Friday, December 23, 2016

Why I Will Keep Telling People About My Daughter With Dup15q Syndrome

I've been wanting to write about this topic for some time but was always unsure where to start. What I want to say forms over and over in my mind, then, just as quickly, dissolves. The angry part me begins and then quiets down. The tired part of me begins then quiets down. The Advocate in me speaks up and is usually the voice that stays, making the right words come. It's the Advocate in me that speaks now.

I talk a lot about Morgan and her having Dup15q Syndrome. I talk a little about my family and how we handle everything. I've asked myself many times whether or not I aught to talk so much about everything. To share so much about doctors appointments, tests, therapies, etc. This question is one that I've visited often, but always, after much thought and consideration, come to the same conclusion: I'm in-explicitly drawn to openly discuss our Morgan. To share her with the world--or at least with anyone who is interested in knowing about her. And time and again, I've seen some incredible results from my efforts to be open.

There are those who do not agree with speaking so openly about medical issues and disability. These things are viewed by many to be "private" and that talking about these things is in poor taste. I can see that.

I also see where many are uncomfortable with disability and illness in general. I'm not sure why this is. Perhaps it's a strong reminder of our own fragility? Perhaps it's being different that makes some uncomfortable. The possible difference in looks, mannerisms and behavior that some have trouble dealing with. Perhaps, it's the different lifestyle of the day-to-day challenges that most simply cannot relate to. While I don't share any of these views, and I don't think there is any reason to be uncomfortable with disability or illness, I can see where these views come from.

There are some who are just plain uncomfortable with the idea of being so open about this Special Needs life we are living.

So here's why keeping everything to ourselves just doesn't make sense for Morgan's situation and our family's well being.

When Morgan's team of doctors, specialists and experts consist of 17 different people, the situation ceases to be private. Every aspect of her is discussed, both the good and the bad. We work with her. I share what's going on with them, they have suggestions for me, and the cycle continues. It's a lot of work. But something amazing happens when I open up about everything. I usually get the help we need. I get the information Morgan needs. Magic happens. If I'm not as talkative one day, or I'm not focusing my energy completely on every facet of her care, her doctor or therapist doesn't get the whole picture. So many times I end up learning about some new technique or therapy available by sharing things I've noticed about her or something I've read--this happens to be how Hippo-therapy came into the picture. I talk way too much. And it has proven to benefit Morgan time and again.

I've spoken to a few med students upon request. I'd like to think that our conversations will somehow make a difference. That by answering their questions and allowing them to learn from us, that they will be better for it. What if one of these students takes a special interest in Genetics or Neurology. What if... Perhaps just wishful thinking, but still... I'll keep talking and teaching.

When you share your daughter's story with all State Legislatures to help lobby for the Baby Watch Early Intervention Program, privacy is the least of your concerns. This program directly affects Morgan and our family. We were only one of many families who participated in lobbying. I'm happy to say that we saw good results from these efforts. This was the first time I had to get involved in politics on behalf of Morgan and I dare say it won't be the last. People with disabilities represent about 19 percent of the U.S. population. If this group was a formally recognized minority group, they would be the largest. Yet they have little to no voice. It's up to family members and care givers like myself to change that. And I fully intend to change what I can.

People get nervous about Morgan. When dropping off and picking up Kyle from school, day in and day out, there are those who may stare. But something amazing happens when I speak openly about her. The stares and discomfort lessens. They see that I'm totally comfortable with talking about her and that affects how they act around her. When you are your daughters' liaison between her and the rest of the world, not talking about her differences as well as her similarities, does her a disservice. I'm not ashamed of her, nor will I ever be. Kyle is not ashamed of her either and introduces his little sister to his friends with obvious enthusiasm. She is different, and that's okay. Not everyone will be comfortable with her, and that's okay too.

I've seen nothing but good come from talking about Morgan. So I will keep talking about her and sharing her story for as long as I have strength to do so.

