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

Research

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

Happy 

5-Year-Olds Playing Basketball

So a couple months ago I decided to enroll Kyle in a basketball league with other kids his age. It would give him an opportunity to learn something new and to do something active that doesn't require dressing like the Michelin Man before venturing outside.   

I've discovered there's nothing quite so entertaining as watching 5-year-olds play basketball. At this point, it's all about teaching the kids how to play. At Kyle's practice the coaches have taught him and his team fundamentals like how to dribble the ball, how to pass the ball and how the make a basket. Basic stuff. It's fun to watch each kid trying to get the hang of this new sport. Basketball is completely new to most the kids on this team including Kyle. They do pretty well during practice, doing their best to follow the coaches' instruction.

That's until, at the end of the practice, the coaches had them play a little skirmish. Then all bets were off. I can't believe how much fun it is to watch these kids. No one knows what they're doing! One kid goes tearing across the court for no apparent reason, another grabs the ball and runs with it tightly wrapped in his arms, all the while the coach is calling "Dribble! You got to dribble buddy!" It's pretty chaotic.

At the end of it, Kyle was red faced and tired. And already asking when he gets to play again.  He has such a good time and I enjoyed watching it all way too much. Kyle and his team will improve with time and oh how much fun it will be to watch the process. 

I Must Remember

My beautiful daughter, my Little Ball of Worry, has many specialists. The list, thus far, has consisted of a Neurologist, Ophthalmologist, Immunologist, Cardiologist, Pulmonologist and a Geneticist. Not to mention the Neonatologist from when she was first born. She has had countless appointments with these specialists. All critical in handling her diverse number of medical issues and concerns. Morgan is not yet two years old and we've run quite the gambit of medical stresses. It's no wonder why I call her my Little Ball of Worry.

To back up a bit. I want you to know how incredible my daughter is. How exquisitely beautiful she is. There are moments with her that pull me closer to the wonders and mysteries of this world. I look into her eyes and I see such depth and beauty. Looking into those eyes gives me the determination to walk this path and to do so with my head held high and straight spine.

Also, she is strong. I don't mean strong as in she can lift very heavy objects for her age, or that she can outmatch her peers in endurance or physical prowess. She can do neither. She is delayed in every way. She struggles with the simple things and milestones which you and I take for granted.

By saying she is strong, I mean she is the most determined little human being I've ever encountered. The things which she endures without complaint boggles the mind. She has defied all odds and continues to surprise and baffle both me and the medical community. She is determined to be here with us. She is determined to live. She is moving forward one inch at a time. And I'm in awe of her.

Each specialist in Morgan's life serves a critical purpose in her health and well being. Not just her health for today but to increase the her chances for the best future possible.

She also has a few therapists helping her with her vision, gross motor development, fine motor development as well as orientation management (this has to do with her vision impairment and moving safely through space).

Not to mention her Pediatrician who has done an amazing job of putting it all together and tracking the different elements of her care and Morgan's overall health.

All-in-all, Morgan has quite the team. And I couldn't do what I do without any of them. Each Specialist, Doctor and Therapist addresses a different need and each contributes to the information and knowledge I need to be able to care for Morgan.

And even I, with the lifelong mantra of "I can do it myself," admits that I can't do this alone.

But I must remember that I'm just as essential to Morgan's well-being. To not forget my own importance. I must remember that because I care for Morgan and the rest of my family, that I must not forget to take care of myself. 

Simple Gifts

'Tis the gift to be simple, 'tis the gift to be free,

'Tis the gift to come down where we ought to be,

And when we find ourselves in the place just right,

'Twill be in the valley of love and delight.

When true simplicity is gain'd,

To bow and to bend we shan't be asham'd,

To turn, turn will be our delight

'Till by turning, turning we come round right.

-Anonymous (Shaker Hymn)

A Lot of Changes

There has been a lot going on in the last couple months that it has taken me a while to sit down and write about it.

Too busy living it I suppose. Between Kyle going to school, Morgan and her many activities and work, seems life is moving very fast with little time for reflection. The biggest changes are because Morgan is growing. She is getting bigger and stronger and more lovely every day.

Kyle is slowly getting used to school and following the rules-something the little stubborn man struggles with-and learning how to read and write, etc. He loves school but also loves deciding what he will do and when. This doesn't go over well with the teacher and we have many conversations between Kyle's teacher, Kyle and myself. Every day I drop Kyle off at school, I cross my fingers and repeat over and over under my breath, "please behave in school, please behave in school." Sometimes he decides he will conform for the day and others he doesn't. Sigh... At least he is learning a lot and has made a lot of friends.

Morgan is growing and at her last checkup it came to my attention that she has officially grown out of her infant car seat. She's too long. I knew that it was coming. That soon we would have to figure out a way to get Morgan around. She's not walking yet and needs support while sitting up. This is why the infant car seat was so nice. It gave her the support she needed while giving me a way to take her places without having to hold her the whole time. I've had to figure something out.

I created a support for her so that she has some assistance while sitting in a shopping cart. This has allowed me to do the grocery shopping with her. I've had to keep the trips rather short as Morgan gets tired but so far it has worked.

