Isaiah 7.17 : Updates, etc.

Well its soon to be a new year and while we've been busy as a family we've been thankful that its been relatively uneventful compared to the last two years. There have been the normal ups and downs that everyone experiences, but all in all its been a pretty decent year. I've wished I would've posted more and always said I would, but never seemed to find the time. I've also realized there's been no major picture update in over 6 months and part of my New Years resolutions this year is to get back to updating the blog more. Right now I'm sitting in a Courtyard Marriott in Lima, OH after we surprised Rachel's Grandparents with a visit on our way back from visiting my family for Christmas. Its been a nice trip, but after a quick stop off in Cincinnati tomorrow to see some more of my family we'll be happy to be sleeping in our own beds again. Anyways until I get to keeping my resolution you can always catch updates from Rachel and me on faceboo...

Sorry about the lack of posts until this morning about this, but I don't like writing about our travels on our blog until we're close to being home again so we're not advertising to the world wide web our home is empty and waiting to be robbed. Am I paranoid? Probably, but I feel better anyways. Anyways, if you didn't know, we're on the return leg of a whirlwind trip to Dallas, TX for Isaiah's annual check up with Dr. Fearon, the guy that gave him his fingers, toes, and his latest cranial vault. We did all we could in Atlanta first (sleep study, MRI) and really only had a half hr appointment with the good doctor for him to look everything over and physically see Isaiah and feel his head, but the news we got in that half hour was great! Isaiah's MRI looked good for lack of Intra Cranial Pressure (ICP) and his sleep study which is looking for sleep apnea, while slightly elevated for a normal child, was not too bad for a kiddo with Apert. We need another ...

Furnacegate 2010 has been resolved, sort of. We ended up replacing just the furnace / air handler for now, which was the part of the system that could have killed us with its lovely spewing CO2. We'll deal with the AC later, and apparently it looks more repairable than originally thought. Still furnaces aren't cheap and ended up being around $3500. Luckily they had a financing deal available so we have a little more time to pay it off than trying to scramble for $3500 we don't have. It was actually installed last week, and man the difference between the old and new is amazing! I guess furnace technology has changed a bunch in 18 years!

Well, things had been going good. Too good you might say. One of my favorite songs is the title of this post, and pretty much the reason for the lack of posts lately. I don't know why, but it feels weird to write "everything is hunky-dory." Don't get me wrong, we're not living in the lap of luxury and Isaiah has not been miraculously cured of all his ailments and developmental delays. Isaiah's progression and development has been coming along slowly but surely, but we've been living paycheck to paycheck for quite sometime now, and really more money has been going out than coming in, but there really hasn't been that huge of a dilemma or hardship to write about, until now that is. You see today we had the winter tune up for our furnace and lo and behold there's a one inch crack in the burner area of the furnace that when on, leaks some lovely CO2 into the house. Put that on top of a blower whose ball bearings are all but shot, a rusting fl...

Today was FOCUS Day at the GA Aquarium. We were lucky enough to be one of the 700 people let in early and got to roam around the aquarium from 9am until the doors opened to the public at 10. It was SOOOOO nice. Isaiah got to sit in front of the big window there for a good 15 minutes and we didn't feel like we were hogging the glass since there were so few people there. He didn't seem too enthused by the penguins, but he did enjoy the otters this time around. As always we had to spend a good 10 minutes in front of the waterfall. One of these days when we actually have money to spare (I can dream right?) I'll build a pond with a waterfall and stream for the guy to play in. He just loves water that much. The plus about that is bathtime has gotten much easier. Back to the Aquarium... Isaiah's getting to the stage where he wants to walk everywhere by himself rather than sit in the stroller, which is good because it tuckers him out and we usually can get a good n...

So lately things have been relatively good with Isaiah. I say relatively because I don't want to jinx myself. Its funny how little we post when all is well and how there are flurries of posts around the bad and stress filled events in our lives. He's been making good progress with speech therapy and approximating more and more words. He's got this cute little sound he makes when counting things. He just points to each item in succession going 'Dee' ... 'Dee' ... 'Dee' He's starting to recognize more things in his color and shapes book like stars and hearts. He can pretty much approximate all of the Mickey Mouse clubhouse regulars and point them out. While 'Mih-E' is still his favorite 'Dah-O' and 'Ooh-E' aren't far behind. He says 'A-E' for Daisy and 'Ni-Ni' for Minnie and can point out each and every one of them including Pluto. It's just so exciting to see the wheels a' turning as t...

