Special People

I found an interesting website. Now why didn’t I think of doing something like this? www.specialpeoplenormalworld.com Maybe a segment from a spokeswoman on location in Cincinnati is in order?

Letters to Mitchell

reflecting on pregnancy
Mitchell,
I prayed for you throughout the pregnancy - that you would be healthy, happy and whoever God has destined you to be. But I also prayed that you fit gracefully into our family (especially because your brother had colic until 5 months!) During the ultrasounds, you didn't show too much of yourself, but tears of joy came early seeing you as you grew.
Love,
Mommy

on naming you
Mitchell,
We like how strong "Mitch Browning" sounds. In fact, whenever we'd tell someone we planned to call you that, each time the reply would be positive. Many surprisingly said things like, "sounds like a quarterback" or "sounds like a senator". Time will tell if those words are prophetic! Truth be told, Daddy chose your 1st name. How nice I loved the name too and put it together with your Uncle Craig's name.
Love,
Mommy

2 weeks old
Mitchell,
You are a gift. I knew after Luke was born that our family was not complete. Then you were born. No matter what you do in life, know that from the start we knew you were special and blessed by God with great talents. So little today, our hearts are enlarged by the joy we have now. We love you.
Love,
Mommy

2 months old
Mitchell,
At almost 2 months, you are a joy. You are getting up 1 time in the night - but getting you to sleep can take awhile. You have 6 bottles every day. You often grab at your mom's shirt - so tightly it's hard to pry off your hand. You do have acid reflux and take Zantac - it seems to help and lately no arching your back and crying when you eat. We think you'll outgrow this quickly! Your toes point in a bit. We exercise them every day. Daddy thinks we might have a sprinter in our future. No matter, you'll grow out of it and regardless, you are loved just the same.
Love,
Mommy

3 months old
Mitchell,
Right after your 2 month check up, your doctor had us take you to see specialists. You had not grown much and had very noisy breathing. We found out you needed more medicine for your acid reflux (Prevacid) and that you had an underdeveloped larynx. At a follow up appointment, you turned blue in the pediatrician's office. That along with an upper GI test finding you had an artery pressing into your esophagus, caused you to be admitted to Cincinnati Children's Hospital. You had corrective heart surgery on June 4, 2007. The surgery went perfectly. Seeing you in pain afterwards was THE HARDEST THING I've ever been through. But in a couple days, you started to improve. We notice already differences in your breathing and hope you gain more weight soon!
Love,
Mommy

6 months old
Mitchell,
You are now 6 months old. You've taken us on an interesting adventure so far. You are not quite where a typical 6 month old should be. Following surgery to correct your right aortic arch with left ligamentum (vascular ring), you've continued to be quite fussy. Your acid reflux continues and your eyesight has been delayed. You have torticollis (wry neck) and increased tone so you see a physical therapist weekly. We've had you evaluated by genetic specialist and neurology and so far all tests come back normal. While I want you to understand where you've been, I have faith we'll look back on this all with disbelief. I love to think of your future. You are a very handsome boy with an adorable smile and beautiful eyes and lashes. We love you so much!
Love,
Mommy

9 months old
Mitchell,
Your brother Luke gave you the nickname "Mitchie". I love calling you that. You are 9 months old now. I wish I could say that all your health issues are behind us, but you still have a way to go. You are progressing though. You smile a lot and we echo sounds. You do a lot with your hands - like suck on your thumb and reach for toys occasionally. You spend tons of time on your tummy to help your neck and build strength. You'll have a 2nd MRI in January and we'll go from there. All that said, your Daddy and I love you a great deal. In fact, no matter what the future brings, you are special to us. You have a gentle, lovable nature that just makes you want to snuggle with you. This run takes stamina and we draw our hope and faith from God. He's already answered many of our prayers for you. He's also found ways to encourage us like through the gift of Michelle Emanuel, your occupational therapist. Always remember you are loved...by us, by God, by both sets of grandparents, by Luke and so many others.
Love,
Mommy

