Monthly Archives: April 2017

What the Heck is Going On? A Summary

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It has come to my attention that a lot of people have been asking my family about Lyra and exactly what is going on.  I realized that there really isn’t a comprehensive explanation anywhere in my blog, partly because things were discovered slowly over the period of about a year.  So, no profound thoughts in this post, just a summary of where we are with Lyra and some resources:

Lyra has 2 VERY rare chromosome disorders called 9p Trisomy and 16p Deletion.  The documents provided don’t address Lyra’s specific duplication and deletion, because there simply haven’t been very many documented cases. Also, Lyra is the first documented case of someone having BOTH disorders. The doctor’s really don’t have any idea what to expect.  When we received the diagnosis (she was about 7 weeks old) we were told that she would have substantial physical and mental handicaps.  While she is doing much better than were initially told to expect, she does have significant physical and cognitive delays.

Lyra was also born with a number of physical abnormalities that were slowly discovered over the first year of her life, during many hospital stays, a few scares, and more tests than I care to count.  Lyra basically has abnormalities in her brain, heart, airways, liver, kidneys, and GI tract. She also has struggled learning to eat, hence her feeding tube.  I won’t give a full diagnostic list (because it’s boring), but I will give some highlights:

Her brain: Lyra has a brain that none of her doctors have ever seen before.  In fact, I can’t even link documents explaining her most significant abnormality because there simply isn’t any information about it.  Lyra has enlarged ventricles (for unknown reasons), a small cyst, and a fused thalamus.  It is the fused thalamus that we suspect causes a number of her issues, and is the biggest challenge for her neurological team.  They simply have not seen anyone who has a fused thalamus without other areas of the brain also being fused.  Also, they normally see other midline issues (like a cleft lip).  However, Lyra only has the fused thalamus. Basically 98% of all sensory input is processed via the thalamus.  It also regulates sleep/wake cycles (probably the reason why she is such a terrible sleeper).

Lyra’s GI tract has been the major challenge.  Lyra has never been able to eat very well (at this stage she takes almost nothing by mouth).  This caused a number of scares when she was first born and led to a NG tube being placed when she was 1 month old, and a G tube being placed when she was 4 months old. While we still don’t fully understand why she doesn’t eat, that really has been the least of our problems.  The simple fact is, her GI system doesn’t work well, and they have no idea why.  Most of her hospitalizations (10 in her first year) have been because her GI system starts rejecting everything for one reason or another.  Even when she is home and doing well, she pukes ALL THE TIME.  It has gotten more manageable, but we haven’t found anything that completely stops it. Our baseline is 1-2 pukes per day (we do a lot of laundry). We have an amazing GI team at our local Children’s Hospital and they are stumped.  However, they haven’t given up.

Lyra’s other issues are minor and monitored by the appropriate specialists.  At last count,  she is under the care of 9 specialists and her primary care doctor. Yes, that is 10 doctors who see her on a regular basis and periodically have her go in for tests (normally ultrasounds).  Oh, and 3 therapists who see her weekly (occupational therapy, physical therapy, and speech/language therapy). Needless to say, she is well monitored.

So where are we now with her:

Lyra has not been in the hospital for just over 11 months (knock on wood). While she is still considered medically complex, she is no longer considered medically fragile. Although her GI issues continue to be challenging, they have been manageable at home. Lyra is tiny (not on the charts for height and just barely 20 lbs), however she is still growing and her team is happy with her progress.  Due to her genetic diagnosis, they do not anticipate she will be very big. As mentioned before, Lyra does have significant cognitive and physical delays.  She does not talk or walk yet.  However, she has mastered whining, crawling and climbing (she gets into everything).  We are actually ecstatic with her progress, especially in light of the prognosis we were originally given.  She is a special needs child, in the same way a child with Downs Syndrome is special needs. She will never “catch up”.  But that is okay.  We take nothing for granted and enjoy every day we get with her (even when she has been up playing all night).

If anyone has any additional questions, PLEASE do not hesitate to ask.  It is okay to ask me directly.  I really don’t mind.

Here are some resources that I frequently refer to:

  • Feeding Tube Awareness Foundation – This organization with its FaceBook page has been a huge help in finding a community.
  • Unique – This group is a resource for rare chromosome disorders. They are working to build an international database to help connect families and conduct meaningful research.
  • Children’s Hospital of Colorado – This has been our home away from home at times.  I am so grateful that we live near this hospital, and that we have such a wonderful team there.

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Lyra with her AFOs

On Hope

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“… abandoning hope is an affirmation, the beginning of the beginning.” – Pema Chodron, When Things Fall Apart

The first time I heard the parent of a special needs child talk about “giving up hope”, I was horrified. Luckily, I kept listening, so stick with me. The more I listened, the more I realized I was in the process of giving up hope as well.  I have given up hope slowly since we received Lyra’s genetic diagnosis, and more rapidly since we received her neurological diagnosis.  Giving up hope had been incredibly liberating.

When you’re pregnant you are full of hope.  You hope your child will be healthy, do well in school, enjoy books/sports/traveling etc. You hope your child will be successful and independent as an adult. You hope that they find friends, and at least get to experience what an average child experiences. The list of hopes and dreams goes on and on and is different for each person.

