28 December 2009

The Playroom

So we spent much of the Christmas week cleaning up after bodily fluids. First I was sick Monday night and tuesday, then come Wednesday night Isaiah seemingly got what I had and has almost got it licked. Lets just say from Wednesday through Christmas Day (3 days) Isaiah probably had about 15 changes of clothes, 5 baths (one at 3am on Christmas day) and two complete strip downs of the crib. He's doing much better now and has kept everything where its supposed to be and at what consistency its supposed to be at for almost 24 hrs now.

With the bounty of gifts Isaiah got for Christmas taking over the living room I got the brilliant idea of converting our Den / Guest Bedroom into Isaiah's playroom so I spent the bulk of Sunday cleaning the room from head to toe and reorganizing the furniture. Somehow, even though all the same furniture is in the room and the ball pit has returned home to the Den it seems way bigger than before. It is also helpful to be able to contain the toys a little bit more, especially the rogue ball pit balls that would spread from living room into the entry and the dining room. Now we just have to watch out for them when we pass through the Den on the way to the kitchen for Isaiah's mid-night milk runs.

We've learned today that we need to keep pants or leggings of some sort on Isaiah at all times. He was getting caught up on some pants that were a bit big for him so Rachel took them off and not 15 mins in to being in a diaper and t-shirt he had figured out how to peel off his diaper and then proceed to evade mom and dad as we chased him around the playroom floor only to catch him just as he began to 'christen' his new foam playmat (better than the rug I say). Rachel and I just started hysterically laughing, which made covering him up that much more difficult. We may have some fun this summer with some extra tape on the diapers or something else when it gets really hot because I think this boy wants to be naked as much as possible and will do everything in his power to get, and stay, that way.

25 December 2009

19 December 2009

Christmas is Coming!

As you've noticed we've had a few picture updates on the blog recently and not much else. Its been a busy last couple weeks for us getting ready for the holidays, but really not much exciting going on in our lives. Isaiah's starting to get more and more gabby which is good. He can say mama, dada, and has lately started saying baby although its more like baaaaay-be. He's getting more and more vocal every day which is encouraging to us. Now that my back is doing a bit better I've been able to play on the floor with him more and all he wants to do is crawl back and forth over me. It's kind of funny actually because he'll get a point sometimes where his legs are off the ground but he hasn't got his arms out in front of him yet so he's kind of floating on me like a teeter totter. He's continuing his torture of the cat who has now pretty much grown intolerant of Isaiah and has started hissing at him so we have to watch out for that. I think the cat doesn't like that Isaiah is now faster than he is so he's pretty much got nowhere to hide anymore.

There are a ton of pictures from the last few months holed up in my camera and I'm aiming to get them uploaded by the end of New Years weekend when I have some more time. In the meantime enjoy out mobile uploads.

18 December 2009

16 December 2009

12 December 2009

Coffee and Pickles

Coffee and Pickles are not a good combination, just so you all know. I didn't feel like cooking up a full breakfast this morning while I was up with Isaiah, so I just grabbed a couple things out of the fridge and boy does my stomach regret it.

Anyways Isaiah has been doing great lately. He's pulling himself up on everything now as you could see in last weeks video and luckily he's left the tree alone, but not the cat. He's figured out how to turn on and off his keyboard and the tv too (much to our dismay) . Plus he's crawling around like crazy now. We're talking supersonic fast.

Yesterday was an interesting day for him. He first learned to mimic Rachel's 'Muah' when she gives him a kiss (or blows one at him) and now he's reciprocating it back. It's absolutely adorable. Completely opposite of that he also had his first big temper tantrum yesterday. He went ballistic, kicking, screaming, crying, and hitting when Rachel and I were trying to keep him from attacking the cat. If you didn't know Oliver, our cat, is around 14 years old, and starting to slow down. Before Isaiah could climb up on things Oliver was safe sitting up on the couch cushions. We'll its not the case anymore. Isaiah and I were playing on the floor and then I saw the look in his eye when he saw the cat. We see this determined look quite a bit lately, and when it happens he'll do whatever he can to get what he wants. Well, I put my leg up on the couch so that Isaiah could still stand up against the couch and my leg, but not reach the cat. He did not like this. At first he gave out a little whimper cry that he does to let us know he doesn't like something or something is in his way. He then tried to push my foot off the couch and when that didn't work he started hitting my foot and screaming. Rachel grabbed him and tried to calm and distract him, but he kept kicking and squirming his way out of her arms and crawling back to the couch and my leg, starting the whole process over again. We knew he was tired and that was part of it, but when Rachel took him to the bed he still was putting up a fight. A little good and and a ton of bad yesterday.

06 December 2009

Happy St Nicks Day

video
A little tradition on the Kolis side of the family is to celebrate St. Nicholas Day on December 6th. We put out our shoes and overnight St. Nicholas stops by and fills them with candy and presents. My family the presents are usually an ornament of some kind. The little video above is Isaiah m0re interested in the video camera than his St. Nick's Day presents under the tree!

22 November 2009

Whoops there it was

So sorry for the lack of posts. It's be a couple of busy weeks since we got back from Dallas. A bunch of sleepless nights and taking turns having Isaiah sleep on us (and Grandma Hanthorn) since while he was swollen that was the only way he would stay asleep. Work has been busy for me which is definitely good, but in combination with the lack of sleep, it was getting draining for awhile. Also my best friend in Atlanta, Peter J, moved back to his native Seattle. He was a former coworker of mine at my old job and we both got laid off on the same day, so needless to say what little free time I had the last couple weeks I was trying to spend with my buddy. If I could somehow convince Rachel to write here there would be more updates, but enough about that and back to the man of the hour, day, month, year, nay millennium.

Isaiah has been doing great, crawling around like crazy, babbling more and more and the other day he started raising his arms when they tell him to on Disney's Little Einsteins. You could just tell that this surgery flicked another switch on in his little brain. His swelling is all gone and the scar on his head is healing well. We're getting used to his new look, but its not all that drastically different. The biggest thing right now is waiting for the last dissolveable stitch to pop in his left eye so he doesn't look like a squinting pirate anymore. Otherwise his eyes just look a bit more deep set than before now that the forehead comes out over them a little bit.

Isaiah's also been playing peek-a-boo with us on the floor. He darts back and forth from behind the couch or wall and just looks at us and giggles. Just before I started writing this post he was sitting in the Living Room popping his head through the archway looking for me in the Den anbd as soon as I'd turn to look at him he'd hide behind the wall and start laughing. He's also started waving anytime anyone picks up keys or goes by the front door. He's really stating to pickup on tons of things very quickly and its a great feeling.

Last but not least, those of you who don't know me personally don't know how much I love Christmas. Usually I've got the tree and outside lights up November 1st (I wait until after Halloween at least) but since we got back from Dallas that weekend and taking care of Isaiah I didn't get the outside lights up until last weekend, finished decorating the tree in the living room this weekend, and sometime this week we'll get the little tree up in the Den. I just love the lights and all of the memories around the season from growing up like St. Nick's Day, decorating cookies with my Mom and Sister, Midnight Mass on Christmas Eve after dinner at Grandma Mix's, the small family Christmas morning with Kielbasa and Cherry Pierogi for breakfast, and going to the Kiley's Christmas Party with my Dad. I miss my family back in Wisconsin so much this time of year and I use the excuse of decorating so early to have more of those memories around for longer amounts of time, plus it doesn't hurt that Isaiah love the twinkling lights.

09 November 2009

Weeee're Baaaack 11/09/09

In all honesty we've been back since Friday night at about 11pm after driving straight through from Dallas. We were happy to be home and sick of hearing the Playhouse Disney CD that was seemingly the only thing that could keep Isaiah calm for about 8 hrs worth of the 12 hr drive. If I have to hear the Handy Manny theme or Monster Hoedown anytime soon again I may scream. It wasn't until we were around Tuscaloosa that I tried another CD that didn't send him into a crying fit and that was daddy's Arcade Fire CD which lulled him to sleep with the orchestra backgrounds and church organ.

The last few days have been relatively good. He's almost back to his normal activity level which is both good and bad. Its great that he's playing and crawling around but he's as fearless as ever and leading with his head which is still very swollen and full of fluid. I said it on facebook already, but his head both feels and sounds like a water balloon. It's squishy and if you move him too fast you can hear it slosh around. it gives me the willys just thinking about it. That fluid also makes it uncomfortable for him to lay down so we haven't been getting much sleep lately. Rachel has been very kind to me and took the brunt of the duties last night since I went back to work today, and today we found out he has an ear infection in his left ear which was super swollen. Apparently there was so much wax in the ear that Dr. Leonard couldn't see his ear drum. No wonder he was so crabby.

So for sleeping the only thing that somewhat worked last night was him sleeping on me or Rachel since he was more comfortable sitting up. Today Rachel tried him sleeping hi upright in the stroller which we may try tonight to see if he'll sleep longer than a half hr to an hr at a time. Wish us luck!

