Please donate to the MDA Muscle Walk! Here's Why...

Please consider donating to the MDA Muscle Walk of Central Pennsylvania for 2017. 

Our team is Max's Super Hero Squad. Want to walk with us? Mark your calendar for Saturday, September 30 at 11am at Hershey Park Stadium Track!

Click here to donate or Join the team!

What would you do if you went to the Dr. and they told you that you had Muscular Dystrophy?

Like right now, with all that is going on in your life...and that this condition you have "can progress."

Seeing what everyone is up to on Facebook...vacations, sports, races, busy jobs...I'll tell you what you would do. You would FREAK the _____Out! Then, you would go on with your day with many questions in your head...

You'd go home and people would ask, "So, What can they do for that?" And you'd remember the doctor saying that maybe you can get some CoQ10, because there isn't a cure or anything right now. One month supply of CoQ10:

This is the point I was AT two times in the last two years. First with Max, and then after being diagnosed with RYR1 Myopathy myself.

I have RYR1? What? You're kidding.

Many of you know the story about Max (diagnosed in November of 2015) and how we pulled him from his antiquated city school with lots of stairs and no AC in the third grade. How he had tons and tons of appts and therapies in the fourth grade (over 100), and how he loves going to MDA Camp and supporting the MDA as a local Goodwill Ambassador. (I just realized that MDA is his other "extracurricular." The second one is horseback riding therapy.)
Here is Max at Ride for Life 2017:

I was diagnosed by Dr. Wicklund at Penn State Hershey Medical Center, on November 28, 2016, the Monday after Thanksgiving. In the weeks following the appt, I realized what had been happening to me while I was busy over the last few years worrying about the health of both of my kids. (My daughter Mimi was diagnosed at the age of 3 with Growth Hormone Deficiency.)

I realized why my Fiesta Ware dishes felt like they weighed a ton. Why I felt trapped in my bed if my blankets were too heavy. Why heavy shoes or boots hurt my legs. Why I had been pacing our activities...do one big thing on a Saturday...home Sunday and Monday.

As weeks went by, the Aha! moments would come throughout each day and different tasks. My shoulders burning changing the shower curtain, realizing I barely lift my arms to wash my hair, realizing that my shoulders burn just shopping through clothing racks at stores- and realizing I'd almost stopped shopping from racks entirely over the last couple years. All these little things like putting a suitcase in a car and feeling very weak when I start to drive. Washing an IKEA glass cup filled with water and thinking...how much does this weigh?

Little did I know, that when my Max and I were burning red in the face in the heat (and no one else was), that we were actually at risk of organ failure and death from heat stroke. - a complication of RYR1. I remembered how if we planned to run in gym class in high school, I would get really annoyed, because I knew I would barely be able to concentrate in Algebra later that afternoon, as my face would be pounding with heat (for HOURS.)

As Max and I had multiple surgeries over the years,  we could have turned into an anesthesiologists worst nightmare and had an RYR1 Malignant Hyperthermia event on the table. (The National Institutes of Health made sure that Max and I both got Medic Alert bracelets.) His is orange and mine is green.


This RYR1 situation causes fast fatigue and muscle pain, and slowly progressing weakness. From like...your neck down. Ugh. You look pretty normal, you act pretty normal (LOL), but inside...your muscles do not react or recover like normal muscle. Instead, you pay a price for a whatever you do.

Max or I may be able to do something like lift a box, or walk up a hill...but wait for it...our muscles will really tell us later. They may even just sort of stop working mid-task. (ie. going up a hill at Hershey Park). They will burn, spasm, and weaken, and make us feel ill. The kind of pain like the flu. For an hour or so? No. Try, for a couple of days(!).

What has changed for me? 

I was used to adapting things in the house for Max, so I've spent my late spring and summer making it easier to be in my house and do the things I do every day. So, I have lighter dishes now, I don't feel bad using paper plates, I can make my bed easier with just a duvet, I bought easier to use shower curtain rings, lighter laundry baskets, a lighter broom, a dust pan that stands up (so I don't have to bend down and stand back up again). I got rid of things in the yard, so that I don't have to get them in and out of the garage every season. I got rid of heavy sweaters and figured out better things to wear- Yay for Polar Fleece. I realized that any tight clothing makes me ache later.
My shoes can't be at all heavy. They have to weigh next to nothing. I probably shouldn't carry a handbag. At all. (still figuring that one out...). Aha! moment...So that is why the "LL Bean Healthy Back Bag" made me feel like I dislocated my shoulder. Ugh.
Accessibility changes to our house are in the works...we will post more about that in the months to come! (Exciting but crazy, too.)

