Ok so I know it has been forever.  That means things are good.  Avery just graduated kindergarten which is simply amazing.  Many of us didn't think he would still be with us let alone be going onto 1st grade.  School was the best thing I ever did for him.  He loves the kids and the kids love him.  It has just brought so much joy to his life. But at the same time when we went to the end of the year musical it was difficult to see him as the only one out of 7 kindy classes in a wheelchair, overheating under the lights.  But it is still worth it.  Mr. Isaiah still has his rough patches since the pharmacy error.  But he just turned 10!!! Cannot believe he is double digits already.  What a long way he has come.  This is why we will be going under construction hopefully by the end of the summer.  The boys are just getting to big and they need access to the first floor.  We will be converting our garage into a nursing room, bedroom and bathroom for the boys.  While I am excited that it will make our lives easier, I'm also very nervous.  On the nights I don't have a nurse which is four nights, I will be a whole floor apart from them.  I'm sure it will take some time getting used to but worth it in the end.  Janessa is going into the 6th grade and is such a mature and beautiful girl.

We have had a pretty bad run of hospitalizations this yr. (12 admissions since last June), in total Avery has had 48 admissions in his 6 yrs of life.  I really am hoping he gets a break for awhile b/c he and we really deserve it.  Other than that things are the same ole craziness in the Nault household.  Not much worth blogging these days.  So I am gonna enjoy it while it lasts.

Here are a few pictures...

Yes, I know it has been forever...

Since I last posted, Avery has had two hospitalizations, Isaiah one, we bought a handicapped van, a 14 yr Anniversary and a new 6 yr old and I've been drowning in work.  So now you see why I have not posted in awhile.  I just get so sick of the medical life.... I mean, I know that it comes with the territory but I me and Rick certainly didn't sign up for it.  Sometimes, actually most times, we are just getting through the day. We just cannot catch a break and neither can our boys.  If I don't laugh then I will never stop crying.  Case in point.  Isaiah's hospitalization which was so unexpected as he has not been inpatient in more than 6 yrs but due to a pharmacy drug overdose.  That's another story and something that I won't get into but just glad that both my boys have survived. My point being, that the staff at CHB know Mr. Avery well but heard about his brother but had no idea how crazy our life was until they lost him in his hospital bed., lmao...  Yeah, yah read that right!!! my crazy man was in a caged mesh bed and still managed to get himself lost in the bed.  I guess I really didn't realize how freaking crazy our life was until Mr. Isaiah got hospitalized.  Let's just say, home is where he belongs.  It's safe for all involved......

At this point I have so many emotions its not even funny.  Rick and I go through so much as it is and even more than most go through in a lifetime.  But still we go through it together and always come out stronger.  That's where our kids have learned it for sure.  We are all survivors and just good people.  I don't know what our prize is in the end but I know it's something great for what we endure and will have to endure.  The only thing that gets us through is those beautiful happy smiles.

Can't you feel the love :)
Oh and he did have hair at one point

By the way, don't think we are leaving out Janessa b/c she is already at the age that she thinks anything we do is embarrassing and does not want to be photographed at all.  Lucky the boys don't mind :)

Still here :(

Avery is actually gonna be inpatient for "awhile" from what I hear. Nobody can give any specific timeline bc they just don't know. He has been doing great though. Basically the xray is 99% improved since last week which is awesome. So he seems to be out of the surgical woods thankfully. He is happy as a clam so it's hard to see him sitting in the hospital when he looks so darn good. But with that being said, he has a ways to go with getting his gut to start working and watching to see if the pneumatosis returns once we start his medications. He's on a lot of medications through his gut and a few of them are narcotics so they need to make sure he can tolerate them as well as absorb them. The last thing he needs is to start going through withdrawals. Since this is not common in kids (usually seen in neonates) it's hard to know how long he will take to recover. All in all he has done great given the seriousness of the diagnosis. I'm also grateful to the attending that decided to do the KUB last week which gave us the diagnosis bc things could have gone real bad if it wasn't picked up.