05 November 2009

Lil' Stevie Wonder 11/05/09

So things are progressing. His swelling is starting to go down, but his eyes are still swollen shut. Dr. Fearon came in this morning and thinks we could get out of the hospital tonight. He's coming back after his afternoon surgery to check in and we'll go from there. He even said if we get out of the hospital tonight we could get back on the road tomorrow morning.

Isaiah's much more active after a pretty uneventful night. We brought along a little tikes keyboard my cousin angie bought him last time we were here and he's been blindly playing it in the crib. Even though we couldn't see the little sparkle in his eyes, you could tell it perked him up and made him happy. He's been pretty chill for the most part. He hasn't thrown a huge fuss yet, but he has had his crabby moments, mostly when you try to move him.

His breathing has been great the whole time and the respiratory therapists haven't heard a wheeze since the night of the surgery. He hasn't desat'ed yet to our knowledge, with the only alarm I can remember being because he decided to pull off 2 leads and his pulse ox sensor off. I am constantly amazed at his progress and toleration for everything and we're just blessed to have such a resilient little guy.

04 November 2009

Visitors & thanks for the prayers 11/04/09

Tonight we had a visitor local to the Dallas area that has been following along with Isaiah's journey via the blog. We just wanted to mention a quick word of thanks to June and Mike Graham for the wonderful basket of Great Harvest bread and goodies and more importantly for their thoughts and prayers around Isaiah's surgery and healing. June stopped by the hospital tonight and we were very happy to have met her. She is, from what I understand, the mother in law of one of Rachel's father's employees at the Opera, Eric Mitchko.

We're just constantly amazed at the number of people around the world thinking of us and praying for us. Just off the top of my head we know of people across the US, Canada, England, and even New Zealand. We are really in awe of the awesome power of prayer and how lucky we truly have been throughout this whole process.

Get your booty on the floor tonight 11/04/09

So we finally made it to the regular peds floor around 3pm today. He's still sleeping a lot and he had a fever that peaked at 104 but is back under control to a more acceptable 100.3. We knew he would have a low grade fever for a day or so as the anesthesia worked its way out of his lungs. He's had a couple of bottles of juice now and some applesauce as well as some cereal puffs, but his appetite is nowhere near normal yet. If all goes well we should be discharged tomorrow and back on the road to Atlanta saturday morning. We're thinking about driving straight through if he can handle it to get him back in his own bed sooner than later. I'm going to be staying in the hospital tonight with him to give Rachel another night of rest after I came to the realization that last night was her first night away from Isaiah since he came home from the NICU (and therefore her first full night of uninterrupted sleep in almost a year and a half if you count the latter half of the pregnancy) She definitely deserves it, and since Isaiah's been so good I can definitely handle it.

PICtUre! update

Still in the PICU but moving soon

Today is only yesterday's tomorrow 11/04/09

Dr Sacco just made his rounds and thought Isaiah looks to be ahead of schedule recovery wise. So far he's been mildly crabby, but not horrible yet. His A-Line IV is out, no more Foley bag, no more Blood Pressure checks every hr and his labs show that he probably won't need any extra blood. We've got him to drink about 8 oz of apple juice and being the independent little guy he is he HAS to hold his own bottle which is a little interesting since he still has a board on his right arm so he doesn't pull his fluid IV out, but he manages. We just have to correct it a bit so he gets the nipple on the sippy cup in the right place since he can't see anything since his eyes are swollen shut.
The swelling isn't nearly as bad as I had imagined, but I tend to be a little overly imaginative sometimes. It is definitely significant though and today will be its height. He's been sleeping most of the time from what we can gather (since its hard to tell since he can't open his eyes) so we haven't experienced much of his frustration yet, but I'm sure it will come.

Hopefully we will be moving from the PICU to the normal floor within an hr or two!

03 November 2009

He's out of surgery 11/03/09

The doctors just came out to the waiting room. All went well. Dr Fearon says 'he looks really different' which is a bit scary, but we'll find out in about 20 mins.

Everything went good, very little neurosurgery needed, but they said we timed things right for the surgery as lots of little defects were forming in the bone.

More coming to this post as we know

Surgery Day 11/03/09

So Isaiah was pretty funny this morning going into surgery. He knew something was up when he saw the caged crib this morning and was not too happy to see it. After he got his goofy juice (Versed) he loosed up a bit. He didn't sing this time, but he did have his funny moments. He absolutely refused to lay down, but after the meds kicked in he had problems keeping himself up. He would keep trying to pull himself up on the side of the crib only to slowly fall over. There were times when it looked like he was posing for a boudoir shot because he was half laying on his side, but trying to push himself up. Hopefully some of the pictures turned out.

We're just hanging out in the waiting room right now and Isaiah should be done with surgery around lunchtime sometime. I forgot to mention yesterday they are planning to move his forehead forward about 2 cm and do a bit of a lift to the corners of his eyes. There are various little other things being done, like a bit of added bone at the bridge of his nose and a little bit of work to the top of his head as well. He's also getting a little flap of skin that healed oddly from his circumcision released. All in all a pretty full day.

So far all the updates from the OR have been good and he's reacting to the anesthesia gas much better this time around.

02 November 2009

Pre Op day 11/02/09

At the pulmonologists office. Doctor's visit no 5 of 6 today


So today was pre operation appointment day. We had 6 different appointments, one of which was at Children's hospital closer to Downtown which is about 20-30 mins from medical city where the rest of his appointments were today.
That first appointment at Children's was with Dr. Sacco, the neurosurgeon. He was very nice and had some great Eames furniture in his office (famous architects and furniture designers) He explained the whole procedure, we got to look at his MRI's which we hadn't seen the latest one of, and helped put Rachel and me at ease now that we met the other major surgeon for tomorrow.
The rest of our appointments were back at medical city and we had to do the pre surgery checkin, imaging, labs, and anthropolgy all in one fell swoop of appointments. Isaiah did not enjoy the anthropologist measuring his face. Rachel was holding him in the chair, I would have to try and hold his head still while the guy tried to measure all these different points on his face. I'm not exactly sure what they were all for. They may be just for record, or they may need the measurements for the surgery to help map out what they are going to do, and know what size bone they need here or there and how they might need to adjust things.
We had pulmonology next which took nearly two hours. Bottom line is, his junkiness is mostly upper airway stuff and he should be good for surgery tomorrow. Last but not least was Dr. Fearon who was extraordinarily happy with Isaiah's hands and he told us we did a wonderful job with the bandages.
Rachel and I are absolutely beat right now and she's actually napping, trying to build up before we head to the hospital for surgery at 6am.

Thank you everyone for your continued thoughts and prayers

the trip out to dallas 11/02/09

So we've made it to Dallas safe and sound. The trip out here this time was a bit interesting. We we're able to stop off in Birmingham on the way out and saw Jack and Sidney and their families (their blogs are off in the sidebar to the right) . Its always great seeing other families and catching up on how everyone is growing. On our way we realized we were running low on Xopenex, Isaiah's main breathing treatment right now, and we had to find a 24 hr pharmacy along the route which was a bit interesting. We finally found a CVS in Brandon, MS but since we had never been to a CVS we had to get into their computer, and then something must've got entered wrong so the meds were initially denied, and then we had to go through the whole thing over again, but we finally got the meds and we're glad we did since they've helped Isaiah a ton.
We made it maybe a half hour past Brandon and stopped off in Clinton, MS and due to some miscommunication ended up staying in a super sketchy hotel. There was nastiness growing inside the AC unit so we didn't turn it on, and the whole place was just grimy and just didn't feel safe. I think the icing on the cake was when we were flipping through the cable channels was accidentally running across the unscrambled porn. Not a good experience.
We had hoped to meet up with another family, the Hurds, in Shreveport, but because we didn't get as far as usual on the first day, and the lack of sleep fearing for our general health and safety at the hotel in Clinton, we just ended up driving through to Dallas. We monopolized the Texas welcome center's family restroom for 20 minutes to give Isaiah a breathing treatment, and saw what I swear was monkey roadkill (like a ring tailed lemur) on the side of the road, but nothing else significant enough to write about.

01 November 2009

in the car day 1

In the car yesterday

30 October 2009

Big D 10/30/09

We got the word earlier today from Dr Fearon's office that we are pretty much a go for surgery so we are going to make the trip out to Dallas. Isaiah is not a 100% yet, but he's trending upwards and hopefully should be fine by monday when we get the official go ahead after all the preop stuff. If I had to guess I'd say we're 97% certain the surgery will go as planned.