The MDA is Our Support, and They Need Your Support

What we're realizing is how Muscular Dystrophy is a chronic condition. It requires a lifetime of care.
(If you want to move in the US with this condition...you first check how far away the MDA Clinic is.)

We sit and wait to go into MDA Clinic, and others are in the same waiting room because they are seeing orthopedics for their broken leg. They are annoyed and want the cast off, and to be done with this. Well. Our care flows from season to season and to life between MDA Clinic appointments.

The care with MDA is so caring, professional, and complete. They literally organize the specialists to see you all at once, so you don't need to come back and forth to the hospital a million times a year if they can help it. The MDA doctors are linked to the other MDA docs in the country, so they are open to all research and trials and new ways of treatment. There is wrap around support from our local office in Harrisburg. Max's MDA Camp Director is AT his bi-annual MDA Clinic appts.

Max at MDA Clinic with Dr. Kumar...

Every week I am in contact with our support team at the MDA. We attend lock-ups, Harley Bike Nights, Shamrock visits, sponsor visits, special events, and this year, Ride for Life. Of course, these events wear us out. LOL...but they are fun! The work of our local MDA staff (it's a small office) is inspiring. The day before an event with us, they are somewhere promoting the work of the MDA. The day after, somewhere else.

The MDA kids are so brave, humorous, and bright. The kids develop interests that suit them like other kids, and they carry on. They fall down, and they get back up. They laugh at themselves and all the craziness that weak muscles bring (MD is messy!). You spill things, drop things, knock stuff over. They laugh and don't care. They LOVE MDA Summer Camp. They are close to their families who care for them. They are the coolest kids, with more hope than most adults will ever have.

Max with John, his one-on-one MDA Camp counselor, and with Mimi, his sister, at camp drop-off this year in June.

There has been so much research building up to this point....that some of the kids that Max is at camp with are reaping the rewards of  MDA researchers right now. Literally, some of his friends are gaining strength, they are not using their wheelchairs as much, and they are able to do tasks they couldn't before thanks to break-through medications.

Currently, for RYR1, there is a study right now at the National Institutes of Health testing N-Acetylcysteine. There is real research going on, and real hope- for us. There are real scientists (I can name them and email them!), who meet with each other both in the US and Europe- they are coming up with possible treatments, now.

If you or a family member ever needs the Muscular Dystrophy Association, you will meet people that support and inspire you, despite the odds. When you are weak, they are strong. When you need support like medical care, equipment, research, or someone who understands, you can call them. It's not now and then that you would hear from them. It's all the time. It's continuous care and support.
The children and adults with MD need ongoing care at the MDA Clinics around the USA, and the kids need to go to MDA Summer Camp...every year.

Take it from us, it's worth it. Thank you for supporting the MDA!

Join Us! Click Here!
Max's Super Hero Squad
MDA Muscle Walk Central Pennsylvania 2017

Many tests

Here we are starting 2017 at Hershey on January 3. Max and I stayed overnight for his sleep study. But first, I needed pulmonary testing, and a CPK level.  Here's my view from the pulmonary booth. I had 70% diffusion capacity (?) -so I'm on the low end of normal.

 Here we are in the blood lab. My CPK came back low, just like Max's. I am glad for that because it's right in line with our RYR1 (I bet if it had been really high they'd run some more tests.)

 We went to the outlets and then out to Fuddrucker's.

 And then he started the sleep study. It was really hard to get to sleep with all this stuff. And with people *watching* you. We are still waiting on the results of this a couple weeks later.

 We followed up at the end of the week with his lung doctor. The doctor ordered a 6 minute walk test to see if Max needs supplemental oxygen! (I bought my own pulse ox and he has good numbers with me.) He said to keep on the current Flovent and Albuterol and come in with every cold. He'll be on steroids if he gets a cold:(. We're waiting to hear on the sleep study to see if he needs BiPap.

What mail came today?

A few Christmas cards and this....addressed to me. Yes, it's for real. So are the weird muscle spasms I have throughout the day. Super duper.
But I am VERY VERY VERY thankful for the MDA.
If you feel extra tired, have pain doing simple things, and have muscle spasms...maybe go to the dr. It might NOT be that you're just getting older!
The new normal, Max and I...in it together:).

Our Household= Two Muscular Dystrophy Association Patients (?!)

