Yes, I'm still here :)

By now I am sure you have all stopped checking the blog b/c my updates are so infrequent.  I guess after 5 yrs. of blogging, it's nice to take a break every once in awhile.  It's weird b/c if I run into someone that I have not seen in awhile, I start giving them a recap on our life but they already know it b/c they read the blog.  So sometimes it's nice to not have my life so public.  After all, there is nothing too crazy going on around here.

From a medical standpoint, Isaiah has had a really rough April.  He did this last yr and it ultimately landed him inpatient for some answers.  So at this point I am thinking April is typically going to be a bad month for him.  He basically spent his entire spring break retching his guts out.  Poor kid.  I honestly don't even know what to do when he is so bad like this.  We have basically tried everything over the past 6 yrs and sometimes he is better and others not so much.  This unfortunately is his cross to bear with this horrible disease.  It is just so hard to see him when he is like this though.  I cannot imagine feeling the way he does. But the minute he feels better, he is back to crazy octopus boy.  He has really mastered pulling out Avery's j tube of the past few wks.  You cannot leave him with Avery for even a minute when he is feeling good.  Such a typical brother :)

Avery has lost yet another tooth.  This now leaves him with four missing from the bottom and his two top ones.  Yet another sad sign my boy is growing up :(  He has been struggling for the past week and a half with respiratory issues and low grade fevers.  We are all waiting for the other shoe to drop and I am thinking that will be around his birthday next Monday.  We all know how Avery likes these little holiday's inpatient.  Unless he decides to get better on his own.  He is such a trooper and has really been holding his own, I just don't know how long it can last.

With all this me and my friend Debbie have been planning to go to Florida next week with Janessa and her son.  It just seems like the deck has been stacked against us, more so her :(  Her daughter Jaiden has been in/out of the hospital for the past few weeks with some serious issues.  They really do need a break and I am so sad for them.  I know all too well how it is to be back and forth inpatient and have other kids at home including another special needs child with just as many health issues.  It is still up in the air right now with our kiddos and wondering what path they will take over the next week.  If she is unable to go then Rick will go and that is given that Avery stays well.  So I guess we will see.

I have also been dealing with getting a handicapped accessible van for the boys.  Such a HUGE undertaking financially.  My van still has another yr on it so I decided that I will pay it off then get the van.  I just don't want to have these crazy high payments and still need another vehicle to drive to work. So for now it can wait another yr. 

Other than that I have been busy getting myself into shape and it feels really good.  I need to keep myself healthy and feeling good, otherwise this crazy household will just be more crazy.  Rick and I are even considering doing a mini sprint triathlon.  Well I am trying to convince him and myself :)  Guess we will see.....

I have been informed by many people that is has been awhile since I have last posted. I guess I should take that as a compliment that I have so many readers. As I have said before, no news is good news. I find myself shutting down after hospitalizations. Each one gets harder and harder. Since we only go in when Avery is really sick , it just means that they are more draining. So I try to take some time off all the medical madness.

Avery has been doing great. He has lost another few teeth and looks like a jacko lantern. It's pretty funny actually. He has some days that he is a bit respiratory but nothing too crazy. I am actually impressed with his stamina lately. We have been putting in his stander (a device that puts him in the standing position), he is tolerating up to an hour a day. Whereas Isaiah is throwing a fit after 10 mins. I definitely feel it's helping the major curve in his back. He also looks so big in it :(. Really I am just enjoying my soon to be 5 yr. old and celebrating all the obstacles he has overcome.

Isaiah had a really rough week and a half. His migraines have been bad. I don't know if it's the change of the seasons or what. Everytime we think he is getting better, it comes back worse :(. Outside from that he has gotten sooo good with his hands, in fact he pulled out Avery's j tube last week. Ugh. I just continue to be in awe with how far he has come and how smart he is. My unsung hero!!!!!

Janessa has gone from a 10 yr old to a woman. Ahhh!!! it's so depressing. She now can wear all of my clothes and even has a bigger shoe size. I have no idea how & when that all happened.

And Milo, hmmm...what can I say. He is cute as all heck and has truly turned my life into a reality tv show.


So today is Our 13th yr. Anniversary and I thought it was jinxed especially given the number and bc the diamond fell out of my ring last week and I have no idea when & where I lost it. Turns out I have the best husband who replaced the ring with a gorgeous new one. Meanwhile all I got him was a 6.99 lovers coupon booklet. Lol. All kidding aside, I could not ask for a better husband and father to our kids. I know many guys could not handle the kind of family we have but there is never a question in my mind of the amazing dad Rick is. He is so supportive and loving. We have been through many struggles over the past 20 yrs. and always come out stronger. That is just who we are. Now he may still need that coupon booklet for the "End the Argument pass". But hey, no couple is perfect.

So that is what has been going on in the Nault household. Nothing too crazy just our normal life.

I am still in awe of the Boston Globe article.  They did a tremendous job.  I am so happy that we were able to spread awareness about Palliative Care and Mitochondrial disease.  Without the Palliative Care program you would not see all the smiles with Avery.  We are so very grateful for all they have done for our family.  It has given us and him such a quality of life.  That is what is so important. 

Here are the pictures that were in the Globe.  The one that Avery and I are on the bed together is the cover page to their inner magazine and the other one is on the front page as well as in the article. 