In addition to having Avery in the hospital and our typical craziness, isaiah's school nurse fell down her stairs and was seriously hurt this week. So if you could keep her in your prayers for a quick recovery I would appreciate it. We all love and miss her even Milo :) Also in the midst of that, Janessa had stepped on a rusty nail, needed a tentnus shot and
antibiotics. Then days later she developed a 102 fever. I swear I have no clue what to do with a healthy kid that gets a fever, lol. I'm so used to a fever meaning a hospitalization that I was a bit panicked. Luckily she was fine.

So needless to say it has been a super stressful week. Thankfully, Rick and I work great as a team to balance it all and still have time for ourselves. I suspect Avery will be in for at least another week + :(. Just in time to start planning his 6th birthday party. Yikes, I can't believe my baby boy is gonna be 6.

No news this time isn't such good news. Avery is inpatient of course :( In the 6 weeks he was home he was feeling and doing great aside from daily retching and vomiting the past two weeks. This is not usual for him but we couldn't figure out why his stomach was bothering him so much. I was hoping his j tube was the culprit so we had it changed last Tues but it was in place and not the problem. Of course it wasn't gonna be that easy!!!!

On Friday he started with a croupy cough which is a sure sign that a hospitalization is pending. The fever followed immediately but as usual I was hoping with all our home interventions, we could ride it out at home. Silly me....By sat. morning he spiked a higher temp so off to the resort we headed. He actually looked great aside from the fever that morning and I was sure it would be a quick 48hr rule out for his line. I just have not learned my lesson bc this stay is turning out to be a far cry from a quick & easy stay.

By Sunday morning the *hit it the fan. Avery became increasingly respiratory, febrile with his lower platelets, fluid overload and a gut that stopped working. Oh boy!!!! I decided to take a nice walk bc the weather was so beautiful and I just needed to get out of there for a bit. Well my honeymoon was short lived bc I got a call from the resident about Avery's belly Xrays. Not good. Actually I'm still confused about it but I knew it was very serious bc the Attending (who is pretty laid back) told me he was very worried about Avery. Basically he has (pneumatosis) an area of his bowel that is surrounded with air. This is very dangerous bc if it gets worse it can perforate the bowel and it would be an emergent surgery. This is something you would typically see in neonates. So not very common in older kids. Avery has so many other issues along with this that makes for a grueling admission. He is getting belly x-rays & blood work often to make sure it's not getting worse. He is also very respiratory right now which adds another piece. Seems like this has been caused by either a virus or a bacterial infection. They have no answers yet but he is on a couple of IV abx and needs total gut rest for at least two weeks. All of his meds have been converted to IV form which means he has to stay inpatient bc many of these cannot be given at home (such as Valium & methadone). So he's gonna be here for awhile :( I'm just praying that he won't end up needing emergent surgery.

It's alot to digest huh? My boy is a tough cookie and he seems to be trending in the right direction, just hoping & praying it continues.

I know it's been a long while, as my mother in law keeps reminding me :)

Since I last blogged we couldn't figure out why Avery was so sedated.  Well the mystery has been solved!!! Unfortunately, the pharmacy gave him baclofen instead of clonodine on top of the baclofen he was already getting.  The baclofen is a muscle relaxer.  So it was a bit too relaxed.  It was definitely scary but I'm glad we figured it out and he is ok.  This boy is just so unbelievably resilient.  Since then he has been doing ok.  At this point he is supposed to be going to school 3 days a week but between drs appts and sickness he may only still make 2 days.  I'm just thrilled that he is even at the point of going to school this much b/c he loves it so much.

Isaiah continues to struggle with his cycles, he had a pretty bad one on Sunday :( but other than that he is great.  He is getting so strong which is amazing considering his diagnosis.  Janessa is doing her thing.  She is just so busy between girls scouts, school play and student council that it seems like we hardly see her.  Also she is already at the age of not liking her parents and wanting to be with her friends all the time :( so sad.