2 years old
Mitchell,
You are one busy fellow. You see many therapists during the week, plus join Luke in doing so many things during the week like going to the zoo, the Children's Museum, parks and more. At 2 years old, you do not yet sit, stand or talk. But, we get so excited thinking about what you can do! You roll from back to front now, eat thicker foods and have a lot less breath holding episodes. After 2 years and countless appointments, we finally received somewhat of a diagnosis for you. You have a probable mitochondrial disorder that means your body does not process energy quite right. I cannot tell you it's been an easy road to accepting the book of life you are writing for yourself. It is not exactly the one we'd choose to read if we had a choice. However, we've gotten to the chapter where we are starting to accept a "new normal". We are so grateful you are part of our story! Your brother is so deliberate in making you feel included. You help all of us put so many things in perspective. Of course, we still pray that your abilities will continue to develop. But we realize more and more that you are a gift we are only beginning to learn from. Love you little man!
Love,
Mommy

More Luke-isms

Luke is a maturing preschool boy and therefore has determined that certain are words are worth giggling about. We practice rhyming sometimes and it soon degenerates into Luke rhyming something with “poopy”. Thing is Luke also thinks “trash can” is somehow an inappropriate expression. I can’t help but bust out laughing myself when he says “trash can” the same way he might say “pee”, "bottom" or “butt” - in a way that makes him sound like he is getting away with something.

On our way out of church on Sundays Luke pokes his head in the chapel as he knows it’s where Mitchell’s baptism ceremony was held. This past Sunday he got up on the altar behind the microphone there and told me to sit down in a pew. The he announced, “Ladies and Gentleman, children of all ages…introducing mommy the great.” Be still my heart! I don’t know if I was more excited he called me “the great” or that he was demonstrating early emceeing abilities!

CABVI Playgroup

The week is still full of therapy and other appointments. We're fortunate Katie is open to all of them and that helps a ton. One place on the docket that does a phenomenal job is Cincinnati's Association for the Blind and Visually Impaired. Their early intervention folks regularly come to the home and the host playgroups as well. Here is the set up for one held this past Friday.

Mitchell took a quick catnap (doesn't he look so big on the couch?!),

then enjoyed some vestibular input in the swing which for him works to stimulate his vision. After Mitchell swings side to side for a little bit, you will notice nystagmus - a sign that he is actually using his vision.

Actually, our vision therapist Anna and the Association's music therapist (Paula, a very intelligent and accomplished woman, mom to grown twin boys and blind herself), visited our home this week too and documented the following helpful report:

MUSIC USED: Five Green and Speckled Frogs, ABC's, Itsy Bitsy Spider, Muffin Man, other preschool music
INSTRUMENTS USED: dulcimer, Remo tambourine, circle drum, small tambourine, cage bell
MUSIC AND/OR INSTRUMENTS PREFERRED: he seemed to attend to the dulcimer, tambourine, and cage bell
COMMUNICATION AND SOCIAL SKILLS: smiles, regards faces, does some vocalizing
FINE AND GROSS MOTOR SKILLS: hands are open. He doesn't grasp instruments independently.
DEVELOPMENTAL MILESTONES: sits with support
OTHER COMMENTS: We started the session with him on my lap. He is very responsive to all music and, given adequate time, touched the dulcimer and the tambourine. Anna Ruhmkorff was able to observe how Mitchell used his vision while we played music. Anna pointed out those sometimes brief and sometimes longer fixations as they occurred. He prefers to look to the left and generally plays using his left hand. He often puts his right hand near or in his mouth. Luke took an active part in the last half of the session, singing and playing instruments and suggesting songs we might sing together. He is most welcome to join our music sessions. Toddlers like to watch older siblings.
POSSIBLE THERAPEUTIC GOALS AND PLAN: Music motivates and interests Mitchell and I think he'll work hard to actively play music (touching, tapping or shaking an instrument). I'd like to work on encouraging Mitchell to touch, then grasp and finally hold instruments intentionally. I'll make approximately 5 more monthly visits while Anna is on leave.

Right now we're in a flurry of planning, trying to arrange a manageable summer and fall schedule for both Mitchell and Luke. The Pearlman Center at Childrens can get Mitchell into a 1-day a week class that does require a caregiver present. Should we do that and miss out on Conductive for awhile or do we do some intense time at Conductive and wait to start Pearlman until the fall? What actually will be the Pearlman fall schedule so we can feel good about Luke's preschool enrollment which I've already been fortunate enough to switch once? I'm sure we'll figure it out!

Luke & Casey

(Casey is our friends' pooch. Luke loves him! No dog for us...yet!)

In Print

Made a book of the first year of blog posts. It arrived on Saturday and made us feel very accomplished. For me, it's easier than scrap booking and we'll have so much detail to look back on about this time in our lives. If you are interested in creating your own book, check out http://www.blurb.com/.