Sunday, October 30, 2016

I Assure You, She Speaks

Morgan is now over 2 years old and the only two words she knows are Mom and Da (Dad). Not very many. Everything else is just babble and noises. Whether or not that gets better over time is anyone's guess. She may, at some point, take off and start adding words like crazy to the scant two she already says. She may go slowly, adding one here or one there. Or, she may never have many words to work with. No one knows and neither do I. I can't even begin to guess.

But what I do know, is that Morgan says so much more than her two known words. She communicates what she needs and feels all the time. You just have to pay attention. Most of her communication is non-verbal. We are trying to teach her sign language. There are challenges with this too. Her vision impairment and her struggle with fine motor skills make it challenging, but she is learning. She now knows the sign for milk, though she doesn't always use it. It's progress.

Have you ever wondered why it's so easy to understand someone while speaking face-to-face? That misunderstandings are more likely to occur during phone conversations? Don't get me started on text messaging. That's a another topic.

"Dr. Albert Mehrabian, author of Silent Messages, conducted several studies on nonverbal communication. He found that 7% of any message is conveyed through words, 38% through certain vocal elements, and 55% through nonverbal elements (facial expressions, gestures, posture, etc)."

The study that Mehrabian conducted was back in 1972 and has been disputed or supported many times over the years. I don't know if these percentages are accurate or not. But what I can tell you is that the non-verbal stuff is pretty important in our house.

Our bodies say a lot. Our words add to what's readable in our posture and movements. We communicate with so much more than words alone. And so this is with Morgan. She definitely communicates differently. Her cues aren't typical. But if you are paying attention, really paying attention, she tells you everything.

I know she is hungry or tired by how tense and irritated she is while playing. How comfortable she is in a new environment with how much she is able to interact with me. I know she wants to be picked up when she straightens her spine a little and holds her bent arms up to shoulder height. She tells me how cool she thinks a toy is by holding it out for me and anyone to see. She says hello to someone she loves by reaching out to touch their face. And she uses her arsenal of facial expressions to convey everything she is feeling.

I know she is saying "I love you Mommy," every time she gently holds onto a lock of my hair when I pick her up.

She may not have many words, but I assure you, Morgan speaks.   

Friday, August 12, 2016

Living With A Child With Idic 15 Also Known As Dup15q in Photos 2

I take so many photos anyway that I thought I would share, again, what it's like living with Morgan who has Idic 15/Dup15q Syndrome using photos. This is a continuation from the first post I did earlier this year.

So again, I share these photos to help others gain an idea of what it may be like to live with the challenges we face, and most importantly, to gain awareness of such rare conditions as Idic 15 Syndrome.

We redid her room. This corner has all the tools we use for her Vision Therapy.

She's standing all by herself! With the help of her Stander.

Hippo-therapy. This is so good for her but she is wiped out afterward.

Danny designed a special shirt he wears to work in honor of her.

Service Dog Application Process. A lot of paperwork.

Getting everything together for a trip to the grocery store.

New equipment! This ToGo Seat has changed our lives!

The new wheelchair. How did we ever get along without it?

Playing with mylar paper.

Had breakthrough seizures. That, in combination with meds increase, caused her to loose all her strength for about a week.

Thumb splints. To keep her from holding onto her thumbs and not opening her hands. Had to use these for a while.
She rolls underneath the table and big brother joins her there.

Getting up on all-fours is tiring work.

Another EEG. I've official lost count of how many she's had. 

We have to add calories wherever we can. Getting her to gain weight is difficult.


She finally sits up by herself! A beautiful sight.

Keeping track of everything.

Holding big brother's shield.

New gear! Her bath chair finally arrives in August. It was ordered in April.

Happy girl. So grown up.

My Little Ball of Worry with a halo of curls.

 I also share these photos with the goal of gaining donations to 4 Paws for Ability.

4 Paws for Ability enriches the lives of children with disabilities by training and placing quality, task-trained service dogs. This provides increased independence for the children, and assistance to their families.

And they are trying to place a seizure detecting service dog with Morgan. And we can't do that without your help. Donations can be made by clicking the link below.

