friends Brooklynn and Maddy in your prayers also as well as our friend Anna who is in Boston right now.

Tyler Saturday Update

Ty is doing well. Actually, he is acting fine. He is his usual giggly self today which is a great thing! The only discomfort he has is when someone is messing with his g-tube. It still looks awful and has lots of drainage. They have him on Vancomyacin for now until they know exactly what kind of infection it is. We haven't heard any results yet. Hopefully we'll know more tomorrow.

We are not in our usual unit this time. All the private rooms on 4-3600 were occupied last night so they put us on 4-1400 which is the adolescent unit. Everyone here is really nice but it isn't the same as being over with our friends. They're hoping to get us moved over soon.

Tyler has been charming everyone over here today. He is such a silly goose! He knows how to keep everyone smiling.

Thanks to everyone for your comments, love and prayers. I'll update tomorrow.

Hotel Strong

Hello from Hotel Strong. Yes, it's true. Tyler was admitted last night for an infection around his G-Tube. I was really hoping that we'd come to the ER and they would take a look at it and tell us to go on home. No such luck. They are thinking it is probably MRSA again. I'm guessing they are probably right, given his history.

It has been four months since his last stay in the hospital. That was the longest we'd gone since he was diagnosed. I suppose it was only a matter of time. :)

I'll keep you all posted. Please pray that this is a short visit and he will be on the mend and home very soon!!

One Year Ago....

I have been contemplating this post for quite some time.  One year ago this weekend is when we found out Tyler has leukemia.  (You can read my posts from those few days here and here.)  He had been so sick.  He was just miserable.  He is generally very easy going and even when he was sick, he was usually still happy.  This time was different.  I took him to the doctor, they sent him for blood work but figured he had the flu.  I remember being sad that he had the flu.  I remember hoping that he had something else, something they could give him an antibiotic for....maybe an ear infection or strep throat.  

Brent was out of town the day I took Ty to the doctor.  I remember calling him after the kids and I made the trek out in the cold to the doctor and the lab for blood work.  I was scared.  Tyler wouldn't move his arms.  He was in agony.  I remember telling Brent that something was very wrong.  I am not generally one to freak out.  But I can clearly remember being worried.  

The day we found out was Friday.  Tyler had a miserable night Thursday night.  I was up with him most of the night and finally got him to sleep a little.  I was exhausted.  Nate was still really tiny and had only been home for two months.  He was still so new, and still had so many unknowns medically that I was scared he would also get sick.  On Friday morning I had to have Emmalee feed Nate because Tyler would not let me leave his side.  

Brent took a cab home from the airport early that afternoon.  I have never been so thankful to see him.  He came in and I told him that Tyler was still so sick.  I told him how worried I was.  He just sat down and held Ty and I know Ty was glad to see his Daddy.  Brent looked at me and I remember telling him that I felt something was very, very wrong.  He felt it too.

When the phone rang, I wasn't fast enough to answer it.  I checked the voice mail and it was a message from Dr. Katz.  Not from Dr. Katz' office or from one of the nurses; it was Dr. Katz himself.  That immediately set off alarm bells.  The doctor never calls.  Someone in their office calls to tell you that your blood work came back normal.  When the doctor calls, that makes your heart skip a beat.  I immediately called back and Dr. Katz started by asking how Ty was feeling.  I could sense that he wanted to say something but wasn't sure how.  After a couple of minutes of small talk, he asked me if Brent was home from his trip.  I said yes.  He asked me to sit down.  He then said the words that every parent dreads.  He said, "Jodie, I think Tyler has leukemia."  I asked him to repeat it.  He said it again.  I sort of shut down.  I know I listened to what he was saying but I don't remember much of it.  What I do remember is him telling me that he had already called the hospital.  They were expecting us.  They had to run more tests.  They had to determine what kind of leukemia he had.  Brent saw the look on my face and I mouthed the word 'leukemia' to him.  His face dropped.  We both got teary eyed.  

The next few hours are a blur.  I hung up with Dr. Katz and called my friend Sue.  She was at our house within the hour to pick up Emma and Nate.  We got to the emergency room and sure enough, they were waiting for us.  Everyone was so nice.  They started asking all kinds of questions.  They took so.much.blood.  They took x-rays.  We prayed, we cried, we worried.  We didn't understand right away that they would admit him and we wouldn't be coming home for at least a month.  We were numb and scared.  

