The final countdown!!!

Well well what to do when you get steroids ontop of steroids.... Try out the new baby rocker and update everyone. It was a little much for a status update so I went for the ole blog. Today was my final road trip to Bham for a prenatal visit!!! Bro as Finn says will be arriving Thur week Sept 19th at 8am at UAB's Women's and Infant hospital. Yes we know his birthday but not his name. 30 Almost all day long IVs of "liquid gold" IVIG and 60-80 mg of steroids a day since 12 weeks and now oral insulin for gestational diebetes (brought on by the prednisone)we are FINALLY down to 2 more iv treatments mon-tues and then leave Wednesday for Bham to do blood work and head back to hospital at 630 Thur morning for the big arrival of "Bro" I will be having a Csection at 35 weeks so that's why I got steroid shots today. The ones I have been taking do nothing to help boost baby so he needed the ones to help boost his lungs up for his early arrival. They will have a Matched donor give platelets first of the week and have them waiting incase treatments didn't keep the platelet level high enough. Thank God to whoever the wonderful soul is out there that will be donating. Just a side note Finn's matched donor was in North Carolina so No telling where this great person is. So prayers for great platelet counts and strong lungs would be great!!! Now fingers crossed the rest of the nursery stuff arrives today so I can finish it up this weekend! And pack our bags if anyone has any suggestions of what to pack for me message me!! My mind is blank as to what all I wanted/needed when Finn was born. Happy Friday to All!!!

The Journey for Finn a Brother or Sister!

Well as many of you know Finn is going to be a Big Brother!!! Due October 24th, however I am expecting a possible arrival on my 30th Birthday Sept 26th. Not exactly but def closer to then than 10/24. Common to have CSection 35-37 weeks for Nait Babies. So as you all remember Finn was born VERY thrombocytopinic(sp? that's a big word!) but it means he was bleeding out. It is from a blood disorder I have called NAIT. So I have researched and researched the possibilities of us SAFELY having another baby and it is totally possible. I feel 100% confident in the fact that Finn's little brother or sister will arrive into this world free of the danger of NAIT. So what is happening to prevent this baby from bleeding! We are seeing a team at UAB. They are the same team that delivered Finn and while the most senior dr there had at one time seen a NAIT baby no one else has. We met with them over a year ago and discussed our plan of attack. This took lots of research from all of us but here is what is happening. AND we didn't dream this up and just hope it will work, a Dr out of New York did many years ago and it has many times over been proven to work. We just had to decide when to start treatment and how much etc. I have now had 3 u/s and everything looks good so yesterday at 12.5 weeks we began treatment. It is called IVIG which is made from human plasma and is infused into my body thru about a 6hr IV. Then this part I wasn't expecting until mid20s but they slapped it on me yesterday and said Finn's case was so severe we were starting now unless I had real good reasons not to, Prednisone 60mg. If you see me turn into a balloon I am aware, if I am up blogging at 330 like I was today I am not surprised, if I am moody heres my appology now!!! :) Then they said yesterday we may actually go to 2x a week IV treatments mid20s. Side effects from IVIG can be very flu like, extreme miagrane headaches but as of right now I am ok thank GOD! I have prayed not to suffer any so our life can go on normal the other 6days a week. I had my first treatment at UAB but the rest will be done right here at home with a home health nurse here the whole time. I have to take bynedryl before I start and that knocked me out cold for about 2hrs of it but other than that I will just be sitting here watching tv so come see me :) Now the fun part... I think it's a Boy and maybe we will find out next week when we go for u/s. Of course I have a girl name that Finn was going to be if he was a girl but Boy names I am totally blank!!!

Progress!!!

Woop Woop we have had a great week at our house! Finn has been on a roll!! Tuesday I was home with him because we didn't go to Ozark so I decided it was a good time to test Peanut Butter. So as they said I put it on his hand then his face and no reaction so I gave him a taste. He loved of course! I then proceeded to make him a sandwich. His first ever lunch of Champion kids! Pnut butter sandwich and apples sauce. Plus some squash for good measure! I decided to tear up the sandwich and put it on his tray. We then did a little work in a kind of a reverse way. I took the bite touched his mouth then hand several times trying to get him to connect. Our normal routine basically. Then I was doing something at the sink and I caught a glimpse of his hand reaching around on his tray and turned with my eyes huge just as he was putting it in his mouth!!!! I grabbed the camera to capture it of course! He proceeded to do it a few more times and just made my day. Supper had to be another pb sandwich for sure, we were on the brink of a huge accomplishment. Again he did it and I added manderin oranges thinking he would just squoosh like he has before but nope he fed himself those too! Tonight we had the same great meal but with bananas and even more progress he fed himself almost his entire supper!!!!!! Woooowhoooo!!!! Oh and I guess I forgot to blog about his upright progress...he is now pulling on his bed rails! Things are just really progressing in Finn's world right now! Life is grand! PS This post is from last week but I was waiting b/c I have a video of him doing it but not a picture. I will work on it and add the video later. I don't want to put on you tube. Just had to go ahead and share the exciting accomplishement!

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.