HBOT – Day 15, Session 21

Over 20 visits to HBOT, the point at which we were told we might start noticing some changes. So what are we seeing? Mitchell's eyes seem wider more often. He definitely looks right at you. You can tell he's trying to process what this seeing thing is about. Still wouldn't say he is tracking. We swear his head seems rounder, less flat/misshapen in the back - that way from having less white matter than he should for his age and from his torticollis (wry neck.) He eats and sleeps better. He also thrusts his head back less. That said, there are plenty of times that we look at him and he looks like the same Mitchell as before we started.

HBOT – Day 8, Session 12

Chris, Katie (the boys’ nanny) and our friend Cindy have all taken Mitchell to HBOT sessions. The experience has taken some getting used to for all including Mitchell who now fusses infrequently during the visits. What are we seeing? Mitchell sleeps sounder and is more content. His eyes seem different too. He’s not exactly tracking, but his eyes seem to move faster or more regular. And, he’ll look at your face now on occasion whereas before if he did ever see you it was random luck out if you were up and to his left. It could be a coincidence, but we’ve also caught him trying to roll from back to front a few times. We are careful about observing what is real versus what we want to see. All and all, we’re hopeful at 30% done.

5 Love Languages

Spend enough time with me and I'll eventually reference the Myers-Briggs inventory or the 5 love languages. The later comes from a book of the same title which outlines the 5 ways people like to receive love, care and affection. Typically a person's bias is to give love the way he or she prefers to receive love. The specific love languages are: quality time, acts of service, gifts, physical touch and encouraging words. Of course we humans want doses of all of these from time to time!

Chris leans towards encouraging words. I don't know if early on in our relationship I knew this, but our first Christmas together I happened to give him a gift of encouraging words. Throughout a downtown date, I gave him typed cards each in its own envelope outlining a different aspect of Chris that I appreciated. Instead of the "12 Days of Christmas" they were titled "The 12 Ways of Chris". I thought as special recognition for Chris this year, I'd share the short version with others. Guess what. They all hold true 7 years later. So Merry Christmas to us - life's better because we're together.

(Feel free to steal this idea for the person who speaks the encouraging words love language in your life!)

The 12 Ways of Chris
Planning - I feel valued when our time together is organized.

Consistency - Chris' yes means yes.

Laughing - He has the best laugh!

Openness - We can talk about anything.

Character - Has the attitude to do what's right.

Motivation - Chris wants to be his best and is a person of action.

Reflection - He listens, takes time to process and consider my thoughts.

Strength - Confident, he is not diminished even when acknowledging weakness.

Acceptance - He looks to the best in others.

Values - Easy to respect, our beliefs and background align.

Kissing - (No explanation - remember this was 3 months into dating!)

Optimism - Chris is the ultimate Mr. Brightside!

21 Months Today

Mitchell is 21 months today and on this day he has begun what is known as HBOT - hyperbaric oxygen treatment. He did 2 sessions today and he'll continue through 38 more sessions over the next 3-4 weeks. What is HBOT? It's a medical treatment which introduces 100% oxygen to a patient, using controlled pressure in excess of the usual pressure in the atmosphere. It is already widely used for non-healing sores, lime disease, damage done by radiation and some other things. It's less accepted yet to "treat" neurological issues, especially in children. However the protocol is safe...but time-consuming. Generally, the practice stimulates growth of new cells. Studies of children with CP, brain injuries or autism cite improvement overall sometimes remarkable, other times showing children reaching milestones quicker than a control group of some similarly-abled. But all will admit, it improves the abilities of some more than others.

We've networked with other parents of kids like Mitchell to get an indication of what we can expect. Mitchell's MRI shows decreased white matter for his age which is consistent with what he can do. No cell damage is evident on his brain, but it is possible that there is damage the MRI cannot detect. So promoting regeneration of cells in his brain is a good thing. He also has sensory integration issues. Sometimes he'll definitely respond to a loud noise, other times you can say his name right in front of him and he won't flinch. Sometimes you can get his eyes to focus on you if you are quiet and hold still to his left. Other times, nada. Parents' stories relate how their children hear or see better after this treatment. Again, a good thing.

We're going into this with the attitude that we'll try whatever we can during Mitchell's early years, while his brain is most plastic, to help him. We're considering it his Christmas gift. It's quite pricey and not covered by insurance. We're setting our expectations low. If all we do is get him to see slightly better, think of how much more he'll be able to participate in the world around him!

We'll keep you posted, but we're not to expect much change in him until at least 20 visits. The brain takes a long time to be restored so it's also possible we'll not see any change until weeks after the first 40 "dives" to increased pressure are complete. Wouldn't it be great if we were one of the remarkable success stories?

And Hope Does Not Disappoint

Mitchie's therapists and caregivers are receiving logo-ed shirts for Christmas identifying them as part of "Team Browning". We appreciate this group's perseverance as they work to make Mitchie's life the best it can be. There is a chemistry that must be right when you trust others to put your child in various stretches and positions in order to push him toward improvement. We are so fortunate to have so many wonderful and encouraging people on Team Browning!

The back story is that the shirts reference a bible verse that has been very encouraging to us from the book of Romans (5): "...but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us.."

There was a time when I didn't even want to admit to ever going through any kind of suffering. After all, I am resilient! I am strong! Rejoice in suffering? Yeah, right. But, over the past couple of years, I've learned a lot about the concept of suffering for when your child suffers, you most definitely suffer. And if this bible verse is any kind of an equation for growth, at this point...we're on board. Because hope is a wonderful thing. I wish I could bottle it. Whenever we see Mitchell do something new or different in the way he moves his body, our hearts jump - we get excited. We envision all his developmental issues reversing. This is hope. "And hope does not disappoint us." That is what we must believe. Hope you do too!