Tuesday, July 19, 2016

A Seizure Detection Service Dog

I've mention before that I've thought about somehow getting a Service Dog for Morgan. The idea was planted in my head by our beautiful dog, Molly. She detected one of Morgan's seizures once. She began acting strange one night after I put Morgan to bed. Molly lay motionless in the middle of the hall, refusing to move, while boring holes into me with her stare. Two thoughts occurred to me at that moment: That Morgan was going to have a seizure and that at the time, I wasn't alone in monitoring Morgan. Molly is NOT and service dog and while I encourage her abilities, I have no idea how to even begin to train Molly to detect seizures all the time. Also, Molly is getting older and I don't think she would be very receptive to new and intense training.

That started this journey, this quest, to get Morgan a Service Dog.

I've spent a great deal of time and effort researching organizations which provide service dogs for people with disabilities and I found that all of them are a little different. Many do not provide service dogs for kids and the few that do have extraordinary waiting lists. During this research, I discovered 4 Paws for Ability. They provide Service Dogs trained for each child's specific needs. Including, Seizure Detecting Service Dogs.

I knew I'd found the organization I wanted to work with.

I began the application process and now, after months of work, I can see the end result. The help that we so need for Morgan.  Her application was a approved and we've started the fundraising process. It is my hope that we can raise enough money to make this happen.

Friday, June 3, 2016

Nothing Holds Still

A lot has happened over that last few months and the pace of life never ceases to amaze me. It is absolutely true that the only thing that never changes is that things change, and life doesn't hold still, doesn't pause for breath, and doesn't care about your plans or desires. So we go along with it and handle everything that comes up the best we can, all the while thinking "Well that wasn't what I had in mind." At least life is never boring. Even if sometimes we want it to be.

And so it was when I woke up at 3:00am earlier this month with a strange pressure in my lower abdomen which quickly turned into the most intense pain I've ever experienced. By 5:00am, I found myself in the ER with nurses administering morphine and other drugs through an IV. I found myself having blood drawn and as the tests were being administered, the pain moved and I could feel it very distinctly in my right side. The doctor put pressure on different areas of my stomach and I involuntarily jumped when we pushed on my right side. "Guess what's housed there?" The doctor asked. "The appendix." I said. "Yes, the appendix."

Shortly after that I was laying in the CT scanner and all I could think was "At least it's not Morgan this time. Sure enough, I had acute appendicitis and was being wheeled down to the operating room by 11:00 am for emergency surgery.

The surgery went well. But coming out of the anesthesia was no picnic. Apparently, I tried to get up and leave when I started waking up. It took two nurses to hold me down, and then I got sick. I have a very vague recollection of the episode.

They let me go home later that day with the instruction of no lifting. Oh boy. Caring for Morgan just got more complicated. Luckily I had Danny by my side and my family took shifts helping me out for the next few days. Recovery was painful and slow but I'm almost back to my usual self.

Kyle just finished Kindergarten and Morgan finally got her custom wheelchair! The wheelchair took about 3 months and now that it's here, I can't imagine daily life without it. Everything we've been using with Morgan has been so ridiculously inadequate. It took an hour and a half with the help of Morgan's PT and the gal from National Seating and Mobility to size it correctly. It fits Morgan perfectly offering the right amount of  support. You can tell that she likes it too.

Kyle has a new puppy. So we have a cute little gremlin running wild around the house. Another layer of chaos but well worth it. 

Kyle has completed Kindergarten. It's been an interesting year but we got through it and now Kyle is ready for 1st grade. I'm happy it's summer. I loved the few hours of quiet in the mornings while he's been at school but I don't mind him being around -- unless, of course, he's driving me crazy. 

Wednesday, April 13, 2016

Adventures In Medical Equipment

So... I'm ever more amazed at all the things that Morgan needs. She is a marvel of paperwork, appointments and projects. She's totally worth it. But still, a lot of things to address. And the biggest project we've had to conquer thus far is getting her set up with medical equipment.