Rachel and I are already pretty worn down even before we started packing. Rachel was sick last week into the early week, and I'm getting a stress cold, and with Isaiah being sick we've been doing nebulizer treatments 7 times a day (xopenex every 4 hrs, and a double dose of pulmicort in the evening between xopenex doses) which doesn't allow much time for sleep. We're also sticklers for trying to get as much of the billing stuff figured out ahead of time with all of the doctors so we don't have a surprise in 3 months when the EOB comes from insurance saying they're not covering something which has Rachel on the phone all the time instead of catching up on her z's. We've got most of the doctors lined up with letters of agreement with insurance about what they will get paid. The hospital is in process again, but at least this time we won't be surprised with the infamous "how will you be paying the $10,000 out of network deductible today?" question we got a checkin for his last finger release. Out of the 7 or 8 doctors that'll be used the only ones not locked in yet are anesthesia and the PICU doctors which are rare to get figured out ahead of time anyways. We're feeling pretty good, but we know this one will be the biggest expense to date for us surgery wise.

Luckily we get an extra hour of sleep on Sunday morning with the time shift, and hoepfully we get to relax a bit on the drives with visits with other Apert families in Birmingham and Shreveport.

24 October 2009

Isaiah Sandwich 10/24/09


So this is what Rachel and Isaiah were up to last weekend. They went over to Beaufort, SC to celebrate Isaiah's Great Grandma June's 80th B-day (she's the one on the left if you couldn't guess!)

Thanks for the picture Ramona!

23 October 2009

Rachel's New Do 10/23/09


So Rachel and Isaiah ran into someone in the parking lot outside of the Carter's store by Perimeter Mall a couple months back who was inspired by Isaiah and his journey and happens to be a hair stylist, so she offered to give Rachel a free haircut, foils and all. Well yesterday Rachel finally took her up on the offer and has a nice new short hairdo as you can see from the picture above. It's the shortest I've seen Rachel's hair since we started dating over 6 years ago, though I think it may have been this short when we first met freshman year of college. Its super cute and she absolutely loves it so we thought we'd plug the stylist who gave her the cut as a form of thanks.

Her name is Deborah Bibb and she works out of the BlowOut Salon in the Vinings Jubilee Shopping Center on Paces Ferry Rd for those of you in the ATL area. She did such an awesome job we thought we'd try to send some some business her way! Thank you Deborah!

The Countdown Begins 10/23/09

Isaiah's next surgery is less than 2 weeks away now and this is our last weekend before making the trip to Dallas for his Cranial Vault. We unfortunately aren't going to go trick or treating this year since we'll be in the car on Saturday so we can make it to Dallas in time for his pre op appointments on Monday November 2nd. His surgery will be on Tuesday the 3rd. We had a great idea for his costume, one that would totally date him, and probably most people would be like huh? We thought it would have been cool to dress him up like Chef Duff Goldman from Ace of Cakes on Food Network, aka the guy that makes the crazy cool cakes and owner of Charm City Cakes in Baltimore, MD. I've kind of thought they've got some similar facial features and totally the same demeanor. I was planning to paint on a little goatee and darken his eyebrows and put him in a little white chef coat or hockey jersey and a backwards baseball cap which Duff wears on the show a bunch. I've got an artist's depiction below of what could've been...









On second thought looking at that, maybe we're better off. He does kind look a bit creepy with dark eyebrows.

17 October 2009

Where'd we go? 10/17/09

Sorry about the long lapse between posts. My new job has been good and keeping me very busy. I also threw out my back a couple weeks back and haven't been up and about much, but its doing much better now.

Anyways, on to the important things that have happened in the last 3+ weeks. Isaiah's been making some pretty big strides lately. The last Monday in September he finally started started acting like he wanted to crawl. Mainly it was the bringing the knees up under him, and then collapsing as he tried to move forward. Not even a full day later Rachel calls me at work all stressed out because Isaiah is driving her crazy getting into everything and crawling all over the house. It took him little less than a day to master crawling, which while great, scared the crap out of us because we had been lazy and had yet to babyproof everything and get gates. As soon as I was home from work we ran out to Babies'R'Us and bought a couple gates and cabinet locks and all of the other good stuff you need. Lately he's even starting to pull up on things already and sits on his knees a bunch now.

The other big news is that Isaiah has cut some teeth now. He has 1 tooth cut on both the top and bottom (both the front center right) and at least 2 more on their way to cutting through in the next couple days (both the front center lefts) Since they started coming in he hasn't been liking the pureed foods and being fed by me or Rachel and only wants to feed himself. He's had lots of cheese, cereal, bits of bananas, avocado and the like. While it now takes easily 2-3 times as long to feed him, we're extraordinarily happy he's feeding himself and enjoying it so much. He's learned the sign language gesture for 'more' and uses it all the time. We've got to start working on some more signs so we can differentiate what he wants (food, milk, juice, etc) but he's off to a good start, and it'll come in handy for post surgery next month when we won't be able to go off his visual cues as much while he's swollen during his recovery.

21 September 2009

Who'll Stop the Rain? 09/21

Thank goodness we decorated Isaiah's room with a Noah's Ark theme because with all the rain we're having here in Atlanta, the house just might float away... Well its not that bad yet, but we have had about a half an inch of water in much of the basement. Either the house has settled over the years, or the floor is just that out of whack, because only half of the basement is wet right now. Of course its the half that includes our little 'dungeon room' that is carpeted which means I will be having fun in the next week removing who knows how old wet carpet in order to prevent mold from over taking the house. The HEPA filter in Isaiah's room will be running extra this week that's for sure.

Most schools are closed around the metro tomorrow, which makes this rain almost like a snow day back up north, but much wetter and warmer. Work shut down early today because of the rain, and I don't know if we'll be open tomorrow since the owner lives about a 45 minute drive away when the roads aren't flooded over. One sign you know it's really bad is when the Chinese restaurant is closed. They're always open, but today when we decided we weren't cooking and called for take out, they were closed. No General Tso's Chicken for me :(

It's supposed to rain here every day until Monday of next week and it has been raining here for nearly a week straight to boot! Isaiah liked it at first, but we're getting stir crazy asnd so is he from the weather. He's getting really close to crawling and he's gabbing like crazy. Sometimes I swear he's talking back to the thunder!

19 September 2009

Swine Flu Schmime Flu 09/19

Isaiah has seemingly bounced back from the flu fairly quickly which leads us to wonder if he really had it at all. We know he was sick, but everything we've read said he'd have a fever for 3-5 days, and he's gone the last two days sans fever. He's almost back up to his normal appetite, but he's still sleeping a ton. Unfortunately it seems like Rachel is getting whatever he had now from taking care of him this week and she's off trying to rest as I take care of the little guy today. Hopefully we can all nip this in the bud sooner than later because we miss hanging out with our neighbors and being able to go out and about. It's been raining here pretty much all week, and making us all a bit stir crazy.

New Photos!

I just realized this morning I haven't posted any new photo albums in awhile. I knew I had to get the Disney trip pictures up, but I had to get some of his surgery pics up as well form our last trip to Dallas. Just click the pictures below to go to the new galleries!

Dallas trip pictures, including a visit with a new friend, Aiden, who also has Apert Syndrome and was born 2 weeks after me!









These are the infill pictures from after my surgery up to the present and include the trip to Chattanooga and Ruby Falls, Disney World over Labor Day, and my first haircut!

17 September 2009

Oink Oink 09/17/09

We thought we got through Disney this time unscathed. He wasn't throwing up the entire time home, and even though it was even hotter than last time, he didn't act like he was getting heat exhaustion because we were careful to keep going into the A/C. Well the last couple days he's been fairly crabby and yesterday he woke up with a fever of 102.1. We gave him some Tylenol and it helped for a while, by noon he was back up to nearly 103 and Rachel took him to the doctor. Turns out he has the Swine Flue. Wooohoo! I guess its better to get it now than a couple weeks before his next surgery in November, but still not fun in the least. It also means we're all on a virtual quarantine for a while. I'm essentially only going to work and the store when needed, and Rachel is planning to stay in with Isaiah. He was pretty miserable last night and got up numerous times. He's going to have a fever for the next 3-5 days and we're trying to manage it with some Infant Motrin. Hopefully he gets better soon and that Rachel and I can stay careful enough and wash out hands and face enough to keep from getting it.

13 September 2009

From Crabby to Passed out in 5.4 seconds

Isaiah zonked out on the floor

Land of Confusion 09/13/09

I hate having to write a post like this, but there's been a bit of a question from a number of people of where we got the money for the Disney trip we took last weekend. I can can assure everyone that all the money you donate to Isaiah's fund through Apert International always goes 100% to his medical needs (surgery deposits, travel costs to Dallas, prescriptions, etc.) and his daily necessities (diapers, food, clothing). The money we spent as a family came out of our reserves we had been building for the past year or so.

Ever since we knew that Isaiah was going to have some unknown issues before he was born we thought there would be a good chance that Rachel would need to stay home from work to take care of him we started to cut back on extraneous expenses and save money. When the economy was starting to turn south and my work started laying off people last October we started pinching even more with the supreme possibility of me not having a job in the near future so that we would have some money to fall back on. The layoff did happen, but much later than I thought, and while Rachel experienced some rather severe postpartum depression that essentially forced her to stay home with Isaiah, it did have the effect of allowing her to keep receiving disability payments for longer than we had anticipated as well. All in all since I was only fully unemployed for little less than a month we had some extra money in our reserves which is where the money for the Disney trip came from. We're still saving money with the goal of replacing the Toyota in the next year. We just needed to do something fun for the whole family to celebrate coming through all we have in this last year. Rachel and I have given up most of our entertainment expenses and cut back on many little things here and there so we feel this was rather justified for us to spend out of our personal coffers.

