Tag Archives: 16p Deletion Syndrom

We just do things differently

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I feel like there is a misconception that children with disabilities just stay at home and aren’t able to participate in many normal activities. Given, there are times when we have to be selective about where Lyra goes and what she does.  While she has been doing well recently, she is still considered medically fragile and complex. Also, there are some “normal” one year old activities Lyra simply cannot participate in because developmentally she physically just isn’t there yet. However, that does not mean we are restricted to staying at home. You would be amazed at how creative parents and children are. The truth is, like many other kids with disabilities, Lyra is just a kid… we just do things differently.

The biggest hurdle for Lyra participating in activities is her tube (not her developmental delays). It’s not the fact that it is there, it’s the fact that she is connected to her pump 20+ hours per day.  So, I have become very creative.  My two most valuable tools: her backpack and a Mommy Hook.  Oh how I love the Mommy Hook.  I hang her backpack everywhere: in the car, on a swing, in a tree, on a fence, on the back of a chair, on her walker….. the list goes on and on.  Lyra goes everywhere with me, and she does it with her pump.

The proudest moment I had, as far as creativity goes, was figuring out how to let her swim while connected to her pump. On our recent trip to Hawaii we simply put her backpack into two plastic bags and then floated it behind us in an infant floaty!  It worked great. We were able to swim with her like we did with all of the other infants in our family. And she had a blast!  She was able to do it…. just in a different way.

Now, I am not saying that Lyra is able to do everything an average one year old does.  Developmentally she just isn’t there yet and it would be unreasonable for me to expect her to do those things. She doesn’t walk or even crawl (although she is SO CLOSE), so some activities just aren’t going to happen right now. She also has trouble with the heat and seems to struggle a little regulating her body temperature, so we just have to make sure we have a way to cool her off with these hot summer months. But she loves to swing and even goes down slides with her daddy. She plays with her cousins and sits at the dinner table with the rest of the family. She just comes with a few attachments and we just have to do things a little differently.

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When there is no “getting better”

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When there is no “getting better”, your definition of “better” changes.

Recently I read another blog titled “When Your Medically Complex Child Is Never Really ‘Out of the Woods'”, by Brandis Goodman. It sparked a few good conversations with family and really got me thinking about how I can express how the term “better” has changed for me.

Normally when people ask me if Lyra is “better” they are thinking in terms of normal illness. You know, like you get “better” from a cold. In that sense, Lyra will never get better. We can’t add the generic code that is missing, or take away the extra code that she has. We can’t change how her brain formed. We can try to help her other internal systems function more normally, but she will never be fully free from complications. She will never be “better.”

However, Lyra will have better hours, days, weeks, months, and (hopefully) years. When you care for a medically complex child, that really is all you can focus on. When I mentally check in on how she is doing, my thoughts sound like this:

“She has a better night, but a rough morning.” “Today was better than yesterday.” “Her morning was better.” “The last three days have been better.”

Now, does this mean that you shouldn’t ask me if Lyra is “better”?  Absolutely not!  Never be afraid to ask me about my child. Just recognize that we may be using different definitions of “better.” “Better” for Lyra doesn’t mean that she won’t stumble a few times, or end up in the hospital again, or need another surgery. “Better” doesn’t mean that she is “fixed” or cured. Better is all relative for her and changed day by day, hour by hour.

And really, there is no cure for cute.

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The Limits of Medicine

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One of the most common complaints I hear is, “it’s seems like the doctors aren’t even trying to find out __________”.  Believe me, I understand where they are coming from. However, I also recognize that there are limits to medicine and sometimes it is more art than science. Maybe I have a different perspective because I grew up around medical professionals. I have also grown up around teachers, and they will always tell you that works for one child does not always work for another. Sometimes doctors don’t know and there is no test that can find the answer.

Now, I also understand how frustrating it is. Even knowing that doctors do not always have the answer, sometimes it really gets to me as well. This is how appointments go with Lyra:

  • Genetics: “We have no idea what the future will hold for her. She is an interesting case. She will have disabilities, but we have no idea what those will look like.”
  • Cardiology: “Well, her heart isn’t normal, but it seems to be functioning okay. We are just going to watch it and see.”  Me: “What does that mean in the long term/ bigger picture?” Cardiology: “We have no idea.”
  • Urology: “Her urethra is dilated, but she isn’t refluxing into the kidneys.” Me: “So what does that mean?” Urology: “We don’t know, but we will just have to monitor it.”
  • Ophthalmology: “Her optic nerves are enlarged.” Me: “What does that indicate/mean?” Ophthalmology: “We have no idea.”
  • GI: “We have no idea why she doesn’t tolerate her feeds. It makes no logical sense.” (BTW, I actually really like her GI doctor because he is bound and determined to find a solution, even if it isn’t logical.)
  • Neurology: “Well her brain isn’t normal and we don’t know why.”
  • ENT: “I feel like we must all be stupid. Like we are missing something. It just doesn’t make sense.” (These were his actual words)

There are a few more, but you get the idea. To be honest, sometimes I leave these appointments and cry. I try not to do it in front of Lyra. Even though she is a baby, she doesn’t need to see how sad this makes me. I want to be able to fix SOMETHING, but I can’t. I want to know what to prepare myself for, but there are no answers. I want to know why one day she eats a few oz by mouth, and the next day she pukes if I have spoon in my hand.