A few months back, at one of Morgan's visits to her Pediatrician, I was informed that I would soon need to start thinking about getting Morgan fitted for a wheelchair. This didn't come as surprise to me though it was still a little tough to hear. Since then, we've taking some steps. We got a chair that she is using now (sort of a loaner) and from that, have learned what she really needs. Back in January, I started the process of getting Morgan a custom wheelchair and bath chair.

And what a process it has been.

I had to contact our insurance and find out what they would cover, then I called Medicaid and found out the same from them. This took several phones calls with many transfers to the right person who would know that answer. Finally, I knew what the rules were.

I had to call the medical equipment/wheelchair providers and ask them about insurance, requirements and the necessary paperwork. We found a good one.

I had to call the Pediatrician's office and get the Letters of Medical Necessity and Prescriptions and have them fax over to the Medical Supply place.

Then, we had to set up a consultation/fitting with Morgan's Physical Therapist and the Supplier...
And so on a so forth.

Morgan's Physical Therapist had quite a bit of paperwork to do on it as well, from what I understand.
So I'm very impressed with how involved the process is but we've had a lot of help along the way.

Now, it's April and I think we can expect all of her stuff to be here in early June. The Pediatrician did warn us that it would take awhile and I find myself lusting after the new equipment. I can't wait until it arrives. It will make life a little easier. 

Thursday, April 7, 2016

Two Years Old!

Morgan is now two!

Only two years. How is it possible that it has only been two years since Morgan's birth? That she is now two years old? That, somehow 15 years worth of worry and stress got crammed into two years? I have to laugh. So many people say to me that it goes by really fast. And in most cases, they are absolutely right. Kyle's 2nd birthday came and went in a flash and now I'm looking at a little boy who will be six this year. Amazing. But with Morgan, I don't think time went by quite as quickly, and at certain points in this journey, took a few years to get through some of the hard stuff which took a few days in real time.

And now, somehow we are here. In a pretty good place I think, and truly grateful to be able to celebrate this birthday.

Morgan is doing some amazing things. She's trying to communicate, she's trying to sit up on her own and crawl. She's reaching for people and things that she wants and she has discovered the joy of splashing in the tub, getting me soaked in process. Her vision continues to improve as does her strength. Her progress is slow, but little by little, she shows us what she's made of (pretty strong stuff if you ask me).

We've accomplished a lot this year, learning new things all the time. I have to shout out a big Thank You to her team of therapists who are constantly working to figure Morgan out and give us the tools to work with her. Without them (you know who you are!) we would be lost.

Happy Birthday my Sweet Girl, my Little Ball of Worry, my Courage Incarnate. 

Saturday, February 27, 2016

Living With A Child With Idic 15 Also Known As Dup15q in Photos

With Rare Disease Day just around the corner, I wanted to share a little of what it's like living with a child with Idic 15/Dup15q Syndrome using photos.

Sometimes the easiest way to describe something is with a photo. I could write this ridiculously lengthy description of our day-to-day life, but I can't imagine anyone, including myself, who would want to read it. But I do want to somehow describe what it's like to live with a child with a rare condition.

I don't share these photos to gain pity. I really don't want anyone's pity. I don't share these photos to show how hard and horrible our life is, because our life is quite the opposite. It's filled with love and wonder and an appreciation for all things irreplaceable, such as family and friends. We laugh and smile everyday just like anyone else. We just have a few more... challenges, than the typical family.

So I share these photos to help others gain an idea of what it may be like to be in our shoes. To live with the "challenges"  we face, and most importantly, to gain awareness of such rare conditions as Idic 15 Syndrome.

3rd Echocardiogram

4th or 5th EKG. Can't Remember

Brain MRI

Fighting Infantile Spasms


Always watching her video baby monitor

To help her anxiety in busy public places

Helping her learn how to hold her bottle by giving her something to feel

Hospital stay. fighting a stomach thing

Physical Therapy

More research

She's just cute

Exploring, listening but not looking

Tired girl and Mom

Beautiful day at the park

5th EEG

More research

Emergency seizure med

More seizure meds

She likes to cross her fingers, don't know why

ALWAYS paying attention to her lungs, I listen to her most nights

Out of all of those photos, these are the only ones that matter