RPM

Rapid Prompting Method.... and life

I have wanted blog about this topic for some time, but I am busy. I clean a lot. I'm Vice President of the PTA. I have things pulling me in different directions all the time.
During the school year, Elodie and I stay home during the day. She and I run errands, go to storytime at the library, have playdates and go to music classes.  She hasn't napped, regularly, since she was 16 months old. There were 2 days last year that she napped, while my big kids were at school.
Lyla is also a busy social butterfly. She does tap, sewing, Miler's Club, Odyssey of the Mind and piano.
Add Aulton to the mix and I live in my car. He still does OT, PT, speech and hippotherapy every week. And lots of doctor appointments. I have moved some of his specialists to Tucson, which is helping.

PCP - Tucson
Neuro - Phoenix
Sleep Neuro - Phoenix
ENT - Tucson
Endo - Tucson
Opthalmologist - ? (guess I should figure it out)
cardiologist- Phoenix
Immunologist - Phoenix
GI- Phoenix
dentist - Tucson, looking for a new one in Tucson
Pulmonologist - Phoenix
Orthopedic - Tucson

I'm having a difficult time leaving the doctors in Phoenix. Most of them have worked with him since he was a baby. They know me, they know about my family, I know about their families, we can have friendly banter and most of all they KNOW Aulton. I don't even have to use his last name. He's just Aulton. They know he doesn't follow the rules, they know he is complex, they know that there aren't usually easy answers, but they work hard to help me figure it out.

There are some amazing doctors in both places and there are some amazing people here. I'm so incredibly happy with his therapists. We are doing different things in therapy and I think the shift has really helped him. He is making tremendous progress and I owe much of this to my friend, Amy Greiner.

Amy is probably the first person I actually sat down and talked to who has a special needs child in Tucson. I saw her, on Facebook, discussing this communication system, Rapid Prompting Method (RPM), she was using with her son. She was so passionate about it and I started asking her questions, I read a book she recommended. If you ever want a glimpse into the mind of a teen with Autism, I can't say enough good things about "Ido in Autismland". Read it and your mind will be opened, like mine was. After reading the book, I decided to meet Amy and learn more. She agreed. We had a good talk, but I didn't think RPM would work for Aulton.

There are only a handful of instructors that teach this method. Amy arranged for Lanae to come to Tucson and invited Aulton and I to do a few sessions with her. It was amazing! I told her from the start, he is cognitively delayed, he has several diagnoses, etc. She just dived right in and Aulton was answering questions that I didn't have any idea he knew, he was spelling words, using a stencil letterboard. This is absolutely incredible!

I started writing lessons and doing RPM nearly every day. This is how it works. You create a lesson on any topic.... that is age appropriate. I thought I could just write lessons about Dora and Diego. Nope. I started with lessons about things he's really interested in; water, horses, hair. You say a sentence. For example, today I will do a lesson on "Kites".  It starts like this, "To fly a kite, you have to have the right kind of kite and the right kind of weather."

Then, you ask questions about the sentence(s) you just read. So for this lesson I would start asking,
1. What are we talking about today?
2. What is a kite?
3. What do you need to fly a kite, besides the right kind of kite?

I give him paper choices and he points to the correct answer. For example, on the first question I would say something like "Plants, P-L-A-N-T-S" or "kites, K-I-T-E-S". I think this may be a reason God made me a good speller. You spell everything. He points to the word(s) he thinks it is.

After that, I move on to more details about the topic, saying more statements and making him spell words. During those questions, I will have him spell KITE and WEATHER.

My lessons are short because we have only been doing this since January. This lesson is 26 questions long. I have been making a log of the lessons and his scores. He normally gets around 86 percent of the questions right. I didn't explain to him what a kite is, in the first sentence, because I have figured out that there are already things he knows, without me explaining. I still ask, to verify.