'Tis the Season

So much happening! This weekend we went to a holiday party today at the Association for the Blind and Visually Impaired. A nice event. Shown are pictures of Mitchell looking particularly cute and getting better with his sitting. He was surprisingly happy on Santa's lap!
We also went to a birthday party at "Pump it Up" a local bounce house. Luke LOVED all the jumping and was fearless about trying out the rock climbing wall. He just cleared the 35 pound minimum. More fun planned for next holiday weekend!

In Search of Support

I had someone suggest to me that we get plugged into some sort of support group to help us along the path of Mitchell's journey. As we are closer all the time to full-acceptance of his situation, I took the suggestion to heart. So far support has come from Yahoo special interest boards for CP, CVI and SWAN - a group for non-diagnosed children. I'm what you call a "lurker" since I mostly read summaries of the posts rather than actively post myself.

Finding groups in the community is a little harder especially since we don't have a real diagnosis. But we've had some activity. Last month, we attended a playgroup at the Association for the Blind and Visually Impaired. While 10 families were expected, 3 showed up. Even in the intimate setting, it was nice be able to share playtime void of mom-petition (AKA mom competition). Both of the other children present had a diagnosis. A girl was born with part of her brain on the outside of her skull. The part was removed and she was not expected to live, let alone see, walk and talk. Would you believe she is doing all of those? Amazing.

We also went to a monthly playtime at a private physical therapy center for children with rare syndromes. Many of the kids have genetic issues, like Angelman's. There was a wide range of abilities and the parents were fantastic - you wouldn't believe how good it was to be among those for whom comparing neurologist experiences is considered interesting party conversation! Still, it was quite overwhelming. This is Mitchell's peer group. Not exactly what you wish for when you think of your child's future.

I know we put a whole lot on the fact that Mitchell is undiagnosed. It's our main frustration made even worse now that we've met more kids that are differently-abled. Kids missing parts of their brain, with 3 extra chromosomes and having chromosomes absent at Mitchell's age are sitting, interacting, walking and more. Why if we have so many normal test results, no seizures, isn't tube-fed, etc., is he getting further and further behind? It doesn't make sense. Doctors tell us that 30-40% of kids go undiagnosed but from the unscientific census we've done in in the special health needs community, we just don't see how that is true.

Anyway, that's my rant for today.

--Still in search of support in Cincinnati!

Projects and Meetings

I learned pretty fast that children are a reflection of their parents so Chris and I had a pretty big laugh when one recent Saturday Luke asked whether I worked that day or not. When I told him no, he said, "Then, we need a project." Now, who does that sound like?

I guess Luke's been following other conversations pretty well too. Chris and I typically compare notes at the end of our work day. I must talk about meetings a lot because now Luke will welcome me home saying that it's time for his meeting. When I ask him who is going to be at the meeting he replies, "You are." The meeting location? His playroom, of course!

So my days are filled with projects and meetings at home and at work and I couldn't be happier.

Attitude of Gratitude

A friend recently mentioned to me his daily and deliberate practice of recognizing something he's thankful for in his life - no repeats allowed - as a way of ensuring he has an attitude of gratitude. My response to him at the time was, "How Oprah of you." Later, I realized this was an area I needed to work on in myself more, because indeed there is so much to be thankful for in our lives. So many times, especially recently, it's been easier to focus on what isn't right, rather than what is.

Here is a feature from ABC News that continues on this theme. A good reminder to focus on the potential rather than the problem. https://mail01.paycor.com/exchweb/bin/redir.asp?URL=http://abcnews.go.com/WN/PersonOfWeek/story?id=6254778%26page=1

Art Show

This week we went to an art show at Luke's preschool. It was so well done. Luke even had his own version of Van Gogh's "Starry Night" and many other shall we say, impressionist designs.

Summer Camp Photos

So much to post lately. Katie, the boys' nanny, just sent me pictures she's been meaning to send. These are of Mitchie's graduation from conductive education's summer camp and are worth sharing! You'll see Mitchell getting some help walking across the bridge to mommy showing off what he learned. It's not easy work for him, but he initiates more walking movements all the time. Right now he's going once per week to the Conductive Learning Center which for his age is about all he can tolerate.

Luke at School

Here are some pictures of Luke enjoying his time at preschool. He loves it!

Another Normal

Good news. I called to check on the latest test results today and heard Mitchell tested normal against all related conditions. The more "normals" the better, of course. Today also brought his best therapy session in more than a week. The physical therapist pointed out that Mitchell gets upset almost immediately upon our handing him over to her. She wondered if it is his version of stranger anxiety which is developmentally appropriate so we'll go with that for now.

We also went to see Mitchell's ophthalmologist, Dr. Bonsal. This meeting was probably our best with him. Yet disappointingly, he didn't notice any change in Mitchell's eyesight. He reviewed all notes and tests concluding we should get a second neurological opinion as he felt there should be some reason for Mitchell's hypomylenation (decreased amount of white matter in his brain for his age.) He was extremely empathetic sharing our frustration in not having any explanation. When all else fails, I'll take humility and straightforwardness any day - I'd rather him say he doesn't know then knee jerk and tell us something off base just to sound like the expert, leaving us in a tailspin of worry.

For now, I pledge against that cycle of worry since nothing good ever comes from fear. Instead I'm deciding to focus on having practical hope and faith for all of our futures.

Until the next doctor visit...

The Waiting's the Hardest Part

My favorite required reading in high school was Crime and Punishment by Dostoevsky. Maybe because it is Russian, likely because it's complex. I remember getting that the lead character did bad things, but his torture came largely from the anticipation of punishment, rather than the punishment itself. The impatient person I am understands how that could be. For about 2 weeks now, we've been waiting for a test result to come back on Mitchell. I refer to the stress of waiting for those results to be a hum in our lives that distracts all else. The what-if, while not exactly punishment, gets to you.

