How I Beat Procrastination

Hello my name is Skye and I'm a recovering procrastinator. I'd like to tell you how great life can be when you're not in the ulcer inducing state of procrastination!
As you might know we have family in PA that we try to see as much as possible. I'll be totally honest and tell you these trips used to stress me out of my mind! There was always last minute packing, oxygen set ups, packing, laundry, packing and cleaning because you can't leave your house dirty people! It was crazy!!
Anyways I thought about it and I really couldn't figure out why I left things so last minute. I usually know almost a month or a least a couple of weeks in advance when we're going. I have a million packing lists already made up depending on current meds and time gone. I could not think of an excuse. It really hit home on the nightmare Thanksgiving trip. I did the oxygen waaay too last minute had to pull strings to get some and then packed/cleaned that day. It was awful, and if I had done it all in advance we could have left early during daylight and I probably could have avoided that nasty shoulder injury!

This is how Amber feels about procrastination:

                                       (actually I warned her she was getting a shot and she gave me this face)
Anyways! Last trip I was ahead of my usually last minute schedule and it was such a great feeling! I had no idea what to do with myself but I didn't feel like my head was going to explode.
This time around I'm doing even better. Oxygen is all set and I should be getting my new supply of medical stuff in before I go, meaning less stressing for when we get back. Tomorrow I'm all clear to start my packing!! I still have like 8 days to go!
Doing things in a timely fashion is so liberating! I wish I had figured this out when I was still in school!
Now if only our oxygen delivery people could get on the same kick. They called at 10 this morning and just showed up now at 8.....way to mess with my dinner and baby bed time!

Here's To Hoping Things Get Better

First of all, I would like to apologize for my last post. Holy typos batman! For the sake of an excuse for my English language loving friends I will now go back to reviewing and editing my work before I hit that publish button! I'm trying to get back into the grove of writing. I'm personally horrified with my latest efforts so please bare with me!

All bundled up!

Amber had a follow up with her eye Dr on Thursday. I was really worried about this appointment because at her last appointment in October she wanted nothing to do with them, put up a big stink and refused to even open her eyes. Because of her stink fest they could not accurately tell if her corneal clouding had gotten worse. At the time they thought, based on what little they could see, that the clouding had actually gotten better.
I'm very pleased to say that Amber behaved herself enough for them to actually get a good look at her eyes. The clouding is still present throughout the stromal layer (I'm pretty sure that's the middle layer of the cornea/white part) it is not getting better (not surprised) but it doesn't seem to be getting worse for right now. Believe it or not that's actually good news! The fact that it's there is just a fact of what Amber has, for it to be getting better would have been something close to a miracle. The fact that it's not getting worse is obviously great news since we can see other parts of her (like her gums) are getting worse. The other good news from this appointment is her eye sight hasn't gotten any worse and her glasses are working out very well for her! We'll go back to see them in the spring for another follow up.

Friday we made the long journey into Boston to see Amber's geneticist. Apparently really big snow bankings have a magical affect on people and they forget how to drive, which is very surprising given where we live! Our hour and a half drive turned into three hours and even though we gave ourselves extra time we were still late, but thankfully so was everyone else!

The magical snow bankings in Boston!

The appointment went really well. They were very happy to see that Amber wasn't in the super sick state that they had expected. They gave her a thorough looking over, did some chest x-rays and blood work. We found out that her lungs sound a little icky but look clear on film, she has yet another ear infection and her potassium is a little out of whack. The best news from this appointment was based on Amber's last head/neck x-ray. It showed that she has a really good airway, better than expected so this alleviates some day to day stress. We're still not completely sure why Amber's been having breathing issues at night and running an on and off fever. We do know this past week the fever has been from her ear infection. To get things back to normal she's on an antibiotic, we're back to giving her inhaler more often, doing chest pt and just giving her whatever she needs to help. We're really hoping this will clear up the odd fever thing for good. Since she doesn't act like she's sick or anything is bothering her it's a good sign that nothing really bad is going on.

For general news around our house; we're due to get a lot more snow (again) this week which might put a wrinkle in early intervention and the pediatrician visit. The babes and I have about 10 more days till we take our trip to PA. This means I'll be spending the week getting my butt moving on making sure everything is all set for us to go. I've also discovered that in the absence of my mother I'm actually a pretty good housewife.
 And now I'm going to proofread this, feed my super adorable baby and finish cleaning my shower, sounds exciting huh!

Proof that my baby is super adorable!

Hello Blog Did You Miss Me?

Can you believe it's been a month since I've posted anything. I feel really bad in a way but I just haven't felt like blogging. There hasn't been much excitement here. We had a great New Years with our PA family and had a lot of fun but it was way to short. Honestly this has been a pretty boring month, it's been cold, people are sick so we're staying in!

So you're probably wondering whats going on with the little princess. She is very talkative, she can even say her name now!! She's still gaining muscle strength and even got fitted for a gait trainer! We're looking into water therapy programs for her, to increase her strength and get her stretching in in a more comfortable environment. Amber is definitely not a baby anymore! Everyday she acts more and more like a toddler and big girl.  The only bummer of the month is she's been running a fever on and off and de-sating a lot at night, since she has not other sickness symptoms it's a tad concerning to her Drs'.

For upcoming appointments she has an eye appointment tomorrow and a genetics appointment on Friday (weather permitting).  Our other upcoming appointment is a week long trip to PA!

You might have seen this on facebook but I think it's good enough to repost!