I'm learning all sorts of things about my 11-year-old. I now know that his favorite color is orange, I know that his favorite zoo animal is a monkey, I know he likes looking at the cactus on the hill behind us, I know he hates Valentine's Day. I love learning these things. I have explained this method to a few people. Many are skeptical, but if you know Aulton, you are a believer. One of my relatives, who is not as familiar with Aulton, said that the things I was learning are trivial. They are not! I think she may forget that she can ask any of her kids what their favorite color is, she can ask what animal they most want to see at the zoo. These are simple questions. Elodie's favorite color is green and she loves koalas. Lyla's favorite color is red and she loves giraffes and she recently discovered hedgehogs and squirrel monkeys.

I cannot stress how much I love knowing these things about Aulton and I learn more all the time. When Aulton did some testing, in Salt Lake, in February, we met with Lanae again. She lives in Draper. She told me I need to start inserting more personal questions into lessons. Aulton is eager to answer them. I ask him questions about himself all the time now. Today, I will ask him if he would like to fly a kite. If he answers "NO", which I am predicting, I will ask him if he wants to go to the park with the girls and watch Lyla fly her kite. He might say "YES".

There are several reasons to do RPM, besides getting to know a person better. One primary purpose is to help your child have open communication. Many children and adults using this method, are spelling complete sentences on letter boards and having a conversation. This translates to being able to put your words onto an Ipad or computer. It also helps with motor skills. It takes a person with Autism a ton of motor planning to do relatively simple tasks. It also requires a lot of thought and sensory involvement . There are many things I do with RPM lessons to help with this, but they are small changes that are hard to explain. Everything has to be done in a very precise, super consistent way for it to be accurate. Lanae is coming again, in July, and I can't wait to learn more and make my process better.

Since starting RPM, Aulton has an increased body awareness. He knows that I know he understands me. This is huge. I have started talking to him like a regular 11-year-old. I was doing that anyway, but I often talked over him. I don't say anything even slightly negative about him, when he is within earshot.

These are some of the changes I'm noticing:

• He tried 5 new foods in one day, without gagging and with hardly any resistance.
• Something that is not supposed to happen during puberty did
• He responds to simple requests. Like stopping for a picture, or turning around to hug someone
• He is doing better in every therapy. Listening to directions and remaining compliant (as usual)
• He's interacting a bit more with his sisters
• I still read Dora, but we have almost finished with "The Diary of a Wimpy Kid"
• He is happier
• He uses more eye contact
• He is more engaged with people he knows
• He is more verbal. Last week, during speech he said (verbalized) "I LOVE YOU" Think about w
• hat that means, every time your child says that to you. I know Aulton loves me, but to hear him say it. Indescribable. He also says "done" very consistently, "hug" and many other words. His language skills are improving. The first week we started, he said three words. This is huge!
• He walks with more purpose. Today, he climbed the stairs on the bus with no help from anyone. Last year, he was using his wheelchair to get onto the bus. 
• He has more confidence
• He's made serious progress with toileting

This is not to say there aren't struggles. I mean, Trump is still president, right?!  Aulton is getting bigger and bigger. He weighs 108 lbs now and is eye level with my nose. He starting to look like a young man. We have to shave his mustache and put deodorant on him. He still requires a lot of care, but I am very happy. Before his surgery in October, I started exercising so I would be strong enough to carry him. I liked the way it made me feel, so I continued to do it.

My kids are wonderful, incredible blessings in my life. RPM is a blessing to us. Aulton, Lyla and Elodie are super well-behaved and so much fun. Summers are busy and sometimes difficult, because I get very tired. However, I have looked forward to this summer for a couple of months. I love spending time with my kids. All 3 of them teach me things I never would know, they require me to think outside of the box and with positivity. I have felt a little guilty that things are going so well, when I see friends struggling, but I am working on enjoying the reprieve and treasuring the healthy moments with my children. They don't last and I never know when they will end. Aulton will have another surgery in a few months and he could feel poorly for a bit or he could bounce right back. The most important thing is that I have friends who are happy for us, when things are going well because they travel this road, in Holland, with me. I also have a family that is super supportive of all I do and right now that means that I'm trying to be the very best mom that I can be.

January 11 - Day 132
Drug Trial Completion

Eleven is my lucky number and January 11th was definitely a good day. There were some really positive things that happened during the final day and I'm really happy and relieved to have completed it.

