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