The test he took is a genetics blood test to see if he has a rare syndrome that would fall under the category of Congenital Disorders of Glycosylation. We don't even know enough about it to be all that fearful and he's come back clean for all diseases sought for thus far. Still, we're worried. Once again we've been told that we're sort of at the end of the line for tests and we may never have a true diagnosis. (By the way, the geneticist's answer to whether he'd classify Mitchell as having CP was "yes and no". Hmmm.) So in a way, even with a test result in, our waiting and unknowing doesn't end providing us long-term tension.

Our faith will likely continue to be tested as we wait to see how Mitchell progresses. I don't mean for this post to sound overly dramatic, but I'll continue here and include the specific areas we request prayer for concerning Mitchell and our family. I get asked about this a lot and I've hesitated writing about this for a variety of reasons. But, we're desperate! Especially because lately some areas of Mitchell's development seem to be at a standstill or even regressing. You can help us by praying for...

--Increased white matter in Mitchell's brain
--That Mitchell interacts with us and the world around him more
--That his eyesight improves through new pathways created between his eyes and his brain
--Doctors and therapists who can give us specific input on Mitchell's situation
--That he sit independently
--That he no longer breath hold/have blue spells
--That his sensory processing become better integrated
--For Luke to be a brave big brother...and be potty trained :)
--For Chris and I to have peace that passes understanding regarding this situation

I'll also say, that you can help by asking about how we are all doing. Chris and I have a very hard time opening up about this and it's really helpful to reply rather than initiate.

WOW this is pretty transparent of me. Is it personal growth? Well, I am older and wiser now. A sincere thanks for all your support and prayers.

Stacey's 40th Birthday Party

Chris gathered some friends to celebrate my 40th. He also hired just about the best band in town, at least when it comes to 80's music in Cincinnati - The Rusty Griswolds. I don't think we could have had a better time! There was so much great energy and it was great to let loose a little. Thanks so much to Chris and everyone who was there. I'll remember this night forever. Right now I'm remembering it quite well since I'm still sore from all the dancing! Check out some of our fun.

Luke-isms

Lately Luke has been delighting us even more than usual. Some Luke-isms...

--Luke and mommy were sharing an order of chicken nuggets. When mommy asked him if he wanted the last one, Luke replied, "yes". Mommy said, "Great because this one's got your name on it." When Luke was handed the chicken, he looked on the front and the back repeatedly and said, "It doesn't have my name on it. Maybe Daddy already fixed it so it's not there." I told him it was only an expression so he ate it anyway.

--Luke and Daddy like to cut through the path in the woods behind us and play soccer and golf at the park you can get to. During a recent trip, Daddy asked Luke what golf club he'd like to use. Luke answered, "the putter". Then after trying to hit with his little iron said, "I guess I need to keep my eye on the ball." Daddy was taken aback with the maturity of his conversation. Guess there will be afternoons of golf in our future.

--Luke must love story time at his preschool. When at Barnes and Noble with Mommy and Mitchell, Luke set himself up on the kids' area stage with a book and shouted loudly, "My name is Luke Browning. Please sit down." Both the woman working in the area and I were quite surprised, but we did what we were told.

--Luke was at Grandma's house. He was so engaged in a cartoon show that when Grandma tried to talk to him, he didn't respond. Grandma said out loud to herself, "Boy talking to you is like talking to a wall." Later they were playing together and ventured out to Grandma's screened porch. Luke startled Grandma when he turned to the brick wall and said, "Hello wall, I'm going to talk to you." Suppose he heard Grandma after all and wanted to see what this wall-talking was about.

Mitchell - 18 Months

Just this past week we've been noticing that Mitchell is using his legs more. He's been spending A LOT of time putting some weight on his legs, supported, while leaning on the couch. And now when held up he's initiating walking motions. He'll also move around when put on his tummy as if he's trying to figure out how to commando crawl. Just seeing the wiggling around and independent movement is encouraging!

This morning his PT noticed the progress and put him in a PONY gait trainer. It's a wheeled device that allows him to ride a seat in a supported way (like a horse) and move himself as if walking. He has to have one of these! Already, we have a wheelchair on order for him because we're told that even if he walks, it's likely he'll tire easily and in the meantime a chair will put him in an optimal seating position to aid development. Getting a chair supposedly takes months through insurance approvals, etc. so it's suggested we not simultaneously put through a gait trainer order. Therefore we're going to check out eBay or other means of trying to get one.

Another nice thing that's happening is that Luke is taking much more interest in Mitchell. We'll catch Luke going up to Mitchell's stroller to rub noses or find him trying to "play" with Mitchell by putting a musical toy in front of him. Luke's become quite vocal. He's now speaking for Mitchell too, telling us when he is full or that he doesn't like the yogurt or whatever we are feeding him. Up to now Luke's cared if Mitchell was around but didn't really interact with him. He's being such a great big brother!

Celebrating 40

Got a warm welcome at work today for my 4oth birthday. Balloons in my office had words others thought described me. Very nice and appreciated especially for this big milestone!

What's up?

Haven't posted a lot lately because our home computer is sick with a nasty virus. What's been going on with the Brownings?

--Luke and Mitchie went to their first dentist appointment. Both boys checked out fine. We were concerned that Mitchell did not have enamel on his teeth. The dentist said he indeed has partial enamel. We'll need to watch the teeth as they come in and we may need to seal his baby teeth as time goes on.

--Speaking of teeth - Mitchell has no less than 7 teeth coming in at once. Because of that, he has regularly been getting up at 2 or 3 AM every night. Just this weekend it's gotten easier to get him back to sleep. He was staying up for 2-3 hours. Makes for a very long day!

--Luke started preschool and loves it. It's wonderful to hear him sing songs he learns at school in his sweet voice!