This visit was also a one day visit. I drove to Phoenix on Sunday and spent the afternoon visiting with a friend and holding her new baby. There's nothing in this world much better than a fresh-from-Heaven-baby. Thanks Whit!  I went to dinner with one of my closest friends, Suzanne, who always makes me laugh. We spent 2 1/2 hours catching up and it did my soul a lot of good. I spent the night at the home of the world's best parents. I woke up at 5, got ready, went to Salt Lake, did all the testing, got back on the plane, and drove back to Tucson.

The road between Phoenix and Tucson is a little desolate and there are not too many cars in the evening. The dark, quiet drive gave me quite a bit of time for retrospection. I found myself crying, due in part to sheer exhaustion and in part to thinking about this study and what it means to my family.

I thought about that saying, "I can do hard things."

This statement means something different to everyone. I see posts on Facebook about this all the time. Sometimes it drives me crazy when someone gets a lousy haircut or their kids get shots and they use this statement as an explanation of their feelings. However, that is neither here nor there and it doesn't make their hard things less legitimate than my hard things. Regardless, I was thinking only in terms of the study, which is MY hard thing most recently.

Then, however, my thoughts drifted to hard things I do daily. I change a 10-year-old's diaper every day, I lift that 4 foot, 6 inch boy several times every day (off of his bean bag, into his chair at the table, out of the bathtub, etc.), I help all 80 pounds of him in and out of the car several times a day, I take him to lots of appointments for therapy and to the doctor every week. During those appointments I watch him struggle. When I see him trying so hard to say a word or complete a task and he is frustrated, my heart breaks a little, but I keep smiling and encouraging him. I decipher what his body language, sounds and, sometimes, tears mean every day because he can't tell me. I put needles in him every week. Nothing comes easy to Aulton. Nothing. He needs help getting dressed, eating and turning on the TV. BUT, he is happy despite the struggles. He is the one who uses the "hug" button on his augmentative communication device more than any other button. His love is unwavering, unconditional and the purest I have ever encountered. His love for me is fierce and it is strong.

My love for him is fierce and it is strong. I know mothers usually feel this way for their children, but hopefully they see a lot of triumph that makes hard days easier. I see Lyla doing things that come so easily. She is good at almost everything. I see things come naturally with Elodie. I love to hear the emerging language and watch as she discovers and embraces everything in her life.  I rejoice in every success my children experience. Aulton's are so different. He works so hard for everything. Everything.

I'm not using these experiences to make myself feel proud or even to make anyone feel bad for me. I want to use them to help others understand what a drug could do for Aulton's life.

I want him to struggle less. I want to see fewer doctors and I want him to gain more independence. You can bet the current amount of the Powerball that if there is something I can do to help him, I'm going to do it. And, I would make that choice every. single. time.

This drug is the solution! This trial is my opportunity to help. It is essentially the key to making Aulton's life easier, to watch him struggle less.

When Aulton was initially diagnosed with Myotonic Dystrophy, I heard a lot of people throwing around the word "bittersweet." They said, it was good that I had the diagnosis because I could anticipate what lie ahead, albeit a little sad because the disease was confirmed.

Bittersweet is not a word I chose to use in that situation. I tried, but I was 25. I was shattered and I needed to grieve in my own way on my own terms. It was bitter and I was, for a time, too.

Aulton was almost a year old when he was diagnosed. I lost the boy I thought I was going to have. People, even doctors, had been telling me he was going to catch up, his delivery was rough, maybe his due date had been wrong. I'm not sure if my heart always guessed the truth, but I clung onto those thoughts that things would be normal and I didn't let go until that phone call.  Of course, I went through the natural grieving process, which is a topic for another post, but it was really, really difficult. I'm eternally grateful for the amazing people who stuck with me during that time and they definitely know who they are. Although they are few in number, they mean the world to me.

I rarely use the word bittersweet because of this situation. When someone uses this word,  I always thing that whatever a person is referring to has equal parts of bitter and sweet.

Fortunately, I don't consider myself bitter anymore and Aulton's life is mostly filled with sweet. The kid is practically made of sugar. The trial, though, is something I would categorize as bittersweet. I'm equally happy and sad it is over and is progressing. I am so incredibly grateful that I could do something, but am also sad I can't do more.