We don't want people to feel like we're misappropriating the help you are giving us and please feel free to call us on it if you ever have a question about it. We are a non-profit of sorts, just not in the whole business sense I guess, so our financial records aren't public access, but we are accountable to all of you that help us. We truly appreciate everyone's help and try to use your money smartly and always 100% on Isaiah's daily needs and medical expenses unless told otherwise.

12 September 2009

Shave and a Haircut - 2 bits 09/12/09

So today will be Isaiah's first official haircut, if you don't count the little bit we needed to snip to get his IV off at his last surgery. (we kept that little bit anyways) This is our first official trip to a haircut place which I guess specializes in kids and is called something cute like 'pigtails and crew cuts.' Hopefully they're creative enough to do something with his long bangs and Ben Franklin/Grandpa Munster like wisps of hair at his ears. You probably don't seen a ton of shots of the back of his head, but as it gets longer, its getting pretty curly. We may let that grow out a bit, but we'll see. Anyways I plan to take the camcorder and if they let me, take a bit of video. If I can get it to work right I'll try to post some here.

08 September 2009

The Rest of Disney in Review 09/08/09

So since we have annual passes it really opened us up to taking our time and helped us not feel like we had to cram everything into 2 days worth of tickets. We got a little bit of extra time Friday night when we came in to Orlando, and Monday, after we checked out of the hotel, we went to Disney's Hollywood Studios for a few hours.

We started off with the Indiana Jones stunt show and we realized that Isaiah has seen way too many action movies for his young age because the majority of the bullet sounds and explosions didn't phase him in the least. I think I figured out he can handle the loud bangs when he sees what goes with them. The delay from the fireworks confuses and scares him since its not as readily apparent where the sound is coming from to him.

Hollywood studios doesn't have a ton of rides, and most of them aren't kid friendly so we mostly walked around, went through the Star Tours gift shop and a Narnia exhibit, before we went to the big hit of the trip, Playhouse Disney Live! Playhouse Disney is the Disney Channel's morning lineup of shows which, depending on when Isaiah gets up, he usually sees two or three of the shows each morning as Rachel is getting ready, or they're on in the background as he's playing. He knows the music from Mickey Mouse Clubhouse and Handy Manny and usually smiles and turns to the music whenever he hears it so we thought this show would be good for him. The show ended up being mostly puppets of all of the animated characters and he absolutely had a blast. When the Mickey Mouse Clubhouse theme started playing and the puppets popped up his smile went from ear to ear and his cheeks got so big you could barely see his eyes. He kept bouncing to the music and thoroughly enjoyed the whole show. It completely made the whole trip worthwhile. We hit the road straight from the park and got home about 10pm last night. We're still recovering a bit from our vacation, but it was well worth it.
We realized this was really our first family vacation on our own just me Rachel and Isaiah. We've gone on trips before but those were for surgeries and it just felt good to get away and spend some quality time with the family and 1,000's of strangers at Disney

Sunday in Review 09/08/09

Sunday Isaiah decided to wake us all up at a bit past 7am. We tried to get him back to bed so we could rest a bit, but to no avail so we decided to get a jump on the park. We decided we were just going to take it slow today after yesterday's meltdown at the end of the day, and we just didn't want to kill ourselves. It's a vacation after all and we know we're coming back in March with my Mom. We got into the Magic Kingdom just before 11am and were promptly greeted by the street party parade which Isaiah seemed to enjoy. We followed it up Main Street and watched it for a little while before heading to Peter Pan to get Fast Passes. We were about the wait in line there after what happened last time. Isaiah, of course, decides this is a good time to sleep, so we window shopped for a bit and headed over to the Winnie the Pooh ride. He wasn't pukey this time like he was back in March and really enjoyed the ride, especially the bouncy part with Tigger.
At the end of the ride as we were leaving the guy who was riding in the car behind us taps Rachel on the shoulder and gave her $20 to spend on something for Isaiah. It was very nice of him, but we're still kind of weirded out by that kind of stuff from strangers. I guess we just prefer to think of Isaiah as 'normal' and things like that make us feel a bit odd like people pity us. It's been over a year now and we still don't feel totally comfortable being on the receiving end of that kind of giving. I mean we've got plenty of our family members and relatives helping us out, which we are extremely grateful for, but when a stranger just walks up to us and gives us money it's just an odd feeling. I don't know how to describe it really other than we don't feel like we're worthy or that it's that serious to warrant the need. They don't know the whole story and maybe assume things are worse than they are. With all the help we get from our families we feel like we're doing really well, and that there are many other things and people with pressing needs greater than our own. At the same time we kind of realize that if we keep refusing any help we know it won't be there when we really need it.
Anyways after the ride we went to Toontown to see Mickey's house and then head back to ride Peter Pan. Isaiah decided he wanted to sit like a big boy on the seat during the ride, even though it meant he probably couldn't see half of the ride. Since it was now the peak of the day we decided to go to the new and improved Hall of Presidents (updated with Obama) to enjoy some A/C and get out of the sun. Isaiah decided it was a good time to fall asleep again. We took him over to the baby changing station and fed him after that, and headed over to Adventureland to feed Mom and Dad and ride Pirates of the Caribbean and the Jungle Cruise. Since both Rachel and I love the Haunted Mansion we decided to try to ride it with him. After all if Isaiah started wailing it would only add to the ambiance of the ride we figured. He wanted to ride sitting up like a big boy again and then halfway through the ride he fell asleep. Of all the rides to fall asleep on we thought the Haunted Mansion was the funniest. We started to sense a theme of darkness + air conditioning = sleepy Isaiah. We did a little more shopping and bought some coffee mugs for us and some little toys for Isaiah and wandered over to Tomorrowland and rode the Carousel of Progress (There's a great big beautiful tomorrow, standing at the end of every day... the song is still stuck in my head two days later)
At this point we've been in the park for over 7 hrs and nary a break down from Isaiah save for a small one when the dog howled in the Carousel of Progress. The wind was picking up and the skies were getting darker so we made our way back to the hotel, but not before making a pit stop for some ice cream on the way out. We were so proud of how well Isaiah did on Sunday. With all his little naps and us taking it slow it was a record for us for continuous time in a park.

The Rest of Saturday in Review 9/8/09

So Saturday after a dip in the hotel pool we headed over to the Magic Kingdom mostly to take Isaiah to the Spectromagic parade. We had a little time before the parade started at 9pm so we got the token ride of It's a Small World out of the way. You could tell certain parts of the ride were already being decorated for Christmas. There were some reindeer peeking over the hills at the beginning of the ride and the former hot air balloons at the ceiling looked amazingly like christmas ornaments. Another area had snowmen in the sky. Most of the changes were the aerial things, and not that noticeable unless you're an anal retentive architect type person like me who is trying to drown out the song in your head. I apparently fell asleep on the ride at the end since we were stuck for a couple minutes in the last room due to slow loading/unloading.

We started making our way back up to the front of the park to find a spot for the parade. Its a pretty cool parade with all sorts of lights and tons of disney characters and we thought Isaiah would like it. Unfortunately since he refused to take a nap all day he was in a funky mood and only intermittently enjoyed the parade before falling asleep about 10 minutes into it. The parade actually stopped for a bit as I think one of the floats ran out of gas or something since we saw a gussied up go cart with a maintenance man on it running some propane on beyond our view. We had been staring at one of the bears from the country bear jamboree and pluto for about 5 mins at that point. Since Isaiah was sleeping and the parade wasn't moving, we decided to call it a night and head back to the hotel. Of course when we got back, Isaiah was refreshed and wide awake after his little nap and it took a bit to get him in bed for the night.

07 September 2009

Playouse Disney Live Pt 2

This is about midway through the show. He had an absolute blast. This was the last attraction we went to on Monday before heading back home. He was giggling and bopping through pretty much the entire show!

Boba Fette

Yes that is Rachel under there, but apparently she's a peaceful bounty hunter lurking in the shop after the Star Tours ride at Hollywood Studios

Disney Playhouse Live!

Here's Mom and Isaiah patiently waiting to see Mickey Mouse, Handy Manny, Little Einsteins, and Pooh and Friends live! Just the music and lights while waiting for the show to begin made him smile really big!

06 September 2009

Mickey Mouse's House

Here's Isaiah having a blast with Mom in Mickey Mouse's Living Room!

