Our Week of Chaos

I know what you are thinking… that poor Deeds blog should just be titled “Chaos”.  This week has been an interesting one to add to the books for sure.  Before I share I do want to remind everyone I have the Krispy Kreme buy 1 doz. get 1 doz. free cards available now.  They are only $12 and can be used 10 times!  Leave a comment, call or email me for more info and to grab one to help out the little man.

Deeds has been having a very “autistic” week.  Some behaviors are really reverting and we seem to be full throws into meltdown mode again.  I didn’t even realize how much he’d grown out of it as he has learned to communicate but this week was a doozy.  He even yelled at many a random stranger.  He isn’t as little as he used to be so it is even more uncomfortable when he does it.  I’m hoping we can get back to a point where I can count days in between meltdowns and not hours or minutes.  I know a lot of it also has to do with the fact that his entire schedule has been in upheaval since the burns.  I am hoping next week will start to change that little bit of chaos because he finally gets to start school on Tuesday.  WAHOO!  I think having a routine again will help a LOT.

 

Deeds insisted on pushing sisters stroller at the hospital Thursday

 

Thursday at the burn clinic they were really pleased at how things keep healing, but they did notice signs of scars.  We knew it was a high probability since Jeremy and I both scar quite easily, I was just hoping he could avoid it.  The spot on his scalp is deeper than they thought last week, but they think it’ll still heal ok.  They mentioned that we won’t know if his hair will grow back in the badly burned area for 6 months to 1 year.  His little hand is scarring and so we have been massaging it daily and keeping a lot of lotion and lavender on it to help.

We have also been told to be even more diligent about keeping his face covered from the sun.  I thought we were doing a good job considering it’s freezing outside and we are inside all the time but apparently not.  Deeds little face is starting to show signs that the new skin pigment will be different from the rest of the skin on his face.  Once again it’s a “wait and see” thing.  They gave us some sunblock for his face and told us to get wide-brimmed hats to have on him constantly this summer.  I’m worried about trying to keep a hat on a kid that has sensory issues (or any 3-year-old really!)  I can get him to wear baseball hats but they want more coverage than that.  Any great ideas?  I’d love to hear them!

The great news is that we don’t have to clean his face as much and he doesn’t scream as much when we do.  He is also off the pain meds.  I was thrilled when they told me we didn’t have to be back up for another checkup till the first week in March.

 

Deeds with his Cousin

 

I wish I didn’t have to work, and I could be with the kids 24/7.  I am lucky enough to have a job where I can work only Mon and Fri and just pull double shifts on those days.  It is an hour away from where we live so it makes it cost-effective with gas too since I’m only driving there 2 days a week instead of 4.  Today I was headed up to work when all of a sudden, 20 minutes into my drive, my transmission quit on me and I had to wait for help from family.  Thank goodness we have family close.  Ironic as it may be our tax return hit our bank account today.  After an afternoon of tears, crunching numbers and more tears I started to calm down enough to think of our choices.  The thing is, we had planned to trade in my car for a larger one to fit the service dog.  Our sedan with both kids and car seats would not have been enough room for the dog.  We just needed it to make it till the summer so we could afford a larger down payment.  Plans are meant to be broken right?  After searching online all afternoon we stumbled across a car that would work and we could pay for.  The poor guy thought I was a lady he had talked to earlier when I called to test drive it.  He met us and then realized his mistake, however after looking it over, driving it, having Jer do the same thing we handed over the cash (croak, gasp, groan) and he handed over the title.  We now own a new-to-us-but-quite-old SUV.  It’ll work great and I’m hoping it lasts at least a year for us so we can save up again.

Buying the car did use up all our “in case we can’t fund raise enough” money for the service dog training trip to Ohio.  I have faith we can still make it.  We just need to raise $385.56 a month until training to meet our goal.  So that’s my new plan, sometimes if you break the daunting things down you can look them in the eye and tackle them head on.  We Can Do It!  It is a blessing that we were able to get the car that would fit us all and the service dog… so lets focus on the positive!