--Chris enjoyed this past weekend visiting his Navy buddies in St. Louis. He had a great time!

Upcoming for us: Stacey's birthday, taking Mitchell to various appointments including his 18 mo. check up, genetics and ophthalmology visits and more.

Luke Turns 3!

Luke had a tremendous birthday weekend topped off with a Olympic themed party with his favorite, Chinese food, straight from Beijing and enough red, white and blue to make USA proud. The closing ceremonies were a terrific backdrop and the kids vied for a medal in golf, bowling, baseball and car racing events.

Here he is with Grandma and Pop Pop Montagner:

With cousins, Noehmi and Maria and friends - Adam and Hudson:

With Daddy before the party, with whom he shares his birthday (if you haven't noticed, Luke's getting more comfortable with picture taking and told Daddy exactly how to sit and pose):

Mitchell's Graduation

Mitchell graduated from Summer Camp at the Conductive Learning Center last week. We celebrated at a picnic. The highlight was when each child crossed the wooden bridge in the backyard with whatever help they needed - walker, cane, therapist - to greet his or her parent.

Andi, Mitchell's therapist, gave Mitchell a very nice certificate which read: "To our loudest singer! Mitchell has progressed well in the sitting and standing programs - he plays the drums with sticks while sitting and dances with the stars when he stands!"

It was all so special and gave us so much hope for more graduations and progress to follow.

Trip to Cleveland

We decided to venture out for our first family vacation of sorts. In other words, we set out for our longest car ride with Mitchell to date. And it went great! We headed to Cleveland to see my brother Craig and his family in Madison, Ohio for the weekend. Luke and Riley were inseparable and it was terrific to meet baby Gavin. We especially had fun at the beach all together and Luke jumped and jumped and jumped on their trampoline.

On Saturday I had the boys dressed alike so I tried hard to get a good picture of them together in the hotel room before anyone got dirty. You can see we only managed to get them in the same vicinity. Did it have to be such an ugly couch? The teal goes so well with the olive and orange shirts. But we still love this shot because you can tell that Mitchie is starting to sit so much better!

Mitchell at Therapy

Right now Mitchell averages about 11 hours in formal therapy a week - 9 of which at the Conductive Learning Center. His instructor, Andi, isn't convinced of his CP assessment as she says he doesn't present like a typical Athetoid kid, but she is convinced sitting is a reasonable goal and is overall encouraged by his progress. Here are pictures from a recent session.

Getting Closer

Mitchell saw a couple developmental pediatricians on Thursday. They say he falls under the umbrella of having Athetoid Cerebral Palsy. Although for no evident reason aside from visual inspection. My aggressive Googling showed me that most kids with this have a definite brain injury which Mitchell does not. One of the doctors said that she has seen two kids that present CP with the only abnormal being delayed mylenation. I guess Mitchell would be the third.

Athetoid is characterized by jerky movements and fluctuating tone versus the Spastic type of CP that typically presents with stiff tone. We're encouraged to know that kids with Athetoid CP develop slower which may explain why Mitchell is so incredibly behind even kids with similar issues. And we're told that Athetoid CP doesn't tend to have a plateau so he may continually improve. Of course, no answers come when we ask for specifics on average milestone achievement and specific projections relating to Mitchell.

So we're getting closer. It is an improvement to have something more definite to refer to, but there are still so many unknowns. Mitchell is doing very well at the Conductive Learning Center. Everyday he does something new. Katie helped us plan that with her help he'll continue to go 3 days a week through August. Then in September he'll go 1 day a week. After that we'll regroup.

A Special Mother

I've hesitated posting this because it seems a little self-centered. Truth is Chris and I have purposely not identified with the phrase "special needs" even though when a doctor first referred to Mitchell having "special health needs" I knew it fit. Regardless, there are some phrases in here that give me personal encouragement. I know God has a plan and we are indeed blessed by Mitchell's knack of making us appreciate such little things in this world.

A Special Mother by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Country Picnic

We went to a charming event today at a nearby church. It was a country picnic focused on kids. They had horse rides, a petting zoo, kids games, huge inflatable jumpers, fire trucks to sit on and even a pie auction. Pop Pop and Grandma Montagner came along. Luke was into everything, but we especially got a kick out of seeing him pitching. Is it us or is he winding up his pitches? Of course, when the last ball leaves his hand, he sort of mis-aims hitting the woman standing beside me! No harm. No foul.

Welcome Gavin Montagner!

Just heard the news, little Gavin Anthony Montagner just entered the world, son of Stacey's brother and his wife, Craig and Carli. He arrived 10 pounds, 8.2 ounces and 22 inches - a big boy indeed. Two weeks early, too. He joins sister Riley Marie, now 4. We can't wait to meet him! Congratulations!

Mitchell Goes to Summer Camp

First of all, we have a new nanny and she is awesome. Her name is Katie and she is so positive - a real pleasure to be around. Around the time Katie started with us, we got a call from the Conductive Learning Center in Covington, KY informing us they would be starting up classes early July. Katie agreed to take Mitchell to what they call summer camp 3 days a week, 3 hours a stretch. It's essentially intensive PT/OT and ST wrapped into one. The class is led by a "conductor" who helps the children do various exercises. There is a break for a snack and would you know they have Mitchell sit on a little potty every 45 minutes or so? I guess this helps practice sitting and gets him used to the experience - 2 successes so far by the way, although flukes! This is evidence of what we've seen so far, this place sets high expectations for kiddos which is fine with us. The conductor talks about how Mitchell will soon sit and even if he falls over, he'll learn to catch himself. Sure beats the "he'll never sit, never walk, never communicate" track we get from the neuros.

Songs are paired with the activities to make it more fun and memorable. Mitchell (& Katie) are exhausted afterwards. But Mitchell has been so content and happy since starting there. I really think he's starting to have more body awareness. Camp lasts 3 more weeks and we'll have to see whether he'll continue going in the fall.