I have decided to start working 4 days a week b/c I was basically doing it but without the benefits. Although it's a big commitment given my crazy life, I think it is worth it.  I always figure out a way to work it out.  Thankfully I'm still seeing my counselor :)

Unfortunately we did not last very long at home :(. Maybe Avery was so depressed over the Patriots loss that he decided he needed to check back into Children's, lol. On Monday afternoon he fell asleep unusually early on his beanbag and was having some apnea spells. We thought he was just tired but it continued into the next day. He went to school but I had to pick him up bc he was totally knocked out and pale. It was very very concerning so I brought him to the ER in hopes that it was something "simple" like he needed a blood transfusion. Well silly me should know that "simple" and Avery are never used together. The other thought was that since they increased his Valium (while he was in 2weeks ago) it could cause the same symptoms. That would have been a good explanation but not likely since it was a small increase and he has been on it for yrs. In fact we were all hoping that was the cause bc it was fixable by just going back to his original dose. But of course, things were not that easy to solve :(. He continued to be lethargic with apnea and low heartrates while he was inpatient. There was some questions of further progression of his disease and some debates of whether an MRI was necessary. I didn't think having an MRI would change our treatment for Avery and the team agreed. By the third day, Avery was back to his happy cute self so brain damage didn't seem likely either. So we basically went home on Friday with no answers. I thought it was a fluke thing but he had another episode yesterday. At this point I have no idea what is going on. We are just taking things day by day and hoping it goes away. Seeing him look so so good on Friday gives you so much hope but it's quickly taken away when you see his lows. This boy is such a tough cookie but he really deserves a break.

Home at last

After 11 days inpatient battling fevers, low platelets, fluid overload and respiratory issues Avery came home on Sat. There is still no conclusions as to why he got so sick except for the default "viral". Avery is a trooper as always and tough as nails. He should be going back to school tomorrow. I'm just relieved to have him back home bc balancing work, hospital and home is getting real old and exhausting. Although I know what the flip side is so I guess I will just deal with it. I'm just glad I have my counselor to help keep me grounded. Don't know what I would do without him.

Guess where we are ???

Our home away from home, Children's.  Avery was admitted on Wed for fevers and lethargy.  It's still a mystery as to what he has as everything continues to be negative which is very frustrating.  We were supposed to go home today but he started spiking high fevers again last night and today.  My guess is RSV again b/c he is mimicking what he did the last time he had it.  He is holding his own given how bad he feels.  Poor kid :(  I will try to keep you posted on how he is doing.

I wanted to say a HUGE thanks to the donor(s) of the Sesame Live tickets.  The time of day was perfect and both boys were feeling great.  Although the snow was a bit of an issue, it was so worth it.  Avery absolutely loved it.  We were so close to the stage and he never took his eyes off it.  He was laughing the whole time.  Just priceless.  Isaiah, well let's just say he is a typical 9yr old :)  I think he would rather it was Spongebob.  Thankfully I brought the IPad so he was able to watch that instead, lol.  Janessa was also less than thrilled but she survived.  It was just great to do something for once as a whole family.  Thank you!! 

The next week (the end of the month) is going to be crazy for me work wise b/c I somehow inherited another Audiologists territory.  Which gives me about 65% of Massachusetts, fun times!!!! Mr. Avery is suddenly showing signs of not feeling well.  He need a dose of IV lasix which he has not needed in a long time.  He usually throws us a few pebbles to let us know something big is coming. I'm just hoping it's a fluke thing and he is going to be ok.  It's so great for all of us when Avery is well.  I hate to let that go if even for a little bit.  So I could use some positive thoughts right now.  Thanks

To Answer the question...

Why don't you blog much anymore?

I guess there are a number of reasons....  The first is, I'm finally taking time for me.  I think I have gotten so caught up in the last 5-8yrs of medical overload that I have not really taken the time to truly take care of me.  I have always been in the mode of "just do" and haven't really taken time to feel,  I have gotten really really good at that.  But since I have started counseling, it's forced me to look at so many things but in a good way.  I really need to shed this "Superwoman" complex and just be Nicky a mom who is just so sad b/c of the cards I have been dealt.  I guess I have never really taken time to just be sad or grieve my boys.  While I love them to death and would do anything for them, it's still so hard to face that I will lose both of them to this horrible disease.  Just think about it, we were just like everyone else wanting to have a family and we have 3 kids but will eventually be left with ONE. So after really looking at my life and feeling, blogging is the last thing I have wanted to do.  I think also b/c I have just been so busy as usual with work, the kids, and life in general.  Also, no news is good news.....

