Rare Diseases — 5 Minutes for Special Needs — Page 2

Rare Diseases

Making the Tough Calls

When does the risk outweigh the benefit? How do you decide if medical treatments for your child are more harm than good?

Making the tough calls has never been easy, and apparently the weight of this burden never goes away.

I remember my son, 4 months old, critcially ill and crying incessantly. Crying because he was in pain. Crying while I, his mother, held him down so that the radiologist could insert a central line into his neck. But what choice did I have?

Nine surgeries later and the choices are still hard. It’s not just the major decisions that we wrestle with, but the day-to-day ones as well.

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The Difference A Week Can Make

What a difference a week can make! Last week I was looking toward Monday with apprehension, even dread. We were all but certain that our little man was to be diagnosed with a rare bone disorder that would probably require surgery. Pessimists? Realists? I’m not sure.

After 3 years of bad news, it’s sometimes hard to find hope. That’s when we ask for prayers and support. Thank you so much for answering our call to arms. Thank you for the prayers you whispered and the hugs (virtual and real) that you sent our way. They mean the world and the Big Guy was listening.

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Another Day, Another Diagnosis

037Well, the day is almost here…

I wish I was more excited, but it’s not THAT kind of day that we’ve been waiting for.

For about a month now, we’ve been waiting for the July the 19th and Monday it will finally be here. This is the day we go to meet a new specialist. A pediatric bone specialist, because on top of rare renal disease, they now think my precious little man may have a rare bone disorder too.

For a month I’ve ignored the fears, questions and what-if’s that come with the possibility of yet another diagnosis. Surgery? Braces?

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First attempts at socialization

One of the things that we are starting to feel is necessary is for Hannah to start socializing with other children around her age.  We don’t have any friends with young infants, so the only real experience she has had are friends of her brother and sister, who are obviously older than she is.

We can’t send her to daycare.  She has too many “issues” that would not make it safe for her to be there nor would we probably be able to have her in a regular daycare.  There are no “special needs” daycares near us, as we found out the nearest two are 2 hours and almost 4 hours away from us. 

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Why I am dreading the tracheostomy

1A couple of days ago, we had our followup with our ENT.  Hannah has been having some breathing issues lately, and I had brought them up to her since our pediatrician and occupational therapist felt that she had airway issues.

The ENT did a laryngoscopy and found that Hannah had vocal cord paralysis.  She would most likely requre a tracheostomy in the new few weeks to months. 

The thought of this is killing me.

I have been soul searching and trying to figure out why this probably tracheostomy need is eating at me.  After talking to a couple of friends and reading thoughts from other moms who have gone through this, I know what it is.

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Planting the “special needs” seeds

Hannah, Ethan, and AbigailBecause Hannah’s disease progression is slower than was originally expected (thank goodness!), we have been able to slowly plant the seeds of Hannah’s illness to Ethan (8) and Abigail (5). 

We made a very strong point never to say she is “sick” but that she has a “disease.”  We don’t want them to connect being “sick” with always having a serious outcome.

Because Ethan is older, we have able to get more in depth with the situation.  For example, there is a boy in his school with physical special needs (including a wheelchair and constant assistant).  We were talking about him the other day, and I made the comment that “you know, Hannah will be a “special needs” child too.”  That led to a discussion about her developmental delays and orthotics. 

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Yes, I DO raise my kids differently

My three kidsOut of the hundreds of wonderful and supportive comments and emails I receive, every once in a great while I apparently piss someone off with something I share.  Instead of writing back to this one person, I decided to share my response here in case anyone else felt the same way. 

When I mentioned a few days ago that I raise Hannah differently than I do Abby and Ethan, a mom of 4 kids was “disgusted” with me and felt horrible for Hannah having me as a mom.  She felt that by not planning for Hannah’s future like we do with Ethan and Abigail that I was “giving up” on my child.

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How a little bear named Hope made history

Over the years, I have met some wonderful people online who have become an some of my closest friends. Being able to meet them in person, even just once, has helped solidify friendships that have lasted almost a decade.

Throughout this journey with Hannah, I have also met some wonderful people. Some who have become partners in our fight, some who have offered an ear and a hug, and some whom I admire not only their dedication to their own fights for their children but the willingness they are to open their hearts to me.

One such woman, Nicole, I was “introduced” online to back in December.

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For Tuesday…

One of the greatest, most wonderful, empowering things about blogging is learning that you’re not alone. That you don’t have to do this by yourself. That there is a whole community of people who genuinely care about what you’re going through…

The lovely Debi from Who Says 8 Is Enough? is hosting a very special blog party next week.

Why is it so special?

Well, here’s what Debi has to say:

“We are holding this blog party in honor of Tuesday Whitt, my friend Jess’ beautiful twin daughter who bravely fought and sadly lost her 8 month battle with stage 4 neuroblastoma in January of this year.

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Fine Line between Research and Parenting

Not only does my beautiful little girl have an incredibly rare and fatal disease of which only a few hundred children have, but we recently found out that her DNA mutation combination (the combination of my bad Gaucher gene and my husband’s bad Gaucher gene) is something that has never been seen before and cannot be found in any documentation in the history of the disease.

What this means for us is that we have no previous patient history to go by to have an idea of what to expect with this disease such as how quickly it will progress, the extent of the neurological decline, etc. 

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