Perplexed

We got news through the mail that partial results are in from Mitchell's muscle biopsy. Unfortunately we haven't yet gotten an explanation of what they mean. Statements like, "a minority of microfibers subsacolemmal mitochondrial not aggregate" are a mystery to us. We know the result is abnormal though with the only diagnosis being stated as "muscle weakness". So therefore still no answer. We have calls and an email into the neurologist. I recently found some T-shirts that offer some comic relief. Maybe I'll get one or two of these and have Mitchell wear them to his appointments.

Browning Look-alike Meter

Awhile back we posted a survey as to whether Luke looked more like me or Chris. Well a neat internet tool helped decide the real answer. Closer than what everyone thought. And, I guess there was no point to ask about Mitchell because this shows it would have been a 50/50 split.

Browning Look-alike Meter

My Disease

So much of the time we're focused on Mitchell's health that we fail to talk about my own disease. What I have is pervasive and debilitating. A break out sneaks up on me when I least expect it and causes havoc. Nowadays my illness is at its worst at parks, parties and the mall; in my single days it flared up when out with friends in the social scene. The name I've given for what I have is Comparison-itis.

Have you heard of this illness? You might have it yourself if you catch yourself sizing up what someone else has or doesn't have compared to you. "She's more attractive...more successful...but I have more balance in my life and have a better husband..." It can be an obsession. If you have it, you're especially vulnerable to an outbreak when you have children. "That kid was potty trained at 18 months and eats all his vegetables, mine watches cartoons and has strawberry mix in his milk - I must be a bad mom." Let me tell you, there's nothing like having a child with developmental delays that makes you feel like you don't compare. No parenting article offers advice right for you, no TV show relates.

Some may say Comparison-itis is human nature. I am probably highly susceptible to it as I have a competitive nature, although I wouldn't call myself a jealous person. Yet, when I see a healthy, happy infant, I ache with pain knowing our family's story is different.

In case you too suffer, I thought I'd share a couple antidotes that have worked for me in alleviating the pains of this horrid disease. The first thing that's been quite effective for me is ACCEPTANCE. When I was single and seeming to be one of the last ones getting married, I was easy prey for green-eyed Comparison-itis. While I was happy for friends who were settling down, I admit I worried..."What's wrong with me?" When Chris came around and from the start accepted everything about me, suddenly I was in remission. No longer was confidence a facade or only shown at work. Chris' love and acceptance of me gave me happiness in myself and put Comparison-itis at bay.

I think of this when trying to get to a place of acceptance with Mitchell. I can't express how much I love him. But Chris and I have a performance mindset that is not always healthy. How do we handle that Mitchell is atypical and put away expectations any parent has for his or her child? We're not ones to settle. I encourage myself by remembering how I value Chris' acceptance and work on unconditionally accepting Mitchell, while not limiting possibilities. For me, this takes PRACTICE and PATIENCE.

The second way I've found to combat Comparison-itis is through what I call FLASH-PRAYERS. Someone once taught me that a good way to work through forgiving someone is to deliberately offer prayers of blessing for them. I've found this works against Comparison-itis too. So when I see a child that's half Mitchell's age crawling, talking and more, instead of letting that get me down, I silently offer a quick flash-prayer, giving thanks for that child. I think about how lucky the family is to have such a thriving child and pray for the development to continue. Doing this is counter-intuitive, but for me it works like a charm. How can you stay upset with someone or think negatively about someone when your heart and head are focused on positive imagery regarding the situation?

Of course, I'm far from perfect. My mom wisely counseled me not to lose my compassion for others after I lamented about how one child's occasional ear infection couldn't possibly compare to taking my son to 7+ times per week therapy and doctor appointments. She essentially reminded me that stress and problems don't necessarily have a stack ranking. I try to remember that as well and work on having genuine empathy for others. In the end, I hope my heart is being healed, reoriented opposed to the pattern of comparison.

Awesome Dad

On Father's Day we really tried to get a picture of Chris with the boys before going to church and before shirts and faces got dirty from the day. Luke was more interested in playing with our front door, helping to push the stroller or later, helping to wash the Jeep. Even so, you get the idea of what life's like for Chris on a typical Sunday when he's enjoying fatherhood. He cherishes it all and is one amazing, awesome dad.

Breaking the Vicious Cycle

Through networking with other moms with kids that have similar issues as Mitchell, I found out about a diet that has helped some with digestive and neurological issues. It's called the Specific Carbohydrate Diet, documented in the book, "Breaking the Vicious Cycle". On the diet, complex sugars and gluten are limited. We started Mitchell on it almost one week ago. His elimination (euphemism docs use so I will too) has been easier and we swear his eyesight is improved. A meeting with Children's Feeding Team today included time with a nutritionist and while she isn't totally on board with it, she suggested a calcium supplement and agreed that if we're seeing some improvement to continue trying it for a while longer to see what occurs. Probably the biggest shocker regarding this is that I'm now making baby food from scratch! Every time I get that food processor out I can't believe it myself! If anyone has any input or thoughts on a diet like this, let us know.

Also the biopsies from Mitchell's esophagus, stomach and duodenum came back normal.

Outpatient Surgery 6.5.2008

We just got back from the hospital. Mitchell did well through two procedures - an endoscopy and a muscle biopsy. He's groggy and is already napping now that we are home. We were given pictures of inside Mitchell's esophagus, stomach and small intestine and they are each rosy pink and perfect looking. Cells taken will be evaluated and we should have results in 3 or 4 working days as to whether there is more behind the nice appearance. I know it's crazy, but we sort of were thinking something would be found to explain Mitchell's discomfort and issues. Of late, he's actually been more irritable and having increased digestive problems.

In addition, muscle tissue was taken from Mitchell's leg and we won't know the results from that for 1 - 4 weeks.