So today was mostly a lazy Saturday avoiding the oppressive humidity outside resulting from last nights crazy crazy lightning storms. It also meant doing a little tidying around the house and converting Isaiah's crib into a toddler bed. In the last month or so Isaiah has been leading us to his bed at night, grabbing his Woody doll and his milk, standing near the gate to the hallway waving to us while saying, "nigh nigh." After about the third or fourth time of him doing that we figured he's probably ready for the big boy bed and doesn't need to be 'trapped' in his crib so today I finally got around to converting it. Basically the drop side comes off and the top portion that used to swing down to allow Rachel to reach in now acts as the side rail. Isaiah is just barely big enough to climb up into it and slide on his belly back out, though he's still a little wary of it right now. He's had one nap in it so far and while we're a bit worrie...

Our road trip last week was a blast, other than the 2 day, 19 hour drive each way, but such is life when flying is just cost prohibitive. We're just lucky Isaiah does so well in the car for long trips, that is as long as he has his movies. The main reason we were going was since I was in an old co-worker and friends' wedding, John Yau. We worked together both at TEA 2 Architects and Drive 105 fm and I was honored to do the reading at his wedding. The reception was nice as well and it allowed me to catch up with a bunch of my old co-workers at TEA2. The rest of the time we were in Minnesota was to celebrate Rachel's 31st birthday, catch up with old friends, visit the old haunts, and spend some time with my sister who still lives up there and was gracious enough to host us while up there. On the way up we went a bit out of our way to hit my hometown of Racine, WI where we met up with my Mom and Dad for lunch where they loaded us up with goodies for Isaiah, Kringle and 7 s...

So I think its kind of fitting that here on Rachel's Birthday I finally write about Isaiah's. I'm sitting in my sisters basement in Minnesota awaiting the big gathering we're having up here to jointly celebrate Rachel inching closer to 'retirement' age and to show off Isaiah to our Minny friends. It should be a good time! Isaiah's birthday was pretty good in itself. Its still hard to believe that the little guy is two years old. Though we feel somewhat old hat at all of the Apert stuff now two years ago we were still in that panic phase. What a difference to today. His party was pretty cool. The kid worships at the Mouse's altar, helped along by the annual passes to Disney we bought last year, and his party was Mickey Mouse themed to the hilt. Rachel even went crazy making a Mickey Mouse cake that took her two hours to decorate, but it looked absolutely great. I think all but a couple of his presents were Disney in some way. Tons of Toy Story,...

Brian's been super busy at work lately so I thought I would briefly take over the blog to update everyone on some wonderful news in the Kolis family. Earlier this month I was asked to serve on the board of Corrigan Care, Inc. as Special Events Director. It's a new non-profit in Cobb County, GA that will provide one on one special needs childcare to child up to age six. Their goal will be to ensure that all special needs children will learn in a safe, caring environment, enabling them to maximize their potential, while providing individualized developmental intervention and therapy. We have been very lucky as a family over the last two years. The generous support of our family and friends has helped us with Isaiah's medical expenses so I could be home with him. Brian and I cannot thank each and everyone enough for what you have done for us. However, many special needs families in Cobb County are not as lucky as we are, and they do not have many options for childcare fo...

Sorry for the lack of posts lately. We've been worn down by the summer fun and trying to keep up with our now two year old. Isaiah is a bundle of energy and just looking at him seems to drain all the energy from my body after some days of work. I don't know how Rachel does it! Hopefully in the next couple weeks I'll get a couple good long posts up recapping the birthday party and our trip to Minnesota but for now this will have to do. Rachel has started volunteering on the board of a local non-profit start up that will eventually be set up to help provide special needs daycare in East Cobb (our immediate area) at as close to a 1 to 1 ratio kids to caregivers as possible and be a central place where PT, OT, and speech therapy can all come and help multiple kids in a day without having to drive all over the county. It has been sapping up some of her time as well, but its a good cause that's near and dear to our hearts. Soon we'll probably have a post up about a...

I'll let the video speak for itself...

Blood, Sweat, and Tears: that's pretty much the best way to sum up the last 24 hrs. The sweat was no big deal, just a ton of yard work in the heat and humidity yesterday. The blood and tears are another thing. To start it off, last night we had Isaiah's long overdue sleep study to see if he will need additional surgeries to clear his airways, check for apnea, and see if he may need a CPAP or other breathing assist at night. We were not looking forward to it. We know how crazy Isaiah is in his sleep and that's partially why he's still sleeping in a crib since he thrashes about so much. He had something like a dozen different wires mainly attached to his head, a pulse ox on his toe, bands around his belly, and a breath sensor taped under his nostrils. Needless to say he wasn't too happy and was up seemingly half of the night crying in frustration and annoyance. He really hated the breath sensor to the point when we were holding his hands he would try to get ...