Bitter Parts:

Me and Susan

• Moving. Moving and participating in a drug trial do not mix. 
• Pneumonia. Pneumonia is tough. I did two 24 hours blood draws. It is tough. Dealing with both pneumonia and giving bags of blood simultaneously is difficult.
• Planes (and the people on them). On Monday, I sat next to a man who ate sunflower seeds and spit the shells into a plastic cup for an hour and 11 minutes. Sunflower seeds are not a plane snack. Early in the study, I sat next to two "nice" guys, who eventually offered to drive me to my hotel. I'm not an idiot. 
• Bruises. I've still got four on my mid-section, one large and one small on each thigh and bruises on my arms. I showed the ones on my arms to my friend, who said it looked like Mike was gripping my arms and shaking me. Lovely. They will look even lovelier when swimsuit and short sleeve shirt weather arrive.
• Fatigue.  I intentionally chose travel times that would require me to be gone from my family as little as possible, while still meeting the time constraints of the study. In the beginning, this meant I usually arrived in Salt Lake around 11 pm, so that I could be up early and make it to the hospital on time, on Monday. The last three visits, I have done all my traveling on Monday. It's tiring.
• The Study People. I have a love/hate relationship with the people who hurt me. The nurses, Dr. Nick Johnson, the PTs and the study coordinator, Susan, who doesn't hurt me, but makes me fill out lots and lots of papers
  
  

  

  Incredible Nurses: Kathleen, Michelle, and Tami

  
  

The sweet parts:

• Moving. The move allowed my husband to stay home with our children.
• Pneumonia. Yeah, that one is still really hard, but I was at a hospital round the clock for most of my visit. There's not really a better place to be when you have a severe, active case of pneumonia.
• Planes (and the people on them). Sometimes I met really great, kind people. Like the young guy who was traveling to San Francisco for a conference on autoimmune diseases. When he pulled out his bag of cough drops and told me he was sick, he didn't bat an eye when I put on a face mask and told him I have Lupus. I also met a sweet woman who had just divorced her husband of 12 years. I just listened.
• Bruises. Proof that I have something that could cure Myotonic Dystrophy running through my body.
• Fatigue. Like I mentioned, I missed as little of my family as possible. I still volunteered at school. I still did parent teacher conferences. I took Aulton to therapy and the doctor. I played with my kids. I read to them. I still moved my family to Tucson (and did everything that goes along with that). I still celebrated the holiday with family. I didn't miss too much. 
• The Study People. They hurt me because they care about this disease and want the trial to be successful.

Bittersweet.

November 18- Day 72

I only have a few minutes before I board my plane.

Today was nearly identical to my last visit except I did not have a muscle biopsy. I saw a new doctor, Dr. Butterfield, today for the EMG and there was a change during that test. There was also a positive change during physical therapy today. I can't go into much detail about either of the changes, but they are good.

I'm definitely a full-fledged Arizona girl. I saw some snow flurries today, which almost made freezing worth it.

I'm excited that I only have to come to Salt Lake City for this test one more time. I am ready to return to Tucson and finish getting my house ready. I don't have many spare moments at home. I have almost completed the unpacking. I spend hours on the phone getting Aulton settled with doctors, therapies and primarily his state services.

Today has been really tiring and it's not a great way to head into the week. But, on the positive side I'm not coming back until January, so I can really focus on the kids, our new home and getting ready for the holidays.

If anyone is still reading this, I won't report anything until my next visit, so I hope you all have a Happy Thanksgiving (my American friends), Merry Christmas or a Happy Hannukah and a very Happy New Year to all!!

Thank you for all the support! Love, Nikki

October 19 - Day 50

"Where is my bag of needles?" 

This quirky statement by Dr. Johnson, today, basically sums up my day at the study. I wish I could report the findings from the EMG (the test where he inserts a needle into my calf muscle 20 times to measure the electricity and mytonia in the muscle). I can't reveal anything about that or anything that happened during the 2 hours of PT I did this morning. However, I can tell you that the muscle biopsy still hurt, even if the doctor didn't hit a nerve. 

