Little Lincoln, almost 8 months

Awww.. cute little diapy butt boy!

Well, here you see our adorable little boy with his broviac in his chest, his g-tube, and of course that vicious scar from the shark attack!

Why did Daddy HAVE to eat garlic bread for lunch???

Believe it or not, this is Lincoln's bedside window.. it has a magnificent view of the Eiffel Tower.. Ooops I mean, the parking garage!

Yep, pretty sure that idiot in the giant Hummer with the brush guard just ran over a Mini-Cooper! It was bound to happen eventually!

All that's missing here is Cole, and Home!

Lincoln's first Thanksgiving!!

Hey Auctioneer! I bid 3 binkies for that case of rootbeer!

I won, drank the whole thing, sang karaoke, texted some old girlfriends... zzzzzzzz

I love Thanksgiving day football but if the Lions can't get their act together I will switch it back to Barney!

I am LOVING watching Modern Family, these people are hilarious!! I really want to hang out with Manny on the 'Outside' .

Sitting in my window during my hour of freedom!!

Sometimes I like to pretend I'm on the beach in Tahiti under the shade of a palapa! OH, sorry that's just Daddy's hair!

And that's the face I made when I killed that shark that was attacking me with my bare hands!

Daddy loving me...

I can make that face too Dad!

Me and my Daddy...


Good news first: We are 99% sure we will get the Medicaid waiver, which will cover most of Lincoln's care and nursing at home.. which is awesome.. although it is temporary and will be re-evaluated often. We have the home inspection Wednesday and will then know for sure.. the prospective discharge date is Dec. 15 if all goes well.

Bad news: All is not going well. Linc had his new eye exam to check the status of his ROP eye disease. The ROP is resolved, which is great, but an entire new problem has developed. He now has a hemorrhage in his eye.. and that's all we know.. we will get more info tomorrow when we meet with his eye doctor... sooo frustrating! All we know is she needs to talk to us and he has a follow-up exam in a week. This could very likely delay his release but hopefully not.

Other than that, Linc is doing well.. he is up to 7ml's of formula, they decided to try increasing it twice a week by one cc, looks good so far but he's also the kid that ends up getting the oddest and most unexpected issues to pop up!

The Medicaid interview was NOT fun.. the lady was very nice but it was awful to have to hear them discuss his every diagnosis/issue right in front of me. I was ok until they approached the brain issue.. but he is doing ok so far.. he is a little delayed but nothing more than any other NICU resident so we are holding onto hope that he can overcome these delays. We will be getting physical and occupational therapy at home if he ever gets there!

OH MY GOSH.. haha, had to add that, Medicaid lady DID ask us about our 'emotional' state and our 'physical' state.. I went into way too much detail trying to explain how I'm NOT crazy and when it was Greg's turn his ENTIRE answer to her was 'Good'. Haha!!! soo glad that is over!

Thank you to everyone for all your support and prayers.. it is very appreciated!!

SuperDink!

Come on Obama.. where's the healthcare reform??? Sheesh! I would LIKE to go home soon!

I guess Mommy went to Macy's again.. but REALLY a tweed suit?? At least I'll look good for my internship at the White House!

You're not laughing 'with me' you're laughing 'at me'! I don't see what's sooo funny!

Susan and I play SuperDink at night.. she's Lois and I save the world from destruction!

Ok Nurses, if I hear ONE more giggle about my sweater vest I will come up outta this chair and you WILL be sorry! Dr. Wispe picked it out!

Grandma's got me.. got my Ugg's on... no, those aren't capri's they are very cool Kenneth Cole jeans... where's Kim when I need my pants fixed??

Little Linc is doing great! He is at 5.5 ml's of formula, which is the highest we've gotten so far! He is almost 14 pounds and such a cute, sweaty, chubby boy.. adorable!

We had a great weekend, Cassy had us a baby shower and we got soo many wonderful things for little Dink.. he will LOVE them all.. and we had such a fun day! Thank you Cindy, Jay, Christy, Krystle, Crystal, Shelly, and all of our friends for doing soooo much to help and all the wonderful food!!! We love you guys!

