Archive | April, 2015

Making our home accessible

22 Apr

This week has been a very busy one, and it’s only Wednesday.

On Monday Ladybug went in to be fitted for a fancy new orthotic.  It basically wears like a vest, a very soft yet sturdy and supportive vest.  It will help with her posture, head control, and hopefully with the scoliosis which is a curvature of the spine.  That’s not even the cool part.  With all the new technology out there Ladybug didn’t have to be casted for this orthotic.  Thank goodness.  Essentially Ladybug wore a netting dress and balaclava type hood and a 3D scanner just like the one below scanned her body.  I wish I had taken a picture of the data coming together on the computer screen.  You could even see a bump where her Mic-Key G-Tube was.


The nearly finished product will be created in the next couple weeks then we return for a fitting and minor adjustments.

On Tuesday we had a gentleman come in, take measurements, pictures and give ideas on what we will need to do to make our home accessible for Ladybug. Currently we wheel her wheelchair into the foyer and there it stays.  Thank goodness my little princess doesn’t weigh a ton as we carry her from room to room.  Our hope is to put in either an elevator type thing or a wheelchair lift on our stairs.  Because the house is 3 levels and Ladybug will need to access all three levels the elevator is off the table.  (Only able to make 2 stops) There is an option to put a porch lift inside and build walls around it, the huge downfall is that Ladybug will lose the majority of her therapy/relaxing room.  I liked the idea of the stair lift for her chair, however, our stairs are potentially too narrow. Which means we would have to tear out both sets of stairs, widen them, move load bearing beams, tear out ceilings, build new walls and on and on.  So now we wait for a quote for just the equipment and determine what exactly will need to be done.  He also took a look at one of our bathrooms that will become accessible.  Luckily it is a large bathroom and will be very easy to renovate.

Keep your fingers and toes crossed that we will be able to do the majority of the renovations without having to gut our home or sell major organs to finance it.

Just looking at the smile on my little Ladybugs face in her new chair will make it all worth it though.


Shiny New Ear Tubes

10 Apr

Ladybug is out of surgery and has a brand new pair of ear tubes. 

Although there is a lot of discrepancy regarding children actually needing ear tubes, Ladybug proved these past few months that for her, they are greatly needed. Since autumn when the first tube fell out, she’s had numerous ear infections, ruptured ear drums and a granuloma on the one tube that was left floating in the abyss.  

The surgery went well, no issues at all. We just have a very tired and sore little bug. 

Here’s a picture of Ladybug and Daddy-o snuggling before the surgery. 


Healthy amidst an outbreak

1 Apr

From all our hospital stays over the years, it’s hard to believe we would be here while Ladybug is healthy.  

No IV’s beeping at all hours of the night, no surgeries, no pokes, no fevers. It’s a whole new world. 

I thought all of the above would make the stay easier but it really hasn’t. We’re fortunate enough to have a private room so that’s a HUGE bonus. However, shortly after Ladybug was admitted we discovered our ward has a big outbreak of the Norovirus. For those not familiar the norovirus causes vomiting, diarrhea, nausea, and stomach cramps. Babys and children with weakened immune systems are the most susceptible to catching it and getting very sick. It just so happens I have one of each smack dab in the middle of this germ infested place. 

After chatting with the docs we’ve agreed to cut this stay short and go home today or tomorrow. 

Now that I have two munchkins I was a bit worried about how I would handle both, while being cooped up in a little room. I am happy to report that I handled it just fine. Books, toys, and snacks kept my little man occupied (not to mention the constant admiration of the nurses) and Ladybug was for the most part content chilling, watching cartoons, and being doted on. 



We should get the final results of the EEG in a couple weeks. On the 10th Ladybug will be back in for new ear tubes, and then possibly back in for a stay at the end of the month to start the Ketogenic diet.