I'm thankful that Susan, the study coordinator, tried to distract me by talking about my kids' Halloween costumes and my new house in Tucson and let me squeeze her hand during the particularly painful parts of the biopsy.

Day 50-  it's a huge milestone in this study. I've been to Salt Lake City 9 times now. I have received either dosing of a drug (or placebo) that's been coursing through my veins for 50 days and has left significant bruises on my stomach and thighs. 

My flight left at 7:30 this morning and I'm back at the airport, waiting to return home. Today, I didn't receive any injections. I have to come two more times, once in November and once in January. I'm happy to be able to have my life regain some normalcy. 

Since I'm done receiving dosing, I was able to give some feedback on the study. I have a few recommendations for the future, but I really am not allowed to mention those either because of the impact those suggestions can have on future studies. 

I wish I had more to report. I am eternally grateful to my husband and my parents for taking care of those kiddos for me. I could not have done this without their help and if anyone, who is affected by this study, is reading this, I hope they say a quick prayer of gratitude to those amazing people, who have made it possible for me to participate in this trial.

I'm going to go home and move to Tucson in 4 days. My "to do" list is getting done. The movers will still arrive tomorrow, they will still move us to Tucson on Wednesday, the cleaners will still come Thursday and everything will work out. I will hopefully report more in a month. 

By the way, Salt Lake City is pretty easy on the eyes on this colorful, crisp Autumn day. :)

October 5 - Day 36 - Dosing and 24 hour blood draw

Bravery and Strength

People keep telling me I'm brave and strong and while I really appreciate the compliments, they are simply not true. Aulton is brave, Evan is brave, Steve is brave, Dallen is brave, Jay is brave, Baby Mark will be brave and Kayla is brave. So are the many other children fighting this disease every day.

I can only really speak for Aulton, but he is one amazing kid. The stuff he does, with a smile on his face, astounds me and is a gift. If he can go through everything he does and continue to be happy, doing this study is something small that I can give to him.

I have not been looking forward to today at all. It is the 24-hour blood draw. So far, my blood has been taken 8 times. Before I leave, tomorrow, it will be taken another 3 times. Sometimes it's just 3 tubes, sometimes it's 8.  My blood pressure has been dangerously low and all these draws do not help. Last week, it was 87/52. This morning it was 89/60. The nurses always think there is a mistake. It is never a mistake. I will have vitals done, again, in the morning and it will be interesting to see how much affect the draws had on my blood pressure today.

My handy-dandy IV (Yes, it hurts).

Today is the last day I actually get any injection. I got this one in my right leg and it still hurts (8 hours after the fact). I only am coming to SLC three more times; once more in October, once in November and the final time in January. I heard, this morning, the new group has to do 6 extra weeks. The purpose of this phase is really to determine how long the drug stays in the body and how high of a dose is tolerable.

I was really healthy while we went to San Diego,

3 of my favorite brave and strong ones

but last night at the airport, I started to feel really sick. I just wanted to sit down and have some water. I got really dizzy and it felt like I was walking in a fog. After I got some water, sat down and ate some fruit I felt a lot better.

I didn't get much sleep last night and my eyes are blood shot and I woke up without a voice. It has slowly returned, but these last 3 visits would have been so much easier had I been completely healthy, but that is not what a body with lupus and myotonic dystrophy does.

While things are not perfect, I want to get a little bit more into some of my feelings about this study and how I think God is involved. If you are bothered by spiritual discussion, now would be a good time to stop reading.

When Mike and I decided that this was something I should do. We didn't know how we were going to make it work, It helped that my mom doesn't work on Mondays and that my dad is Superman and helps with my kids all the time, but.....it's a lot of traveling. It's a lot of time to be away from my kids. Mike just said, "I don't know how we will make it work, but we will."

So, I signed up for the trial without having an idea who would take care of my kids, but feeling the calming presence of the Spirit, letting me know they would be taken care of.

