Working Out

Luke is a good influence. He encourages us to do exercises together. He always wants to start with push ups. I was getting away with the half-way kind where you just push up your upper body - Sunday he showed me how I should be moving my bottom too. Good thing he only does 5 reps. He also likes stretches, sit ups and jumping jacks. I cracked up yesterday when he told me, "Watch me close. This one's a little tricky." He then somersaulted and cartwheeled like a guy on one of his shows (Sportacus) does. It was tricky indeed! I told him in my younger days I cartwheeled and did the splits just like that :-)

What’s up with Mitchell’s Skin Tone?

People often say Mitchell has beautiful skin, but if you are around him a lot you start to wonder why it seems darker and different from ours. Actually, his skin can get quite orange-ish. Our OT even pointed out the coloring comes and goes, getting brighter around his nose and between his fingers sometimes. Fearing it signaled a liver or renal issue, I asked the neurologist about this when we saw him.

Liver testing had already been done and it’s normal. Instead he says they see this from time to time when some sort of metabolic issue is present. He said awhile back researchers thought there was more to this. Not so much now. A harmless situation. Sure is nice when we have an opportunity to have closure on one of Mitchie’s medical mysteries!

On to Something? Neurology Update

Sick as a dog having been down with the stomach flu, I was not about to miss our follow up appointment with Mitchell’s neurologist. I barely made it there but Chris met me and Luke came too.

We are still crazy about Dr. DeGrauw. He showed us comparisons over time of Mitchell’s MRIs and results of additional testing done. He still leans towards Mitchell's issues being chemically based. Meaning somehow Mitchell doesn't metabolize something quite right. I took copious notes as he detailed out how the body creates energy from glucose through the mitochondria. He sees dysfunction with how Mitchell creates complex I. While a test shows that, outcomes aren't classic for a mitochondrial disorder because they do not show increased pyruvate or lactate, so he would say that Mitchell’s diagnosis is “probable mitochondrial disease.” He stated with a mito issue, a third of children stay the same, a third improve over time and a third regress. He has tens of kids on his caseload with a complex I deficiency and he said they all look different. I've started researching www.umdf.org to find out more.

There’s no cure, but some people with these issues benefit by taking CoQ10 in a pretty high dose. I’ll order it online then start giving it to him. After 30 days we are to take Mitchell in for a blood test to check absorption. Surely, we’ll be watching for any changes in Mitchell. Doc said not every child shows result, but some do including improved functioning of head control, hearing, vision (wouldn’t that be great!) and muscle strength.

He said to wait on additional testing right now as it wouldn't change the recommended treatment. The door is still open that it could be something else. If the supplement doesn't make a difference, we may then be asked to change his diet or take other supplements. We'll see.

Our ask….prayer has worked. When everyone has prayed for something specific, later it’s been remedied. Like white matter. Now all our prayer warriors out there need to pray for Mitchell to process energy correctly, especially the creation of complex I and meanwhile his taking of CoQ10 brings remarkable results.

Thanks and love to you all!

Contradiction

I’ve been noticing lately I’m seeing the world around me inconsistently. There’s a struggle between business-minded Stacey and special-needs child mom Stacey. In fact, a couple statements have already left my mouth that signal I’ve not fully integrated having a disabled child. I don’t want to wear it on my sleeve, but fear I may inadvertently come off insensitive. Examples…

I surprised myself by being defensive when a friend talked about her son playing in a basketball league in which every child gets playtime and “it’s not about winning.” Huh? Not about winning? You don’t always get play time and win in the real world. When I grew up there were tryouts and kids got cut from teams. Why didn’t I immediately think about someday Mitchell would only stand a chance of playing in such a league?

Prior to having Mitchell, I attended a weekend of diversity training for an association I was part of. We were encouraged to incorporate people of all races and disabilities into the projects we were planning. I remember thinking plopping a wheelchair in here and there was so obvious. Now when I read certain children’s books I am thrilled to see a child with a chair because I can say to Luke, “Look, just like Mitchell.”