While prepping for the surgery, we did get a glimpse at sleep study results - no sign of apnea, hyperventilation or seizure activity when sleeping. Another normal!

As the GI doc told us, we are close to the end of the line on tests and he thinks we may not find anything conclusive and will likely be in the category of not having any diagnosis. Therefore, all we can do is enjoy Mitchell for who he is and continue to believe progress will occur even though it's slow. Still, we believe in healing, improvement and of course, miracles! This is one special kid and every nurse and doctor he sees comments on how long his eyelashes are, how perfect his skin is and how loving his personality is. If we could only fast forward and see what the future holds.

More Tests

Well we won't have Mitchell's sleep study results for 2 weeks, but I know the result the experience had on me - fatigue! The tester was in and out all night plus Mitchell woke up periodically, which wasn't a surprise as there were so many wires stuck to Mitchell's body, head and face. All we needed for a good test was Mitchell to sleep 4 hours. Fortunately he got that in even if I didn't.

What's ahead? Got a call yesterday that Neurology and GI were able to consolidate their procedures to be done under anesthesia in the Same Day Surgery center. On Thursday, June 5, they'll do an endoscopy and a muscle biopsy. I'm also trying to coordinate a hearing test for the same time, but that's looking uncertain. We're nervous about his being intubated with his low tone. But we're happy that all this is going to take place before our appointment with the Feeding Team. Pray this day goes well!

Smart Boy

We've started a search for a new nanny as Kirsten is unfortunately leaving for personal reasons. After meeting our first candidate, I asked Luke whether he liked her. He emphatically said, "No, I like Mommy." I mentioned this to Chris who replied, "I knew our boy was a genius!" Guess Luke is figuring out how to work a lady already! Smart boy.

Momentum Shift

Today Mitchell had an appointment with his orthopedist. Frankly, we hadn't had a visit with him since our first 6 months ago. It was at that initial appointment that the doctor told us "the reason for his issues are due to 3 codes (lack of oxygen) when he came out of surgery" and "clearly you have bigger neurological issues to worry about than his torticollis or curved spine." I don't break down often, but his manner and blunt words caused me to heave heavy sobs as soon as he left the exam room. We've worried about getting to the bottom of those codes ever since. We were never told about them, though we knew Mitchell had difficulty coming out of anesthesia following his cardio-thoracic surgery.

Dreading today's appointment, the experience couldn't have been more unexpected. First, the doctor completely remembered Mitchell and me. He searched around the electronic records, looked at me, then apologized for his telling us about codes. For the first time I saw the file in which they were referenced. It was a misrepresentation from my own account of Mitchell's oxygen desaturation spells prior to his surgery. A doctor apologizing...amazing. Then he watched Mitchell and looked up saying to me, "He's really improved hasn't he?" More shock. He went on to notice how Mitchell seems better neurologically and physically, using his body more and interacting with the world around him. He even balked at our inquiry about wheelchair preference, saying it's too early for one. "Let's see what he does on his own." Bottom line, we know Mitchell is no where near where he should be at 14 months, yet we don't typically get any sense of hope or optimism from the doctors and today we did. And, from the most callous doctor Mitchell sees! We're calling that a shift in momentum. It really lifted our spirits!

By the way, we've had pulmonary and cardiac doctors check out Mitchell's lungs and heart with clear reports. He has breath holding spells and oxygen levels get to the 70-range, which means it looks a lot scarier than it is. He'd have to get down below 40 for alarm. He'll turn a little purple around the mouth during one of these episodes and all you need to do is blow a little on his face and he'll breathe. Even so, we're checking into Children's Hospital on Sunday for an overnight sleep study to make sure sleep apnea is not occurring.

At this point, we feel feeding is our primary concern. We rescheduled the appointment with the feeding team at Children's Hospital because in preparation for the meeting by phone with their nurse, we determined they did not have enough information regarding Mitchell. We now are scheduled to see the group on June 10 and by then we'll have results from the FEES test to see his swallowing via a camera put down his nose. Following the feeding team appointment, we're pretty sure we'll have to sedate Mitchell and have an endoscopy performed to really check out what's going on in his esophagus.

I also found out I was a little misled into thinking that Mitchell's doctor visits would be consolidated. But I'm getting smarter about asking questions up front to make sure each visit is productive and we're still preparing agendas for each appointment which is helping. Oh well...could the playing field be changing? We are hopeful. We dream of Mitchell walking into doctor's offices and saying "hi".

Thanks to everyone who shares in Mitchell's "inchstones" and of course, big brother's "milestones"!

Passing Grade

Congratulations to Chris! He successfully passed his biennial testing required to maintain his CFP (Certified Financial Planner) designation. Cheers to him and to the rest of us who worked together to find time this past month for him to study. Woo Woo!

Marathon Memories

Hard to believe it's been 10 years!

http://news.enquirer.com/apps/pbcs.dll/article?AID=/20080501/SPT/805010361/-1/flyingpig&GID=Ok2g87D6FzxDsYIQYvnmlIS+ku7J0zpBF1jZUuijHHE%3D

Medicine Meets Business

We have started typing out an agenda for every doctor visit we have. The doctors we like the best seem to love it. A couple have been taken aback. I feel like we are getting better "service". It shows we're watching every aspect of Mitchell's care. The only appointment of note last week was a visit to Mitchell's GI, Dr. Ajay Kaul. While other docs haven't been too concerned with Mitchell's aspiration, he is. He referred us to the Feeding Team. This is a group of multi-practice doctors who meet with you at one time, including Speech Pathology, GI and ENT. Ah, more efficiency! I understand there is some overlap with what they call the Aero-Digestive Team as well and that Mitchell's case is to be discussed in advance at an Aero-Digestive Team meeting this week. Dr. Kaul thought we should prepare ourselves that a feeding tube (g-tube) might be necessary. A lot more research to do on that.