On the very first day of the study, as I was driving around looking for a drugstore because I had forgotten a comb and chapstick, Mike called me. He had been offered a job at Raytheon, in Tucson. He had interviewed for this job many times, with different people, over the past few months. Due to the type of job it is and the way that it may change our lives, we knew that he would accept the job if they offered it to him. I prayed about it that night and so did he, but we both felt really good about it. So, the next day he accepted the job. Voila! Who would take care of our kids? Mike would. He no longer had the stress of a billable hour requirement. He found ways to get all his work done at home and after he gave his notice, the big cases  - the time consuming ones- stopped coming to him. Freeing up time to take kids to appointments, be home when they were home, etc. Heavenly Father swooped right into our lives and made everything work out better than I could have imagined. I could not have planned this myself and it is not a coincidence.

While Mike was interviewing, there were always the questions revolving around Aulton. Where would he go to school, could I find therapy, respite workers, what would I do about transferring his state services, how would I change his IEP. Moving is a lot of work, it is more work with Aulton. But, I told Mike that God has a hand in Aulton's life- ALWAYS. I have found this to be true over and over again. If we are supposed to be in Tucson, God would make it work out for Aulton, as long as I did my part.

It's a big part. I spent the first two weeks of the study on the phone. I had a lot of down time and I wasn't ignoring any kids, while I called schools, agencies, posted questions on Facebook groups, communicated with other parents of special needs kids and made lots of lists.

The first weekend I was home, I had found a realtor, she had time on Saturday and we went house shopping. I planned for this to be a long process. We want a single-story home, with a pool and three garages and lots of other things. We found our new home that day. It was the cheapest home we looked at and by far my favorite. I fantasize about this house constantly. You do not find your dream home, the very first day you start looking UNLESS God is helping.

I have found a school for Aulton, I have found a school for Lyla, I've worked out some of her extra-cirriculars, we close on our house in two weeks, Mike starts his new job next week. Things are falling into place. I still have an incredibly long list of "To-Dos", but things are getting checked off.

Has it been hard to do a study and plan a big move simultaneously? Absolutely. Has is been worth it? Undoubtedly. Is God in the details? I've never been more sure of anything.

I'm thankful he helps scientists cure diseases and I'm thankful for his hand in my family's life. It is always there, but sometimes it's so very obvious that I cannot deny it. If I have any bravery or strength, it is because of  Him.

Days 15, 22, and 28  - September 14, 22 and 28

Constants 

There are a few things that are constant about my trips lately. I'm always going to have to wait in the security line at the Phoneix Aiport, I'm always going to be cold on the plane, I'm always going to be tired when I arrive in Salt Lake, I always take the same cab with Mohamed from Sudan and the injections always hurt.

At this point in the study, I can't really go into much more detail. I am pretty confident about whether I'm getting the drug or not, but I'm really not supposed to say on any type of medium. So, I don't have much to report, which is part of the reason why I didn't blog about anything two weeks ago. I also kind of ran out of time. During my hospital stay, my cousin, Machelle, came to see me and pick up some baby things for our other cousin who is having a baby. When I got to the airport, there was a really long line for security due to a DoTerra conference that had just concluded. I ate lunch and boarded the plane.

That's a lot of steps for a "normal" day

When I get home, I just go back to normal life, except that I usually have one or more body parts in pain for a few days, but not any extra time for blogging. On a related note: I had listed one of my symptoms, earlier, as muscle pain in my left quad. I vacuum nearly every day and I realized that I push the vacuum off of that leg in exact the same spot every time it propels forward. Muscle pain explained.

Today, my appointment is super easy- dosing and done. That's it! I got the injection on the left side of my stomach today (there's bruising on the right). It was painful, but less so than some of the previous injections.

My appointment last week was on a Tuesday, due to the clinicians all being gone that Monday. My Monday was a normal day, though. So, it was no surprise when I finally got in bed, that I had walked over 5 miles that day due to taking care of my house and kids, then, walking
through airports. I was pretty exhausted Monday night. I was also battling a cold that turned into a sinus infection. I was ill all week, but have been taking lots of medicine and antibiotics and my awesome husband has been letting me get lots of rest. I'm feeling pretty good today. I may be on the upswing.