And Morgan now has a wheelchair! It looks more like a stroller but it serves the purpose of giving her the proper support while we are out and about. Her Physical Therapist brought it for her and we can hang on to it until we don't need it anymore.

All of this has been a big adjustment. All for the best, but still a huge adjustment.

Being out with her now invites stares and puzzled looks rather than the accustomed "oh, your baby is so cute!" which we always got when she was sitting in her car seat. Now mostly people look at her and wonder what's going on. I knew this would be a part of day-to-day life but still it takes a little getting used to.

Now I drive around with a handicapped license plate which a use whenever I'm with her and I must admit at times I feel a little conspicuous. But as time goes on, this will also become my normal.

Both kids are thriving right now and even though Morgan has been sick consistently with short breaks in between, she's tolerating being sick well and making good progress. It's fun to watch her play and smile. Kyle loves school and is happy. And that's all that matters. 

Parent's Conference at the School for the Deaf and Blind

Last weekend was a busy one. Danny, Myself and Morgan traveled up to the School for the Deaf and Blind in Ogden for the Parent's Conference for the Parent Infant Program for the Blind and Visually Impaired. Kyle got to experience his very first sleepover at his cousin's house. I was a little worried about how well Morgan would handle the short trip but she did surprisingly well.

At the Conference, we listened to speakers, participated in workshops and learned more about CVI (Cortical Visual Impairment). This helps so much with Morgan, giving us a better understanding of how CVI works and the different ways we can help our Little Ball of Worry. We came away with a lot of information and ideas. My head has been buzzing with all the information. Mulling over everything they discussed and how it applies to Morgan.

We were in good company. Parents like ourselves figuring this out. There were a few other parents like us dealing with medically complex children where vision is only one piece of the puzzle.

Odd. But sometimes I envy parents who have only ONE condition to contend with. I know I shouldn't but I can't help it. Not that their situation is in any way less profound or life altering. Just different, and from my point of view, maybe a little less complicated.

At the conference, I got some great ideas for toys and sensory exploration. I took photos of some of the ideas and created for Morgan, with Kyle's help, a sensory board for Christmas when I got home.

I have so much to learn and even as I learn, Morgan is changing. This conference was a nice little break from our usual routine. I'm grateful to the Parent Infant Program for providing us the opportunity to attend. It was a great experience.

And Kyle had an amazing time at his sleepover. He was exhausted when we picked him up.

The Hits

Sometimes I get hit. Not physically (thought it might as well be) but emotionally and mentally. It happens when least expected, at the most unlikely times. I've tried to anticipate getting hit but that doesn't work. I simply have to accept that no matter what I do, no matter how positive I train my thoughts to be, I will get hit.

I believe anyone who've been through, or are going through, something traumatic have experienced this phenomenon. You're going about your day doing your normal routine when BAM! out of nowhere something reminds you of everything you've been through, are still going through. It hits you. And you have to sit down, cry, and/or experience the rage that flows through you with such strength that you feel out of breath. I had a lot of "hits" in the beginning, when it was all new with Morgan. I would see a typical 6 month old out in public and be reminded of how non-typical my girl is. And it hits me. Call me over-emotional but there is nothing else to do but feel it. The pain of not having a healthy typical daughter, the moments of flashback over all the scary situations we've lived through thus far, the scary moments still to come. And knowing, inevitably, they will come. And I cry. Anything could set it off. Anything could cause the hit.

As time goes on, I've noticed the hits not coming as frequently. It's been at least a month since I've been hit with anything. It helps that I'm growing into this life, becoming a little better at navigating the situation as time goes on. Morgan's challenges are simply woven into our daily lives. No big deal. Right.

Except when it is.

I didn't know how rough this last week was going to be. I got hit a lot. I was watching a special on PBS about Brain Consciousness and thoroughly enjoying it till the EEG. They began an EEG to show the brain's activity in sleep. They showed him wearing the scanners, then they showed the EEG read-out. And that's all it took. In my mind's eye flashed all of Morgan's EEGs, her seizures, her brain MRI and I lost it. I had to turn off the show and walk out onto the deck into the chilly night air. Weeping, I kept thinking "This really hurts, and this is really silly. I need to get a grip."  I couldn't watch the rest of the show.

The hits didn't stop there. Morgan had an appointment with her Pediatrician the next day and it was a rough one. Rough because we went over her Care Plan for the following year. We covered every aspect of her care, what specialists she will need to follow-up with, what tests will need to be done, different therapies and what ones we would need to add on. And we will need to get her a wheelchair down the road.

 A hard appointment. Life with Morgan isn't bad when you take things a day at a time, one step at a time. But backing up and looking at the big picture is overwhelming, scary. A LOT to take in. Too much. I got through the appointment but wasn't doing very well by the time we reached the car. The tears came and really there was nothing I could do about it. There is no choice but to feel it. Feel all of it.

Morgan is doing very well health-wise, her seizures are under control, no major illnesses at the moment. So really a good appointment in that regard. It's just hard to look at the big picture.

I feel pretty good today. Not overwhelmed and pretty happy with the way things are. Back to taking it one step at a time and smiling where I can. It's such a strange way to live, knowing that I will inevitably get hit again.