I can get really heated when I hear about certain social programs being desired or proposed from the government. I know people need help and I want them to get it. I’d prefer they get help some through other means as government spending is not a panacea. But, I’ve met many U.S. families online with kids like Mitchell who are not in a good place trying to provide for their children’s medical needs. (Should I mention families in Canada and overseas who have nationalized health care complain that while they can get an MRI for their child, they have to wait up to 8 months to do so?!) Why do I not put together that we receive help through a government agency for Mitchell? We have a social worker from MRDD. We’ve even filled out financial assistance requests and Medicaid forms for Mitchell for his long term care.

I’ve been kind of intrigued about the blind guy on American Idol. I’ve never voted but considered doing so for him. Isn’t it cool that all the visually impaired people of the world feel included because of him? Guess what. I don’t think he’s the best singer on the show.

Mitchell is only 2 but already I see that throughout his life, this momma bear will be angered by him not getting the special treatment he deserves and wanting him to be included, treated just like others.

I guess I’m in a period of transition with the good thing being I’m aware of these discrepancies. I’m not used to having such contradictions in my views. I’ll just chalk it up to another area Mitchell is transforming me into being more open minded and a better person.

Guest Columnists

I've been surprised that a handful of people have remarked that Mitchell has impacted their life or given them a new outlook on their spiritual relationship. I asked them if they were interested in writing an article on this for the blog. Here are a couple I received:

From Laurie, Chris' sister...
I have a picture that hangs on a wall in my office. It is a painting of a city at dusk, some of the elements are very clear, like the lamppost and the balcony on the outskirts but the middle is a blur of lights with only outlines of buildings at best. I love this picture because I use it as a constant reminder of how little of life I truly understand or have a clear picture of. When I think of Mitchell, this little boy of two, there is so much I truly don’t understand. By all accounts, if you used just his medical records to assess him he should be more progressed then he is, yet, he isn’t doing any activities of a normal two year old. I turn to God to help me make sense of it all or to help get a clearer picture. So, in conversations with Him, after I have asked all the usual questions, such as the whys and the whens I come to the bigger picture, what is God telling us through Mitchell? I asked this because God has purpose in everything and therefore Mitchell has purpose. It is then that it hits me, the picture becomes a little clearer, Mitchell has brought me to God and even though I don’t get the answers to the whys and the whens that I so desperately want I do get to be in conversation with Mitchell’s creator and my creator and isn’t that what God wants for all us, to bring people to Him?

From Grandma Kay...
A preacher set out four large canisters on the altar. Filled one with smoke, one with alcohol, one with chocolate and one with good soil. He then put a live worm in each canister. The worms in the alcohol, smoke and chocolate died. The worm in the good soil lived. The preacher asked his congregation if they knew what the story meant.

A woman eagerly stood up and said, "I know, it means if we smoke, drink alcohol and eat chocolate we won't get worms."

Now we all know that is not what the preacher was trying to say but does show that we all perceive things differently and often miss true meanings. We see through a glass darkly. Mitchie is here to glorify God as we all are. However I'm convinced Mitch is doing a much better job than I am. Mitchie has already touched lives. I am so blessed when I read Stacey's blog. Your comments move me and encourage her. I have hopes that as we have seen Mitch change over the past two years that God is healing him and in a year we will all be astounded.

Kids Club Heroes

Shelley - pictured with Mitchie when he was still awake - sent these charmers to me of his 5-8 mo old room birthday party.

Two at Last

(Might want to stop streaming music at bottom of page before viewing.)

Make video montages at www.OneTrueMedia.com

Mitchie turned 2 yesterday. As suspected, it was an emotional day. We worked around the house, then headed to church. While we go into the service, the boys go to "Kids' Club" or Sunday school. Mitchell's been in the 5-8 month old room since he was 5 months old. That's where he is developmentally at best. The women who watch him there include his OT, a couple of nurses and a respitory therapist! We love that. They notice every little different thing Mitchell does. Their care and words of encouragement often make me tear up when dropping him off and picking him up. My thought...in this room of perfect children, they love our little guy perfectly. They are awesome. When we picked up Mitchell at the end of the service this Sunday, they had thrown Mitchell a little party with Elmo hats, a big balloon and even decorated his stroller with streamers. I lost it!!! I was so touched.

