psalm 139. 13&14

It's Memorial Day Weekend and we have big things planned. Something special for Mitchell (more on that later). I came across this scripture and  it soothed my soul to consider this about Mitchell.
For you created my inmost being;
you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made.   psalm 139. 13&14

He's perfect to God and to me. Love you Mitchie Moo!

Young Author Night

Young Authors Night is an annual tradition at the boys' school. Luke's room theme was the rain forest. He wrote a book called, "The Shy Snake". The snake was shy until he met a man and a boy who taught him there was nothing to be afraid of. It was so sweet for whom his book was dedicated! Mitchell had a book too. His teachers helped him make a book with textured pages that Mitchell could enjoy. It was a fun night seeing the boys in their school environments. But only 4 more days to go before summer break!

Mitchell's Hands

The school year is coming to a close. And with that Mitchell's time at preschool is ending. It's been 2 great years. I'm always amazed at how the team of teachers, therapists and administrators support and engage with him. Plans for his start in kindergarten are already underway. We know who his teacher will be and most of his therapists will continue working with him.

A very special Mother's Day gift came home this week from Mitchell. It's his hand prints on a page with this poem. These past 2 years we've really gotten to know the teachers and I'm flattered they would take the time to make something so personal. They understand my heart.

Mitchell's Hands

When you look at me,

You will measure me

...by my awareness

...by my response

...by my age

...by my development

And you will find me lacking.

But for me, you are measuring

With the wrong cup.

For I have one possession

Which brims and overflows

Beyond all others.

I have my mother's love.

This cup she give me holds also her

...agony and helplessness

...waiting and hoping

...tears and pain

...aloneness and fear.

But in the end, all these are swallowed up

In the deepness of her love.

Which now, in the same moment

Both lets me go

And never lets me go.

So measure me, if you must,

But measure me too, with my cup

And you will find me

Full.

The Power of the Powerless

I am a little obsessed with this book. I found it at Half Price Books the day Luke and I left to meet Chris in San Diego for our spring break trip. You won't be surprised why it grabbed my attention when you look at the cover - the boys, particularly young Oliver on the pillow, sure do remind me of the Browning boys.

I finished it that same travel day. Maybe it wouldn't have the same effect for you as me, but gosh it portrays so much about what it's like to experience what it's like to have a son/brother like Mitchell. It's poignantly written from a brother's perspective. And remarkably the writer's perspective is overwhelming positive - he focuses more on the joys and teachings disabled people bring. He sees how God works through them giving "power to the powerless." Of course I pray for Luke to be that well adjusted, loving and Christ-centered in his understanding of Mitchell's differences.  Personally, I will read it every year for encouragement. If you want to review it more or order one, click the book cover to the left. Or I have a few copies if you'd like to have or borrow one.

Mitchell's Turn - 1st Day at Preschool

Mitchell returned to preschool today. He spent time in the piece of therapy equipment that allows him to stand. He also reacquainted and worked with 3 therapists. He was a little fussy when he returned home, tired from all the activity.

I like this picture of Mitchell in front of the school. It shows what we've been noticing a lot lately - he's looking away but his eyes seem more open more often.



Here Mitchell is with his classroom aide, Erica:



Closing in on school's start Mitchell's been very content. Aside from the eye infection, he's been healthy. He lost some weight, then gained a little making our docs happy with his growth for his height. He's also making some new sounds. He'll sound "da, da, da" at times. He also gets noticed when barking like a sea lion. "Ar, ar, ar." I have to repeat it when I hear it. It's very cute. His hand sucking continues, but he's not breaking skin and he seems to be able to keep a hold with his fingers for longer. I love when he has a good grasp on my finger, like I'm really holding his hand.

All and all, we're excited for what school will bring him this year! You can see from Erica's snuggle, he has found his way in to the teachers, aides, therapists and students' hearts!

Mitchie Moo

Mitchell is hard to keep clean so we sometimes call him Messy Moo, or often just Mitchie Moo. He drools and wipes food from his face all over with his hands. We sing to him, "Mitchie, Mitchie, Mitchie Moo, Mitchie Mitchie, I love you." Sort of to the tune of the ABC song, definitely his favorite music.

