Isaiah 7.17 : Updates, etc.

 The blog is back,  and you know what that means, another surgery.  I rarely update this anymore as the day to day is pretty much the same and very busy with my work and 4 kids.  Rachel doesn't like to write here but I still like to do this from time to time to update people who've been following along with Isaiah's story we may not be facebook friends with, etc.   The whole crew squinting in the sun    First a little game of catch-up. Since the midface 4 years ago Isaiah's been doing pretty good.  He's been breathing much better overall, even had a sleep study with no apneas! We still have ups and downs, but most issues have been relatively minor and not surgical.   One of the bigger things we've been dealing with behavior issues mostly as of late.  Some of it is the autism and some of it is related to the scarring he has in his frontal lobe from his first cranio surgery at 7 weeks old.  We've been on a carousel of differ...

 It's late, but we made it home safe and sound!  Isaiah is cuddled up on his favorite spot on the couch while Mom and Dad unpack the car.

  Isaiah's favorite rest stop in Vicksburg, MS.  Two bridges, one of them a train bridge. A river, and a river boat all seen from one spot atop a bluff.  I think we stop here every trip no matter what.  Its at roughly the halfway point distance wise from home.  Even if we stay overnight in Vicksburg we end up stopping here so he can see the bridges!

Hoping this works on my iPhone. I apologize in advance for punctuation and spelling errors. Rachel's been giving me a break from driving after we passed Shreveport and we'll probably switch when we get to Vicksburg. Isaiah has been doing great so far in the car. He's definitely got his spirit back and is as stubborn as ever!  We've been having to bribe him to take his meds and as a precaution have been giving him Zofran to keep the nausea at bay. Other than that his swelling is continuing to go down but he's still pretty top heavy. A couple people have asked if there's anything they can help with once were home. We're surprised at how well he's doing so we think maybe just help with meals. We're supposed to keep close watch on him this week so quick heat up casseroles or fast food or pizza delivery place gift cards would be great so we don't have to cook too much. Other than that really continued prayers that he doesn't develop an infec...

Just crossed into Louisiana!

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

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

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 sti...

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...

In the car yesterday

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 s...

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...

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 ...

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 l...

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 vid...

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.

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 hom...

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 ...

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 ...