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. 

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. 

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. 

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)