Wednesday, February 23, 2011

Heart in your hand.

Little Henry. Screamed for nearly 36 hours. He took a 3 hour break at about 3am. Noah called the GI doc, to find out if we could do something. We're venting him every hour, sometimes more. He's getting teeth, so he sucks air, swallows it and isn't able to burp. We are exhausted, and needed some support from Henry's medical professionals... Noah called at 9am. The nurse called back when she got on shift at 10:30 - "do you think your GP could handle Henry's GTube issues?" By 5pm we had been passed around to three doctors, and two prescription have been called in to the pharmacy. Dr. Wadie is on Emergency Medical Leave. His ex-partner flat refused to see Henry. His other ex-partner spoke to Noah, said to give Henry two medications that are unrelated to our issues. When Noah asked who we call in case something like this came up again, she said "Well I guess you could call me and I could see if I could help." Thanks.

When we needed to get a diagnosis for Henry's vision, we saw Dr. Polanski. Once at 5mo. "Come back in 3 months and we'll do some tests." We went back. "I'm going to send you to Portland at Casey Eye Institute. They have better equipment and a peds department." Dr. Carr in Portland said Henry had a 'pale' retina, but said nothing about his ability to see...
This February we were invited to a clinic, rather than do the 5 hour drive back to Casey Eye Institute. We finally have a clear understanding of how well Henry sees.
I could go on... seriously. But I won't.

We felt unimportant. We felt like Henry's health and well being are compromised. The GI doctor that Noah eventually spoke with offered no solutions, and said "Welcome to parenthood!" before she hung up. What? People say dumb stuff all the time... "Does he complain about a stomach ache?" No, he can't talk. He doesn't tell us anything.

He's quiet now.

He's 'playing' in his wheelchair.

It's snowing... We'll take a walk in it tomorrow, if the sky clears.

Hope... I'm hoping for some clarity. Peace. And I'm hoping that we can find a way to get some consistent and helpful support from the medical establishment. 

Monday, February 21, 2011

Pillow Talk

We may have a concert benefit for Henry's Heroes! I may have an opportunity to speak. I was up four times with the boys, but it was ok. Henry took a full 'dose' of formula yesterday. After venting Henry, I laid in my bed, with the pillow in a weird angle, and tried to sleep. I'm a ruminater at night. I am unskilled at shutting my brain off... but occasionally, I write a wonderful blog, in my head...

We are under the misguided impression that details, are our business. We have sat on our couches and in our arm chairs watching other peoples lives on the television, on youtube and through facebook status updates. Shame on us.

I see the results everytime we take Henry out. "What's wrong with him?" is not said every time, but the stare is unbelievably clear.
Let me say, that it is no one's business. So, as you wander through your grocery store collecting the things on your list, mind your own business. I don't saw this to be harsh. I say this because, while a little boy may be in a wheelchair, or a little girl my be on braces or a baby may be crying, the only thing we need to know about that child, is that it is loved. It is loved by many people. Every time we say something dumb, we may not hurt the unaware child, but we do hurt family and friends that love him or her. Consider that, when you leave the store, you will probably forget about that child... but the loved ones won't forget what you said, or the look on your face as your gaze lingered too long on their child.

Families raising a child with a disability want to be and do normal things. We want to go to the market and collect our breakfast, dinner and lightbulbs. We want to be able to mingle and smile with strangers. We don't want to be defensive. We want to conduct our business and get on with our day. We want the same things that everyone else does.

So, as you go through your day, and inevitably encounter someone that is different - smile. Smile at a mom pushing a wheelchair. Smile at a sister carrying a wiggly baby. Smile at a dad as he shows the oranges to his nearly blind son. Know, that they are just like you, with hopes and dreams for their loved ones.
Know that sadness and grief are a huge part of their life. Know that hard work and determination are the only things that keep them from falling apart. Know, that they are a part of your village, and deserve kindness... and that they love their children.
The rest are just details that don't matter.

Sunday, February 13, 2011

Happy Birthday Henry!

We love you!

You inspire us.

I hope that you know how much we love you, and I hope that we can find new ways of communicating our feelings to you and for you! 

May the next year be full of discovery, healing and progress!

Thursday, February 10, 2011

New treatments and therapies.

We met with Henry's speech therapist last week. We're going to table the idea of using the PODS until we're clear about his vision. Instead, we'll use his hands, left is yes and right is no. We'll ask him a question and look for that postive response that he gives with a smile, and teach him to move his left hand in response as well. His right hand is for a negative response.
"Henry, do you want to watch videos with daddy?" Henry smiles - we tap his left hand on to the palm of ours and say "Yes, you want to watch videos with daddy."
Our hope is that he'll eventually be able to use switches and some recorded options to tell us what he needs.

We met with Henry's OT this week. We're starting to slowly, 1ml at a time, introduce oral feedings. We'll see how well he tolerates it. So far, he's had a couple of tastes of Odwalla Mango.

We also went to meet Dafni at the prosthetics clinic this week. Henry finally got his braces. He needs to wear them for ten minutes at a time, twice a day for a few days, and then we build up to a half hour and then to an hour twice a day. They are meant to be used with the stander.
Jodi came for the stander this week, because another family wanted to try it out. So we may end up needing to share it with another family until ECCares can/will order another. I looked up the cost of a stander... it's staggering.
Ours is lime green.

Next week Henry meets with an eye doctor. We're hoping for some insight into his vision disabilities. We'd like a confirmation of CVI so that we can start him on a treatment plan for that too.
We see Wadie next week for a follow up on the Gtube, too. We also have an appointment for Lewis and Anastasia. Next week is going to be busy, and we need to fit a birthday party in there somewhere!

Physical therapy with Dafni starts back up in a week and half. I'm not sure how well it'll go. He's been so stressed, recovering from the Gtube surgery.

We have a meeting scheduled at the feeding clinic in March. We'll meet with a nutritionist and another OT. I'm certain that we'll only take instruction from the nutritionist...

So, as we move into the third year of Henry's life, we'll have
2 Physical therapists
and educational specialist
a neurologist
a vision specialist
an occupational therapist
an orthodics doctor
a speech therapist
and a General Practitioner...

We are lucky to have so many skilled people to assist Henry and his growth... but we need to meet some regular folk!