Trust me, the doctors aren’t being lazy. They talk to each other and to other members of their departments. I think almost everyone in GI at the hospital knows Lyra’s case at this point. I see the look on their faces that says, “how can I tell this parent that I have no answers for her?” I always tell them it’s okay that they don’t have answers. No one does. But it still breaks my heart a little bit.

Right now we are back in the hospital, and we have been for a few days. Once again, Lyra isn’t tolerating her feeds. We even put in a new tube called a GJ (a link with an explanation is below). We feed directly into her intestines, and yet she still throws up. She throws up enough stomach bile that she actually manages to become dehydrated. She is doing okay, but we can’t quite get her feeds up to the point where she is fully hydrated or getting enough calories. We have no idea how long we will be here. No one has answers, but everyone is trying. The GI nurses who see her outpatient even came by to say hi and check on her.

I guess my point is, it’s not easy, and people need to remember that medicine doesn’t have an answer for everything. Sometimes we just have to keep trying and hope that eventually something works. Or, keep watching and hope that everything works itself out.

CHOP – Low Profile GJ Tube

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Wagon ride down to the cafeteria for lunch with Mommy and Daddy

The Things People Say

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This week is Feeding Tube Awareness Week. In honor of that, I have been trying to educate those around me.  I asked a number a group of caregivers (parents/grandparents/foster parents) to share some of their stories with me. Today’s topic is about the things people say to us and to our children. Even when people mean well, their words can be incredibly hurtful. These things have been said to us by strangers, family members, friends, and medical professionals:

  • “Have you tried letting them get hungry?” or “If you just stopped using the tube I am sure they would get hungry enough to eat.”
    • Many parents posted versions of these two comments. Some of us (myself included on this one) watched our children almost die because medical professionals didn’t believe us that our child wouldn’t eat. They don’t necessarily get hungry,or when they do, our children don’t eat enough to survive. If it was that simple, they wouldn’t have a tube.
  • “Did you try breastfeeding?”, “So you don’t breastfeed?”, or “If you just breastfed your child wouldn’t have ended up needing a tube.”
    • Breastfeeding is a VERY sensitive topic for this crowd. I think I can safely say that almost all of the moms who were able to tried to breastfeed. If we couldn’t do that, we at least tried to pump to give our children breast milk. Some of the moms spend months pumping. Some, like me, had no choice but to switch to formula. We all feel like the whole “breast is best” thing has been shoved down our throats, and we feel incredibly sad and guilty that we did not to experience that with our children.
  • “Have you tried giving them _____?”, “I had a picky eater. I gave them _____ and they started eating.”, “I bet I can get your child to eat.”, “If you just gave them kid food, they would eat.”
    • Don’t you think if it were as easy as giving them a different type of food we wouldn’t have ended up with a tube?
  • “So when are you taking out the tube?” or “Can you please remove the tube for family pictures?”
    • For most of us, we have no idea.  The answer may be never. That is okay. Our child is here. Isn’t that enough?
  • “This is disgusting. You shouldn’t be doing that in public.”, “Can you please feed your child at home, before you come over?”
    • I was amazed at how many parents said they had heard this when feeding their child in public. Breastfeeding moms, you are not alone.
  • “What is wrong with your child?”
    • This is one where I know people mean well and are curious, but there is a better way to say this. One mom explained perfectly why this is so hurtful.  Her daughter is a little older and when people say this her daughter hears, “something about me is bad/wrong.” These kids already know they are different and many struggle with confidence. Instead, you can ask the parent or child what the tube is. You can ask why they have a tube (many people are more than happy to educate about their child). Bonus points if you throw in a comment to the child -if they are older- like, “I bet that tube helps make you big and strong!” Make it a positive thing, not a negative one.
  • “The tube is just such an inconvenience.”
    • This “inconvenience” saved our children.
  • “I wish my kid had a tube. It would make dinner time/giving medications/etc. so much easier.”
    • There is nothing easy about having a tube and none of us have a happy story about ending up with one. Also, there are many other things that come with tubes: reflux, vomiting, chronic constipation or diarrhea, etc. While tubes have saved our children, we do not wish this upon anyone. Although, a little piece of me does recognize that it is nice that my 9 month old does not spit her many medications back at me.
  • “I will pray that he/she gets better.”
    • This is one I personally do not have any experience with, but a number of parents posted it, so I am sharing. From what I understand, their problem with this comment is that, in the parent’s eyes, the child is just fine how they are. They are happy and loving kids who are just different. Some of them won’t “get better” because they have a genetic disorder. There is no cure for genetics.
  • “Your child looks so healthy. Are you sure they need a tube?”
    • The tube is why they look healthy.
  • “I think the tube is just a crutch.”, “If you just took the time to feed your child, they wouldn’t need a tube.”
    • Yes, we are such lazy parents. That is why we never sleep more than a few hours at a time(feeding also happens all night for many of us), we are always running to doctor and therapy appointments, we spend days in hospitals/ERs with our children, and hours researching/asking other parents for solutions to challenges we are having. Yep, that’s it. We are too lazy to take care of our kid…
  • “If she eats by mouth, why do they need a tube?”
    • Some kids, like Lyra, simply don’t eat enough. They are working on it, but until then, they need a tube. Also, some kids have medical conditions where they need medications that only work correctly when delivered directly into stomach or intestines.
  • Saying nothing at all and just staring.
    • Our child is not a sideshow. Either ask us a question or stop staring.

