Fair Time!!!

We took our yearly trip to the Fair tonight. Fun as always!!! Of course we go for the food!!! Finn had his first dinner on the midway. :) Hotdog was good, apple filling in the funnel cake was yum but the Cotton Candy was Awesome! Like mother like son...we never doubted he would love it! LOL His favorite parts were of all things, some woman who was doing the target shooting with the guns that I guess are suppose to sound like machine guns or something. We were just walking along and Finn started cracking up!!!! You never know what noises might hit his giggle box! The Talent show singing was a plus as well but the quietness of the parking lot was another favorite for him. Bet some of you wish your kids would be as excited to leave the fair! LOL! FUN NIGHT for the Jones' family!

#6

Well today was the day! We have known for about 3 weeks Finn was going to have yet another surgery on his head/brain. I just have not wanted to think about it at all. Well now it is all done and we are tucked in for the night after our 4th surgery with the ole brain surgery and 6 th surgery all together. So I shall make a post while I sit here. So as most of you know he had his "bubble" subgalial shunt which was suppose to last 35 days max. However Finn's lasted apparently a record breaking length of time! When we went for his last check up and MRI they decided that yes he needs a shunt permanently where they had at one time thought his body corrected itself and the bubble would just dry up. So today they had to go in and fix the permanent(VP) shunt so it would start doing the work instead of the bubble. Ugh the last thing I wanted to do after going so long with no issues. But After a long day we now are tucked into the room. Everything went great and even better than thought bc they didn't have to change his line or entire shunt so he only has head incisions. No neck or tummy!!! Going to have to either sport part of a Mohawk or the trump comb over might cover one half the mess! Finn hated all of his dangling attachments, and has ripped everything off including his head bandages so fingers crossed he goes to sleep and forgets about his iv!!! Amazingly Finn is up and playing right now. And I am actually wondering after a day of lots of sleeping how we will ever get him to sleep for the night! We are in the new Benjamin russell hospital which I can't even tell you how nice it is! We are lucky to have this place!!!! But nice as it is I'm still tapping my toes wondering how long til we can hit the road! They say after he eats breakfast and lunch so say a prayer for that and that he heals as beautifully as he has in the past! Pumping lots of antibiotics as we speak!! I will post some pics later from our day, I don't know how from the iPad be they are on my phone.

Exciting times at our house!

As always there is lots going on in the world of Finn that I keep meaning to make a post about but this deserves a post of it's own!!! :) Take a look! Finn has made a big move "up" in his huge journey of progress!!! CAJ and I took a little trip to the beach this past weekend and got a great text from his favorite friend and Nanny saying he was no longer content on the floor!!! When we got home we had one of the most fun afternoons ever with Finn! He out of the blue just started pushing himself up from his stomach onto his little bottom!(it's W sitting but for today who cares we can deal with that another day) We went from room to room as you can see and watched him. No matter where he is he can do it. At 10 days shy of being 20months Finn is no longer only on his tummy :) He is as proud and excited as we are!

18 months!!!

SO it's been a while but I will try to keep it brief! We have been on the go literally all year. We had a trip to Nola for CAJ's work and I swore after that there would be nothing on our calendar all summer. We are doing a pretty good job of keeping it open. Our weeks still seem quite busy though but that's ok I just meant weekends! Where has time gone! Finn's now 18months old and getting bigger & more fun every day!! Finn has started OT and ST in Ozark on Tuesdays and we go to Bham every week for something different. One thing we go for once a month is their Rehab program. I am always hesitant to tell things Finn does in fear I may jinx him. ;) There have been things he would do and then he would lose it, which is not uncommon for fellas like him. Just when I was figuring this out he started picking some of them back up. Anyway as of today Finn can find his bottle in a small space around him and control it. If we say bah bah or milk/juice he reaches out for it. He has also picked back up on something he used to do, he will let me give him cookies in small bites and on a good day will bring it to his mouth. Used to he would eat a bowl of food on a good day, now he wants 3 meals a day. His menu is slooooowly expanding. The funnest thing I have ever fed him was a hotdog...(yes I know they are horrible for him! It was just like half of one.) I was just pleased to get to fix the kid something you would expect an 18month old to eat. He ate his cereal mixed with Spinach also so no worries Mother! He has gotten quite demanding and can really throw that head back and pierce your ears! The pool is his favorite past time. I mean a boy named Finn dang sure should Love the water LOL! Though I mention he has a temper he spends most of his day being happy and constantly laughing. (probably at Me!!!) He defintely knows who we are...he squeezes me so tight around the neck when I hold him now and would ride around like a monkey all day if I could let him. His best friend in life is his Daddy, you should see him smile when he hears him. CAJ is formally known as Bye to Finn. He is keeping his 2012 resolution that he would start sleeping and that has changed our life alot! AND my most favorite accomplishment just started last week! It's mainly one toy that gets him to do it. It's a sensory thing I call the space shuttle. When we press the vibration button HERE HE COMES! As of now we put him about 3 feet away and he can pull himself with his arms to it! It is really exciting to see him do it. 1 he knows something he wants and 2 he can go in the foward direction to get to it!!!! I just love watching him do it! I like to share with you Finn's accomplishments in life because I owe it to the only One that knows anyone's true prognosis... The Great Lord above us! We were told such a grim prognosis and Finn is complete proof that we Know nothing! Never give up when many may be less than encouraging.