05 September 2009

Multimedia message

Test picture

So we just figured out how to post camera phone pics up to the blog while we're out and about so we'll try to pop a few up of the rest of our adventures. The posts will be pretty simple like above until we get access to internet at the hotel or home, but it should mean more pictures!

dog days of disney 9/5/09

So we made it. Our 'resort' hotel room is alright but nowhere near the look of the pictures, but hey we spent next to nothing on it so we can't really complain. We're right by Downtown disney and 5 mins from EPCOT. Since we have annual passes we checked in last night and went to the EPCOT for a couple of hours. We went on The Seas with Nemo, ate dinner in Morocco, and had a pretzel in Germany before attempting to watch the illuminations fireworks at 9. You could tell he liked looking at the fireworks but absolutely hated hearing the bangs. He had a bit of a meltdown just before the finale so we started for the exit just a little bit before it was all over, but we didn't miss much.

We're noticing he's not liking the rides as much this time around. He's cried on pretty much everything he's ridden on except for Spaceship earth which he slept through for the most part. We did lift him up for the picture on the ride which they use for a little video which you can watch below. I held him up infront of my face and they used a cut out of his head (and a little of my hat) along with Rachel's head in bits of the video.


video

We finished off EPCOT this morning and are back at the hotel to enjoy the pool for a little bit during the high heat of the afternoon since its over 90 here with 60-70% humidity. We'll head to the Magic Kingdom tonight and see if be'll tolerate the parade and all.

Even though its hot and Isaiah has been mildly crabby on the rides, its been fun and relaxing so far which was the main goal of the trip in the first place.

03 September 2009

Hot Dog Hot Dog Hot Diggity Dog 9/3/09

Okay, so Rachel and I have officially gone off the deep end. This afternoon decided we were going to Disney World this weekend since Rachel got a bee in her bonnet after seeing ludicrously low hotel prices online (like $50/night for a resort!) That's not the only crazy thing we did, we bought annual passes to Disney. AAA had them on sale and since we know we're going back in March as a planned family vacation, it was just cheaper than getting 2 tickets for this weekend, and 5 for march, plus we get free parking now and can come and go as we like and all sorts of other little discounts on things we shouldn't be spending our money on.

Basically this is our big splurge for the year. We're kind of looking at this as a much needed vacation after a year so far filled with 2 major surgeries, numerous trips to the ER, partial and then full unemployment among many other stresses. Plus we could really use some fun before his next big surgery come November.

27 August 2009

Nice Dreams 08/27/09

So Isaiah had his first ice cream cone tonight. We've been walking with our neighbors a bit more regularly this week, and after our short little jaunt through the neighborhood tonight we decided to head over to our neighborhood Bruster's Ice Cream. They apparently give away free baby cones to kids 40" tall and under, so we got one for Izzy. Just plain old Vanilla, and surprisingly, he wasn't that into it. Seriously it was maybe the size of a soup spoon full of ice cream crammed atop an itty bitty cone, but it was free and he did eat about half of it. The other half was split roughly equally between Isaiah's face and Rachel's stomach. We totally weren't thinking and didn't take a picture, but it was pretty cute.

I was worried the sugar would keep him up since we got it just before his normal attempted bedtime of 8pm. We rarely get him to sleep that early, and are usually lucky to have him asleep by 9 most night, but he seemed to go with only a little fight tonight and has been sound asleep since just after 9. There's really nothing quite like the sound of a sleeping baby...

24 August 2009

Finger / Kickin' Good 08/24/09


So I'm a day late with the finger and toe pictures, but click on the picture and you'll go to the Picasa site to see them in all their current glory. Still a little scabby and surgical, but they'll clean up nicely in a few weeks!

22 August 2009

Freeze or Burn, All Else is Only Icing 08/22/09

I swore I dashed off a quick post the other day, but I must not have.

Wednesday night we took off his arm casts and got to see his 10 fingers. They're still pretty swollen and scabby, but all the grafts took and things look good. His right hand is shaped almost as if he's gripping an imaginary golf ball in his hand whereas his left hand is a little flatter seeming. It's too early to tell how well they will work, but once we're done with dressing changes we'll be able to start trying to get him to grip more things. He's already holding his own bottle again and manipulating things up to his mouth with both hands which is great. He's still not wanting to stand up much and doing the 'air sit' when we pick him up and he's still holding out his legs as if he were sitting on a magic carpet. He's pretty strong because he can do that for a good while.

We drove up to Chattanooga yesterday. We followed my Mom up there on Friday on her way back home to WI and we stayed the night there. We went to Ruby Falls yesterday which I swear has just about as many billboards along I-24 and I-75 as Wall Drug does in all of South Dakota. It's this cool cave tour with a 140 foot tall underground waterfall. Unfortunately the waterfall is more than half a mile into the cave, and no strollers were allowed. We figured now's the time, because he's only going to get heavier, so we carried him for over an hour and 1.25 miles (we had to carry him back out of the cave after all.) There were plenty of narrow passages, drippy wet floors, and spots where even Rachel had to duck so it was interesting. We made it through, and Isaiah was great until we got into the gift shop at the end, but Rachel and I were the only ones that could hold him. We tried to let my Mom carry him for a bit, but he started getting fussy and we didn't want to risk a meltdown so we did the whole thing. I thought it was worth it to see his face at the waterfall, Rachel's still deciding if it was worth it or not, but either way we know we're not carrying him in any cave for that long of a time again. We hit the Chattanooga Choo Choo shops and museum today and said goodbye to my Mom there and drove back home. Fun but tiring, and I head back to work on Monday.

Oh and the title, its referring to the fact we now have a nice new fridge in the kitchen. I had to modify our cabinets a bit to get it to fit and vent properly, but its big, bright, we've got plenty of room for food, and don't have to worry about waking up to frozen milk and creamer and half thawed popsicles.

18 August 2009

Halfway there 08/18/09

So the leg casts are off and his ten little toes look great. There was very little gunk this time compared to last time and the skin grafts are healing well. I'm just excited to do the 'this little piggy' stuff.
We've started in on the dressing changes and have moved up taking off the arm casts to tomorrow since my sister leaves for Minnesota tomorrow night and we wanted her to be able to see all ten of his fingers. Once those are off I'll have pictures of his hands and feet posted by the end of this weekend for all to see. They're still a little raw looking, but we just need to share!

16 August 2009

The Pianist - 08/16/09

FYI I'm going to put the post date into the title until I can find the time to figure out the programming for the date so you don't think I'm writing about today 2 weeks ago (though it would be nice to have that kind of foresight)

So we're realizing rather quickly that Isaiah got the music genes from both of us. He seems to appreciate his Dad's (my) quirky taste in music and was bopping around to some Finnish Hip Hop / Electronica while I was cleaning the house in preparations for my Mom and Sister coming tomorrow. He's also quite the piano player. Rachel's got a nice keyboard that does all the drums, 150+ different instruments and plays full songs and the like. He sits there banging away, turning on and off the drums, changing instruments, making the keyboard play Celine Dion's "My heart will go on." It's all pretty amusing. I did get some of it on the camcorder and will see if I can figure out a way to get it online. His casts barely even slow him down.

Our fridge is dying now. Yet another thing to add to the litany of 'little' problems that seem to keep coming lately. It's freezing some things in the main compartment, and not cooling some things enough and the compressor makes some awful noises about 1 in every 10 times it kicks on. So we hastily bought a new refrigerator today and it's being delivered on Thursday. Nothing fancy, just a simple white refrigerator, but we went with a bottom mount freezer. Personally I like them better from remembering my Grandparent's fridge in Itasca, IL back in the 80's and thinking it was the coolest thing ever that I could get my own popsicles, which I hope to let Isaiah do sometime in the future too!

11 August 2009

quick update

I've still got to pour over the code for the date problem with the new look, but I've got less time to do it now since I've found a new job! Only 3.5 weeks fully unemployed, with one of those being Isaiah's surgery week. I'm actually working today already at a nice small architecture firm 5 miles from home.

Isaiah's been super crabby lately and we're trying to figure out why. He's gotten used to the casts again, and his separation anxiety, while still there sometimes, has diminished some. I'm wondering if his teeth are bothering him since he has yet to cut one. Its hard to tell if he's running a bit high temp from having the casts on right now, or from teething. Soon enough though we'll get it figured out since the legs come off monday next week and the arms are off on thursday. I can't wait to see his little fingers and toes.

Got to get back to work

10 August 2009

New Look (Again)

So with my spare time right now, I've been updating the look of the blog to a more permanent style than the interim one we had during this last surgery. This one should stick and be pretty simple to work with.

All the sidebar elements are now on the right with a handy link to our online photo album right underneath the slideshow. Most of the other links made it over there as well and the labels and archives are there too. A new little handy dandy feature is when you click on a posts title it opens the post and shows all the comments below and gives you an easy url to copy if you'd like to email a specific post to anyone.

I know the post dates on the main page aren't working properly right now and I'm working on fixing that, but if you've got any problems finding things, or find links not working, please let me know in the comments.