Greg and Linc's newspaper article has generated a lot of response from everyone.. the picture was a hit.. the only thing that bothers me about it is that the article almost insinuates that we personally owe a $3 million dollar medical bill.. we are lucky that Medicaid has covered the majority of his costs so far... we are not sure what will happen next since that is over when he is discharged but I want to make sure everyone knows we are not responsible for that much of a bill... don't get me wrong, we have a ton of medical bills, etc.. but nothing near $3 million or we would be in serious trouble..haha! Greg says I'm crazy (true) but I just don't want people thinking that. Our big issues are now shifting to how we will manage without my income when he is home, how will we manage the costs of his medical supplies, medications, equipment, nursing etc.. but if he is approved for full Medicaid some of that will be covered.. so just to clarify we are not in debt millions of dollars.. lol! We are very grateful for all the support and the donations in Lincoln's name.. we will use them wisely.. his care will be very complex but we are ready for the challenge. We are getting quotes from companies to have a backup generator installed in our home to ensure Lincoln's equipment never loses power and to keep his medications safely at the correct temperature, and we are hoping to have an air purifier installed in our home to keep his lungs as healthy as they can be with is lung issues. But we are prepared for whatever happens.. all that matters is that we get him home and give him a happy, stable, healthy environment in which he can grow and thrive like every baby should!

Oh my Gosh! Haha.. that is my direct quote to the 'Marion Star" article.. I honestly did NOT believe that those 3 words ever came out of my mouth until then and now I catch myself saying it 129 times a day.. pinch me if you hear it!

Ok, did any of you watch the Grey's Anatomy episode with the adorable 10 year old boy with short-gut? I couldn't believe they had an episode with Linc's condition.. and of course, we cried and cried.. I cannot imagine losing our little guy at 10 years old from this awful condition.. even though it was not 'real' it was very real to us.. we knew what those x-rays meant and the surgery.. brought back awful memories.. we just pray they DO find a cure or solution to save these little guys...we know the reality we are facing but we refuse to give up.. he is such a strong and amazing child.. he will get through this and we will learn from him.

Ok, on to less depressing news:

The foundation basketball games were soo much fun! We had a chance to meet many wonderful people and thank them personally for choosing Lincoln as their honoree for the night.. he is a popular little guy! We are humbled by the generosity of our community and the surrounding communities that have supported us... we've been on the other end of the spectrum and prayed for families, made donations, fretted over what we would do if that happened to us... and would've never thought that we would be on the other side. Everything happens for a reason, and Lincoln is here to teach us all something. Your prayers and well-wishes are working, thank you!

Tails between our legs...

haha! That was sooo funny! My nurse tried to get a cannula in my nose.. no thanks!!!

Really, Spongebob?? Just marry Sandy and get it over with... sheesh!

After surgery.. NOTHING gets ME down.. I'm the DINK!

Ewww sour skittles suck!

Yeah, I like to wear my nasal cannula on my forehead when it's night-time.. makes me look cool... you know you like it!

Lincoln had surgery last Friday to install a Broviac central line and to be circumsized.. he did great!!!! They told us he would be sedated from the anesthesia and disoriented until the next morning but he came out of it smiling and coo-ing.. lol! All they could say was "It's Linc".. he is the exception to every rule! The Broviac is working great! We spent the day today being trained in Infant CPR/infant choking/G-tube care and emergencies/Broviac care and emergencies.... we learned soo much!

He is 13.8 pounds and is taking 5ml's of formula per hour... for one hour each day he can be disconnected from all tubes and wires.. it is WONDERFUL!! I got to hold him that way for the first time ever last night.. I carried him over to a window and just showed him the 'outside' .. even though it is just a bunch of buildings, at least he could see the sky!!! Daddy got to do that today too.. how precious that was for the both of them... Cassy got some good photos.. coming soon!!

The reason Lincoln is still at Children's is because he is 'uninsured'.. he is covered by Medicaid right now as 'institutionalized' but when he is released that ends.. THEN Medicaid is income based so we exceed the income level and then are completely uninsured.. this is why he is still in the hospital.. because we cannot prove that we can 'self-pay' the 3 million dollar per year cost for Lincoln's care... obviously we don't have that in our savings account...lol! WHO DOES???? Sooooo... the amazing/astounding/shocking.. truth is that we cannot bring him home until we CAN provide that for him.... the one and only hope is that Medicaid will accept him on a 'waiver'.. meaning they will waive our income and take him on based on his needs.. to ME it seems sooo unfair/illegal to KNOW that Lincoln could come home with us if we had insurance or were independently wealthy.. we HAD insurance but that is maxed out and : NOOO Greg's teacher/athletic director salary does not help us bank 1.1 milion per quarter.. lol that's my fault for too many gingerbread latte's at Starbucks I guess...haha! But in all seriousness, our caseworker and social worker are working diligently on this and praying it all works out.. my question is WHAT if it doesn't?? What if Medicaid says no??? Grrrr... and Greg and I have to be 'interviewed' by Medicaid about our knowledge of Lincoln's issues and pass a 'home inspection'.. wow... .. all I will say is WOW because when I say more I cause controversy....

In other news.. Lincoln and Greg were on the front page of the Marion Star sports page today.. great article.. yes my quotes were stupid but that's just me...lol!