Me and Jay 3>

Tuesday, I did a little bit of physical therapy, gave my blood and urine samples, had another EMG and got the dose. When I was walking to my room, before all of that, I saw a cute little boy resisting the 6 minute walk for the CMMD study. I only glanced at him because they try to keep some anonymity with the various studies. I asked if I could go talk to them when during a break. I found out that it was Sarah and Jay! Who live in Phoenix! I have talked to Jay's grandma many times about getting together, but it never quite works out. Sarah was so sweet and gave me the biggest hug right away. This is one of the things that helps me do this study, thinking about and actually seeing the kids.

My Aulton

So I wanted to give an overview of what is happening with Aulton lately since I can't discuss many specifics of the study anymore. The constant with him is that every time I feel I get a grip on a new "problem" in his life, we get hit with something else. We always deal with it. I will explain what's happening with his diagnoses right now starting with the most significant:

Myotonic Dystrophy- Aulton still has generalized muscle weakness. He also has started to get myotonia in localized parts of his body. Most notably in his GI system. We have been able to regulate it with a new round of meds. It is kind of hard to keep track of them all but it has straightened things out. He also has severe tightening of his heel cords, which is why he requires leg braces. We are going to start seeing an orthopedic surgeon who will put Botox in those muscles to see if we can get them to relax a bit. We will know after a couple of doses if it is working. If not, we will start thinking about surgery to cut and lengthen those heel cords. Aulton's organs (also muscles or at least composed of muscles) are doing well. His heart looks good, for which we are extremely grateful. His lungs, although compromised right now due to catching my cold, are good. We still do percussion vest treatments nearly every day. His eyes are near-sighted, but he is old enough that the doctor is no longer worried about him losing vision in his weaker eye. He doesn't have to wear his glasses all the time and we don't have to do eye drops anymore. He will continue to have more muscle cramping as he continues to grow. I don't know how much muscle pain he experiences right now. He continues to see physical, occupational and speech therapists outside of our home every week. He receives speech and OT at school, as well. Aulton has significant cognitive delays. Unfortunately, this new drug does not affect the brain at all. However, I choose not to focus on that, as he will really enjoy running, keeping up with other kids and jumping. And, I've always thought of that as something I would see in Heaven, but seeing on it on Earth, would certainly feel like Heaven. Aulton does know that he is loved completely, 100 percent of the time and that is extremely important. He also will be able to "miss" the hurdles that myotonia causes such as swallowing problems, cataracts, problems lifting, trouble breathing, cardiac issues. Myotonic Dystrophy can be a debilating and deadly disease. I know Aulton is doing great, but it's something I can't take for granted because a lot of people really suffer from this disease.

Autism - This is a tricky diagnosis because Aulton's neurologist, who specializes in myotonic dystrophy, says there are so many characteristics that the diagnoses share, so he may or may not have Autism. However, he has the diagnosis because he gets more services and he displays so many ASD traits that the treatment of them is the same. Aulton is non-verbal and uses an augmentative communication device to talk; he requests things and makes choices. It empowers him at home, school and therapy. Aulton has limited interaction with peers. He is in a new classroom this year, where all his teachers and classmates are new to him. This has been an adjustment. He has limited eye contact depending on his interest in what is going on. He also has quite a few stimulating behaviors that I will discuss in another section, as most of his diagnoses cross over.

Common Variable Immunodeficiency Disorder (CVID)- Aulton was diagnosed with this disease about four months ago. We have given him 14 infusions. For him, the infusion consists of putting two needles in subcutaneous areas weekly. The needles are filled with human antibodies, taken from donated plasma, that we load into a large syringe. The syringe has a pump that disperses the syrupy liquid into the two sites for about 50 minutes. I still hate this. Probably always will. But, it is getting easier. If we manage to do everything perfectly, Aulton sleeps through this. Mike and I have created a little tag team to make sure we don't make any mistakes. They still happen and then, Aulton wakes up, tries (and sometimes succeeds) pulling the needles out. He cries, pinches and is just generally pissed off. I would be too, if I woke up to someone putting needles in me. The next day is sometimes rough, depending on how much pain he is in. We always give him Tylenol the next day in case he has headaches, a common side effect, or is any pain. This disease is just part of Aulton's DNA, it is unrelated to the other diagnoses he has.