He had two appointments at Cincinnati Children's Hospital this week. First he went to see an occupational
therapist for solutions to the constant sucking and biting of his thumbs and fingers. We had hoped neoprene gloves would work, but he sucked right through them. He left with a cuff to go around his elbow to keep his arm straight and limiting his range of motion. Every time I've had it on him, he's been able to get himself out of it somehow. It's frustrating to not be able to solve this! One of his thumb knuckles has an open sore from the sucking. He doesn't like it but I often double-sock it just to try to keep it dry and clean for awhile.

Mitchell also saw his orthopaedic doctor, Dr. Tamai. X-rays were done and confirmed his right hip is still developing slightly out of socket, but there has been no change since last year. We just need to stretch his legs and practice range of motion while keeping an eye out for when it causes him pain. The doctor agreed his back is stronger and the curvature is less. I chock that up to work at school and time in the stander they have for him there.

I feel like I've been happily in la-la-land since we haven't been to too many doctor appointments with Mitchell lately. Going to these smacked me in the face with their typical non-eventful result. "He's the same, stay the course, there's nothing we can do." It brings out my impatience to say the least.

School is going to provide him with physical therapy over the summer. I didn't expect that. They are also going to let us borrow a supportive seat.

I see him using the little vision he has more. He'll look at me then look away out of the corner of his right eye. If it's quiet that will prompt a smile and his happy sound.

I focus on talking to his spirit convinced that while he can't talk to me or show recognition, I'm respecting the soul I know that is in there and acknowledging him as best I possibly can.

Mitchie, Mitchie, Mitchie Moo...oh how I do love you!

Preschool Field Trip to the Zoo

I took a few hours away from work on Wednesday to accompany Mitchell on his class field trip to the zoo. Since it was in the morning, Luke came too. It's Zoo Babies season at the Cincinnati Zoo so we saw a baby giraffe, baby penguins, baby goats, a baby owl and a baby wallaby. And so many other animals. But it was cold, cold, cold then it turned rainy so Luke was not disappointed at all having to leave in time to make it to afternoon kindergarten.

My Sweet Conductor

The boys went to their friend Walker's 3rd birthday party a couple weekends ago at EnterTRAINment Junction where it's all things trains all the time. Mitchell looked especially charming in his garb so I had to share it with you. Plus I've been having fun with my photo editing software.

Mitchie's Art

I was recently at they boys' school for a conference with Luke's teacher. While there I passed by Mitchell's room. Much to my surprise there was artwork made by Mitchell included on the board outside. His is the purple one in the top middle. I'm sure he got help, but I was so proud! Luke had his writing displayed outside his own room and that looked wonderful too!

Mitchell's Music Hour

"Mitchell's Music Hour" to celebrate his 4th birthday (March 15) was an incredible success! It was the perfect celebration for Mitchell and Music Mae did not disappoint. Our friends' children plus Mitchell's classmates were in attendance. After making tambourines out of paper plates, Mae entertained and kept attention during classic sing-a-longs. I think everyone enjoyed seeing Mitchell at his most engaged during the singing and it was also nice to see how his fellow preschoolers interact with him. A well-orchestrated music hour indeed!

Mitchell's Birthday - 1 Week Away

I have been busy planning Mitchell's 4th - yes, 4th - birthday party! We are hosting a Music Hour this Saturday on his behalf that will feature the very popular Music Mae who sings and plays guitar and the ukulele for the children at our church. Music plus cake, no gifts and hopefully a sweet time for Mitchell to receive love and give back to his terrific classmates and other friends.   


4 months pre-op

  Mitchell's birthday has gotten me quite nostalgic. It seems each year we've found just the right way to mark the passing of the year.


When he turned 1, we were in a daze. Mitchell's first year was more than hard. It was intense, emotional, frustrating and fearful. From birth he was deemed failure to thrive only 10 pounds at 10 weeks. He wouldn't eat and cried a lot. "Just our luck" we said, "Two kids with Colic." I shake my head at myself reflecting on my disappointment with his being born with inward pointing toes we had to stretch every diaper change. I know now that was the very least of our concerns. Heart surgery to repair the artery formed wrong that wrapped around his aorta and esophagus at 4 months, we thought all Mitchell's problems were solved. After a little therapy to catch up developmentally, we'd have a normal child. But by his first birthday we had no diagnosis, and when one of the many doctors we saw that first year labeled us "special needs parents", deep down we knew we were. 



We marked his birthday celebrating his life inviting our closest friends over on his birthday to pray for him. My parents who have witnessed healing miracles addressed the gathering. My dad told of his own inoperable ulcer having been healed. I was healed some myself that night. I let go of guilt that I did something wrong and the notion that the doctors must have made a mistake following his heart operation.

