I can officially say it has been three months plus that Avery has been home from the hospital. Over the past week I have had such mixed feelings about this. Anywhere from joy, fear, to sadness. I am so thrilled that this is the longest he has made it home since he was a newborn. Fearful that the next stay could be a "major illness" type of stay. And sadness, while I am rejoicing my boy being home another mito family has laid their sweet boy to rest while another family is awaiting the day their princess leaves them.

We have certainly had a few hiccups in the past week but thanks to my nursing we are still home. Last week we spent the day at Children's because Avery's central line was pulled pretty bad. Thankfully it was still in place and he was able to go home with a functioning line. Also he has had some pretty bad respiratory days. One of his nurses that does a great job with stabilizing was on edge that he would surely end up inpatient. Somehow she was able to turn him around. I am nervous though because she is going home to her country for 6 weeks (in July). Just hoping we can all keep him healthy and out of the hospital. It is nerve wrecking though. Guess I am being a bit selfish!!!!

Isaiah, poor kid. He has been having the worse time with his cycles lately. He has been retching about every 4-5 days now and they last about 2 days. Add that up and it equals a pretty crappy summer. I honestly cannot figure him out after all the years but I do know it breaks my heart. We are seeing his mito dr. In two weeks and I am just hoping she has some new ideas. Although I know that over the past 6 yrs. We have run out of options. It just really sucks.

So while we have been enjoying life at home, it is far from boring. But I'm just happy to have my boys. Please continue to pray for these families.

Feeling Blessed and sad at the same time

Have I said how much I hate this disease? Well if it hasn't heard me then it better know how much I hate it. Way too many babies have been taken in the last year to this horrible disease. It is the new Cancer as I see it. It's brutal and leaves families devasted often taking many in the same family, much like a tornado.

Right now I feel blessed as all heck. It has almost been a year since we almost lost Avery. I would have never thought we would be sending him to school a year later. Instead we could still be mourning his loss. We have another year of his smiles and funny faces. For this I am so blessed. Isaiah just celebrating his 9 th birthday is another huge blessing. I will take what I can get at this point. I'm gonna cherish everyday I have with my boys bc at any point Mitochondrial disease can decide to take the upper hand.

Right now my heart breaks for three families that are losing the battle to this disease. One very special Princess is Eithene (please visit her blog and send prayers to her family on the side panel of my blog). I have known her since she was 6 months old and you could not help but fall in love with the girl with the little voice and tu tu. Many of nights her mom and I have spent at Childrens saddened by our kids ailments and struggles. Eithene has won the hearts of many all over the world. But tomorrow she will be placed on hospice. Please pray for her family as they face these difficult times. Also a beautiful three year old boy Zachary who in his short life has fought the beast called Mito will also be placed on hospice. Also one of my closest friends is fighting for her daughter, she is one of the best momma's I know. So please keep all these families in your prayers.

None of this is normal or fair. No parent should have to go through this especially with babies. Right now I am living a fantasy life (as I see it) but my time will come eventually. But for now I will continue to feel grateful and blessed and love my boys as much as I can.

Happy 9th Birthday Isaiah!!!!!

This is my most favorite Isaiah photo.  Look how handsome he is.  You would have never guessed by looking at this picture taken at 9 months of age that he was a sick boy afflicted with severe Mitochondrial disorder.  I call him my unsung hero.  I say that because Avery has taken the spotlight for the past 5 yrs with all his dramatic medical issues.  But way back when Mr. Isaiah was this beautiful baby that we never thought would live past a yr. b/c he was so sick with the disease.  In the earlier yrs, all the research said the sicker you are as an infant the worse the prognosis.  Hmmph, well this little boy proved them all wrong.  And I am so so grateful.  Honestly if it was not for his retching cycles which have such a significant affect on his life, he would be a physically disabled boy but nothing would stop him.  He is so smart and funny and a crazy little stinker.  He loves to bother the heck out of Janessa (pulling her hair), Milo (constantly steam rolling him or pulling bones out of his mouth), and Avery who is helpless to his older brother pulling all of his tubies.  He is just such a great kid and I am so proud that he proved all the drs. wrong.  I want to wish you the Happiest 9th Birthday ever.  We love you so much Zay Zay and keep proving everyone wrong, especially this disease.  And please no retching tomorrow for your birthday b.c we have lots of nice gifts for you :)

"Normalcy"

So that is the reason why I don't blog as much.  I feel like we are actually living a somewhat normal life.  Both Rick and I go to work and the kids go to school.  No crazy hospital runs and millions of drs. appts.  Although I'm always waiting for the other shoe to drop such as up & coming Holidays b/c Avery typically likes to spend them inpatient.  Or maybe it's b/c he is coming up on a 3 month stretch on June 15th.  It's kinda crazy that we make plans these days and are actually able to keep them.  I cannot tell you how many times in the last 10 yrs I have had to cancel b/c the kids were inpatient (and that includes Janessa).  All this can change on a dime but I have to say that I am getting quite used to the normalcy. 