We then readied for Mitchell's family party. Superman themed, we celebrated our little man of steel. For although he can't do a lot, he sure has had the strength to endure multiple surgeries, hours and hours of intensive therapy and more. We really appreciate friends and family sharing this day with us. When each of them arrived Luke got so excited. At one point when he saw new guests coming to the door, he screamed to everyone already there, "Everybody, we've got more customers coming!" We had a bite to eat, cake and even presents. A lot of thought was put behind the gifts he received. One special couple had a picture of Mitchell drawn by an artist. It is magnificent and looks so like him. I can't stop looking at it!

As many of you know, Mitchell's birthday also happens to be our wedding anniversary. We hope to celebrate that with a date night sometime soon, but the day - with weather exactly like the day we were married - ended with the best gift/memory we could have hoped for...Mitchell rolled from back to front.

Medical Moments

Mitchell got reassigned to a new early intervention specialist from our county. She visited Tuesday for the first time and we like her. (Okay, we asked to get someone new, but only because our first one’s attendance record was spotty.)

We got the print out of Mitchell’s MRI results in advance of the next neurology appointment (3/23). We definitely have new questions, however were struck by white matter/myelination now being appropriate for his age. This has been our biggest area of prayer since the last MRI. Hooray! Now that does beg the question if one of his biggest issues was lack of white matter and today he has more, then what is making things in his brain still not work right? Good question. Yet, we are encouraged that a specific prayer has been answered. It is reminiscent of the comparison between MRI #1 and #2. On #1 there was a small insult on the pons area of the brain. We prayed for that to be remedied and it has not appeared on MRI #2 or this #3.

Even more follow up came today when the neurologist's assistant called with a report on additional tests done on the Mitchell's muscle sample frozen at Children's since the biopsy done last June. There are 3 components of the test and parts 2, 3 & 4 are normal, while the results on part 1 is inconclusive forcing the lab/doctors to claim the result as abnormal. The nurse wanted to prepare us that the doctor will be recommending another muscle biopsy to be done and instead of having it be done here in Cincinnati, he'll prefer we travel to Cleveland to have Rainbow Babies/the Cleveland Clinic administer the procedure and tests. Beats a spinal tap, although if that's what he says Mitchell needs...we'd do that too.

A wheelchair was picked out for Mitchell – the Zippie ts. It takes 3 weeks just to get a quote turned around. The plan is to get the chair approved through insurance as well as a bath sitter to help the bathing process as he grows. We’re told it takes 4-6 months for the chair to arrive once the order is placed.

Mitchell’s next ortho appointment is April 9 where we'll find out more about his scoliosis and his hip being 30% out of joint.

Mitchell was accepted into the Pearlman Center after all. He’s on a waiting list hoping for a late summer or fall session starting point. We had such a low expectation on whether Mitchell was a candidate for the program, we are all the more surprised that they would advance him to the toddler class, rather than the early intervention class. The more we think about it, the more we are in favor of consolidating therapies into a 2x/week, half days schedule.

Mitchell has continued to attend the Conductive Learning Center once a week for a 3 hour session. For the past month or so he’s done remarkably well, barely crying and initiating some movement on his own.

If you read closely, I'd say there are some "ups" in this post, along with the usual uncertainty. We are looking forward to celebrating Mitchie's birthday this Sunday!

Luke-isms Part 3

Luke has fierce cowlicks at his front part and back of his head making his hair stick up from about 3 weeks following a haircut. Our latest strategy is to put gel in it and spike it up a bit. Recently after getting him styled, he wanted to see how he looked in a mirror. He saw himself and said, “I look good. I look like a rocking star.”

Each day when we get home from work we are greeted with the most cheerful question from Luke. We get in the door, get settled and then he asks, “Mommy, how was your day?” and “Daddy, how was your day?” How fun it is to tell him one or two events of the day then tell him how much better the day is now that we get to be together.