The weight of that hope is crushing and can be debilitating for some of us with special needs children. “Hope” can be a dirty word.

The longer I held onto the hope that Lyra would be an average kid, that she would “catch up”, the harder it was for me to enjoy who she was. The more I hoped she would do things physically appropriate for her age (like use her arms, roll over, sit up, or stand), the harder it was for me to see the accomplishments she did make.  The more I hope she says “mama”, the harder it is for me to notice the ways she does try to communicate.

I have had a harder time letting go of the “mama” thing.

I have given up hope that Lyra will cognitively ever by on par with her peers.  I have given up hope that Lyra will reach physical milestones along side others her age.  Giving up that hope has been incredible and liberating. Every time I give up hope that Lyra will be an average child, my eyes are opened to what she is. She is this bubbly little spit fire with her own opinion. She is fast to giggle and loves “peek-a-boo” in all of its various forms. She loves her Sandra Boynton books, like Are You a Cow, but only when she is in the mood to read. And she loves all things music, especially The Wiggles.

Giving up hope doesn’t mean that I give up on my child.  I will always fight for Lyra and do my best to get her what she needs.  I will always try to give her the tools she needs to achieve whatever she will achieve in life. However, giving up hope has allowed me to enjoy where we are today.  Have I fully given up on hope?  Nope.  I still yearn for her to look at me and say “mama”, and mean me. Maybe one day it will happen, and maybe one day that hope will also slip away. Both are okay.

Giving up hope allows you to stop playing the “what if” game, and start playing “what is”.  It doesn’t mean that you don’t strive for more, but you start from where you are instead of where you might have been.  It allows you to move on from the past and leave an alternative reality that only you live in.

I am giving up hope.  Instead I have what is. And that is more than enough.

Words have power, so CHOOSE wisely

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I have debated writing this post, and I am glad I didn’t write a few hours ago. I have considered ignoring this stranger’s comment, and have been advised by some to do so. However, I am sharing it, and sharing how I feel about for two reasons:

  1. To prove that people do say the most ridiculous/hurtful things to caregivers like us
  2. Because if none of us say anything, nothing changes. Sure, we find another store to shop in, somewhere else to eat, a different park to play in, and new activity class. But that doesn’t really solve the problem, and it makes us feel more isolated.

Backstory: About a week ago a Huffington Post article popped up on my news feed on FaceBook about a wonderful photographer, Mikaela Bodkin, and her project “Fed is Best”.  The project is meant to show that it doesn’t matter if you bottle or breastfeed your child, fed is best. I made a comment (something I almost never do) saying:

“This is great, but I wish there were also tube fed children. My baby couldn’t eat and I felt like such a failure that she needed a feeding tube (still does at almost 2). Also, I know a lot of people who have been accused of being lazy because their child is tube fed. No matter how it happens, fed is best.”

I honestly left it at that and didn’t think about it… until today.

This evening, just before Lyra’s bedtime I got a little notice that there was a response to my comment.  Honestly, I wasn’t prepared for what I saw:

“Fine do what you choose. Which means in public don’t say crap to a mom breastfeeding. Don’t ask her when she’s gonna wean don’t suggest she cover. Don’t do it. I’m so sick of FF moms screaming don’t judge me then turning around shaming and humiliating people for breastfeeding. Smh!”

………..

Oh the feels I had.

………..

At first, I was really mad that someone would assume I would criticize them for breastfeeding in public. First, I never said anything negative in my post about breastfeeding at all. In fact, I didn’t even mention it. Second, anyone who knows me knows that I have no issues with boobs (mine or anyone else’s).  We’ve all got them is various shapes and sizes. Really, they aren’t that big of a deal.  Also, when I was pumping for Lyra I had sense of humor about it.  I was devastated that I couldn’t breastfeed, so I pumped. And I had a timer… a cow timer… that said “moo” when I was done.  A good laugh was had by all.

Then it hit me.  I wasn’t really mad about the breastfeeding thing.  Was it annoying and rude? Absolutely.  But that wasn’t the part of her comment that made me want to explode.

“Fine do what you choose.”

do

what

you

CHOOSE

ARE YOU FREAKING KIDDING ME LADY?!?

This was not a choice! My husband and I didn’t sit in our birthing class going, “Bottle? Breast? Ah hell, we will just have a doctor put in a tube!” No. If I had a choice, I wouldn’t chosen to shove a tube down my 3 month old’s nose, or put her through surgery to have one stuck in her stomach. Are you serious? Did you think before you typed that?

Some have asked if maybe it wasn’t directed towards me, and maybe she just made a mistake.  For those of you who have hunted down the thread on FaceBook, you know by other comments that her response was directed at me.  Some other wonderful people also tried to explain to this person that the tube is not a choice, but a medical necessity. The woman didn’t get it.

We always strive to educate the ignorant, but you can’t change stupid.

While we weren’t able to teach this woman why her words were so hurtful, or educate her on feeding tubes, I hope that others can learn from her carelessness. Her words had power, and so do yours.  So choose wisely. I tried to do so when I made my original comment.  I didn’t pick a side or make a comment on the quality of someone’s parenting.  I simply pointed out that bottle and breast are not the only two ways babies are fed, and I wished mine had been represented. To those who came to my defense, your words had power too. And in the end, your words made all the difference.

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