 

2nd birthday

 Still no diagnosis at Mitchell's 2nd birthday. Chris provided more lighthearted inspiration for a celebration. His idea was to treat Mitchell like a typical toddler and give him the birthday party we would have given for him had everything been normal.



So that's what we did. A Superman themed party for our super boy. After all at the 2 mark he proved heroic tolerating up to 17 hours of therapy a week, test after test and special diets. 

During Mitchell's 2nd year, we took him to see a pediatric neurology specialist at the Cleveland Clinic. After this doctor's prescribed spinal tap, we finally received a "probable" diagnosis for Mitchell...brain fluid indicated Mitochondrial Disease the culprit. This news came December 2009, just 3 months before his 3rd birthday and right around the time seizures started.



Mitchell didn't sleep much. Our nerves were raw. We met with Mitchell's neurologist in Cincinnati without Mitchell there for some needed counseling. We begged for the right cocktail to bring rest to Mitchell as well as us. During this period, we once again turned to friends to help mark Mitchell's birthday. A smaller group this time we wanted encouragement for stamina. I recall using the analogy of caring for Mitchell being like a marathon and we needed to be handed a water bottle at his 3rd mile marker to keep going. How lucky we are to have friends who listen.



Here we are at Mitchell's 4th birthday. Things aren't perfect. Mitchell still is teaching us things like patience, giving up control, being able to receive help from others and more. I am very excited for his birthday Music Hour. And to wish him another great year surrounded by acceptance, love, peace and rest.

Seems like I've already started celebrating him now!

1st birthday

Thumbs Up

We are hoping these thumb guards work at allowing Mitchell's broken skin to heal. The glove and bandages weren't working at all. I know Mitchell has a high pain tolerance, but geesh. Our sitter called her kids' dentist and found out the office keeps these in stock. We're to keep them on 24/7 until he heals and can put them on whenever thereafter. He doesn't seem to mind them, they are actually pretty soft - a little sturdier than the plastic of a bottle's nipple. Anyway, I hope this solution works and we can give them a big THUMBS UP!

Ouch!

Mitchell has become an avid thumb sucker. The therapists at school actually think this is a good thing because it shows coordination. But ouch! He sucks and sucks and sucks - getting calloused and recently breaking skin.

Half the time he's home I've begun to have him wear gloves. He doesn't like that one bit. Band aids don't work and we're trying to get him instead to take a pacifier. I have come across another Mito kid who is around Mitchell's age and she has the same problem. I'm hoping this phase passes quickly!

A Weighty Matter

Mitchie is growing! He weighed in yesterday at 31 pounds - which calculates to be the 11th percentile for weight. He had been below the chart for the past 2 years. We just weeded outgrown clothes for the first time too in 2 years. It seemed he would never get out of 18 month - 2 year size clothes. He's in 3T and even some of Luke's old 4T shirts.

All this means eating has gone better. He still has a limited diet of mostly stage 3 baby food and oatmeal, supplemented by Pediasure to round out his nutrition. There are still times when you just can't get him to eat, but they happen less. We are so glad we resisted getting him a feeding tube!

Admittedly with weight comes increased difficulty. A non-ambulatory, totally reliant child who gets heavier and heavier has some downsides - like Mommy huffing and puffing when carrying him up 2 flights of stairs. And, we'll mourn when he outgrows the hanging jumper he's in a lot! But an appetite and growing is oh so normal. Yay Mitchell!

New Equipment for Mitchie

We got Mitchell's birthday presents early - he turns 4 next month! I networked with a mom we met through the Cincinnati Association for the Blind and Visually Impaired and bought a couple pieces of her used therapy equipment her son Noah has already grown out of. We can't thank this family enough! Each item retails for around $2,500 and buying it second have saves us the hassle of insurance and lots of money.


The first item is a new gait trainer - a purple Pony. Mitchell grew out of his first one which is a size 0. This one is a size 2 and just a wee bit big for him, but his feet touch the ground and he'll grow into it soon enough. We are exited to see him cruise our hardwood floors again!

The 2nd piece of equipment is a transitional stander. Mitchell can be seated in it, then move to standing position. This helps him bear weight on his feet and legs. He spends a lot of time at school in a stander and we know it's also helped his upper body strength. Mitchell fits in this new-to-us stander quite well in the sitting position, but we still have to tweak it to make it work for him standing.

This equipment is in great condition and will be great for Mitchell!