09 August 2009

Settling In

So we ended up getting back late on Sunday night. I think Rachel and I have spent the rest of this week trying to catch up on sleep. He's not sleeping through the night right now, partially because of the casts, partially because he's stuffy. He's usually up 2-3 times a night right now and has been getting up at 6:30am every morning. We've been switching off who takes the early shift and then letting them nap later in the day.
We accidentally left Paulie, his puppy blankie, in the hotel in Shreveport and luckily the Hurds were able to ship him back to us. We now know we need to find a better exact match because Isaiah was too smart and realized our makeshift replacement was no match for the 4 nights he was without. We're off the pain killers right now and he's back to swinging his appendages around like weapons, but no bruises, black eyes or bloody noses as of yet. He actually has been doing really well compared to last time other than sleeping. He's tried to pick himself up to a standing position while in the casts, but can't for lack of grip, but he has finally been able to transition from laying on his back to sitting up on his own. He's also wearing holes in the heels of his casts right now from banging his feet all over the place. Part of me still can't imagine banging may hands and feet around like he does after having so much surgery done only little more than a week ago.

01 August 2009

on the road again

I swear the rain keeps dogging us this whole trip? Is it monsoon season or something? Anyways, we did start the drive home tonight, but we only made it about a quarter of the way to Shreveport. We were planning to stop here to visit the Hurds, whose son Aiden was born 2 weeks after Isaiah, and also has Apert Syndrome. We stopped off at a hotel to meet with them, and because of all the rain decided just to stay. Shawn, Aiden's dad, was nice enough to get us a free room and breakfast, so it was hard to pass up getting a bit more rest, especially since I really don't have work to get back to right now to rush home. The Hurd's are great and Aiden is so cute. he just had his first stage of hands done by Dr. Fearon a little while ago and was crawling all over the hotel lobby and standing up with the help of the nearby furniture. Isaiah seemed to like him too and it seems like he has a new friend! We've got some great pictures that we'll post when we get home.

Isaiah has been handling the trip decently. The first couple hours he was fine and just slept, but he was throwing a fit in the rain storm and we thought it would be good to take it easy the first day. It's only 7pm, but he's zonked out in the pack and play, but he did play for a good three hours while we visited in the lobby which wore him out pretty good. After all he had surgery only two days ago. Compared to the last time though, he's doing great. Already eating solids, smiling, and playing way more than the first go round.

We're going to shoot for Tuscaloosa or Birmingham tomorrow and be home monday during the day.

31 July 2009

Dallas Trip Day 5 - hospital day two

we're still in the hospital right now but we expect to be discharged around supper time. Isaiah threw up this morning at around 4am so we just wanted to make sure he was taking in his fluids fine and holding them down before we hit the road. Since we're getting discharged so late in the day we're just going to stay with Angie for another night and get on the road in the morning. We're going to take the drive slow and play it by ear with how we do with him. We should hopefully be home late on Sunday night.

30 July 2009

quick update post surgery

Thought I'd sneak this in before bed since I won't want to do it early tommorrow before I head back to the hospital. Isaiah is doing pretty good. His pain seems to be managed pretty well, its more the frustration with the casts and his headband and IV tap in the head. The prelim from the ECHO on his heart is a negative on the murmur, or at least they said all looks normal on first glance. The cardiologist is going to take a closer look and be in the room first thing in the morning.

Dr. Fearon showed us the surgical pictures of his fingers and toes and they looked great. It was just awesome to see 5 fingers on each hand. It makes me cry happy tears just thinking about it. We only had to wait 378 days to see them. He also said once he's all healed up in the hands we should try to get the head surgery taken care of before the end of the year and that that would most likely be the last surgery for five years or so!!!

Anyways, a good note to go to sleep on.
Isaiah got out of surgery today at about 12:30 cst and got through it all fairly well. He now has 10 fingers and 10 toes! They're gift wrapped in some blue casts and we'll get to see them in person for the first time in about three weeks unless he pulls a Houdini act again.

The new pulse ox (SPO2) sensor worked great and the nurses seem to like it other than it only works with the newest readers which not all the rooms have yet so the vendor had to set up something special in our room so it reads into the central monitor computer the nurses can see at their base station.

He didn't seem to react well to the anesthetic gas today. First he started trying to chew the mask when Dr. Blakeley started administering it and then his Blood pressure and heart rate would drop some so they ended up using more narcotics than last time so he's been sleeping pretty soundly since getting out of the OR. When the heart rate dropped the anesthesiologist noticed that it sounded like his heart murmur was back so an ECHO and EKG were ordered to double check things and see if that might be the reason for the problems. They've done the ECHO already and we'll know more later once the doctors have time to look it over. It could be nothing, or it may be something to watch out for in the future.

Other than the possible murmur everything else is good, he's breathing well on his own and took over four ounces of apple juice so he's already taking some fluids on his own. Unfortunately due to the special monitor setup needed for his SPO2 we're stuck with a room with only a bed for one to sleep in tonight, so I'll be heading back to Angie's to sleep tonight while Rachel will sleep in the hospital. It might be good for me to get a good nights sleep anyways, especially if we get discharged tomorrow and we start the drive home. I kind of want to be here, but I wouldn't mind the sleep.

More updates as they're warranted...

Dallas Trip Day 4 - Surgery Update 1

We were up bright and early this morning at 4am to give Isaiah his last bit of juice before the 4:30 cutoff. As we were getting ready he went back to sleep and we noticed a bunch of thunder outside. There ended up being some pretty major storms this morning so we hopped in the car and were trying to beat out much of the rain that seems to be dogging us the whole trip. As we were about to get on 35E there was the worlds longest freight train crossing in front of us and it took nearly 10 minutes to pass by. We were anxious enough for the surgery, but the looming storms made us that much more frantic. Eventually we were on our way again and got to the day surgery unit before the sky opened up on us. Unfortunately we left the camera in the car so I had to run back out to the parking lot. By this time it was absolutely pouring and I got soaked, but we got some cute pictures and two hours later I’m dry.

Another new thing is that Isaiah is testing out a new pulse ox sensor. He’s the first one at Medical City to try it out. Normally the typical pulse ox sensor is on the finger or toe and it measures the oxygen level in the blood stream. With this surgery since all four appendages are being operated on they can’t do that so in the past they use the ear lobe, which isn’t that accurate. This new sensor uses the a headband sensor on the forehead to get a real accurate reading and hopefully won’t come off as much as the ear one that Isaiah ripped off repeatedly last time. Its kind of cool getting to test equipment that will make things easier for other Apert kids or whoever may need the forehead sensor for whatever reason . They’ll have a typical sensor on his ear as well as a double check.

He’s in surgery now and doing well from the initial update we got a 9am.

Dallas Trip Day 3 recap

The preop appointments went well for the most part. We do have a bit of a worry though. Apparently the hospital is not considering themselves in network right now because Coventry did not pay them according to their contract for the last surgery (something like only $2000 out of the $35,000 they should have gotten) While we understand why the hospital is leery of getting a letter of agreement worked out again especially since Coventry didn’t honor what they signed last time, but it would’ve been nice to know this before the trip. Instead we learned this at check-in when they asked how we’d be paying the $10,000 out of network deductible. Well we haven’t paid anything other than the deposit to Dr. Fearon and we’re sitting in the surgery waiting room as I write this at 8:45am on the day of surgery. Dr. fearon’s office is making some calls and hopefully it all gets worked out, otherwise we may have a fairly big bill in our future. Before that ever happens we have a bunch of different options like an appeal, negotiation with the hospital ourselves, and Dr. Fearon even offered to call the CFO of the hospital if he had to. He’s got some pull since he pretty much gives them a surgery a day and lots of bed nights resulting from them. All in all, if we do have the pay much of anything it would probably be about a year before we exhaust all our options and would have to pay.

So besides insurance, Dr. F says his hands look great and that we did a great job with the bandages and that there is a good thumb hiding out in his left hand. It’ll have only a small nail because of how things worked out, but he’ll have a good thumb. He also measured his skull circumference at 45.25cm which still puts him just under the 25th percentile which means no immediate head surgery is needed. Yeay!

Needless to say we were a bit stressed last night so Angie offered to watch Isaiah while Rachel and I went to dinner and had a drink to calm our nerves some. It was a much needed break after a long day.

29 July 2009

Dallas Trip Day 2

We got on the road at 11:30 yesterday which was pretty good for us. There was a lot of rain on the drive again, but we powered through at slower speeds and eventually made it to my cousin Angie's in Coppell where we're staying. Isaiah gets to see his older second cousin Karsten who was apparently so happy to see us he decided that clothes were just too much for him so he spent much of the evening running around naked. It was pretty amusing. I don't think Isaiah knew what was going on though, he just kept watching with a puzzled look on his face.
Again we had problems getting him to bed. I'm thinking he was sleeping so much in the car these last few days and stuck in the car seat when he's awake that he has all this pent up energy that he needs to get out and it took until 11pm last night, plus he woke up at 2:30 for an hour.
This morning we woke up to some horrible screams and we thought something really bad happened. As it turns out it wasn't so bad, but Angie forgot we were parked in the turnaround spot in her driveway and she backed into our car. They yellow car gets struck again, 5th time in not even 6 years. The rear passenger door is pretty badly dented, but the car is still driveable. there was a fairly sizeable gap between the window glass and the metal panel below so I taped it up to prevent a little lake from forming inside the door if it rains. It'll be fine though and the important thing is no one was hurt.