I asked Luke if we should say some prayers before he went to bed. He said, no that it was time for sleeping. So I asked him when should we say our prayers? He answered, "For 2 hours on Thursday."

It's time to sign up for weeks of summer "camp" at Luke's preschool. We decided to send him to one each month of the summer. We knew he'd have particular interest in the week called "Pirates and Princesses" as he loves to say "Aye-aye Captain" (likely from his Wiggles days) and play with his toy pirate ship. Luke was so excited about this, he wanted to immediately put his pirate dress-up outfit on. Out of nowhere came posing like we've never seen. After he posed for the camera, he instructed me to put my hand on a chair and turn toward him like a model. Where does he get this stuff? He snapped my picture and said it was a good one. I begged to differ so you won't see it here, but the little matey sure does look cute.

Mitchell got accepted into this project through which professional photographers are paired with kids with all kinds of disabilities. While we did just get a couple good pictures of Mitchell as I hope you saw, it was a stressful experience nonetheless. And, it was disappointing to go in to get photos of Mitchell for his 2nd birthday and have 2 to choose from, but 10-20 great ones to pick from of Luke who came along. What a neat thing for photographers to do around the world to serve special kids. We were told to expect a wait which is fine with us.

Medical Ups & Downs

I hesitated calling for MRI results half worried nothing would be notable and half worried we'd get partial info on something new sending me into an internet search frenzy. The scan's results were to be done in 24 hours, but it took me until today to call. "The MRI is consistent with the last scan". And, "The spectroscopy and other metabolic tests already in are normal." Chris already sensed nothing much would result since we weren't proactively contacted by the doctor's office, seeming it okay to wait until our next appointment for explanation. The kind nurse told me they were still waiting on the additional tests being done on Mitchell's muscle sample. So kind of a downer as we were so hopeful we'd get a test that was abnormal in order to direct us somehow.

This came after a consultation with Cincinnati Children's Pearlman Center today. This center used to be located in the hospital, but run by United Cerebral Palsy Foundation. Now it's been absorbed into the hospital itself. It offers a more holistic approach to therapy in a group classroom setting bringing in occupational, physical and speech therapy into what would be a 2 day a week "preschool" for Mitchell. A social worker, the teacher, an OT, PT and ST all held Mitchell and asked a lot of questions trying to assess 1) whether he'd be a fit for their early intervention program and 2) whether any adaptive devices that would help his abilitation. Their input was fairly positive, except it was akin to a job interview - we weren't told on the spot whether Mitchell would be accepted as a candidate or not. They are to get back to us in a few days. Another opportunity to think the worst. How terrible to consider being at the very bottom of the developmentally challenged list.

One of the evaluators was encouraging saying we were in good hands with our new neurologist. In fact, she has a child with metabolic issues that sees him as well. She said he's very thorough and has transformed her child's life with supplements, etc. After hearing that, I was even more excited to see what the tests had to say.

Then our nanny called late in the day saying Mitchell had a fever and had a substantial bloody nose. We took him to the doctor tonight. Pneumonia.

Thursday Chris is taking Mitchell to get fitted for a wheelchair the 2nd time around.

Are you seeing there are more downs than ups? Or so it seems. I admit to being a little more down than usual. I have been feeling very apprehensive about Mitchell's upcoming birthday, focusing on what he can't do at age 2 instead of being positive and focusing on what he can do and how far he has come. He's 2 and can't sit, stand, talk or feed himself for crying out loud!! I only share this to be honest. I/we don't have it all together all the time. I thank everyone for their support and feel like I might need just a wee more of it during the next couple of weeks.

Praying for more ups than downs!

Picture Taking

In advance of Mitchell's 2nd birthday, we went to have pictures taken. They turned out pretty well. Mitchell hasn't been feeling all that great, but that aside, it's hard to get good ones of him. We got him to prop sit on the floor for just a few moments and the photographer was able to capture it. Luke surprised by being such a ham. We're so blessed to have such handsome boys!