Bye for Now

I have decided to take a break from blogging. It's true I enjoy it, but I've also recently realized that I can kind of hide behind it. With my regular updating, everyone knows what we Brownings are up to, so I've been less prone to reach out to others for more in-person and on the phone sharing. I feel a little disconnected from some very important people in our lives. I sure hope this makes sense!

But before I sign off, I can't help but share some pics from Mitchell's 3rd birthday and first day of preschool. Big events that seem to make this goodbye feel more like a beginning.

When we dropped off Mitchie at preschool, the therapists and teachers went crazy! They were so excited and prepared for him. They took more pictures and video than I did! And, I got a lengthy report of positive progress after only the first day. I already know he is in such capable and caring hands. Here he is with his classroom aide, Jennifer:

Last but not least, another highlight I wanted to share is our 7th year wedding anniversary celebration. We took off for one night in Louisville staying at the artistic 21c Museum Hotel. Very cool. Given what our church and small group is studying, this was a very appropriate backdrop:

I guess for now we're looking to be a little more free of all the fear and worry that surrounds the management of Mitchell which this blog just emphasizes - not to mention the typical stuff that surrounds an average 4 year old. (Shucks, who am I kidding...our Luke is far from average!)

Keep in mind, I may pick blogging back up at some point. In the interim, feel free to reach out to us by phone or email.

Love to you all and remember...we'll always have facebook ;-)

Tying up Loose Ends

I’ve left some things open ended over the past few months. I’m excited to be reaching closure on some of them. In fact, I didn’t realize until today how not having clarity in these areas has been causing stress. First...

Luke is going to start kindergarten!

After touring other preschools for Luke to attend, many Montessori environments, all of a sudden the “mom voice” everyone told me about started shouting “he’s ready.” He has a great memory, picks things up quickly and as he current preschool teacher says, he already has the maturity of a kindergartner. This has been a hard decision because “the world” tells you to “red shirt” your child with a summer birthday. But it’s so hard to make plans based on future potential impacts. Like Luke being the last to drive of his friends. But I can't imagine him waiting another almost 18 months to start school given where he is at today.

Mitchell is starting preschool!

As mentioned before, we have been following instruction on how to transition Mitchell from Ohio early intervention services to our city’s elementary school. The goal of the process has been to have an Individualized Education Plan (I.E.P.) which outlines services Mitchell will be provided by the time he turns 3 years old. The process has not been easy! It’s a negotiation with legal protection for FAPE (free and appropriate education), but no specification on minimum hours delivered. Over 3 meetings, the school got to know Mitchell. 2 meetings included Mitchell being evaluated by therapists and teachers. The other included a lengthy survey of me on Mitchell’s medical history.

It took 2 more meetings to reach an agreement. Knowing it was a negotiation – my demand for services for Mitchell likely would outweigh the school system’s resources needed to provide them – I set my baseline at the hours of preschool we sent Luke to when he was Mitchell’s age (5 ½ hours per week.) Why not more? Well, I’m realistic about Mitchell’s tolerance for attending school. I knew I’d leave thrilled if they offered 6 hours a week.

The school’s first draft offered 2 hours of services per week. Boo! I told the administrator that seemed the very minimal they could offer. So back to the drawing board. At the 5th and final meeting, it was decided Mitchell would go to AM preschool 2 days a week. He'll have his own aide so he'll be able to participate in art, music and play type activities and will be taken out of the typical class for one on one physical, occupational and speech therapy. I am so happy with this because his experience is going to be customized, but similar at the same time to what a normal child would have. We're planning on him continuing at the Conductive Learning Center one day a week too.

There's one more major open ended question we haven't reached conclusion on and that is whether to have Mitchell be fitted with a feeding tube. We have resisted, but feeding him is more difficult lately. We've been getting input from others and plan on re-meeting with a couple of his doctors to work on figuring this out.

Here is a silly photo site I had some fun with. More at: www.photofunia.com
Very cool for Luke to see Daddy in Star Wars garb!

Mitchie Close Up

I always post the very best pictures of Mitchie. This afternoon I just started snapping shots of him, drooling, eye rolling and with a dirty shirt and all. I'm actually moved by the finished product. These really are the many faces of Mitchie. I'm also struck by resemblances to Luke. Love this guy!

Mitochondria are the Powerhouse of the Cell and other Fun Mito Facts

Today I went to work for a couple meetings, then took off for a 2 hour "Grand Rounds" session in nearby Louisville put on the UMDF - United Mitochondrial Foundation. The purpose of such sessions is for education to come to the those affected on a more regional basis since not everyone is close to a center of speciality. Speaking first was the Executive Director of UMDF, Charles Mohan, whose daughter was lost to a Mito diagnosis. Then the renown Dr. Cohen of the Cleveland Clinic spoke. It is his partner we've seen at the Clinic ourselves.

What were the takeaways? Aside from getting a biology refresh on how our bodies produce energy, best practices for "treating" the diagnosis were discussed. There is no cure, no 2 mito patients seem the same and the supplements often prescribed often only make a difference in a minority of cases. So avoidance of triggers were covered. "Stresses" on mito patients that exacerbate weakness and possible regression were covered include sleep disruption, heat, sickness and starvation. There were other parents there who told stories of sleep problems to which the doctor said sometimes it's as simple as the child needing to eat during the night. Good to know! Dr. Cohen recommends not only adequate hydration for Mito patients, but over hydration. He cited up to 2 liters a day of water for an adult.

In the research area a lot of time was spent on instructing us on how to lobby government officials to get a bigger piece of the NIH budget spent on Mito research and how genetic testing is improving all the time, but until then, without more commonalities in diagnoses, the chance at a cures needs more time. I didn't realize the importance of building awareness of Mito before the session. Many people go undiagnosed. And everyone's mitochondria lose steam as we age. Definitely glad I went!

Letters to God, a Movie

This one looks like a tear jerker! Inspired by a true story, it's about an 8 yr old boy who is battling cancer and writes letters, or prayers, to God. Prayers for him and those around him. Movie's not out yet, but made me pause to ponder what our sweet Mitchell would say to God if he could.
The Movie - Letters to God, a Possibility Pictures Production

End the Use of the R-Word

A movement to end the use of the r-word has been gaining momentum and today marks a national reminder for permanently ending the use of the word. I can relate. I recall having a terrible feeling I got when Mitchell was only 5 months old and an acquaintance commented on him saying, "I'm not going to lie to you...I think he's retarded." What an ignorant thing to say and an awful label to put on anyone.
R-word.org - Change the conversation...

The Love Contest

When I got home today Luke told me we were going to be in a "Love Contest." What oh what did that mean? I had to ask. He said our presentation would be first. He and Daddy would be behind the curtain and I was to talk about our home and our love. He said he knew "the Browning family is going to win."

He said he used to dream about this when he was a baby, which probably means he thought it up today.

I've already won knowing Luke understands the strength of our family's love.

Finding the American Heart - ABC News

Finding the American Heart - ABC News

Mitchell is still going the The Conductive Learning Center. He attends for 3 1/2 hours two days a week. We were called tonight to let us know the school was being featured on national news. Here is a limnk to the clip. We love the school and are so happy everyone there loves Mitchell.

As Mitchell turns 3, we start becoming eligible for services through our local school district. There have been evaluations and such and we meet Wednesday with administrators to hear what they can provide Mitchell. It's possible Mitchell will be able to attend both the public preschool and continue at Conductive for the rest of this school year. We'll see!