GI appointment

  For those that don't know GI stands for gastroenterologist.  That is a Dr that is hopefully going to fix my baby girls gut!
  Finally, the day of Sadie's appointment.  It's not like it took a long time to get in to see him, but when your child is screaming in pain, everything seems like it is in slow motion.  The Dr was really nice. He listened to everything; her history, current issue with pain, my concerns and current plan with her meds, and what I wanted out of this appointment.  I explained that I have this huge fear about her intestines becoming twisted because that is so common for kids with Cornelia de Lange Syndrome.  Every time she screams in pain my thoughts immediately go to a bowel obstruction and I become a total mess, second guessing my every thought and action. He reassured me that at this point she does not have any signs of intestinal malrotation.  He examined her and talked about all of her past surgeries and tests that she has already had done in her lifetime.  There are no signs that this is the issue. He gave us his thoughts and his plan for moving forward and how to help with her pain.
  I won't lie, I was a little reluctant to follow his plan but I will.  Even though I feel like I have he constipation under control, he still feels like I don't.  So he wants me to work on increasing and decreasing and changing the meds all around, and consistently giving her something every single day no matter the outcome until we get her consistent and going daily.  Hopefully this will help with the painful screaming.  Fingers crossed!

What is this PAIN!?

Pain.


Let's talk about pain, Sadie's pain.


Sadie has a very high pain tolerance.  She can hit her head, be poked with a needle, hit by a ball, fall off her chair and very randomly does she ever cry. She'll just look at you like "what was that for" and then she goes about her own business.  However, that high pain tolerance only holds true for external pain.  When it comes to internal pain, this girl will let you know.  Then the guessing game begins.


Our thoughts always go straight to her gut.  Is she constipated? Maybe we need to vent her tummy?  And generally fixing those 2 problems will solve the pain issue.  But recently (since January) her constipation issue is getting harder to fix.  We used to be able to give some miralax and/or a suppository and problem solved and she would be good again for another few months.  Her constipation was not an everyday occurrence, just an every few months issue.  Well that is not the case now.  She seems to be more constipated, then not constipated.  Why all of a sudden her gut is having this issue all the time is beyond me.  I increased her bowel meds and added other meds and took away meds and adjusted other meds and finally I got her to a somewhat normal happy bowel regimen.  Her poop was good, no more constipation.  We went a week and half. No screaming in pain and good bowel movements.  Yay, momma fixed the problem!  Another point for me. Until one day the screaming in pain returned. NOOOO! It could not possibly be constipation, I have that problem under control.  So what is it?


I talked to her Dr and we went over all of her systems; neuro, resp, gi/gu, skeletal, immune etc... Everything was negative.  I still felt like it was a gut issue, so we got a consult for a GI Dr.  Yes, we had to add yet another Dr to Sadie's list of specialists.  Honestly, it's actually a little surprising that we have waited this long to add one, especially with all the gut issue that she's had the last 2 years.  Yay! for us for holding out this long.


The GI office called and the appt was set for about two weeks away.  Which was fine, we had gone this long, we can survive another couple of weeks.  I was wrong!  One day she started screaming, I did all my tricks, including giving pain meds and it wasn't working.  She just continued to scream, rolling all over the place, grabbing her stomach/chest.  I couldn't take it anymore. I started crying and getting so frustrated cause I felt so bad.  This poor child has been screaming in pain since January!! That's it, I've had it, I'm taking her to the ER!  I can't handle that painful scream anymore.  We got ready and right as I was going to walk out the door, the screaming stopped and she passed out from exhaustion (which is her normal way of coping, it just took way longer this time).  I then calmed down and started calling her Dr's.  Something has got to give! Her Dr got her GI appt moved up and her nutritionist was going to look over her diet and talk to the Dr about possibly changing her diet to see if that is the issue.  I had multiple people working on different things to try to help this little girl.  Something has got to give... and SOON!

