Riley Day

Today was a "Riley Day."  We left this morning around 7:30 and got back right at 7:30 this evening.  These make for long days.  We were able to get two appointments on the same day, so that was very convenient and lessens the number of trips we make down there.  We will shortly be admitted into the Cerebral Palsy clinic which will allow us to see several of our doctors on the same day, at the same place, back to back.  This will also reduce our number of trips down there, but more importantly, allow the doctors a chance to talk about Levi together as they seem him individually. I love this. I think it will be so helpful for him to have his "team" together and have my questions answered by all of them in one trip. Very excited about this.

Back to today...

We saw the eye doctor and the developmental pediatrician - I really like both of them (however, not so much the eye doctor today as we waited over an hour after our scheduled appointment time) and they both are very thorough and willing to stay and answer every last question I can throw at them.  And that was quite a few today for the developmental pediatrician (we were probably the ones that made other people wait, as she sat with us for over an hour discussing his progress, development, and future needs).  Overall, Levi really is doing fantastic...

-He is feeding himself with a spoon

-Starting to use his pincer grasp more (thumb and pointer together) to pick up small objects

-Using his gait trainer, much to his delight

-Has moved to a twin sized bed and is able to find a way to transition himself out of it all by himself

-Is able to get to kneel and tall-kneel at a kids table to play for short amounts of time

-Is able to follow commands

-Is able to point to an object when you ask him (i.e. "Where's the cow?")

-Is babbling more and more with a few more words and will begin to use a communication board 

So, overall, really good.  BUT...we did have the wheelchair discussion. That's always really hard.  And I think we really need to consider it.  Levi is getting very heavy to carry around, and we pretty much have to carry him everywhere, except on the main floor of our house or others' houses.  Up and down the stairs.  In and out of church.  To and from the car when we are not using the stroller.  It's a lot and he gets very heavy very quickly.  We talked about it from a standpoint of our self-care (saving our backs) and from the standpoint of others' caring for him (grandparents, church caregivers, babysitters, etc).  We will be meeting with the wheelchair people some time in the next month or so just to talk about the logistics and to see when/where/how/if this is really a necessary step right now.  Even if he walks, the likelihood of him needing a back-up mobility device is pretty high.  He will probably tire quickly and there will be some places that walking will be more difficult.

On the one hand, I am excited to think about the possibility of it.  He needs to be up at eye-level and able to play up at age-appropriate toys like other kids his age, as opposed to mainly having access to toys on the floor.  And, obviously, this would help mobility issues in several situations.  On the other hand, it's a very hard and emotional thing.  I have always equated a wheelchair to him not being able to walk and really minimizing his abilities.  I know this is not true, especially as it will only maximize his abilities. But sometimes the heart and the brain just don't connect.  And it's just another thing that sets him apart from other kids and being "normal."  I hate that. And it makes me sad. But we will do what we have to do and I know that in the end, we will make the best decision for Levi - not for me, not for Nate, but for Levi.