We also told him of Mitchell's increased spitting up and vomiting. He believes Mitchell may have Eosinophilic Esophagitis (EE) based on the timing after feeding and bloody streaks. Described to me as asthma of the esophagus, it is common in the Cincinnati area because it can be triggered by seasonal or other allergies and exacerbated by reflux. http://www.medicinenet.com/eosinophilic_esophagitis/article.htm. The Feeding Team will likely schedule us for an endoscopy. Given that, we decided against the hearing test after all. Dr. Kaul graciously told us about a Concierge Service Children's Hospital offers. The phone attendants will coordinate appointments that involve multiple specialities so I don't have to figure out how to do that myself. Now why haven't I heard of this before?? Soon, even more efficiency! After this round of doctor visits are done, we'll coordinate one sedation for tests now to include: hearing, endoscopy and muscle biopsy.

Only one doctor visit this coming week and that is with Genetics. We see Dr. Hopkin.

On rare occasions it seems like words come through others right when I need them that I swear are from God. Recently, I was sincerely moved when a boy sat next to me in a waiting room. He read a book while his mom checked him in. When done, the mom came over to us and said to me unprovoked, "Don't give up. See my son. He's done everything the doctors told me he'd never do. Sure when he talks, he's sometimes hard to understand. When he walks, his gait is awkward. But he's 8, in school and is doing very well. He too had low tone until 2. He wore orthotic boots like your son has on. At 3 we found out he has Muscular Dystrophy so we were undiagnosed for some time. Don't give up and keep pushing your son because he'll do more than you expect." Just as she was done, Mitchell's name was called by the nurse and I mumbled some reply. I really wanted to know more, but I already had heard what I needed to.


"All children will learn and succeed, just not in the same way or on the same day."

By the way, good news. My brother has just about recovered. After the surgery to remove the infection, he was allowed to go home awaiting clearance to return to work.

What a Day!

April 25 turned out to be quite a day. Kirsten, Luke and Mitchell's nanny, called me. Mitchell had thrown up at his massage appointment, then continued to get sick in her car and at home. About 15 times all told with the final heaves bringing up some blood. I rushed home and got him to our pediatrician's office. He looked pale, but didn't have a fever. Even with ok vitals, the doctor said we needed to go to Children's for evaluation. After going to the ER and being checked out we started offering liquids and he seemed to keep them down. They suggested we carefully watch him and follow up with GI. It could be that it is reflux related or that capillaries broke after being sick so many times. Fortunately we have an appointment on Tuesday, but poor little Mitchell. This kid needs a break!

While at the pediatrician's office, I received a call from my sister in law, Carli. My brother is in the hospital with a serious, yet not specified infection on his back. MRSA is suspected. He had terrible pain, fever, redness and swelling. Some of those symptoms are easing, but test results on the cultures are not expected until early next week. The surgeon will be removing more of the infection this weekend.

Some other not so great stuff has been happening to those around me so I feel compelled to pray for God's protection of my family, especially Mitchell and Craig, and my dear friends and loved ones.

We are particularly thankful that some good news came this week. Pulmonary found Mitchell's lungs to be in excellent shape. That means whatever aspiration he is having is not causing long term damage as of now. An appointment with an RN in Children's developmental pediatrics helped me navigate some of the issues we've been having. For instance, I think we will go ahead and have a hearing test done Wednesday. The RN is also helping to assign us to the Cerebral Palsy Clinic even without a clear test providing a reason for Mitchell's motor issues. While I've shunned the CP label, being assigned to a clinic consolidates some of the services we need so our care will be much more efficient! Mitchell got orthotics this week. He'll start being put in a stander during PT appointments now that he has these.

I Am My Son's Advocate

"We are so lucky to have Children's Hospital." That's the general message you hear around town. Yes, there are incredibly talented professionals working there. So why am I tired of the appointments, the waiting rooms, the phone systems, being asked the same questions by each department because systems are not shared? Well, I recently figured it out. The answer is simple: we don't have a diagnosis.

The hospital is organized around specialties. There's the Spina Bifida Clinic, the Diabetes Center, the Jane and Richard Thomas Center for Down Syndrome Services, etc. Within these disciplines, you are assigned a care manager to help you navigate the hospital system. While Mitchell has been characterized as having Cerebral Palsy, it's by observation only. And, his issues are multiple-system oriented so we've not fallen into any specific center. Therefore, I'm having to figure out what step to take next, who to call and feeling like a pinball between specialists. Like with Mitchell's vision. Ophthalmology says his eye structure is better than typical for his age - vision issues are brain based, "See Neurology". Neurology says the pathways between his eyes and brain can't be tested because signals stop at the retina, "Go have Ophthalmology check the structure of his eyes." Or a neurological test cited a fractional hearing delay. What does that mean? "See ENT." ENT/Audiology says they can't understand the test results because they are written in neurology's language. "We need to put him under again and test our way." Why do we have to take time and subject Mitchell to anesthesia again, just because they can't interpret each other's code? Can't they call one another? You get my point.

I talked to a VP within the organization to try to get a social worker, customer service or some other kind of ombudsmen on my side. I was flat out told they are proposing a system for assigning care managers to children who fall outside of a diagnosis in the fall. Not to worry, I'll continue being the advocate for my son's care. I aggressively follow every redirection I get, never wanting to look back on this time only to say, "I should have..." or "If only we..."

There are a lot of benefits and great care that comes when a child's situation is finite, especially at Children's Hospital which is truly a wonderful organization. But I see benefit and actually hope in not exactly knowing Mitchell's make-up. He can't be fit into a box. He continues to progress. There isn't a limit on our thinking. We expect this kid to do a lot. Of course it will be according to his timing. Who ever said I didn't have patience?