Okay.  Enough with the negative stuff.  This isn’t everything, but you get the idea. Here are some positive things to say, especially if you are curious:

  • “Can I help you? Do you need an extra set of hands?”
    • Especially when something is going wrong during a public feeding, this is SUCH a blessing. You have no idea how much it would help to have an extra set of hands when setting up a feed in public. Most of time I end up feeling slightly frazzled when doing it, so I would love it if someone offered to keep something from falling/spilling.
  • “What is your child’s story?”
    • The vast majority of us are happy to educate you about feeding tubes and how our children ended up with them. Our kids are little fighters and we are proud of them.
  • “Is it safe for your child to eat by mouth?” – “Do they eat anything by mouth?”
    • This is always a great question before offering a child food (like at a family dinner). It’s just respectful and keeps everyone safe/happy.
  • You are allowed to be curious. Just ask us about our children. Like I have said before, we are happy to educate.

 

 

Just Photos

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Photography is a hobby of mine, but I have had technical difficulties for the last few months. All is resolved, so I thought I would share some of the pictures from my camera. They span September to now.

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Standing on her own two feet

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It’s official, Lyra can stand on her own (with some support from an object). While this is a major milestone for any child, this is truly amazing for Lyra. Lyra has missed so many other milestones. She still doesn’t use her hands and arms well, and she still does not roll from her back to her stomach (she is close). But, if she holds our hands, she can pull herself up and stand!

This is what I am choosing to focus on today. I feel that many parents of special needs children do this. We fully celebrate the milestones our children reach. Lyra goes home from the hospital tomorrow. While we have been able to get her hydrated and greatly reduced her throwing up, we have not found a solution that stops the puking. We also do not know 100% why she is throwing up so much. The doctors have theories, but there really isn’t a test that can provide us with definitive answers. I am excited to go home, and I am worried that we will just end up right back here. It is a constant rollercoaster.

But today she stood on her own two feet. My little girl is defying the expectations the original geneticist gave us. She is a loving, engaged, active, strong little girl. Her tummy just doesn’t work quite right.

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P.S. Her onsie says “Loved”, you just can’t see it.

The Third Night

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I don’t know why, but I always find the third night in the hospital to be one of the hardest.  Mark and I trade off nights, so it’s not like I have had three nights in a row. For some reason, I just find myself a little more restless. Yes, Lyra is back in the hospital. We ate breakfast Christmas morning with the family, opened presents, then drove to the ER.  It’s not like we knew she needed to go to the hospital when we woke up Christmas morning, but we knew she wasn’t doing great. She hadn’t been doing great for awhile. However, once she was throwing up when we weren’t feeding her at all, we knew we had to go in.

So, here we are again.

At this point, some of the nurses on the floor know us from our last stay. At what point do you get a parking space? We were just here a month ago.

This time it looks like the doctors may try something new. The hard part is, no one really has an answer for us. We have no idea why Lyra stops tolerating her feeds. We have no idea why she won’t eat by mouth. The answer we most commonly get is, “she just needs to get bigger.” But, how can she get bigger if she just keeps throwing up? It doesn’t seem like anyone has a good answer for that. As frustrating as that is, it seems the team we are working with now wants to do more than just get her to “stable enough” and send us home to figure things out for ourselves. We may be changing the type of feeding tube she has (if she is big enough), and they aren’t going to send us home without solid confirmation that she is tolerating her feeds really well. As much as I would love to be home, this is where she needs to be.

And we really did have a wonderful Christmas morning.

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Sitting on Aunt Kristi’s Lap before Breakfast

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Sleeping on Daddy in the Christmas quilt after getting her IV