Wednesday, May 29, 2013

5 months

There never seem to be enough hours in the day let alone week to get everything done and some days I feel like my head is going to explode from organizing and scheduling.  Between doctors appointments, multiple therapies, work stuff, paperwork, house things and life I've learned I need an organized calendar and home! 

My playroom organization helper
So my Google calendar that sends me reminders a zillion times a day has become my best friend.  I've also started going room by room and purging the house of anything we don't need, hello work paperwork from 2006, toys that never get played with and clothes we don't wear!  And it's freeing but, takes time.  I am trying to be patient and realize with time I'll get it all done I just don't know when.

 In between all of the craziness that has become our life I've also come to the conclusion that I really need "me" time devoted to working on my own mental and physical health.  So, back to the gym I go.  Thankfully, Logan fell in love with the Kids Club (Wii, slides, toys we don't have at home, and other kids to play with) so he's my new cheerleader as he begs to go to the gym.  I'm just hoping to keep up a weekly routine that allows me the time to get to the gym so my calendar now includes planned out time at least 4 days a week reminding me when I need to go. (And now that I've blogged about it I guess I better go!)  Because of the chaos I've also tried to disconnect more often from technology which is why I may go longer between posts.  I've realized that some of my priorities need to be shifted so that we can really get back on track and stay on top of things.  The paperwork, phone calls, bills and appointments that come along with Riley's illness are not going away and in fact are only getting crazier.  So bear with me.  I'll update as often as I can.

Riley has been doing really well.  Some days it's like watching your newborn do things for the first time.  This week she's rolled off of her side and has started touching her mobile on her own.  Little things but, huge things for Riley.  She started working with a therapist through the Infant/Visual Stimulation program last week and I think it has been really good for her.  She encouraged us to get Riley black/white toys because at this point, like a newborn, Riley can see very limited colors.  Black, white, red and orange.  She also told us that Riley's peripheral vision is what is allowing her to see right now.  Honestly, I am thankful Riley has her sight at all in any capacity.  Much like many of the issues Riley is facing, having at least some ability will allow us to support her and get her the most help we can so she can learn to live with her impairments.  We have an appointment at the Center for the Partially Sighted next week.  I am anxious for the appointment and hope they can provide more insight in to Riley's true vision and also help guide us in the right direction as far as what we can do to help her.  The therapist that is currently working with Riley will attend the appointment as well so she will have all the information she needs to continue to provide Riley with the best therapy plan.

Feeling gravity
Infant Stim Therapy
We'll also see an audiologist on Friday.  We know Riley can hear but, in what capacity we are not certain.  Talking with a few people who have children with hearing loss I know that early intervention will help Riley the most and hopefully, with time, either Riley's hearing starts to "wake" up or we can get her devices to help amplify whatever hearing she has.  Again, another sense that I am happy she at least has some use of (to the best of my mommy instinct knowledge) and we will support Riley in whatever way possible to enhance whatever hearing she already has.

We had a very busy holiday weekend filled with family, friends, bbq's and lots of pool time.  It was nice to have family and friends who are willing to come and hang out with us as going anywhere right now is next to impossible as a family.  Logan is now asking everyday when his cousins can come back over and when Gavin, Donovan and Aila can come swimming again.  Weekend bbq's were the norm for us before Riley's illness so being able to do normal to us things helps to get us through the week.
Hanging out with Uncle Scott

Silly boys

Hanging out with Grandpa Hopper
Picnic dinner
Pool fun with daddy!

                                                        Floating with baby Mia!

Yesterday, Mason and Riley turned 15 months old.  It's funny how I vaguely remember Logan's month birthdays after a year but, have come to really appreciate them with the twins.  Mason is a ball of energy running anywhere and everywhere and really starting to show his determined personality.  He babbles non stop,  understands when we ask him to do something or tell him no (well he sort of gets the last one).  Some days it's hard to imagine what life would be like if both Mason and Riley were running around together.  We try not to dwell on the fact that they aren't doing things side by side.  I feel like we really only got 9 months as true twin parents and I hope that one day we'll have that feeling again but, I really don't know that we will. 

Monday was the 27th, it's been 5 months since Riley was admitted to CHOC.  She's come a long way from that December day but, still has a long way to go.

The last 5 months have been the fastest, slowest, most chaotic 5 months of our lives.  5 months ago if you asked me when Riley would be coming home I would have answered, if she comes home.  We just didn't know.  I know I try to be as positive as possible through this blog, mainly because staying positive is the only way I can cope but, I will admit it hasn't been easy the last 5 months.  When I get down or feel overwhelmed all I have to do is walk by Riley's room and I feel an overwhelming sense of calm and thankfulness.  It's a much different feeling than the feelings I had when Riley was still in the PICU and we were told she would never do x,y,z.  She's already starting to do many things that were on that list and for that we are thankful and hopeful.  It's what pushes us on. 

I can't predict what tomorrow will bring nor do I know what the future holds for Riley but, I do know that we are all together, we have an amazing support system and if we've made it this far we'll continue to make it. 

Thanks for your continued thoughts and prayers.  Fight On!

Dave, Megan, Logan, Mason and Courageous Riley

1 comment:

  1. You continue to amaze me. Best of luck and lots of hope coming from us over at Dr. M's office to all of you. Love, Cindy