We have found an organization that might be a good fit for Mitchell. www.clcgc.org. It's an intensive way of breaking through a child's motor or movement inabilities via repetition.

We have an appointment with Pulmonary and the Division of Developmental and Behavioral Pediatrics this week. Next week Neurology and maybe that additional hearing test -- have to keep asking questions and advocating to see.

Family To-Dos

Boy, it's a Saturday and we are feeling a bit overwhelmed with all the spring to-dos. The list includes making our yard presentable after having a few trees bite the dust during last year's hot summer and shopping for a new car since Chris' Jag needs an investment about equal to its worth.

Mitchell's schedule of appointments keeps us busy too. We are still working on his feeding. A FEES test that will put a camera down his nose to watch his swallowing in action is next on our list. He's also waiting to get into regular speech therapy at Cincinnati Children's Hospital. We are excited that he is occasionally rolling over by himself and his neck strength and ability to push up is improving. Best of all, he seems to be interacting and aware of his surroundings more.

Luke's our steady and we appreciate every joy he gives us. He is playing a lot of base-eh-ball (Luke says baseball with 3 syllables, more like bas-ket-ball). His weekend to-do list includes a trip to the mall where he has a routine he directs us through, from eating at the food court, visiting "Pop-Pop" at Dillards, playing on the big beanbags for sale, going up and down the escalator and throwing coins into the fountain.

Chris visited with his Navy buddies in Reno last weekend and had a great time. The boys were thrilled when he returned. Although life is frantic most times, Mitchell has been regularly sleeping 7 hours at a stretch at night. We sleep when he sleeps. So, although our plates are full, we keep commenting on how much easier it is to tackle things when we've had rest.

Wishing good slumber to all!

Mitchell Update

Mitchell had a swallow study done today. It was found that he "aspirates" or gets some liquid in his lungs when he swallows formula/liquid. This is a result of his low tone and his not yet sitting unassisted. Typically when kids aspirate, there are chronic respiratory issues. However, Mitchell is generally well and rarely has the sniffles or congestion. He doesn't have a problem eating pureed food.

What now? Understandably we're nervous about giving him any formula, but because he's been so healthy, the team suggested we continue as-is because Mitchell needs the hydration. The test results are being shared with some of his doctors and we'll go from there. We already have a motor feeding session scheduled for Monday which will help give us some more direction as well. Worst case scenario is that he'll need a feeding tube in order to avoid long term lung damage or other issues. Yikes! Please keep him in your prayers and we'll post any new findings.

Otherwise, sleeping is still going well even though Mitchell is tending to get up very, very early. We've noticed improved head and neck control and his sight seems to be better too. He's been fitted for orthotics which should help with his feet positioning and weight bearing.

We are so thankful for everyone in our little Mitchell's eventful 1 year-long life, particularly his therapists he sees weekly or more and who really want the best for him, including Kirsten (his nanny who regularly works him out), Michelle (OT), Ashley (PT), Chris (EI), Anna (vision), Dr. Paul, Jeff, John, Gayle, Barry and the rest of the Baker Wellness gang.

Luke's Learnings

Luke is just over 2 1/2 and so fun to be around. He surprised us Easter Sunday when he found a way to reach the table's centerpiece which was 2 baskets filled with plastic eggs. He was moving the colored eggs between the baskets. When I asked him what he was doing, he looked at me and said, "organize". Mommy, with her bias towards organization, was extremely proud, but also realized that the journey of Luke learning through mimicking us and others verbally has begun. Careful what we say!

Besides organizing, cleaning and helping in the kitchen, Luke loves playing with any type of ball, chase and being outdoors. Grandma and Pop Pop gave him a new igloo fort which he finds fun too. He knows his colors and counts to 20! It's all happening so fast.

Mitchell's First Birthday

March 15 marked Mitchell's first birthday. We celebrated by inviting friends and family over for a special gathering. At the party, my parents gave a short talk about what the bible says about healing then we all prayed for Mitchell as a group. Guests had a chance to sign a memory book that our friend Cary made. Thanks to all those who came. It was such a perfect way to honor this child's life.

Oh, good news - Mitchell's been sleeping through the night. What a blessing! We were just thinking we didn't know how much longer we could go without continued rest. We're still not back to a normal routine, but the night-cycle sure is improving!

Time Away

Chris and I got to take a little break from things when on his award trip for work. On a 4 night cruise, we stopped at Key West and Atlantis in the Bahamas. Best of all, we had a chance to celebrate our 5 year wedding anniversary! We even missed the worst snow in years to hit Cincinnati. Of course, we couldn't wait to get back and see the boys. While there we got to see the popular Cincinnati-band, The Rusty Griswolds. Here's Chris enjoying the show, upturned collar and all.

Mitchell's Progress

Mitchell is 11 months old today. He is still very behind and progress is slow. But we notice every tiny improvement he makes and celebrate it! It's hard to say which issue is his biggest. He has struggled with CVI (cortical vision impairment) which means his eyes are set up to see fine, but the pathways from the eyes to the brain are not completely working. He also has acid reflux and torticollis. He has mixed tone. In some areas of his body he has high tone which means he's unusually stiff, while in others he is hypotonic or low tone. His low tone in his trunk contributes to him not yet independently sitting.

Mitchell had his 2nd MRI done about a month ago. It was found he has a thin corpus callosum. His white matter is immature, which is typical when a child has delays like his. There wasn't anything else to explain his eyesight issues on the MRI, but he did have a visual test under sedation last week to determine the abilities of the pathways. We are waiting for results.

Mitchell starts the week with 6 appointments including physical therapy, occupational therapy. visits to a chiropractor and early intervention from the state. In addition, we have multiple doctors to see on a regular basis. We are so appreciative of the caregivers we interact with and have faith Mitchell's future will bring continued improvement. More to follow on Mitchell...