By the time they got Tyler admitted and up to his room, it was after midnight.  I sent Brent home.  I sat up and talked to Laura, Tyler's amazing nurse.  Tyler went to sleep.  Then I cried.  The grief was overwhelming.  

The rest of the weekend was spent trying to understand what was happening.  We met with oncologists and surgeons.  We called family and friends.  We prayed, we cried and we worried.  We tried to come up with some sort of game plan for the other kids.  We immediately had help from friends.  I don't know what we would have done without all of them!

On Sunday Tyler had a bone marrow biopsy and we found out that Tyler has Acute Lymphoblastic Leukemia.  We learned about the treatment protocol and how it all worked.  We met with more doctors.  That night I made one of the most difficult phone calls I've ever had to make.  I called Tyler's birth parents to tell them.  That was agony!

Tyler spent five weeks inpatient starting his chemo therapy, having surgery, having more x-rays and tests, going from bad to worse and back again.  He was a trooper through it all.  There were days that I would just sob, especially at night after Brent had left and I was alone in the dark.  Some days were unbearable.  Ty was pretty much confined to his room because he was neutropenic for so long.  He didn't move off the bed for several days because he was so miserable.  It was not easy to see him so sick.  

After five weeks we came home and enjoyed a week away from the hospital.  It was wonderful!  Tyler was able to celebrate Emmalee's birthday at home and we were so happy to be together as a family.  He went back into the hospital for what was supposed to be a five day stay.  It ended up being more than two weeks.  He had a horrible reaction to one of the chemo drugs and we nearly lost him.  He coded late one night.  He suffered from Stevens Johnson syndrome and the chemo burned him from the inside out.  He had blisters and sores all over his body.  It was torture to see him in so much agony.

There have been a few other hospital stays along the way, mostly for infections.  Through it all, Tyler has been strong.  Sometimes he is stronger than we are.  

One thing I know for sure is that we could never have made it through this past year on our own.  Through it all we have had friends and family to support us.  We have received cards, letters, emails, gifts, monetary donations; many from people we don't even know.  We have always had someone there to help with the other kids, to bring in meals, to help in any way we have needed.  We have had amazing care from doctors and nurses, social workers and parent support groups.  And we have met some incredible families who are also sharing this journey.  I remember telling our social worker in the very beginning that this isn't a team I would ever wish to be on but since we are, I am so thankful to know all the other players!  They have all become like family to us and I can't imagine trying to get through this without them!!

We have also been so blessed by our kind and loving Heavenly Father.  He has put the people we need most in our path.  He has answered so many prayers.  He has always been there to love and guide us.

Through it all, Tyler has been incredible.  Yes, he has been sick.  Yes, he has been angry and upset and frustrated.  But he has also been amazingly forgiving, loving and strong.  He has shown us what it means to persevere.  He is a great example to all of us!

In one year from now we will be nearing the end of this battle.  I am truly looking forward to that day.  I pray that this coming year will be routine and uneventful.  I pray that we will make it through to the other side and never have to face this battle again.  I also pray that we will never forget where we have been and how it has made us stronger.  Above all, I pray that we remember how precious life is and that we never take one single day for granted.

T21 Traveling Afgan

My sweet friend, CJ, recently came up with an incredible way for those of us who have children with Down syndrome to connect.  She has created the T21 Traveling Afgan.  (T21 is the medical term for Down syndrome because it is the 21st chromosome that is affected.)

At any rate, the afgan is completed and will be sent all over the United States and to different countries in the world.  Each participant keeps the afgan for a few days, takes pictures of their child with the afgan and then passes it along to the next person.  What an awesome way to meet other families of kiddos with DS!

CJ is one of my favorite blogging buddies.  We often joke that her little girl is Tyler's future wife.  It's fate, really.  Her daughter is also named Emmalee, she and Tyler share the exact same birthday and her Emmalee is also adopted.  

If you or someone you know has a child with Down syndrome and you would like to participate, you can post it here or check out CJ's blog for more information.  

Tooth Trouble

Poor Natey.  He has such tooth trouble.  First of all, he didn't get any teeth until he was a year old.  Then he got both the bottom front teeth at the same time.  They were the only teeth until he started cutting all four top front teeth, at the same time.  Talk about OUCH!  Now he is cutting two bottom teeth at the same time.

As of this afternoon, he is down by one tooth.  Not 100% sure how it happened but he was in the playpen and suddenly he started crying.  But it was that cry, you know what I mean?  I stood up to check on him and there was blood.  I wasn't sure where the heck the blood had come from but when I scooped him up it was pretty obvious.  The tooth was still there and attached to it was the root.  I wasn't about to touch it and mess anything up...it was still attached to the gum at that point.  