Yesterday, November 28, 2016,  (One Year and Nine Days after Max was diagnosed with Myopathy), I had the day off and away from the kids to have two appointments with Max's neuromuscular doctor at Penn State Hershey Medical Center. Through genetic testing, I learned that I am Max's RYR1 Myopathy carrier. Because I have had muscle spams pushing Max's manual wheelchair, the doctor wanted to do an EMG on me. I thought that was a bit crazy, but I understood why he felt this was needed.

I could have a sort of Mom's day...

Then he asked that they schedule an appt with him following the EMG. So that seemed crazy and a little much or redundant. I mean...I know him already and would talk to him in the EMG.

So I went to Hershey for two appts.  Here I am in the parking lot at 9:15am yesterday.

Here is the EMG room after I had been electrified and needled.

I was not afraid of the EMG. I was afraid of what he could say...because the last two times I was in an EMG room, we were told that Max had a myopathy (and so began a year of appts.)

First, Colleen did the Nerve Conduction Study. She had done Max's...so it was a bit "DeJa Vu."

Then, Max's awesome doctor came in and we chatted and he began the test in my arm.

My forearm had small motor units. Abnormal.  My shoulder, small motor units. My upper back, small motor units. My lower leg, same thing. Other areas were ok or "relatively normal."

(UPDATE: The official EMG report is in and says, "Motor unit potentials of decreased amplitude and/or duration, with or without decreased recruitment, were seen in the tibialis anterior, medial gastrocnemius, rhomboid major, infraspinatus, deltoid, and flexor carpi radialis muscles." )

He tested 12 muscle areas and 6 were myopathic.

So, I am Myopathic. And, I have RYR1 Myopathy.

So...
That means:
I am not really lazy.
There is a reason that I like to wear comfortable clothes. Like really comfortable clothes.
Like clogs. Like yoga pants. Like shirts that don't have buttons.

I am not having age related fatigue, soreness, or muscle spams. I am having RYR1 Myopathy fatigue, soreness, and muscle spasms.

The Dr. had me sign the form that enrolls me in the Muscular Dystrophy Association as a patient.
I could not believe it. It's the form I signed for Max. He handed it to me very casually and I said, "Are you signing me up for the MDA? I cannot believe it."


I shall now try to make things a little easier on myself. Buy some very comfortable "sportswear" and not feel bad about it. And Max and I will frequent the massage chairs at the mall.

Every now and then I remember something I had trouble doing as a kid....like running in gym in high school, or being really tired after a big day out.
I have a much less severe case than Max. However, I could progress, and will have a followup with the clinic in one year, and a pulmonary test (in the booth like Max had) pretty soon.

C-R-A-Z-Y.

A Cold

This week Mimi got a bad cold. She gave it to me. Then Matt got it. Mimi had one of her check-ups at Dupont near Philadelphia on Thursday, so we all drove there with the three of us coughing. (She grew nearly two inches since the spring!)

We were worried for Max. On Friday morning he woke up with it.

Sticking to the new protocol, I gave him a nebulizer albuterol treatment and I called Hershey Pulmonary and left a message.
The nurse called me back and said that the doctor wanted to see him at 3:45.
When the doctor checked him Max was already wheezing.
At 4:30 we were out the door with a prescription for prednisone and augmentin sent to the pharmacy (to prevent pneumonia because Max will probably be unable to clear his lungs).
We then went to a local church Christmas bazaar (Max REALLY wanted to go- this only happens once a year). We tried not to stay long, we shopped and did fun things and he turned red in the face.

Stopping at the pharmacy on the way home, we had some trouble -the medications weren't sent in. So late Friday evening, there we were with a red faced child with MD and an upper respiratory infection and wheezing and nothing to give him but Albuterol. Finally, after several calls to and from Hershey 24 hour nursing last night and this evening, and around 1pm today, the orders were phoned into the pharmacy by the doctor on call (we don't know what happened).

This evening, Max is congested, pale, and has red bags under his eyes.


Today, he took 15 doses of medication.
Vitamin, CoQ10, Vit D, CoQ10, CoQ10, Augmentin, Augmentin, Prednisone, Prednisone, Flovent, Flovent, Albuterol, Albuterol, Albuterol, Albuterol.

Apparently, this will be normal for him? I have to get used to this is what we do. I thought when I called the office yesterday, they would tell me to have him checked on Monday, not come in later that day.
What happens if I call on Monday because he's pale and I think they need to listen to his lungs and it's another surprise finding? It's starting to feel like about every other time we are at the doctor with him I hear something else unexpected.

