Saturday, October 26, 2013

Imperfect Mommy's need a night out too

Social media has officially made me beyond annoyed at times!  This imperfect mommy (otherwise known as special needs mommy) feels like crap when I see all of the Mommy's with their perfect kids showing off all the fun stuff they do or all the fun mom nights out they get with their perfect mom crews. Well us imperfect momma's don't really have as many hours in the day. For example a typical day for me. 
*Drop Bella at school 
*Attempt to grab a quick coffe through the drive thru
*Go to swim therapy group /gross motor group
*Attempt to catheter in the trunk of the car while avoiding getting pee everywhere as well as poop since a blow out is inevitable this time of day thanks to the bowel issues
*Drive home while attempting to keep Eddie awake so he doesn't fall asleep in car and can eat lunch at home
*Wake Eddie up once we're home since he feel asleep
*Feed him lunch while catching food thrown on floor
*Put Eddie down for a nap and listen to him cry for 20 minutes since he slept in the car
*Send one email
*Wake Eddie up right after he finally falls asleep
*Go pick up Bella at school

That's all before 3pm. This not including any after school activities with Bella and dinner and homework and bed. A few catheters in there somewhere too along with meds. 

Thank goodness for iPhone alarms! 

So I've decided these imperfect mamas deserved a night out like the rest of you. For good food and better drinks! Along with lots of talk about our lives without feeling like someone is going to tell us how strong we are or how our kids are miracles. So once every two weeks we're having a night out! Last meet up there was 3 of us and this week 7! Can't wait to see how many of us we can get together. Take that perfect mamas! We have a crew too! 

(Want to credit Gina and Pat writers of "Shut Up About Your Perfect Kid" who originally coined the term Imperfect Mommy/Kid) 

Quickly I wanted to mention that at the conference last month and the Abilities Expo we received a ton of catheter samples and I've had a chance to use some this week. I was curious if I'd like them better than the ones Holister sent me from my Secure Start research and conversations. Ugh, definitely not. Let's just say diaper changes were a bit messy. So the Secure Start process with Holister wasn't one of those too easy to be good events. It actually was that easy to discuss, research and find the right catheter for us. I do wish the bag was a bit smaller since we only get about 50-100mL's at a time but I'm guessing this is because the catheters we use are for adults and pediatrics. Also, a catheter that only goes one way and doesn't slip back into the bag would be so much easier too, holding eddies legs and inserting the cath with one hand while takes some serious dexterity.  Either way they've worked great for us! 

Sunday, October 20, 2013

Can someone make this decision for me?!

A lot has been going on lately. First thing was that we took Bella to NYC (a very very late Christmas present). The poor kid has been so patiently waiting for this day for so long. We had already rescheduled it twice. The first time due to lack of sitters and the second due to our wonderful Fourth of July escapades. (In case you forgot the whole blood clot/ dislocated shoulder blade fiasco!) she couldn't wait to go. We took her to see everything she wanted. She loves NYC so much. After lots of sightseeing we took her to see Annie on Broadway. It was so awesome! Bella has been singing songs from that musical since she was 2! She has watched that movie a zillion times. She was first in line and wanted to wear her hair just like Annie's! She was adorable!

We also made our biggest purchase ever that week. Despite being super broke my car was costing me an average of $300.00 in gas a week just to get Bella to school and Eddie to therapy. There was just no way we could swing it anymore. We set out loan shopping and car shopping and some wonderful goodwill from wonderful people allowed us to not only get a loan but an amazing deal on a car. We got the perfect car for us. It's a '09 Subaru Forester and it's in amazing condition with great mileage. I went from filling up once a day to once a week!!! 

Speaking of financial woes, I have felt really guilty lately. I'm torn between going back to work so that we can not only get on our feet stably but so we can move towards our dream of homeownership and being here for Eddie and all of his therapies. If I go back we'd be in a better spot financially but Eddie would lose some of the services he gets and I wouldn't be able to learn from the therapists like I do now and continue to be a part of that work. I don't think I'm anything extra ordinary but I hope that the fact I'm here helping push him and working with him at home attending his therapies is a big part of how he's come so far. What if that stops. Who will push him? What if that choice pushes him backwards or holds him back. At the same time how will we keep a roof over these adorable children's heads? Food on the table? Big choices need to be made, and very soon. I've never felt so stressed and sad about anything. I feel like I'm letting someone down no matter what. Either little Eddie by taking away what I feel he desperately needs or big Eddie by putting all the financial pressure on him. I'm hoping I can find the faith I need so that we came make the right decision. 

Monday, October 14, 2013

It's finally here!!!!

It has arrived! Our trial walker is here and in true Eddie fashion he loves it as long as I'm not the one walking with him. He takes off like crazy with everyone else but if I take it out and try to get him to walk anywhere he stands on it and just whines and says "Mommy no.... no mommy..." over and over. The little man has officially got my number! Despite this I really am trying to get him walking on it. Today I'm planning on reorganizing the house a bit so he may have a little better time getting around. Maybe then he'll use it in the house a bit. We ordered one of his own that should come soon. Hopefully we can use the loaner one until then. Also we've upped his PT and added OT and like last year he's going to be doing the work with the American International College students. For four weeks once a week he gets to work with students in the OT and PT program. Last year it was really beneficial to have them working with him and I can't wait for it this year!

Eddie and his best friend at the zoo!

We had a our first UTI this week also. I know this isn't normal talk but in the SB world it's common conversation. Good thing is it was very mild. Actually as soon I brought him to the doctor we were at the tail end of it. Like usual, I got right to researching it. I went to my go to Hollister People First website and found a webinar on preventing UTI's. It was great, some stuff I already knew but it was nice to have a refresher. Sometimes I cath so often I forget the step by step stuff. It was given by a nurse with LOTS of stuff on her resume! It's funny, at first I used to carry a bottle of hand sanitizer everywhere so if I had to cath outside the house I was sanitary. Somewhere along the line I stopped bringing it for some reason. Also, I noticed that I was cathing very quickly. Possibly causing damage. Which can then bring UTI's. I'm determined to be more sanitary and much more careful.

A bunch more happened this week including a trip to NYC and a new car! I'll blog about that later since I'm totally unorganized and don't have the pics all together! Wanted to get our exciting news about the walker out there first!