Isaiah 7.17 : Updates, etc.

Ready to help open birthday presents See I promised it wouldn't be two weeks!  Only 11 days this time.  Everything is still going well.  We got word from Dr. Fearon to stop turning the distraction screws on Wednesday last week.  The final number of turns was 63 and at 0.5mm per turn that means his midface was brought things out  31.5mm or about 1.25 inches.  Its really an amazing difference overall.  Right now he's wearing the device for 3 more weeks so everything can heal together properly and we're now scheduled for removal on May 16th at 7am back in Dallas.  It can't come off soon enough!  We've learned to live with it, but we all want it off.  Its become the new normal for now. This past week my mom was back in town to help with the kiddos so Rachel could try to get some work done.  On Saturday we had a nice family birthday party for Christopher who turned 3 on Saturday and we'll have another one down the road some with al...

Whoops!  I didn't realize its been almost 2 weeks since I last updated.  Even though we've had a bunch of help the last few weeks, its still a bit of a busy mess at home and I've been working more than my 40/week to play catch up on all the things I missed at work while we were out. Most importantly Isaiah has been doing really good!  Big update below, just click on 'read more' below the pictures. Current front on shot taken 4/13 Current profile taken 4/13 - So different!

Leaving the Residence Inn Sorry for the lack of updates.  It's been a bunch more work than we thought at first here, but every day is getting better.    Isaiah is healing well.  He's still pretty bruised up under his left eye, but the right is almost clear now, just a little yellow in the skin yet.  Where they had his arterial line and iv's on his arms are still bruised as well, but slowly getting better.  His incision on the scalp still looks great and we've had no major issues with where the pins go into the sides of his head to hold the device on. The problem we still have is feeding.  He'll barely eat anything yet, and we have to force him to drink things. He won't touch pediasure, not even diluted half and half with milk.  We've tried Carnation instant breakfast mixes  and a couple other things but all he'll drink is apple juice, orange juice, or milk.  Its better than nothing, but not enough.  We still had the feeding tu...

Pretty good day all things considered.  We ate some of our first solids, and he's been steadily drinking milk from a hair dye bottle.  He won't do pediasure in the bottles yet so we've still kept the feeding tube in yet to do meds and supplemental feedings of pediasure.   Its getting better but we need him to east more on his own through his mouth. The feeding tube is not something we were prepared for dealing with, but its making the pain meds way easier to do right now since he usually gags and throws up from the sweetness of the children's motrin/tylenols.  That should hopefully make the trip home a little easier tomorrow. He likes to hold the front bar when sleeping He has been sleeping a ton as I'm sure his body is jsut beat down trying to recover, but really doesn't seem to be in much pain at all and his swelling almost seems negligible compared to the Cranial Vault Reconstructions (CVR).  He is having difficulty somewhat getting comfy laying in be...

We got discharged from the hospital a little after 5 pm yesterday. He's doing pretty good. I'll try to get a longer update in when I have a chance but it's a bunch more work on our own!  We're re still tube feeding but we started some soft solids today. Some syrup soaked Belgian waffle some tiny cut up grapes. This is probably going to be the biggest hurdle early on here. He's not acting like he's in much pain and he's getting more used to the halo. He's been a bit more talkative but still mostly one or two answers. Here's a little video of him this morning. Enjoy!

Look at that cherubic face! The rest of yesterday went pretty well.  We moved out of the PICU in early afternoon and have been on the regular floor since then.  He's been up and walking more and healing pretty well.  Pain has been managed well too he just wants the RED off his head already.  All in all he's recovering very well and we'll probably be discharged today. We still have some challenges though.  Feeding is still an issue.  He still has the ng tube in and oral feeding is not going the greatest.  He can do juice and water somewhat but needs to be reclined not to drool.  The feeding tube freaks Rachel out a bit, but we need to keep it in until he can take enough by mouth regularly and not throw up. The other issue we have is that his stools are so loose every time he passes gas he has an accident.  We've gotten better this morning about going to the bathroom, but we've had 4 such accidents the last day and it doesn't bode well ...

Another night in the PICU, hopefully moving to the floor later this morning if all goes well.  He's got a feeding tube in his nose that they've been doing med and feedings through since the IV failed yesterday afternoon.  His hand is still a bit swollen, but not nearly as bad as before.  We've gotten up to use the bathroom a couple times since they removed the foley.  As Olaf says 'All good things, all good things'.  Rachel stayed the night again as I've been close to losing it emotionally the last day or so.  I felt like there was too much movement in his midface when he was scrunching his nose with the nasal trumpets in.  He would scrunch and his whole midface would move like 3/4 of an inch and make this crunching / clicking noise.  I first thought it was the sound of his bones hitting, but realized later it was the dental splint.  It just gave me the shivers and I'd start flapping.  I just don't do well with blood and all this stuff...