Epilepsy- Fortunately, Aulton has not had many seizures since he started medication. He had a petite mal seizure this summer and every once in awhile, Mike or I will glance absonce seizures that last less than a minute. Children with developmental delays often have seizures, but Aulton also has a pre-disposition to them. He has two nephews, on Mike's side, that also have seizures. We will likely keep him on this medication for life because it doesn't have any side-effects for him and it may prevent seizures. We were so lucky that it works and was the first med we tried because so many people have to try many mediciations and dosages before they find one that works for their child.

Sensory Processing Disorder - This is a very common part of myotonic dystrophy and autism. Aulton is a "sensory seeker". He loves any kind of deep pressure and sometimes creates it on his own, by finding tight spaces to squeeze into or crossing his legs and clenching his muscles. Any kind of stimuli is hard for him to process. Sounds are louder, tastebuds are weaker, smells are stronger, things look brighter and textures feel different to Aulton. His brain simply cannot process all the information that his body is feeling.  He "stims" a lot and I kind of hate it, especially how he covers his ears all the time!

PICA - Aulton will eat pretty much anything - that is not supposed to be eaten. It's kind of an awful part of his sensory issues. On Friday, he was not himself at therapy and when I dropped him off at school, afterward, I tried to explain. About half way into my explanation, he vomited, the entire contents of his stomach all over. I took him to the doctor because strep has been going around and I wanted to rule that, as well as anything else, out. The pediatrician said there is a bug going around, but also admitted he could have just ate something he shouldn't have. I think it was a bug this time, but we never really know.

ADD- Aulton has been diagnosed with Attention Deficit Disorder. I don't know. I think his cognitive issues are significant enough that a doctor decided he can't focus. He is able to focus on things that are motivating, just like a typical person. Lyla is pretty focused on the show "Descendants" and cooking. Aulton is pretty focused on Dora the Explorer and swinging. I think it's easier to throw a label on this type of thing.

OCD- Speaking of Dora. He has an official diagnosis of OCD based on his obsession with the tv character. I think it's kind of bogus.

So, that in a nutshell is what is going on with Aulton's diagnoses currently. I hate to make it seem like this is all he's about. These things are definitely part of him, but they do not define him. He is the most innocent, pure, calm, content person that I have ever met and HE is why I'm doing this.

Days 6, 7 & 8 - Injections

There's no place like home.

I enjoyed being home this weekend. I was especially lucky to get to spend three days home before returned to the trial due to Labor Day. Usually, participants have the 2 day weekend and have to return on Monday, so I'm thankful for the extra day I had with my family. We didn't do anything remarkable, except spend lots of time together and my kids were very interested in cuddling with me . I made sure they each got turns spending time sitting on my lap by themselves.

I'm also grateful that I don't have to pay for anything here - hooray big pharmaceutical companies. The Marriott I'm staying in is quite nice, but all I did there was sleep and shower. I was there just under 9 hours. I would be pretty unhappy paying $234 for a room that I didn't even turn on the TV in.

I wasn't in much pain over the weekend. My arm hurt all day Friday (after the injection and some on Saturday). I had a weird reaction, where the site just turned all splotchy red and white. That lasted for several days.



Painful injections today, despite ice
for numbing before and after


I'm got the injections on the other side of my stomach today. I guess I'm just going to rotate (abdomen, thighs, tricep, repeat) because no site is better than another.

The shots hurt more than the last time I got them in my stomach. It took about 19 minutes for the stinging to subside. The ice is supposed to help, but I'm not finding any difference.

Dr. Johnson did a physical before I got the injections. He is interested in my reactions, since each site has had a different type of response to the drug (or placebo).

I wish I could say I'm finding a big difference in my muscles, but so far I'm not. During my physical, I have to open and close my hands rapidly. The first time, there was no problem with myotonia at all. It appeared as if I had normal hands with no muscle issues. Dr. Johnson was impressed and asked me to it again, but it was a fluke and the myotonia came right back. He joked that I had practiced. I didn't so this may be a good sign. It's so hard to tell.

I wish I had more to report, but I'm happy to be heading back in a little bit. I will be back next week.