A little slice of crazy

Beautiful night to sit outside after dinner. Even if it’s not a peaceful or relaxing moment. 

Just a little peek into our special kind of craz here. Manis/pedis are NOT fun this little hyper-sensitive busy bee. 

Bubba doing what he does best, distracting Reese during one of her not so fun sensory overload moments. Notice how she licks her hand the whole time? That’s her new “I’m uncomfortable” response. 

It’s hard to tell Davis to stop and honestly sometimes I think he is helping distract her. Her happy senses are lights and music and bouncing. Her not so happy is any kind of pressure on her hands and feet. It is something we work on every day. 

And then we see new signs of learning by our little love bug. She is following the simple task of picking up her toys. We do hand over hand a few times but she eventually does it by herself. It’s like Groundhogs Day around here though. Just because she figured it out yestersay doesn’t mean she will remember today. And then she figured it out again and we repeat. We repeat a lot. The good behavior and the bad. I admit we are so tired we don’t stay on top of her like we know we should. 

But then we see the funny moments when she gets to explore by herself. Like bedtime. I never had to think about what was around her crib before this month. Now, she has discovered she can pull everything through the slats! I laughed so hard first time we found a slew of clothes, formerly folded in a stack outside her crib, now providing a second layer of blanket INSIDE the bars. It’s a good problem solving challenge for her so I keep letting her do it. Tonight it was a soft book and a fake wood spare shelf. Tomorrow who knows… 

Progress every day 

It feels like as good a time as any to put it out there. Things are pretty good these days. I still hold my breath every time she bends over or stares into space, but our little warrior defies the inevitable. And it is most likely going to happen again, so we will try not to get too high on life because I fear the fall will be much worse.

So the update aside from all things good is we have been checking on her body to see if it’s as good inside as it looks outside. Today was a new test for us. She had a stimulant test run to check out her body’s natural response because the steroid our body makes (partially adrenaline) is created when we are excited and stimulated the same as when we are sick or hurt. This will tell us if her immune system is back on track after the long-term steroid use.

Personal note: I always think I can be supermom and handle her by myself. I say how on earth can I be so spoiled to always have someone helping me. It’s just one kid! My sister manages 4 by herself many days!  I have also met all these strong moms with medically-complex children and they do it seemingly with ease. And yet, after 2 hours of trying to wrangle her, sooth her, and meet her needs, I’m ready for a nap and some wine. And that’s what reminded me that I really don’t care about how all the other supermoms do it.

Child Life provides toys
trying to find a way out of the room

The highlight of the trip was Doodlebug’s first experience with Rover. Check out how calming this thing is for her. She loved the bubbles and the mirror combined. She was hugging it; she couldn’t seem to find how else to express her happy feelings.

This was just further proof that Cook Children’s is a great place for us and we are so grateful we have them. Plus, we saw a familiar face from the Child Life group who has helped us from the beginning and she hardly recognized our girl. But that “family” feeling of knowing people and having them know us is so comforting. It’s my favorite part as the mom who probably needs that reassurance now and again that we are making progress.

hugging Rover

[finally got a very late nap in
And today, despite the stress of worrying about her and the extra prick because the IV blew (of course it did), and having used the one diaper right BEFORE she decided to have an unexpected poop, oh and the fact that I left the urgent grocery run of milk and diapers IN the car where they sat for the two-hour doctor visit, I’d say it feels like we have lots of good days ahead. So that is most definitely the kind of progress we want.

Move over Hiccup! There’s a New Inventor in town

The heart on this boy moves me to tears more often than I can handle admitting. We have secretly been feeling for a while that this boy’s destiny is tied to his sister’s and in turn helping many others. So I admit we embrace small moments to teach about helping others. But nothing over the top. We are still awfully spoiled and lacking nothing in life, except maybe time.

However, our weekend of snow has led us down a new path I had to share because what momma doesn’t boast about her son saving the world. Or even one who is thinking about it!

Continue reading “Move over Hiccup! There’s a New Inventor in town”

This road…. Hard even when it’s good

Doodlebug’s third birthday is bringing so many things to celebrate. We are also having to let go of a few things and it’s been hard.

Early Childhood Intervention was a true lifesaver for us. People don’t tell you there is this wonderful service out there. They tell you your child needs support.

They should send home ECI flyers with formula and again in the diaper boxes. Because I’ve met so many parents who are starting their journey of speech therapy or OT, or just getting their heads around an autism diagnosis. And they never heard of ECI.

Many professionals will say you cannot diagnose for these things until they are older. And I get that. But why tell a parent who has a concern to wait. Why not say, you know if you are interested in exploring feeding therapy, there is this great way to get started before they turn 3.

Just sayin.

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This Special Road: Giving to Others

I am repeatedly blown away by people’s support for our journey. Both dear friends and complete strangers praise our strength and give selflessly of their love. I admit it helps even if only for a second to know someone is recognizing it’s not an easy road.

But here’s the other side. I am reminded daily that we are so far away from being the worst of cases. And while our daily worries and struggles are exhausting, we have a more often than not healthy child, TWO actually! And we cannot be more thankful for anything on this Earth.

So, over the holidays, while I couldn’t make time to go give to others the way I wanted to, I did spend time filling up my heart with stories of other courageous mommies and their beautiful families. Theirs are the inspiring kind. The truly heart breaking and breathtaking that I admire now in a way I couldn’t appreciate before.

Continue reading “This Special Road: Giving to Others”

Music – even more to love

My friends know I love music. It fits me in every way — I am auditory, it lets me connect to memories and stories and the creative freedom attracts my inner artist.

But none of that tops how it feels to share my love of music with my rugrat. My love bug, who of late only wants to do her own thing, her way, has her moments of appreciating the joy of music. So capturing this moment of her attending to the instrument and the teacher for almost an entire song is remarkable compared to where she was six months ago.

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