We will keep you posted...

"Windy"

Max creates such interesting "forms" with his simplistic drawings. I believe his weakening hands have played a part in his artistic style. He works quickly and to the point, and creates shapes with minimal lines. I LOVE his people like the ones here. The man in the road is wearing a hat and holding an umbrella.

He has done this before...representing soldiers in simple profiles. He also showed garden chairs in their most minimalist state.

I couldn't do this, I would add to much "stuff" to the picture.

"Windy" was created this week at Homeschool Art class at a nearby library. It was first time Mimi and Max were aged correctly to be in the same class. She was so proud of herself. We signed up for five more:).

How we Trick-or-Treated with Muscular Dystrophy

Happy Halloween from the French gang!

Whew, big sigh...we are back from trick- or- treating tonight! Max was diagnosed with RYR1 Congenital Myopathy this past year, so this is the first Halloween we purposely made adaptions for his health. (vs. just saying, "he's getting tired, let's finish up" like in other years). This year we know the "why" behind why he fatigues and we better know what to do. (Thanks Doc for running the big MD genetic test!)

It's 8:20pm though as I write this and everyone is bathed and in pajamas hanging out now:) Trick- or- Treat Lancaster County, PA started at 6pm. We were home by 7:10. But it went great!

To make this year a success, it started with the costume. A big no to the Storm Trooper helmet that weighs a ton and he fell in  wearing two years ago. No to the cool E.T. costume you make with a hoodie and a milk crate...as a crate with an E.T in it is too much to tote around. No to masks in case he trips. No to Ghostbusters as the large amount of equipment is WAY too much. (You should have heard him about that one. "NO. NO. There's SO MUCH with that one. Seriously!" No to Link from Legend of Zelda as that requires carrying a sword. And a shield. Add some pre-teen indecision fickleness and we thought we'd end up as our homemade idea, "Cereal Killer." but that included buying a t-shirt, mini-cereals, and glue, and blood ...well....we just kept looking.

Both kids were managed to be outfitted for $25 at Community Aid Thrift Store (which is like our favorite place in the world). It took a few trips and some patience looking through the costume racks starting in September- but we managed to pull everything together.
 Jessie= $8. Popeye costume= $10
Hat at Party City $7. I made the pipe and a can of Popeye spinach, added a pair of my Birkenstock shoes (Max and I are the same shoe size right now!) and Mimi wore cowboy booties and Max's old cowboy hat.
 
But most importantly: Everyone was comfy and both outfits wore like clothes. (Except I had to cut the arms of the Popeye costume as they came with a strange amount of uncomfortable elastic- I then resewed them to the shirt sleeves.) But that's ok. This can now be a costume we can use again.

Max was unsure how this whole look would go down.  I loved the sailor look of course. LOL
But, not too many 11 year olds out there 'dressin up like vintage Popeye. I figured it would appeal to his classic cinema/cartoon interest.
So how awesome it was to start trick- or- treating and to hear people affectionately say, "Hi Popeye!", "Oh my gosh it's Popeye! I love that!" "Popeye! That's the best costume I've seen!" and "Honey, look, honey, It's Popeye!"

So, How did we do the rest?

1. We walked slowly. We took our time. No rush. We had two hours. We didn't go with friends this year. Although that would have been fun, kids his age move fast, and um. We don't move fast. Both homeschool families we hang out with have very active kids, so we held off on going with them.

2. We carried band-aids and water. (In case.)

3. He did not go up to houses on hills. He let his sister ask for something for her brother and she brought it back for him. My awesome homeschooling neighbor came out to tell me that they would stay down on their driveway for Max since he didn't have his wheelchair. Thank You!

4. We crossed the street only when there were no cars, because he can't hurry especially if he's tired.

5. He tried to avoid stairs on houses. He stayed on the sidewalk of house steps if possible if a homeowner was sitting on the top step.

6. We brought a second empty candy bag and switched him to an empty bag half way through. Then we carried both bags home for him when we were done.

7. We avoided standing and chatting for too long and kept moving.

8. We stopped at the end of the block on the second street when the steps of the row houses on the second block suddenly get longer and steeper.

9. We walked slowly and carefully home.

10. When we got in the door we took a look at the clock and realized we had done it all in just over an hour.  "Whew we got so much candy. We are done now. Yay!"Then we changed out of costumes, inspected the candy, and hung out- waiting on the last hour of trick-or-treaters.