It's Browning

Ever wonder why our blog address includes "itsbrowning"

Chris loves to grill. My mom gave Chris a chef's hat and apron one Christmas. Embroidered on the apron is "It's Browning on the Grill". Pretty clever. Once we get into grill season, I'll be sure to take a picture of Chris in his garb and post it.

The Rain in Spain

Life's been reminiscent of the one of my favorite movies, "My Fair Lady" around here lately on the heels of having Luke's speech evaluated and trying to get him to pronounce certain letters correctly. "Say K", "Cat", "Say Ka, Ka, Ka". Luke's repeats add a "t" to the mix. He says his name more like "Lute" for instance.

His preschool teacher suggested the eval back in October and frankly I couldn't have brushed it off more. Why? Luke's a pretty smart kid and clearly we're familiar with developmental issues. Yet, as the evaluation results showed he's ahead in expressive language and how he uses language overall making me think he'll be ready for school early (August birthday). Likely best if we officially get him where he should be in the articulation department.

I guess I thought kids develop at all speeds and that it would take care of itself. Meanwhile, the speech evaluator told me, "If your other son were normal, perhaps you'd be more concerned about this." Ouch! Yep, we are now on the waiting list for a time slot at Children's for speech therapy that coincides with one of M's appointments.

Easter 2009

Ortho Appointment

This week has been a blur of work, appointments, Easter prep and calls to our insurance company. Found out the wheelchair costs upwards of $7,000!!!! Insurance will cover $4,000 of that. Yikes! Felt justified in cancelling a therapy appointment for today - just too much this week.

Yesterday, Mitchell had a good appointment with his orthopaedist. He's seen Dr. Tamai since he was a about 9 months old. He praised Mitchell for seeming more sturdy and healthier looking. He also observed Mitchell to know more about his surroundings than we might think. He confirmed Mitchell's scoliosis (17%) and tightness in his right hip & leg. Although the right leg is "uncovered by 30%" (still a huh?), the hip is not out of socket. He said he's young and the most important thing we can do is to keep it loose through stretching and massage. Hopefully he'll continue developing helping matters or we are able to keep it limber to stave off surgery. He also gave us a script for new orthotics. A good thing because the ones Mitchell got about a year ago never really did fit quite right. We are to do x-rays and see him annually to check in on everything. We'll continue taking him to Dr. Paul's - our very valued chiropractor - too.

While Mitchell and I were at the doctor's, Luke hung out with Grandma Kay and Pop Pop outside for a couple hours helping them rake and clean up the yard. He learned "timber" when Pop Pop trimmed some trees. He blew bubbles all around. It was such a nice day, but Luke sure was tuckered out when I picked him up telling me everything he did, saying, "Phew, that was hard work."

Mitchell Speaks

In the wake of the “probable” mitochondrial diagnosis for Mitchell, I've found myself kind of down. There could be another stone overturned, but for now this is the umbrella Mitchell falls under and there is no cure. No cure. Hope has taken a hit. Even though he continues to improve. Wallowing in my self-pity (boy, I do have a flair for the dramatic sometimes), I came across this writing. I've read it a few times now and it makes me feel a little better imagining Mitchell speaking these words to me. Encouraging me along the path of learning life's greatest lessons. It makes me reflect that I practice speaking to his soul. Maybe I'll start listening more to how he non traditionally "speaks" to mine.

To all of those who love little Mitchell...

"I am the child who cannot talk.You often pity me, I see it in your eyes.You wonder how much I am aware of -- I see that as well. I am aware of much, whether you are happy or sad or fearful, patient or impatient, full of love and desire or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs or comments about the world about me. I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers.

I am the child who cannot talk. I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself.

Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness.

I am the child who cannot walk. I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strife and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity.

I am the child who is mentally impaired. I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith.

I am the disabled child."
~(Author Unknown)~

Good Searching

Set www.goodsearch.com as your browser’s default page. Select the charity you want your internet searching to benefit. (I’ve recently made mine UMDF – United Mitochondrial Disorders Foundation.) Use it as your search tool. It uses Yahoo’s engine. A lot of people prefer Google. I start with GoodSearch then if I don’t see what I want, move to Google. Check in on how much is being raised each month by your and others’ searching and shopping.

It takes a bunch of surfing by a bunch of people to add up, but it all counts.