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!!!!!