Sorry about the lack of writing posts lately. I was pretty busy at work and we had another family trip over the holiday weekend. My goal is to get some video up this weekend, but then again when do I ever meet my goals. In other news Isaiah is getting big! Yes he is almost 2 years old now! Its really hard to believe for us. Today I spend much of the evening working on adding items to his amazon wish list for birthday presents. We've added a bunch of things, some of which are truly wishes (like who's going to buy him a $650 outdoor playhouse/slide setup), but its fun to think up some of the things that will hopefully bring that beautiful smile to his face on a daily basis! We'll be updating it more in the coming weeks, but if you want to check it out click here !

Happy Mother's Day everyone! Here are a couple of Pix of Isaiah with his various mothers! Rachel of course Grandma Hanthorn Grandma MA Kolis

Isaiah is a walking machine now! To think little more than a month ago he just started walking and now he's starting to run all over the place! Its getting hard for us to keep up with him. Its so funny now to come home from work and have him stand up and run over to me, but its still so odd to turn the corner and just see him standing there after 21 months of crawling. We're learning fast this walking thing has meant he gets into things more and more now. His reach has now doubled in height and he's grabbing things all over the place. His latest interest is reorganizing the DVD's, but only the R-S ones that are just above his eye level. He repeatedly pulls them off the shelf, gives them a good look, like he's pondering which one to watch, and usually either brings them over to us on the couch or tries to put them back in the shelf. He's also intrigued by the refrigerator door. We've got a freezer on the bottom setup so every time we open the fridge w...

Its officially officially, we received a letter from Medical City Dallas yesterday stating we no longer owe anything on Isaiah's last surgery. I honestly have to say this is mainly due to Rachel's tenacity. It's been a four month ordeal that finally seems to have some closure. After months of calling insurance, various departments in the hospital, writing appeals letters, letters to the CEO, CFO, CMO and various board members at Medical City and sending them an email blast its finally done. This was Rachel's full time job while juggling taking care of the little guy and I think she just ended up making more this year than I did. I know how much she hates making those calls and how frustrating it can get, but we look at it as her 'making' money for the family since its less money that actually goes out of our pockets. So far she's made nearly $70K for us this year between the Hospital and a bunch of other smaller bills she's gotten written off or r...

For those of you who are not Rachel's friend on Facebook, I thought I would post Isaiah's little accomplishment from this morning which is also now my desktop image at work. Click the pic to see a larger pic in all of its superheroey PJ goodness.

Sorry about the lack of posts lately. I guess without having a stressful surgery or quite as many bills hanging over our heads lately I haven't had much to write about. Wait a second, we have a 20 month old child who's doing something different and new almost everyday now, of course I have something to write about! Today we took Isaiah to the ATL Opera's family day and he sat through a production of The Ugly Duckling and seemed to tolerate it, but we're not sure if he fully liked it. We toured the Opera's office with him and Grandpa H. We saw the Costume Shop, the musical instrument 'petting zoo' and much more. They had a little demonstration of stage combat and how they make it look real. Well Isaiah has this little thing, he rather enjoys when someone dies or gets hurt on stage and he laughed and clapped his hands when they had a swordfight and the one woman was 'killed.' He's done this before at Disney when The Beast from Beauty and th...

Sorry for the random pictures but Isaiah just decided to walk today. Maybe it's because he met a new friend named Bay, maybe he just decided that he was sick of crawling. All we know is he started taking a few steps and now fifteen minutes later he's walking all over the place. He's even turning, once to run away from mommy. It's crazy. I don't have the video cam with me but I'll get some video up as soon as I can.

Sometimes I feel so isolated because of our situation, and I'm sure Rachel does too. Having a special needs kid has changed a ton of things in our lives, one of which is getting out on our own and even just doing some normal things like going to church. Being that we got pregnant so soon after moving down here we hadn't found a church to plug into and with all of Isaiah's surgeries, both trying to keep him healthy before them and recovering after. It has sort of prevented us from really finding that fit. We never used to have to worry about child care before, let alone finding a church that could handle Isaiah. We had such a great community back up in Minnesota and while we have Rachel's parent's down here and all of our friends on the Apert listserv we've really been missing the personal interaction with people around our own age. The church we seemed to visit the most before Isaiah came along has popped back up again and we met with their child care coor...