Of course their version is much more cropped which made it amazing.  You have NO idea how much it took to get Avery to look that good.  Thanks to his favorite nurse Sarah who is mentioned in the article and a nursing assistant, they had him looking like a million bucks :) 

There is also a video http://bcove.me/o5co75lq

So as you can see we got ALOT of press.  Even the dragon got some press.  He is infamous with Avery's admission ya know.  I actually need to send it a photo of Avery and his dragon to MTV, b/c everyone thinks Snookie was the first to have such a need stuffed animal but it was actually Avery :)  

On the home front, Avery is doing amazing.  He is back to baseline and his happy self.  Isaiah had a very rough weekend but is getting back to his crazy happy self. 

Happy Monday!!!!

Avery's big debut is in today's Boston Globe (Boston.com). If you can get the physical paper you will see some beautiful pictures :). I will try to scan them in if I can. They came out gorgeous.

There's No Place Like Home

After the dramatic return home and a rocky 6 days for Avery, I'm happy to say he is back to baseline. He was still requiring tons of suctioning with many desats until Sunday. Thankfully, it was my Sunday with no nurse and for the first time in eons both boys were feeling good. In general, Avery is just much happier when he is home. And all that nonsense that the insurance liason was giving me about if they sent Avery home by ambulance this time then it was be indicative of him needing it permanently. I knew that was not the case but they were worried about their costs in the end. I'm just glad I was right about this one :). It is just really really good for all of us to be back home together in our normal crazy routines. I heard from the reporter from the Globe bc she had a few questions & she said the pictures & interview were tentative for March 28th. She also said that the editor noted the pictures came out great. Can't wait to see :)

Isaiah also had his IEP this week. What a difference a yr makes. He has only missed five days of school this yr compared to 45 last year. As a result, he is learning so much. It was great to hear the team talk about all of his accomplishments & how very social he is (just like his momma). He loves the kids at school and has come a long way. When you are seeing so many kids struggle as they get older it is encourageing to see a kid like Isaiah who was so very severe as an infant and now he is getting stronger physically and learning so much. He is just getting better with time. Hopefully he will be with us for many many years to come :)

"Medically Fragile"

With every hospitalization over the past year I hear a term that I know the meaning to but just don't want to hear it applied to my baby.  Medically Fragile is the buz word that was used by many healthcare professionals to describe Avery during this visit.  Of course I know what it means but it is the acceptance that this is how my son is seen by everyone.  And if everyone but me sees him as being medically fragile then it must be true. What does it mean? That he is unpredictable and at any moment he can go from being great to coding.  While I know this is true it is just really hard to accept.  Accept that at a moments notice my beautiful little boy could be taken from me. You can just see drs. and nurses getting nervous b/c he tanks so quickly.  He even scared me during this hospital stay.  Just a simple color change in his face could mean something really big is coming and that just sucks.

This hospitalizations was really tough in so many ways for me.  Firstly, I had just been through an awful tragedy with my best friend and her family.  I was in one crisis while another one was happening in my own home.  Over the past month I have been so sleep deprived and emotionally spent.  Secondly, the trauma of almost losing my boy at the gas station and the panic I felt during that moment.  Especially having my daughter be there after what we had just been through (although I am thankful she was there). Thirdly, the acceptance that Avery is just getting sicker and sicker.  It is becoming much more difficult for him to rebound from a basic cold.  Here we are 4 weeks of antibiotics and lots of work just to get him home only at 60% of his baseline.  Lastly, what I had to deal with to get him home safely.  Let's just say, its all Political and everyone covering there own butts instead of worrying about the well being of a child.  I literally had a break down over this the day before Avery was released.  Many were shocked to see me shed a tear but I did it more out of frustration of the system and disappointment.  It was just not good. 

I honestly don't know how I will be when I lose Avery.   When I verbalize this, people will say "don't talk like that".  It is a reality whether people want to hear it or not and it is our reality. I mean how does a part deal with the loss of a child and in our situation it will be two children.  This disease has no rhyme or reason it just destroys lives.

Avery has had such a huge impact on our lives and so many others that I cannot imagine a day without him.  He had an IEP meeting today and one of my greatest concerns was keeping him with the same therapists and school b/c they know him so well.  I am happy to say that it was a non issue and he will continue to be home schooled and possibly attend the classroom at few hrs. of wk. next year.  But that was not what got me, it was the Avery love fest.  I could just see how many people love that boy.  You could also see the Avery love fest in the hospital.  He has just got so many people with that now toothless grin, crazy long eyelashes and crazy hair :)  One thing is apparent, Avery just eats up all the loving by everyone.  He is all about the love...

This basically sums up the last few wks for me, an emotional roller coaster.  I am just happy that we were able to get our boy home safely in the ambulance.  It was definitely for the best even though some people did not agree with it.  I don't care, I had to do what was best for him.  He is not back to himself and it's going to be a long road.  We just hope to keep him home and happy for as long as we can. 

Quick update

Avery is Finally heading home today by ambulance as i feel it is the safest transport for him at this time. Also I have not seen the Globe article yet so I would check online at Boston.com. I will link it once it's in. I will also update more when I get a chance. I'm totally exhausted and just don't have the energy right now. Thanks