28 July 2009

Dallas Trip Day 1

So really it's the morning of Day 2, but whatever. We're in Vicksburg, MS since its about the halfway point in the drive. We've driven all the way through before, but it makes for a super crabby kid so we tend to stop here or in Jackson.
We didn't get a ton of good sleep last night as Isaiah was up almost every hour on the hour, plus he didn't go down until 11:30 our time, a whole 3+ hrs past his normal attempted bedtime. He must be really excited about his surgery because he's been super hyper lately. He was up until 1:30am the night before we left!
We were supposed to meet up with my cousin Walt who just moved to Tuscaloosa, AL, but because I forgot that AL is already in Central time zone we were off by an hr. I knew there was going to be some nasty rain so we plugged on and I'm glad we did because if we hadn't we would've been driving at 35 mph in virtually no visibility and flash floods for more than the 2 hrs we did. There was a nice little caravan of like 5 cars all with their flashers on creeping along the interstate, but we made it halfway safe and sound.
We'll be at my other cousin Angie's tonight and have preop appointments on wednesday!

26 July 2009

The stress of the trip

This whole doctor in Dallas thing has done wonders for our daily stress taking the place of something like 6 of our doctors here and simplifying life the majority of the time, but it sure makes for a stressful week when we have to head West. All of the packing, the long 12 hr drive, the monies involved in just making the trip for gas, lodging, eating etc, they make things interesting. Its all completely worth it for the level of care we receive.

Isaiah was funny this morning. At breakfast he was more interested in trying to feed himself and playing with his food than actually eating anything. He was watching me like a hawk while I was eating my breakfast and not allowing Rachel to feed him so we switched places. With me he ended up picking up his bowl of mashed bananas and trying to get it close enough to his face to lick out of the bowl. At first he didn't bend his elbows so he ended up holding the bowl straight out at about his eye level and spilled some bananas on his nose, which he promptly waited to slide down his face some and lick it up. He then realized he could bend his elbows and get it closer to his mouth, but he got more on his bibb than anything. Its still good though, all the messy exploration. We're trying to be a bit more free with him right now since he'll be in casts for three weeks and bandages for another three after and unless we want super stinky and sticky casts he can't get as messy. We're hoping he'll remember the fun he's having right now and jump back into it when the casts are off.

This is probably the last post until we're on the trip.

Temporary new look

I'm doing a little housecleaning on the blog and updating the look and trying to free it from the narrow column it was stuck in. What you see right now is only temporary until I get things fixed more. Basically the new format should allow bigger pictures, and less scrolling as you read. I'll refine it more when we're back from Dallas.

25 July 2009

Somehow the vital connection is made...

So we caved and bought a new teeny tiny netbook today to use around the house and abroad so we will have some connectivity in Dallas after all. We'll be reliant on free wi-fi and hotel connections so updates won't be instantaneous, but they will be sooner than without the netbook.

It was about $300 and is only about 11" x 7" but its got all we need for having mobile internet and the like, plus its got a webcam so we're going to try get a skype account set up so we can video chat with people.

In Isaiah news he's been getting real talkative lately, almost teetering on the point of being annoying, but not quite. He's finally starting to make some consonant sounds by closing his mouth. We're just starting to hear some lalalalalas nanananananas and bababababas. He's been doing vowels for quite some time now though, but he's just been talking a ton more now.

We've also starting feeding him table foods. He especially likes cheerios right now and has even been feeding himself! Its not consistent, but the fact that he is feeding himself is absolutely great. The best part is this is with only his temporary '6' fingers and in little more than a months time he'll have use of 10 fingers! So he should be even better at it then.

Paparazzi time


Alrighty, I finally had the time to get all the pictures up loaded. The one above is one of my favorites. We were sitting on the floor and he kept trying to grab the camera so its kind of like hes trying to shield himself from the paparazzi. It's actually our desktop wallpaper right now.

I've created a couple of albums, one of just his birthday stuff, the majority of which is him covered in frosting from his 'smash cake'. The second is the rest of the pictures from June and July. Click the links below for more!

Birthday Album

June July Photo Update

22 July 2009

A couple pics as promised


Dallas is a go!

Sorry for the lack of updates around his birthday. I got fully laid off on Thursday last week so I've been scrambling even harder to find another job lately.

On the good news front we just got word from Dr. Fearon's office that we got the pre authorization and letter of agreement for Isaiah's second syndactyly release surgery next week which is a huge weight off our shoulders. It seemed to take forever this time compared to the first go 'round and I was worried it had something to do with the fact we're on COBRA coverage right now with me losing my job.

I'm still working on the pictures, but I'll get a few up tonight.

FYI updates will be kind of sparse on his surgery since I had to give up the laptop work gave me to use so we will only have the internet access in the hotel and at my cousin's place in Coppell rather than all of the time.

12 July 2009

The Pacifier

I've started a very very bad thing... On a whim I tried giving Isaiah a pacifier on Friday when he went down for his nap since he didn't seem like he wanted to nap without the sippy cup he emptied out. Rather than fill his tummy with air and have him burp out his lunch in the crib I figured I would give the pacifier a shot. Now for most kids this probably would be much news at all, but Isaiah has barely ever sucked on pacifiers, and if he did, because of his high palate, it was for maybe 30 seconds without assistance. The last time we can remember him sucking on a pacifier was maybe 6 months ago when we took that picture with him looking all Rolling Stones like. Unfortunately I think I've started something because we've pretty much had to give him the pacifier every time he's gone down for a nap now. We were hoping to get by without a paci, and now Rachel is worried that because we started it so late, it may not be that easy to get rid of in 6 months or so.

The funniest thing happened just about a half hour ago. Rachel had just changed his diaper before putting him down to a nap and of course he gave her a little squirt gun action so I was in there changing the changing table pad cover and he was still stirring a bit. I go over to check on him and notice the pacifier in his mouth, knowing full well Rachel would never have given it to him. I called over to Rachel just to check, but sure enough, he found the paci in the corner of his crib and put it in his mouth all on his own! When I was checking on him he had his hand guarding it like he thought we might take it out. It was adorable!

10 July 2009

B-day Boy

So even though Isaiah doesn't turn one until Friday next week we're having his birthday party this weekend. My Mom is flying in to town tonight for the weekend and the party which is great. Isaiah got to see my Dad and get a sneak preview of some of his presents when he was in town a couple weekends ago, and now my Mom is coming this weekend. I think we may have gone a bit overboard on the presents, but he only turns one once right? The big thing is this almost 5 foot diameter and 4 foot tall ball pit that Rachel got him which, while it'll take up probably half of the living room, will be great fun. I always wanted a ball pit when I was little!
Rachel ordered the cake from Publix and he gets a free 'smash cake' on his first birthday. The smash cake is all his own to smush and get messy with, which will be more good touch stuff with his hands. I've got a ton of pictures from the last month, put I'll probably do a big upload sometime after the party, but before we head to Dallas the last week of July!

Back to your regularly scheduled programming...

Sorry I've been a bit off topic lately. Isaiah's been doing so well lately that our other stresses have kind of come to the forefront. It's kind of funny how you always remember to write about the bad things happening and not all the good ones, so here's a post with some updates on how good Isaiah is doing.

He started up with Physical Therapy again a couple of weeks ago and we're trying to cram in as many sessions as possible before his next surgery in a couple weeks. When Sherry saw him for the first time she said he's like a different baby. Keep in mind the last time she had a session with him was back in mid April. His coordination is getting much better, and we're trying to give him sippy cups more now than bottles because he can grip them pretty well and hold the bottle completely on his own now. He's still not crawling, but you can tell he wants to, so Sherry has been helping us do transition moves with him to help him move from his back to sitting up to his belly. He's learned how to flip himself back and forth from his back to tummy, but not back and forth from sitting up completely yet.

We're also doing a ton of tactile touch and feely things with him right now so his fingers get used to sensations a bit more before the surgery here so he'll remember that touching things are fun after his surgery. We've been playing with a plastic container full of uncooked rice that he sort of plays with like a sandbox. He really enjoys scooping some of it up in his hand and letting it fall out like rain. We've even seen him wiggle his thumb on his right hand to try and touch the rice (or to get it off his hand) The rest of his fingers are still a bit stiff since all of them except his pinky on the left hand are still connected to another finger. They wiggle, but not that much right now, so this thumb movement was great. We've also had him mushing around in some Jello, which, even though it was cold, he seemed to enjoy it. He didn't much like the taste or feel of it in his mouth, but he enjoyed us getting messy and squishing stuff around on his hands.