Woohoo its snowing here today and actually sticking somewhat. I got out of work a couple hours early and we took Isaiah outside to experience the snow some. He enjoyed it a ton and below is a picture of me teaching him how to catch some flakes on his tongue. It's prefect snow for a snowman and a snowball fight. My neighbor Josh and I may have one later on tonight if his wife can make it home before sunset to watch the kids.

Wohoo, the new compy makes downloading pictures a breeze! So enjoy some of our goings on from the last month. Just click here! Included in the album are pictures from Grandpa Kolis' visit and our trip to Disney World last week among the normal stuff. There are a few of Isaiah hanging out in his new playroom, just look for the wood paneling. Enjoy! I'm still working on the video side of things and hope to be able to post some things by early next week.

(the one you're reading right now) ... more pictures and hopefully more video. Our computer came yesterday and slowly transferred most of the data from the old computer I affectionately call 'Genesis.' The new computer should actually allow me to edit videos to upload to the web much faster and easier. The old computer would take over an hour to compress things down from our camcorder. This one will also allow me to download our camera pictures much easier so the Disney pictures from our trip last week should be up in a couple days rather than a couple weeks since its hard to find a couple hours of continuous time when you've got the little one running around. Isaiah has been doing good, and has been starting to test our patience a little more. We know he knows what 'No' is and has been giving us a little smile after we say it now. Rachel just started trying to do time outs for things like harassing the cat and hitting, etc. We'll see how that goes. ...

Dick Clark here, okay not really. I'm just in a bit of a goofy mood lately. Stress tends to do that to me sometimes. Anyways, we got some fun mail today a bill for over $67K from the hospital in Dallas where Isaiah had his last surgery in November. Apparently our insurance and them are not seeing eye to eye, or should I say network to network since for some reason this time it's getting processed as out of network. We're not paying $67,000 as of yet though. We're going to go through the whole appeals process, and I know we've said we have that as an option in the past for big bills, but it never got to that point. This time, I think it will. Oh the joys! See where the stress is coming from? I've been trying to keep it light lately because for once Rachel is more worried about something than I am (and I'm the one with anxiety issues!) She feels like she's taking on the insurance company all by her lonesome, and that's no easy task. I...

So here's the news I sort of teased about a couple posts ago. We've got a new car! Yes, not that truly exciting, but hopefully as soon as we sell it you won't have to hear the worries and woes of the Toyota. It's a hard car to part with since it's been Rachel's car since she graduated college and was the first car that was really her's, but we needed a bigger car for our trips to Dallas and Orlando and it doesn't hurt to be ready should a little brother or sister come along someday down the road. We still have the Corolla, so if you know of anyone in the Atlanta metro looking for relatively cheap transport let us know! The new car is actually a ' new to us' car. We got a great deal on a 2008 Hyundai Santa Fe with under 15,000 miles and three years / 45,000 miles left on the warranty which give us a little peace of mind on car repairs. We were pretty amazed at what we were able to get for the money considering we've been looking on and o...

I heard about this from Marie, mother to another child with Apert Syndrome, Jack who's blog you can find here or in our sidebar to the right. I also apologize to her because I pretty much grabbed the text below from her. Apparently, January 10-12 are National De-Lurking Days. For those of you that don't know a Lurker is a person who reads a blog or listserve or forum or whatever but does not actually comment. If you don't actually comment on the web, no one ever knows you are there except us savvy bloggers. We know you are there because you appear in our stats but that's just a set of numbers, not names! We know you're out there! Maybe you've thought of commenting but did not want to leave your personal information out there on the internet for everybody to see. No problem! We allow anonymous commenting. Maybe you have thought of leaving a comment but don't know how. All you do is move your mouse so that your pointer is over the picture of a speech bubb...

I did do it New years Weekend like I said I would, but somehow forgot to post it on the blog that I've upload a batch of new photos of Isaiah spanning from September to December of last year, including a few pictures post surgery. You can visit the full web gallery of the photos all the time from the link in the upper right corner of the page under the slideshow, but if you just want to see the new ones I just uploaded click here . Isaiah has been doing pretty good lately. We're over the bug that dogged us over Christmas, but the living room carpeting has yet to recover fully. He's starting to bear crawl more and more and he's been starting to take Frankenstein-esk steps while Rachel or I am holding him upright. We're thinking he might be going through another growth spurt again because he's eating like crazy most of the time and usually wakes up at least once in the middle of the night to chug down a bottle of milk. The playroom is working out nicely and I...