So in the spirit of normalcy we just had Avery's IEP meeting.  For the past 2 yrs we have been discussing the possibility of Avery going to school physically. Currently he is homeschooled and it works well for him but he doesn't see his peers. And after everything that happened last summer I thought there was no way my boy would go to school with kids on the school bus.  Well the time has come!!!!.  My boy is the best he has ever been (sure he has some rough days but in the scheme of things he is great) so there is no time like the present, right!!!  It was decided that Mr. Avery will go to school 2 days a wk just for 2 hrs.  I know that is barely nothing but we have to start very slow with him.  Remember he does not have much of an immune system and what he has is a result of his weekly IVIG treatments.  He is not used to being around kids at all.  This is a scary thing for us all (including our pediatrician).  He even posed the question of "Are we doing this for Avery or for us" .  I thought this was a great question and this is why I think he is so good for us.  Truth be told, a year ago it was for "us" but now as I see Avery's personality flourishing as you saw in the Globe article.  How can I not send him to school to interact with the kids.  I'm sure the beginning will be rough as his immune system figures out things but in the end I think it will be great for him.  Who knows, if he does well then we will increase his school time.

 I really hope that it becomes the trend of our new life.  But then again, it is Mitochondrial disease.  Just when you think you are doing well it comes back to bite you.

But for now I am gonna continue on the positive path b/c it's working.  Avery has a couple appts. at Children's on Friday (he has not been there since his last inpatient stay) and while I would love to visit people on 11 south (our 2nd home), I probably won't b/c the last time I did after a 3mos hiatus we were inpatient the following wk. Hopefully it is a quick tube change and a quick hi to the Palliative Care team to tell them how awesome he is doing :)

Pictures and Update







Oh I thought it was MY birthday



Vacation Pictures





So as you can see we had a great vacation.  Although we all left with sunburns, especially Rick.  We did a day at Busch Gardens, then Adventure Island and Clearwater beach.  We had a few mishaps at the AI waterpark.  Yup, we lost our daughter in the park for awhile.  Nice huh!! For once our life is simple and we can't manage to keep track of one kid, lol.  luckily she was smart enough for find a life guard to search for us.  Never a dull moment with us.  Overall it is just really relaxing and fun to have a vacation that doesn't involve the medical world.  The boys did great had home.  No problems whatsoever.  I think Milo missed us more than they did, lol.

On the medical front, Isaiah has been struggling more with his cycles. I swear it is allergy related.  He always seems worse this time of the year.  I think he is getting allergy related headaches which triggers his cycles.  It just makes more sense to me.  Hopefully they will slow down during the summer.  In a few weeks Isaiah is going to be nine years old.  I have NO idea where the time went on that one. What a big boy he is.  This will be his last year in single digits, I cannot believe it :(

Avery has been more or less the same.  He has his days that he is really congested but we are always able to stablize him by the night.  He has been pretty good about the bipap which makes a huge difference for him.  For the most part he is doing great.  I don't have any complaints or concerns about him lately.  It's so great to see he is able to stay home for longer periods than the previous years.  I'm just so grateful.  There have been a lot of changes with my work and I very busy now so I try to get as much work done as I can when he is good b/c you never know when things change.  I have even manage to work out 6 days a week for the last 8 wks., wooohooo. 

Life has been pretty good around here and I am certainly counting my blessings :)

Avery had a great birthday!!!! I swear he knew it was his day b/c whether he had his cochlear implant on or not he was so happy whenever you sang to him.  My boy just loooves when it's all about him.  What a cutie.  We had the big chocolate cake with party balloons, hats and all the fixings, buuuttt I think Isaiah thought it was HIS birthday.  Sooo cute.  He was so excited, actually more than Avery was.  Then Avery was belly laughing b/c Isaiah was having so much fun with the Elmo balloon.  Just melts your heart.  The simple things in life.  They could care less about any gifts the were just happy to be with us.....

I am having some issues with loading pictures but I promise you they are awesome and will bring a smile to your face.

On another note, we are taking a mini family vacation tomorrow.  For the first time ever, Me, Rick and Janessa are going away.  I have never left both boys for this long and so far away. Of course I have been a nervous wreck and even demanded that we get going with the Will and at that stuff.  I know the boys will be in good hands otherwise we would have not done this but it is still tough.  Unfortunately, my friend Deb and her son are not going to be on the same trip b/c it just got too complicated with her daughter being inpatient.  Thankfully, her daughter is home and doing much better but it was easier for her to make her own plans and the same for us.  So we will get to meet up for dinner at least.  But I am really excited to getaway with Rick and Ness.  We really need this and it will be great I'm sure.  I know the boys will behave themselves at least until I land.  They are usually good like that :)  Hopefully I can get this picture thing worked out b/c I'm sure we will have a lot from the vacation.

Happy Mother's Day to All the mom's out there.  Don't forget to take time out for yourself b/c you deserve it.....

Happy 5th Birthday Avery!!!

I cannot believe it has been 5 yrs since this lil hurricane came into our lives.  There is no way I can imagine life without him.  So much has happened over the past 5 yrs.  Many ups, downs, scares, tears and smiles and we are so so grateful for all the experiences.  Five yrs with Leigh's disease (progressive mito) is considered pretty elderly.  But I have to say that like his big brother who has simply defied all the mito experts, he is seems to be getting better with time.  What I mean is that he is spending less time inpatient which is a blessing in itself.  Typically, Avery would be inpatient about every 4-6 wks and most holidays especially with small ones were a guarentee.  But now he is going 3 mos. in between stays. That is not to say that he is better all around but maybe just more manageable.  Whatever it is I am just so thankful.   All I can do is hope that he defies the experts as much as Isaiah has and we get much more time with our little champion.  We are wishing Avery a very Happy and Healthy birthday and we love you so very much.