Lastly, we would like to sincerely apologize for the 'MILF' onesie picture/caption and the aftermath.. it was all in good fun.. the onesie was purchased by Lincoln's aunts while on vacation.. as a joke.. it basically means 'Hot Mom' and was meant to lift my spirits when I was sooo down and depressed during the initial weeks of Lincoln's life.. some of my nurses thought it was funny and dressed him in it.. we got a good laugh as Lincoln is the 'cool' kid in the NICU and we thought posting it on the blog would be funny.. we are soo sorry for those that were offended and hurt by it..

Parole???

Miley Cyrus comes by every Tuesday to serenade me, she's a sweet girl but I'm committed to Josie!

A real smile!!! Seeee how adorable he is!!!!!!!!!!!!!!!!! Of course, that hamster got him again on the cheek.. Kayla set some traps though so we're good!

Nurse Kim or "Miss Kim" always makes him smile!

Well.. we have been teased by Children's about a possible parole date!!! Or, discharge as they choose to word it.. haha! We might get our Dink home by Christmas!!! That would be amazing!!!!!!!! It is being said that he may come home the week after Thanksgiving... We shall see!!! If and when he does get out of there he will be on full tpn/lipids and g-tube feeds at home... that would've terrified us 4 months ago but at this point we welcome it and are sooo ready!!!!!! Soo... we are expediting this as much as we can ... I was trained on central line site care yesterday (nurses: CHART that..lol) and Friday I have to be trained in g-tube care, cpr, physical therapy exercises,etc... I can't wait.. at this point I am sooo ready for all of this.... we just want the DInk home.. I don't care what it takes... we will do it!!

Linc had an MRI done today on his chest and abdomen to see if any clots were present... if not, he will have his picc line removed and have a broviac implanted... this is all scheduled for friday, and they are also going to circumcise him while he is sedated... that's not funny... but trying to explain the circumcision to Cole was HILARIOUS!! Take ME who does NOT discuss private parts or their functions and insert a 10 year old who also has NO clue (thanks to me) and his response is OMG EWWW MOMMMMMMMMMMMMMM!!! This is the same kid who just stomped upstairs MAD yelling 'NICE PARENTING!'

The scary part of this whole thing is the new no-insurance/uninsurable issue we will be dealing with .. we assumed he would be covered by Medicaid but we were wrong.. once he's discharged it's over....and Lincoln was excluded by our insurance company soooo... wow... as terrifying as that is... it is the least of our concerns.. we will work it all out... all that matters is that Lincoln gets home with us... the rest will work itself out.. just keep your fingers crossed that we hit the lottery! Hahahaha...

Elvis Lives!!!!!!!!!!

Father and Son!!

Mini-Elvis did NOT appreciate the gold glasses... but we did!!

No, I don't feel bad for breaking that kids ankle.. he needs to know to get out of the way when The Dink is on the field!

Cutest kid ever!! In the adorable outfit Grandpa and Grandma Rossman bought me!! Dinosaur!!

Go Deeeeep!!!

Cole as "Elvis" for Halloween...

After trick or treat at Baker's Pizza, Bucyrus Ohio!!

Exhausted after a tough day of coachen' em' up with Dad!

Ummm.. This hat makes me look fat!

Dad and Dink getting in some quality snuggle time...

Oh how I wish I was smart enough to make these snapfish pics enlarge.. why is this so hard??? Tech'ies please help?

Get out your microscope and see how freakin' cute Linc is here!!

Daddy Elvis and Baby Elvis... priceless!

Strummin his guitar.. singing to Mommy! Or more likely, Kayla!

Future Ridgedale Rocket gearing up for game day!

That's the look he gives his opponents right before the SMACKDOWN begins!! Goooo Linc!

Ohhh.. this is the cutest pic... too bad Mommy is missing the technology gene and can't enlarge the pic!!

Ok, we explained the Target pics now we can explain why the Elvis pics! Cole has been to Graceland with me and we LOVED it!! He has been a huge Elvis fan ever since so it's kinda been a theme with us... Sooo... one night he spent the evening with the Wood family and in a matter of 2 hours they managed to: bake cookies, go to dinner, and make Cole an Elvis costume!! Wow... I am proud of myself if I can do one of those things in that timeframe... but the Woods are an exception.. what awesome friends they are!! Of course I then knew I had to find Linc an Elvis costume and amazingly I found one on Polaris the next day!! It would've been great to have all 3 of my Elvis's in one pic but Children's won't allow it yet.. maybe next year..haha!

Linc is doing well.... he is at 3cc/hour of formula still and nothing else has changed. We have a new doctor for the month... Dr. Mantee or Mandee or Manatee who knows.. maybe we will find out tomorrow if he's around... Linc is kind of the big boy in the NICU just hangin' out and being an adorable baby..