Trick or Treating with Muscular Dystrophy can be Tricky, but just remember to take your time and go slow. We found that the right costume that was easy to wear really helped (but also was the biggest dilemma.) If you will use your wheelchair, comfort will be key too. Make sure you can see where you are driving too and that your costume doesn't get stuck in the wheels!

In the next couple years of Trick- or -Treating we may switch entirely to a development that is flat with very few steps and employ these tactics again. We may also do a Halloween party at our house-which would allow our friends to hang out with us. We shall see!

Happy Halloween 2016 to You and Yours!

The Overly Dramatic Medical Family with the Wheelchair

Here we come into your event or store and low and behold...what's that we are getting out of our car...a wheelchair!

What on earth? Who in the car needs the wheelchair? The boy? What? Why? That family must be over the top or something. He looks fine. He just walked to the wheelchair. He's even laughing and talking! Gosh, well they must just be crazy people or something...He should walk. They are nuts.

This post is for all the parents whose children use a wheelchair and for people who still question why on earth our children are "Gasp!" in a WHEELCHAIR? (you must be kidding!)

My life over the last two years as a Mom is not one that I would ever wish upon you (even though you are really ticking me off....). I am numb at this point frankly. I'm not crazy. I'm actually a marvel of motherhood...my instincts knew that something really wrong was going on with my 9 year old.

Many, many people looked me in the eye during his early childhood and told me that he was just fine. But I had some lingering worries. Why did he drag himself to the car after amusement park days? Why did he moan and grab his head from headaches just after being in Target too long? Why did he limp at the zoo? Why did he walk very very slow out of the mall?

Max at the Brookfield Zoo in Chicago in 2013 with his sister and Dad. He barely made it back to the bus as he couldn't run or walk fast.
Very quickly,  he would  get very hot and sweaty, and would run out of energy. Like at the end of year preschool picnic...

 

At the gardens we visit in the summer...

and after dancing after the MAGIC convention, where we needed to take him back to the room.

We took my son to his doctor when his teacher told him that although bright, he'd never be able to do middle school work, high school work, go to college, or get a job with his attitude (head on desk, rolling his eyes). We took him to the doctor after that because we noticed that his penmanship had changed significantly too. His posture was suddenly poor and he wasn't able to complete his work at school. His doctor looked worried. And so began a year of testing.

It took a long time to get into the specialists we needed to see. But we started to notice that he really turned into a rag doll after about 15-30 minutes of walking around. We didn't know why. People with doctorates didn't know why. Some looked at me with a snicker and said that some kids are just low tone.

But the tests came back, and then more tests were ordered. My son had a rare form of Muscular Dystrophy called RYR1 Congenital Myopathy. He could have been diagnosed when he was younger but of course, MOST children are perfectly fine, and MANY mothers (like me) are Looney Tunes.

So. My son, the one laughing and talking (and walking!) to his wheelchair, is going into a store or into the event seated, instead of walking around or standing. He's in the wheelchair so that he can continue to laugh and talk and not turn into a rag doll and completely lose the contraction of his muscles throughout his body. By sitting, he won't fatigue within half an hour...maybe we can stay there for an hour today. (We started to leave places very very quickly, but with his wheelchair we can stay longer.) By not becoming fatigued today, his muscles may last him longer in life. Literally. If it's hot out, he may not get heat stroke and won't experience exercise intolerance after 15 minutes. (Both part of his condition).

When my son uses his wheelchair, I know he is safer. I don't have a panic feeling, worried that he is running out of batteries. He laughs and talks and almost runs me over.

So, I'm not crazy, and we're not a crazy family. We're excited that our son can hang out with us and stay out with us longer.

Max, first time ever in his wheelchair at Costco on February 13, 2016. About 35 minutes into shopping, he asks me, "Why are we here for so long?" We realized we hadn't taken him to Costco in years!


If you see someone in a wheelchair, believe us...there is probably quite a story behind it.
So you can just be numb to the whole wheelchair thing, and say hello or hold the door for us. That's what we find is nice:).

Restrictive Lung Disease? At Eleven Years?

Max met with his pulmonary doctor for the first time last Friday. It was also Mimi's 6th birthday.
I thought all would be fine so I didn't mind it was her birthday morning. Max's myopathy has a mild to severe lung problem prognosis...so at eleven, we would think he would be fine now.

We headed in, Max playing on his DS. Hanging out in the waiting room. I'm drinking a coffee. We've gone to over 100 appts and therapies in the last year, so we are very used to all this.