He's getting much smarter now too. We usually only have to show him how a toy works once or twice and he's got it down, and he loves to mimic us right now. We can get him to wave about 50% of the time, and his new thing as of last night is lifting his arms over his head in sort of a body builder like pose. It was like he wanted to show us his armpits or something, it was so funny I wish we had pictures of it.

So those are just some of the great things he's been doing lately!

07 July 2009

It's Alive!!!!

Well there is good news on the car front. The Toyota is alive again and hopefully going to last another 6+ months. I'll tell you how we got it fixed and the great deal we got on the price of the repairs further down the post.

This whole weekend was full of stress around the car, looking for a potential new(er) car, most of the time with Isaiah in tow. It was a little cumbersome switching out the car seat for each and every test drive we took, but it was really great to get an understanding of how much more room some of the vehicles have. If we had to get a newer car this month we probably would've tried to pick up a year or two used Hyundai Sante Fe mini SUV. I was surprised with how nice it drove and looked inside and it had a ton of great features (like a V6, sunroof and heated seats for our eventual trips up north) for under $17,000. So when we do have a bit more money, and I have a full time job again, we will probably try to pick one up.

As for the Toyota, on a whim Monday morning I googled the problem we were having since the mechanic told us what was wrong with it. It turns out way back in 2003, Toyota had a settlement with the EPA regarding the emissions systems for pretty much all 1996-1998 Toyotas. It wasn't a recall, but rather an extension of the warranty on the emissions system to 14 years/150,000 miles. Since Rachel bought the car used, she never got the notice in 2003 and I was supremely lucky to find it on the web. So I called Toyota Corporate to verify the warranty, double checked the serial numbers on the car to see if they matched (They did) and got an appointment with the local Toyota Dealer. Little more than an hour ago we picked up the car, completely fixed, at NO CHARGE. That's right folks completely free. Thanks for all your prayers, because I swear they helped. You want to hear the best part? Rachel's car is 12 years old and has 148,100 miles on it, so we beat out the warranty by only 1,900 miles. If this happened maybe a month from now we wouldn't be so lucky.

I think Isaiah and Rachel are a little bummed about not getting a new car (and I am too to some extent) but I'm just happy we don't have a timeline over our looming heads to do it right now.

02 July 2009

The 'yota is dying

Well the death watch is on for the Toyota. We've had a mystery engine light on and off for about a month now that only would say there was a generic problem with the emissions system. Today they finally figured out the exact problem, a little charcoal filter buried deep inside the engine compartment. Normally its a $550 repair but the mechanic feels that it could potentially cost more than the car is worth because of how rusted out the bolts are under the car (it was a northern car for the first 9 years of its life and saw a ton of ice, snow and road salt) He's worried that since its so buried in the compartment that when he tries to remove bolts that they're going to snap which means they have to bore out the old ones which is tons of time in labor, and probably requires you to take more items out because you need better access to tap and drill, which could cause a domino effect of broken bolts and the like which is why it could cost so much.
So here's the big issue, while it runs reasonably fine now without repair it won't pass an emissions test and its Rachel's car so the registration expires on August 5th, little more than a month away. No Pass equals no registration which means it wouldn't be legally driveable after August 5th. The $550 alone is a big chunk of change that eats into our already tight budget with me only working part time and anything over that would be even worse. Plus, if the car was in good condition it'd be maybe worth $1,500, so it doesn't make sense to pay more for repairs than its worth, even if we did have the money. We may be down to one car for a while until we can figure this whole thing out. I feel better with Isaiah's car seat in the Mazda anyways.
Isaiah is doing great otherwise. We had a good PT session today working on transitions and improving motor skills and he's nicely napping right now missing out on mom and dad's minor freak out

25 June 2009

Despite the extra time I have outside of work, it really hasn't amounted to much relaxation. It has been great getting to spend more time with Isaiah as he's growing so fast! Tomorrow its 3 weeks until he is one year old! This year has somehow simultaneously dragged and flown by. It's hard to imagine him being in the NICU, being tube fed and on oxygen. It all seems so long ago, but then again we've been through 2 surgeries since then, 4 or 5 different trips to the ER, a trip to Orlando, 2 to Dallas to see Dr Fearon and countless other Doctor's visits here. The dragging seems to be all of the waiting we've done in Doctor's offices and the like, but everything else has flown by.
His birthday falls on the first day of the Apert meet-up in Myrtle Beach, SC and we had originally planned to go up there for the weekend but because of the job situation, we just can't spend the money right now. We've been really lucky to this point to have met so many different people, both young and forever young, with Apert Syndrome, and I'm sure we'll get more out of it if we go next year. He'll just be that much more stable (and probably that much more hyper by then too since he'll be mobile we hope!)
In family news, my Dad is coming down from Racine, WI tomorrow for the weekend to see Isaiah before his B-day. I haven't seen him since New Years when he was last here. We're going to head out to the Thrasher's draft party tomorrow night since its one of the last bits of hockey related anything until September training camps, but it should be fun.

13 June 2009

Weekend Update

Isaiah is doing great lately. We had a little scare where he tumbled himself onto his noggin, but it turned out to be nothing. He didn't even have a bump. We watched him closely the rest of the night to see if he got nauseous or crabby, but nothing popped up and he acted like nothing happened within about 15 minutes. He's been squawking more and more lately and I'll try to get a video up here if my computer wants to cooperate. Lately the 5+ year old box has been putting up a fight with me lately. We've been planning to buy a new one for a while here, but were definitely waiting until my job situation gets figured out.

On top of the computer the Toyota is acting up again. Its emissions system keeps tripping the check engine light and so far every time we've brought it in and they smoke the car to find where the problem is it has somehow reset itself so all they have is a generic code that there's something wrong with the emissions system, but they can't figure out what to fix it. Hopefully it can get figure out soon because A. we don't really enjoy polluting the already smog filled ATL air with our 11 year old Corolla, and B. It's due for a registration renewal in early August and we need to pass the emissions test, which I'm fairly certain we won't right now. Just more stress that we need on top of everything else right?

I'm sure things will work their way out, as God has taken care of us to this point with all of the help from family, friends, and the luck of continuing long term disability payments for Rachel. After all, Isaiah's surgery stuff is working out and we're still on schedule for his second stage of syndactyly release surgery on July 30th.

09 June 2009

May Pictures
































So now that I've got a bit more time on my hands I've finally gotten a chance to post the pictures from the month of May. Fun things in this batch of photos include the casts coming off, a visit to the Atlanta Botanical Gardens with Grandma Kolis, bathtime fun, and some pictures of his new fingers and toes at the end. You can view all the pictures here on our Picasa Web Gallery

05 June 2009

Busy Weekend!

I didn't want to make the last post super long, but we've got a big weekend this weekend. Tonight we're heading over to Johns Creek to have dinner with the Maxwell's who we met with back in January. They've got a 21 year old daughter with Apert Syndrome. We're also going to meet Liz Saylan, a grown adult with Apert Syndrome, and Don and Cathy Sears and their daughter Teeter who run Apert.org. Tomorrow we head down to Newnan, GA to meet the Hills who have an annual get together of Apert families from around the metro area so we may even meet more families and/or see some of the friendly faces we met in Birmingham!

We're excited to see familiar faces and meet new friends as well! Hopefully the little squawk-a-box can make it through all the excitement with out too big of a meltdown. Oh yeah squawk-a-box is a new nickname for Isaiah that Rachel came up with since he's been really vocal lately and 'squawking' at us quite a bit as he tries to talk - Hence squawk-a-box (which is much easier to say than type!)

Somebody really wants to crawl...

Isaiah's been doing pretty well lately. His demeanor is as happy as ever the majority of the time and we've finally got him taking naps in his crib rather than our arms. He's been flipping over to his tummy much more lately too. Unfortunately he still hasn't mastered getting back to his back yet so for the last week or so we've woken up to a crying baby 'stuck' on his belly. All we have to do most times is put him back on his back, he gives a little whimper or two. Nine times out of 10 goes right back to sleep which is great. All in all it's not so bad except for the fact that some nights it happens 5 or 6 times which puts a bit of a wrinkle into our sleep schedules, but doesn't that happen to all parents? From what I understand we've been pretty lucky compared to most parents.
With him being on his tummy more and not throwing as bit of a fit as soon as he used to we've been trying to encourage him to crawl more. He's slowly getting the hang of it. We've been putting him on one end of our bed on his tummy and a toy on the other end and encouraging him to come and get it. He's figured out the whole lift his butt up and move the legs part, but not so much about using his arms yet. Most of the time he's kind of been leading with his forehead, but on the odd occasion he's figured out how to use his arms to get his head up. The more we work at it the better he's getting.
On the work front we've got the insurance figured out and they've expedited the COBRA paperwork so we don't have all the hang ups with the prescriptions and appointments we normally need to have. I'm still looking for part time or contract work, but since it just happened Monday and I've only got 4 days into this we're not too worried yet. Come three months from now it would be a different story. I'm just happy we've got the insurance figured out so we can proceed with Isaiah's surgeries as scheduled.