700th

This post marks the 700th blog posting.  I started this blog over 4.5 years ago as a way of keeping people informed about the boys.  I got sick of answering the same question "How are the boys?"  So I created this blog so that people could check for themselves.  At times I found it therapeutic and others it felt forced.  But I am so thankful that I kept up with it b/c it's the journal of my life.  The only thing I have manage to keep up with.  As you can see I am the queen of grammatical errors.  Mainly b/c I just type and don't ever reread what I write.  I actually really never go back and read my posts.

So 4.5 yrs in our life is like dog years.  When I started this blog we just made the big move from Spencer (a little farm town in the middle of nowhere) to where we live now which is the next town from where Rick grew up.  I always knew he would drag me back here :)  Frankly, I am so happy he did.  It was life changing for the better really.  While we had a big beautiful home in Spencer, it was 1.5hrs. from Children's hospital and Rick's work and family.  I was basically alone caring for the 3 kids b/c Rick's commute was so long.  Now we are just 30 miles from the hospital and 3 minutes from Rick's work and 10 mins. from his family.  And 1 minute to all the great shopping :)  

When I think back at all that has gone on in the past 4.5 yrs, it is mind boggling.  For me, I feel like I have grown up.  I have gotten rid of drama in my life.  I used to be the kind of person that needed to be with people all the time.  I was never settled with just hanging at home.  With each kid and c-section I was out at my friends house the day I got home from the hospital.  I was a complete crazy woman.  Then this lil boy came into my life and completely settled me down.  That would be Avery of course.  Isaiah was hospitalized alot his first few years but started to settle once Avery turned a yr. (which is right when we moved).  Janessa actually believes that the reason Avery started to get so sick was b/c he didn't like the move, lol.  From the first week we moved, Avery was literally in the hospital every 2-3wks.  It was exhausting and life changing.  And it certainly changed my tune in terms of being settled more at home with my family. 

There are so many lessons I have learned over the past four yrs.  The first is how to become an advocate for my boys while earning the respect of the medical community.  Also, Rick and I have grown so much as a couple and as parents.  We have and will be faced with so many tough decisions but we are a united front.  We will always do what is best for our boys and family.  You know before I moved here I just didn't get the whole Basketball team thing.  I was actually resentful of Rick and his life b/c I was left holding the bag.  Once we moved and I was able to witness first hand what his school was about and what an impact Rick has on it, completely changed my tune.  I am so so proud of Rick, not only for winning two State Championships in 4 years but for the mentor he is to these kids.  He has gone from a gym teacher to an Assistant Principal in the past four yrs.  You know he will never have his own boys that will play ball but he is blessed with his own team of boys.  I tell Rick all the time (jokingly) that I didn't really start loving him until we moved.  Of course I have always loved him (after all we have been together for 20yrs). but now I respect the person he is and what he does.  Nothing is perfect though, like any married couple we have our moments but in the end we are there for each other. 

The kids.....

Janessa left Spencer kicking and screaming.  She hates change and still talks and misses our old house.  She has grown up into a tween already at the age of 10.  Thankfully through the Palliative Care program, a Social Worker came and worked with Janessa to help her cope with Avery being in and out of the hospital so much.  I think it really made a huge difference.  She is now able to talk openly and honestly about the future of the boys.  I am pretty upfront with her about the boys diseases.  She is a smart girl and gets it.  I am so proud of how well adjusted she is and the girl she is growing up to be.  Janessa truly gives us our normalcy in life and I am going to be sad when she is out of this house one day. 

Isaiah, at the time of the move he was starting to wind down from all his hospitalizations.  He has gained so much strength over the yrs, its so great to see.  He was always able to roll everywhere but had little to no head control.  Well he has come a long way in that department and is learning so much at school.  It's amazing.  While he has struggled so much with the retching cycles, he has come a long way in so many other areas.  When he was an infant and little was known about his disease, we thought he wouldn't live beyond his first birthday.  Look at him now.....Cannot believe he is going to be 9yrs old in June.  The kid has only had about 2 colds in his life.  Honestly, his immune system is better than most people.  He is the one that puts that smile of my face. Isaiah is such an awesome kid and I am so proud of him and how far he has come.

Avery, oh Avery.  What can I say, this lil boy has brought so much ciaos to our lives but I cannot imagine one single minute without him.  During his first year we thought that he had a milder form of the disease.  Turns out he has the worst form of it.  He has accrued more diagnosis in the past four yrs. than some of my patients in the nursing home.  But I will tell you one thing, he is such a stubborn little fighter.  He is a tough tough guy.  Thankfully his parents strong personality traits b/c he needs them.  While he has gone through some tough things, he manages to come back like nothing ever happened.  He has taught me so much about determination and instincts and so much more. 

So while this has been a crazy crazy four yrs of blogging, I wouldn't trade it for the world.  We have such an amazing family and earned a new family at Central.  Thank you for all the people that have helped us over the past four yrs.  We could not do it all with out you.  Thank you to my nurses b/c without them my boys would not be where they are at today.  Thank you to the Seymour's (Avery's first daycare), didn't matter if I sent him with a new NG tube, g tube or whatever tube you guys took such good care of him.  Thank you to all the therapist and teachers that have helped my boys along the way.  Most of all, thank you to my mother in law Fran and Jim for always being there for us.  We love you all. 

700 blog post certainly sound like a good book to me :)s