No idea where this came from but Mr. Isaiah has been wild today as usual but whining which he usually does b/c he does not like what is on TV. So I pick him up to sit with him and feel his belly which is scorching hot. Take his temp and it is 104.1.....WHAT..... He is acting perfectly fine. He is never sick. I give him motrin and still not down then a tylenol supp. and it is finally going down. Then......

Janessa announces she is not feeling good. He is complaining of a headache and belly pains. Take her temp. and she has a 100.9. WHAT......

Avery has napped twice today which is unusual for him. We well see. Although he has not slept through the night in the last week or so. I am sooooo exhausted. To boot, we have no nurse today or tomorrow. Should be an interesting couple of days.

I day in the life of the Nault's

Pictures

Good News!!!!

Avery was successfully hooked up on Friday to his cochlear implant. It was amazing. My nurse was in tears. He is HEARING!!!!!!!!!! and pretty immediate too. He was sitting on my lap when he was first turned on and the audiologist said that kids don't always respond to sound for at least a week or two as they have no idea what sound is. Mind you Avery is still not feeling well with all that he has been through and has been so low energy and basically like a noodle. But he he heard my voice, he had the biggest grin ever.....

He is doing so well with the implant. He definetely knows my voice. AWWWW. what a great feeling. He is slowly trying to figure out everything else but he is absolutely hearing. So amazing and what an incredible gift. After all this little man has been through, to finally have something good for him is just so uplifting. I just cannot wait to see what the future holds for him. He is still having trouble with pain, sleeping and has lost alot of skills but I have faith that this will all come back with time.

BTW Rick's team is still UNDFEATED 7-0 BABY!!!!!

Things seem to be back to "our normal" . Back to crazy schedules filled with work, drs appts, and gymnastics (this was all just today) but again this is normal life for us here. Avery is of course happy to be home. He left eye still looks heavy and some minor swelling. Some definite noticeable changes in him but he seems like he is slowly getting back to himself. I just hope he can regain some of his skills that he had. He no longer has an interest in food and wants to be held constantly ( I can't blame the poor baby). I don't even know what he baseline is anyone b/c he seems to be sick more than not.

Isaiah is hysterical these days. He is so happy mommy is hope. I guess it was noticeable that he missed me. He just kills me. I guess he had no interest in doing vision therapy at school, so he kept his eye closed the whole time. It just cracks me up. He is just so smart and funny and the sweetest boy I know. My goal for this yr, again is to get his spells under control so that he does not experience this chronic pain. I just want him to be happy.

Janessa is having a real hard time sleeping in her own bed lately. Poor thing. As you can imagine, she goes through so much with the boys. Not to mention, her room is downstairs, separate from all of us. No wonder. I am the softy and don't mind her sleeping upstairs. Rick is more diplomatic and has her on a reward system when she sleeps in her bed. He is so good with her. She was happy going back to gymnastic and Friendly's just her and I for a highly fatty meal tonight. She is just so sweet and caring and just loves her family.

Did I mention that my husband's team is UNDEFEATED so far this season. WOOOHOOO. He is so good at what he does. Proud of you babe.....

Hopefully, Avery is getting turned on Friday to his cochlear implant. I will let you know. Can't wait. This boy REALLY needs to hear. We will see or shall we say hear.

Update Finally!!

To say it has been a long and draining week is a complete understatement. So when I last posted, I was on my way to the ER w/ Avery. Just 2 blocks away, he starts vomitting out of nowhere. I have to pull over and reposition him so he does not aspirate. But at the same time I have to get him in. So I proceed to drive in while he is still vomitting. Pulling into the ER with valet helping me in and run into the ER w/ him still vomitting then have to put him over a trash can for yet more vomitting. Mind you this is not the reason we are checking it. It was actually a planned admission for the CT scan. So anyways, check in and get settled, he is already dehydrated from vomitting. They do a simple unsedated CT scan which seems to be okay. We finally get into a room at 1am for which they take more blood from him.

Then the fiasco begins. He CO2 level is dangerously low requiring him to go to the ICU for immediate treatment but I know that this level is not right b/c he looks okay to me and tell them they need to repeat it b/c they were also going to cancel the special CT scan for which I knew was most important and the whole reason why we were admitted. So drs. are in a panic and get the lab to repeat the level, and what do you know.... It was fine. So the CT was back on.

The sedated CT goes very smoothly. Back up to room and dr meet with me with the results. This is where is goes downhill. The CT shows that his left internal jugular vein is totally occluded, meaning that blood flow is being restricted and backing up on the left side of his neck and face. Good news is no bleeding in the brain. Bad news is the treatments are too life threatening to proceed with. So the only thing we can do is keep him on the blood thinners long term and hope and pray that this major clot does not break off and cause either an aneursym, pulmonary emoblism or a stroke. OMG how shocking. Basically they just pushed us out the door literally today (which is a whole other story) and say well all we can do it keep in on the lovenox and keep checking to see if it gets better. Are you kidding me......

So my baby is a ticking time bomb. I hope and pray it never goes off. I have never felt so helpless in my life. My poor baby is just so lethargic and lost so many milestons of what little he had and I just pray that he is able to regain some back. Just really sadness for my little man. He has been through so very much and is just such a little fighter. You do know his name means COURAGEOUS. Had no idea when we named him but get it now.

Prayers are always welcomed.

My Mommy Instincts Were Right

Avery had a hematology appt today. You know how I have been saying that something is not right, his left side of his face is still puffy, he is lethargic during the day and not sleeping at night. Hematology was concerned and called neurology as well. We saw our neuro dr and she had concerns. They ordered an ultrasound of his clot. He has a new one in his shoulder that was not there before b/c it looked fine 2 weeks ago when they checked and the one in his neck is still present. They are ordering a very specific CT scan to look further into the blood vessels in his head. This needs to be done sedated. The nurse that does this ,check him out and saw his complex history and wanted the head anesthesiologist on it. I am so sick of hearing the word "COMPLEX KID" I heard it about five times today.

Anyway, we are being admitted b/c he needs to be sedated and on no feeds for 8 hrs for this and there is a wait for this test so hopefully he can get it tomorrow. The neuro also wants an MRI to see if there is any progression of the disease.

I am sad b/c he was supposed to get hooked up to his implant tomorrow. Yet again, we have to put it off. I will try to keep you all posted. Rick may have to.

HAPPY NEW YEAR!!!!!!

I cannot believe it is 2008. What a crazy yr. we had. a record setting year of hospitalizations and a major move for our family. Yet we survived it all. I am just hoping that 2008 brings us a healthier yr. or at least less hospitalizations. Although I do have to say that it is NOT starting off that way.

Isaiah's retching spells have been far worse and more frequent. He started his day off today happy but my noon it was in a bad spell. I gave him valium which helped for a few hrs. but soon wore off. He also had a fever which is unusual during a spell. It is so hard to tell if he has a stomach bug or something else b/c he cannot vomit so you cannot distinguish retching. I just hope this new dr. we are seeing next month can really help him out. I just cannot stand to see him this way. The neuro is thinking of starting him on a daily low dose valium. We will discuss it and possibly see if it helps.

Avery is still not himself. His face is not as puffy but he is still lethargic, floppy and sleeping horribly. We have drs. appts. everyday this wake. Maybe somebody will see something. On the MAJOR PLUS SIDE.....

Avery's implant is getting turned on on Thurs. I will be taking video and hope to post it. I just cannot believe that my baby will be starting to hear. It is so exciting.