Feeling Full

Kiran has just been making exciting strides in so many areas in the last month!  He continues to do well with his walker and is so interested in taking steps.  He still needs to develop a lot of strength and stability with his standing – and we need to be able to trust him (he still decides to just fall over periodically) – but it is just so heartwarming to see his little legs and knees working as they should!

We had a follow-up feeding clinic appt in Iowa City last Thursday, and it was (unexpectedly, for me) a very exciting appointment!  They were so pleased with his skills, and he is actually gaining weight a little faster than they would like….so….we cut back calories through the g-tube!  They want to see if this will make him even more interested in oral eating and if he can maintain a healthy weight gain pattern with fewer calories through the tube.  I had no idea we would even be at this point – and it’s a little stressful for me, to be honest – but we will be sending his weights once a month to the GI doctor (Who, by the way, I love – it took 3 GI docs for us to get one we like, but I am so thankful we have who we have now!) so Kiran will be closely monitored through this trial.

Feeding continues to just be interesting.  Kiran had a couple weeks where it just wasn’t going well, and he was having excess saliva so more coughing episodes…but in this past week, he has shown me some really amazing meal times.  He is accepting bites really well and accepting his liquid washes too (We are to attempt to give him a drink after he swallows each bite – this helps clear the food and seems to be helping with his tendency to occasionally aspirate minutes after he swallows.)  Before his nap today, he had a great meal, accepted every bite of puree I had put in the bowl (a tablespoon probably, total) plus two veggie straws plus accepted his liquid washes like a champ!  For the first time in a long time, I have hope that the g-tube might not have to be forever (But, it is still okay if it ends up having to be).

We had an exciting morning this morning, too!  A new inclusive playground just had its grand opening yesterday, so we couldn’t wait to check it out today.  A lady was actually there filming for a segment on Iowa news (Tomorrow, Iowa peeps, channel 13, sometime in the 5-7 am timeframe, Kiran and I might make it on TV) so she filmed us playing and interviewed me on camera about the park.  Pretty neat experience.

But – the park – game changing.  Our favorite part was the wheelchair swing.  It is the only one in the metro (there are two other inclusive playgrounds – that I know of – and we have been to both; neither have a wheelchair swing).  Everyone who knew me as a little girl knows I LOVED swinging.  I have always wanted – and tried – to get Kiran to love swinging.  Today, I saw him enjoy it, for the first time ever.  I really think he has never felt safe and secure, steady enough to enjoy swinging at a park before today.  Yes, I cried.  There is also an accessible merry-go-round, a really neat music area, a rocking “boat” you can wheel right on … it’s a really neat playground, for all kids.  I am pretty sure we will be making at least a weekly trip there!

My heart is just full today.  So much hope, so much joy, so much progress.  This little man never fails to amaze me, and I know we have some exciting times ahead.


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