Mitchell's Amazing Preschool Class

We love, love, love the experience Mitchell gets in his preschool class Monday through Thursday mornings every week. At school he receives PT, OT, speech therapy and has a dedicated aide while in the classroom. He has a wonderful teacher named Mrs. Ellis and great equipment for seating and therapies. This year everyone at school has worked on and now notices Mitchell's upper body strength improving. We only pray that school continues as remarkable.

The best thing though about Mitchell's preschool experience is that the other children really receive him. He really connects with them during circle/song time. We can be out and about in our little 'burb and be met by one of the kids running up to Mitchell, holding his hands and singing to him - usually his favorite, the ABC song. Two girls in the class send him home notes and drawings and tell the teachers they wish Mitchell could come stay the day with them.

Today marked the 2nd birthday party for a classmate Mitchell's been invited to. The first time I promptly declined, only to be faced with direction "he must come" after all this classmate has an older brother with special developmental concerns. I more easily accepted for Mitchell this 2nd time already knowing how many of the parents see how Mitchell gives to his class just as he takes through his unique, nonverbal participation.

Today's party for Ben was held at the gym fun center at which Luke happens to take swimming lessons. The party guides and parents took extra effort to include Mitchell. Frankly I got quite a work out being Mitchell's arm and legs as he bounced and slid on the gymnastics equipment! Ben's mom was so kind to give Mitchell a favor selected just for him - a tactile toy she thought he'd be able to play with.

What else can I say? Can you see why I call his class AMAZING?!

(Mitchell is enjoying time before cake and presents at the table with classmates. He's in his chair, smiling, wearing a blue sweater.)

Mitchell's Latest Sleep Study/EEG

A couple weeks ago, Mitchell stayed the night at Children's Hospital for a 24 hour sleep study during which they monitored his seizure activity. He had been trending to have more of them and they mostly interrupt sleep. Boo!

The medicine he takes for seizures (Depakote) is at the proper level in his system so his neurologist is taking it slow in making any change.

We are to evaluate with a nutritionist whether to put him on a ketogenic diet which consists mostly of fat. He'd have to start on the diet in the hospital if we go that route. No word yet, but inexplicably after the study, he started sleeping better and having less visible and lengthy seizures. Go figure!

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!

Updates

So many of you have asked about our lack of sleep so I wanted to give an update. We have figured out that Mitchell has been getting up because the medicine he takes is no longer controlling his seizures. He will have a blood test first thing tomorrow to check blood levels and by afternoon we'll have the doc's decision on whether we can give a higher dosage of his current medicine (Depakote) or add another seizure medication. I keep thinking...one more night! We hope.

Also today the process of transitioning to receive services from the county to our school district continued with a consultation with the city's elementary PT, OT and speech therapists. Mitchell put on a good show demonstrating some cause and effect skills. Early March we'll be presented with findings and a recommended IEP (Individualized Education Plan). I have my fingers crossed services offered will be ample!

In Search of Sleep

I've been trying to stay in my happy! happy! joy! joy! frame of mind, but it's so hard when you are not getting a full night's rest. Mitchell has once again gone back to getting up during the night. It's a little different this time around. He wakes with loud cries only 2-3 hours after going down to bed for the night and once he's up, he's up. In fact, when you try to put him down, he just cries and cries. Last night Chris and I split 4 hours of late pm/early am up time. Once your own sleep routine is off, it makes it hard to go back to sleep after being up yourself! So last night I think I finally dozed off around 3:15 am having been awakened at 11:15 pm. Even Luke's sleep has gotten disrupted.

Mitchell seems to be having increased seizures at night. I'm calling the neurologist Monday to see if that might be the cause. Maybe M's seizure med dosage needs changing again. Because good news...Mitchell seems to have gained a pound an a half. Hooray! Still low weight, we are trying to keep him on the growth curve trying to avoid or postpone a feeding tube. (A whole other story!) He is 25.5 pounds.

Mitchell had his annual orthopaedic appointment this week. Overall, not much change. Generally, without being able to sit, stand or walk, his bones aren't developing normally. His scoliosis persists and his hips continue to be out of alignment. We're to work on his flexibility to avoid a hip being dislocated which could prompt pain, surgery or letting him live that way. We might arrange M going to typical PT again, but will see with a PT/OT consult with our school system this week. Maybe when Mitchell turns 3, that's something they'll provide.

Per usual, we pray for sleep and Mitchell's wellbeing.