As the new year has started, I have to say that unlike many others I was not looking forward to what 2012 would bring for our family.  Let's face it, our life is a ticking time bomb.  So I am always faced with the reality that my Avery may not be here to see 2013.  I don't know how you can even think to prepare for that.  So you can see why I don't look forward to the new yr.  But then again, I look at my little man and I am truly in awe of him.  He has overcome so so many obstacles in his life that most of us would not have survived.  This kid has more than 10 lives!!!! When I think of all that he has gone through even since the summer (major respiratory issues, fluid overload, third spacing into his lungs constantly, liver and gallbladder issues and RSV), Geez.  And that is just his last 6 months so you can imagine what he has gone through in the past 5 yrs.  But looking at him now.... it's as if nothing has happened at all.  He is so happy, cute as all hell and will soon be going to school three days a week.  I mean his worst issues right now are constipation.  Six months ago I would have been begging that to be his only issue.  I can say the same for my Zay Zay :) my unsung hero.  While he goes through absolute hell with his migraines, he has gotten so strong.  He is a true 9 yr old in so many ways and oh so handsome.  Of course I cannot forget my girl who is just a great kid.  We had such a nice trip together and it was great to hang out with her b/c it won't last as she hit her teen yrs.  So needless to say right now I feel so blessed.  My kiddos have taught me so much and are the reason why I am so strong.  Every morning that I am stuck in traffic, I play my music and a smile comes to my face thinking about little things that my kids do and that includes the big one (my husband).

So that is what I have been up to when I am not blogging.  Working on Me b/c it's so important.  If you don't hear from me don't get worried, just smile b/c it means things are going well.  On Sat. the whole family is going to Sesame Live thanks to our anonymous donor whoever you are.  I'm so so excited for the boys and to do finally do something as a WHOLE family.  This just means so much to us.  Can't wait to post some pictures.  I'm sure we will have plenty of stories with the pictures b/c there's always drama with the Nault's :)

I know my posts have been few and far between and I apologize for that.  I feel like it's the same story different day.  To be honest, by the time I think of blogging I am already in bed.  The days just go by so fast and I have such little time.

Going back to Christmas.... Avery went to Children's for a slew of tests just prior to the weekend and thankfully everything had improved.  This means that the medication is working and he should not need surgery.  It was a huge weight lifted!!! We ended up having a great Xmas.  I swear Avery knew Santa was coming on Christmas Eve b/c he did not fall asleep until midnight. On Christmas morning he was sooo happy and it was such a blessing to have him home with us.  I really didn't need anything but my family home together.  Unfortunately Isaiah was not feeling well most of the day.  But it was Sunday so we pretty much banked that he would not be feeling well :(

Since have basically been working and running to the drs. with Avery for bloodwork, ultrasounds or some type of X-rays lately.  He is still not himself, although I don't know who that is anymore b/c as soon as we resolve one of his issues another is soon to follow.  Thankfully, his liver/gallbladder are looking much better and he is no longer yellow.  But of course, the insurance company is refusing to pay for this medication that has reversed these issues. What a pain!!!  As soon as his liver was starting to look better we started dealing with daily vomitting and crying due constipation.  Poor kid just does not catch a break :(   We have him on a new bowel regimen and I am praying that it works for him b/c it's so heartbreaking to see him so miserable.  After all, he is going to be going to school another day (he's up to 3 days now).  He is doing awesome there and we are trying to make the best of it for him.

Next week Janessa and I are going to Georgia to see my sister and her family.  We have not seen the kids in over a yr and are very excited. I have to say that I am nervous.  At this point of Avery's care, four days is a long time to be away from him.  I am confident in my nurses by Avery always has something up his sleeve.  I hope he doesn't this time.  It gets harder and harder to leave these guys :(  That's why we always purchase insurance b/c you never know when your gonna need it around here.

I guess that's it for now as I have to run to pick Janessa up for Girls Scouts!!!!!