Our pediatric emergency room has pediatric dentists so we quickly drove him over there.  By the time we got there and he was seen, the tooth had come all the way loose and he had apparently swallowed it.  Nice.  The doctor really couldn't do much for him.  He called the pediatric dentist who said that there wasn't much they could do in the ER.  So, we will have to take him to the dentist soon.

Poor little buddy.  He has a big hole and cut in his gum.  He is likely going to be toothless until his permanent tooth comes in.  That will be awhile.  I'm curious what the dentist will say.

I'll have to try and get some pictures.  He was not too keen on letting me fiddle around with his mouth tonight.

Never a dull moment, I tell you, never a dull moment.

Late Valentine's.....Totally Worth It!

Brent and I were a little late with our gifts to each other.  Just timing issues.  But the saying "good things come to those who wait" is true.  

I have seen these Edible Arrangements before but didn't realize they had one in our area.  Brent sent me this beautiful boquet with a box of chocolate dipped strawberries.  YUMMY!!  Pardon the stock photo, I started nibbling on my boquet before I snapped a picture.  

I sent Brent his favorite chocolates from See's Candy.  They also arrived today.  The beautiful thing about food gifts?  You can share with each other.  YUM!

Thanks honey!  I love you so much!

Let's See......

What to post?  I feel compelled to update.  I suppose it's always safe to post about the kids....

Tyler is doing well.  He is feeling alright, for the most part.  He never ceases to amaze me.  He has been walking so much lately!!  He likes to yell "RUN" and then take off walking as fast as he can.  I need to get the camera out and ready so I can get it on video.  He is so proud of himself.  He won't really walk in public yet, I think he is comfortable at home because he knows the layout.  I'm sure he'll just get more and more confident as time goes on.

I will admit, there have been times in the past four and a half years that I have wondered if Ty would really ever walk on his own.  Once again, I should never doubt his abilities.  If Tyler has taught us anything, it is that he will do things in his own time.  Every time I watch him master something new my heart just swells.  He is one incredible kid!!

We are approaching the one year anniversary of his leukemia diagnosis.  I am still trying to wrap my mind around all that has happened this past year.  I just pray we can get through the second year without too much worry.

Emmalee has been having a great time at nursery school and wishes she could go every day.  She loves her teacher and her classmates.  

I am constantly shocked by Emma's memory.  She has a knack for remembering song lyrics, even if she only hears a song once or twice.  I hear her singing all the time and sometimes they are songs that shse has only heard on the radio while we're in the car.  One of my favorite things is to listen to her singing when she doesn't realize anyone is listening.  I sure love her.  

Nathaniel is the easiest, happiest little man!  He is the perfect third child.  It seems that no one told him that he was a micro-preemie.  He is catching up so well!  He is now pulling up on EVERYTHING and cruising around.  He has even figured out how to pull up in front of the piano so he can reach the keys.  He can't see the keys but he can sure reach them.  

Nate's speech is still pretty delayed.  He chatters often but doesn't have many words.  I am not too worried yet and neither are his early intervention teachers.  We'll just have to keep working on it.  

I am doing well.  I have been down for four weeks so I have about eight to go.  I went to the doctor last Monday.  I had my splint removed and saw my new incision for the first time.  It is twice as long as the old one...I had almost twenty stitches this time.  I am also sporting all sorts of new hardware in my ankle.  I now have a metal plate that is about four inches long as well as five screws.  I can't wait until the next time I have to fly somewhere.  I'm sure I'll set off the detectors.  The doctor decided to put me in a cast for a few weeks to help keep my leg protected.  She was kind enough to let Emmalee choose the cast color.  I am not sure I've ever seen anything so neon pink in my life!  Emma thinks it is quite hillarious and tells me all the time that it is getting even more pink.  I am really glad that I only have to wear this one for three weeks.  Next time I get to choose my own color.

Brent is working hard, as always.  He really loves his job which is such a blessing.  In this crazy economy, we are truly thankful that he has such a great job.  He is still having some health issues.  He is going to see a specialist soon which we are both really thankful for.  I just hope and pray that we can get some answers.

My mom is still here helping us while I am off my feet.  Sometimes I worry that she is getting burnt out but she plugs right along and keeps things going.  I'm very thankful that she can be here.

So that's pretty much it from the Gardner house.  Love to all!