NAIT Gathering

So as some of you know I am in a support group online for Mothers with NAIT. The afternoon we got the news that I had NAIT, CAJ signed me up for this group in hopes of us learning as much as we could about this awful blood disorder that Finn was affected by.
Well after a year in the group and many great friends on the internet later I was invited to go to Chicago for a weekend to meet several of them. 2 of the Moms had met once but other than that we were all only "cyber" friends. I have gotten to be friends with a wonderful mom who's sons name is also Finn! He is about a year older than our Finn. So I was super excited to finally get to meet her and then I also met 5 other NAIT moms. The Moms I met are from Chicago, New York, B.C., and Louisville KY. I can never start to tell you how much joining this group has helped us. I encourage any of you that God-forbid, find yourself looking head-on at a challenge in your life to seek such a group. They have been the greatest source of info and encouragement!!!

Hmmm....

Well we went for the consult to schedule surgery to take out Finnemore's tonsils and adenoids. I was pretty aggrevated we had to drive back up there just to pay $30 more dollars and for them to put us on the schedule. The pulmanologist read the sleep study said they needed to come out...can't we just drive up once and do the surgery!!!!
WELL I guess they were right the ENT needed to check him out before we just showed up for surgery. FINN HAS NO TONSILS NOR ADENOIDS! His tonsils may not have started growing yet sometimes that happens and his adenoids the dr said probably just never grew when he was newborn b/c he was so sick and his body had other things it was busy trying to take care of.
So sounds good, yea but we were hoping this would fix his sleep apnea.
They told us last week a majority of the spells were obstructive apnea but today they said no they were central. Central apnea is caused from brain injuries. When he gets in a deep sleep his brain forgets to breath. I left perplexed that after such an indepth conversation with the pulmanologist he was wrong. So I told the ENT to call the pulmanologist re-discuss the sleep study and call me back.
Dr today said there was a chance they may let us wait 6 months and see if it gets better. Fingers crossed!!!!!! Otherwise he will join in with all those ol' snoring men out there and get himself a Cpap machine. or worst case have to sleep with Oxygen at night.
On a good note we jumped off at 85 and slid into Namedropper and refreshed the wardrobe for spring!!! First time ever I have seen some many cute boy things I had to make choices and leave lots behind. So Moms of Boys, Run Run fast Namedropper has tons of options!

The latest on Finnemore!

So last week we made our way to Bham for a Sleep Study and Swallow Study. My wonderful mother-n-law volunteered to go b/c CAJ had his work tradeshow. CAJ owes her big time! It was less than a pleasant experience. LOL
SLEEP STUDY....They had ordered this to be done when we got tubes and his oxygen was statting around the mid to upper 80s. It should be 98-100. Plus they suspected that him not sleeping at night may require meds as that is common for children like him. I was very against that and he has pulled through and shown us he can sleep at night and get himself back to sleep if he wakes. His sleeping had improved for several weeks but now he is waking a couple times a night again but nothing crazy like he was doing. So they got him all wired up which took like an hour and a half and he screamed the whole time. Finally by 930 he was done and we got our little vinyl chair/beds situated. Of course he flipped around and his nose pieces kept coming out so they kept coming in. They also kept it freezing in there b/c they can't sweat during the study. Wierd.
The results showed he had over 50 spells of apnea in the night and a majority of them were due to obstruction. Soooo we are going to get rid of his tonsils and adenoids. Not excited!!!! They assured me this wasn't just the new trend and that he really needed it done. THEN THEY DO THE STUDY AGAIN!!! OMG I think this time we will let CAJ and Papa Ricky take him! j/k!
Prayers that improves it enough b/c if not we will be looking at Cpap or oxygen at night. We aren't going to even think about that right now.
Now for the good news....the SWALLOW STUDY!
They strapped him in a feeding seat and proceeded to give him food with barium in it and an xray machine beside him. Pretty fun to watch! Dr was very pleased and said he showed no signs of aspirating. He was swallowing everything beautifully!!! WOOOWHOOO!
They have ordered us to start outpatient OT to work on him eating. It is not uncommon for kids with visual impairment to be behind on eating solids. Makes total sense and that is what we thought and we were excited they agreed with us! I mean that is pretty brave to open your mouth when you have no clue what is going in. So for now we will just keep eating lots of softer foods and encouraging him to work on eating bigger pieces of food. Lucky for him he has our permission to play with his food all he wants. This is how he will learn what it is and that it's yummy and will fill-up his tum tum!!!!



Who knows who came up this study, pretty crazy looking!!!!