The therapist takes Max back and begins the pulmonary testing. Max tries to do what she says but there are a lot of directions, and that's hard for him. (part of his condition). So she tries again and again. At first Max can only breathe out 44% of what of it expected. She tries a few more times...better. With Max trying his absolute best...he scores in the 60's and 70's. As you may imagine, I have no idea what this means. Do you? So we head off into the patient room to meet with the doctor.

The doctor comes in and starts getting a medical history. For the first time really, since the genetic appt over 14 months ago, I go into detail about the odd recurring bouts of pneumonia and bronchitis that Max had in First Grade. He responds saying that Max isn't able to expel all his breath and so he is sure that 4 years ago, Max would get a virus at school. It would then never totally clear, and he would keep getting bronchitis type illnesses. Back then. Four years ago. Because of his muscular dystrophy. (I think back to Max being exhausted and trying to keep up with school work. About the meeting when they thought he may have ADHD, which didn't make sense to me.)  So, in addition to him fighting through his day with weakening muscles...he was fighting ongoing infections in his lungs because his lungs weren't strong AND NO ONE HAD A CLUE!

He said that he wants to quantify the results he had with the therapist, by sending him to Hershey Pulmonary testing and putting him in a booth type room that tests what is happening with the muscles in his chest. He said he could tell from listening to his chest as well, that he was not getting rid of all of his air. 

He said that he is at risk for infections in his lungs. He said he thinks he has Restrictive Lung Disease. He put him on Flovent 2x in the morning and 2x at night. He ordered us a new Nebulizer and more Albuterol. He said that Max may need the cough assist machine and the VEST. (the Vest is what the Cystic Fibrosis patients use.) It vibrates their chest to expel any mucous. 

Max was tired just from the pulmonary testing. My mind started to go into a blank sort of shock. I had interned in my senior year of college at the Cystic Fibrosis Foundation in Harrisburg after two of my friends has died of it. On the doctor's jacket it says, "Cystic Fibrosis." So he's the CF dr... I know about that world. I don't want my son to need anything like that." I think.

I asked him, "So...what do we do if he has a cold...or a bronchitis like cough?" I said, "Should we call his primary doctor because I would think he would be worried for Max." and he replied with a laugh, "You need to call me. You would need to see me." He then told me what days he is at the Lancaster office and what days he is at Hershey.

The therapist came in and brought in an inhaler sample with a spacer. She taught us how to use the spacer. The doctor ordered the nebulizer machine and scheduled his follow up for in 2 months or sooner if needed. He said that Max needs a chest x-ray also.

I came home and looked up the VEST and it's between $4,000 and $8,000. It comes in a duffle bag, so you can take it wherever you go.

We are so thankful for our insurance. I am shocked by all this. I thought this was years and years away.

We have started the Flovent with the spacer. The notes came back too from the doctor. Depending on the results of the next two or three tests, Max may need a BiPap, Vest, and Cough Assist.

We also need to understand that Max goes to Hershey for colds/bronchial symptoms now. 

It's life changing, for sure. And just in time for winter.

I am so glad that he is homeschooling and that we are used to it. I also am relieved that Mimi is homeschooling too. Can you imagine if she came home with every virus from school? I cannot even imagine.

UPDATE November 4, 2016: The pulmonary test is back and confirmed that Max has a mild Restrictive Lung Disease due to his muscle weakness. His test matched what he showed during his office visit.
They are glad that the sleep study is scheduled for early January. May need extra oxygen during sleep they suspect.
Still the same protocol for him right now. Flovent and use Albuterol every two hours with colds. - call the office if he has a cold in case he needs supplemental oxygen/more intensive treatments.

Art with Muscular Dystrophy

We do many art projects at our house. As Max's hands get weaker, we still make art pieces. It is calming for everyone involved:) It is interesting to watch what Max will do to accomplish his task. He will work fast, and boldly as his hands don't have a lot of strength.
I pushed him with the Starry Starry Night above, and he came back later and checked out his work, and couldn't believe he had done that.
He loves pastels because they are very smooth and go on quickly.
Another thing he does is express what we wants to in the shortest way possible. Sometimes that's just with a fast line.

And even with hand weakness, we still managed to introduce and practice cursive. He proudly "signs" his name now whenever asked.:)

Medic Alert

It arrived today- Max's bracelet.
He should wear this everyday forever. It's orange because it's his favorite color. It's thin because it's the lightest weight. Hopefully, it won't bother him.
It says on the back, "Malignant Hyperthermia. Muscular Dystrophy."
Now we need to order Mimi's and mine.
A new chapter...