Just something about these places

  Today Sadie went to the dentist.  It's not her first time.  She's been there about 5 times I think.  As I was sitting there watching her, with this man hovering over her with instruments in his hand and in her mouth, I was in awe.  She was so calm, no crying, no fussing, no fighting, no nothing at all.  Now, did she just open up when he said too, no, cause she can't hear. But when he opened it with his tools, she opened instead of clenching her jaw.  No, she did not hold it open on her own free will because she doesn't have that understanding, but she didn't fight the soft block he put in her mouth. She just laid there, quietly, letting him do what he needed to do.  The dentist did not clean her teeth, as she doesn't need them cleaned yet (a perk of being tube fed and drooly).  But he did paint a fluoride on them. She just sat still.
  Sadie is like that: calm, happy, and content when it comes to Dr's (medical, eye, and dentists).  Whenever we are in their presents (and she's feeling good), she just is happy.  She lays silently and smiles, occasionally giggles and wiggles.  She stares off into space, completely mesmerized by the environment.  She never fights the Dr. She lets them do what they need to do. The first few times I thought it was just a fluke, but the more time goes on, the more common it's becoming.
  I don't know if it's just the feel of the environment or if she just feels a trusting vibe from the Dr or if it is because we are in these environments so often that they are second nature to her (which would be really sad), but her demeanor just amazes me.  She amazes me (have I ever told you that before?  ;) LOL)!  For a little girls who can't hear directions, or hear me prep her for the visit and what is going to happen, or who supposedly does not have the mental capability to understand what is going on, she sure does behave like a little Angel.  Just one more sign that she is an Angel that God sent to earth for me.
 

I Have This Fear That People Think Our Story Is Sad

Guest Post:  I couldn't have said it any better myself.


  Several years ago when my daughter Julia was about 2, I met up with a friend for coffee at Starbucks. We had just settled in to our seats with drinks in hand when two little ladies shuffled by us. Upon further inspection and a little eavesdropping I realized the pair was an elderly mother with her adult daughter, who had Down syndrome. Both my friend and I observed them for a few moments before turning back to each other. I was about to comment on how precious the two of them were when my friend spoke first and somberly said, “Some days you see the sad ones.”  I’m sure my face fell. Sad ones? I had not expected that.

  I don’t remember what I said in response; I probably just tried to move us quickly on to safer ground. But the moment stuck with me. We had just witnessed the very same scene but saw two very different stories.
  I saw happiness and family. I saw something I prayed for in my own story: many more years with my daughter.  My friend saw sad.

***

  I have this fear that people think our story is sad.  That people hear or see “special needs” and automatically categorize us as sad.  And no matter how many times I profess the opposite, some people will continue to think my words are nothing more than a positive spin on a negative story.  And no matter how many different ways I try to explain that Julia is a blessing, people will assume I am simply making the best of a bad situation.

  I fear the assumption will remain for some that we are putting on a brave face to hide our disappointment. That we are somewhere between a saint or a martyr for loving our child. That we are admirable for continuing to put our best foot forward given the hand we’ve been dealt, but the bottom line remains our story is sad and we are the sad ones.
  And while I know I will never change every person’s mind on this, the fear of being so grossly misunderstood drives me to keep trying. Julia deserves that.  So once again, for the record, we are not sad about Julia.
  We are not enduring her, we are not tolerating her, we are not suffering as a result of her. We love her, and we like her. And it hurts when loving her is seen by some as heroic — it hurts because nothing could be farther from the truth. It does not take heroism to love our child — and I wonder what I am doing wrong in telling our story that some would still think this is the case.
  In regards to the compliments we are given, I am grateful for them and humbled by them. I know they are being given in kindness, and for that I say thank you! But I do not make the connection between Julia and these qualities. I hope I would be that kind of person with or without Julia. I have a long ways to go, but I want to be a positive, optimistic, grateful, strong, brave, vulnerable, compassionate person period. Not in spite of something or someone.
  And the same is true when I do not display those positive attributes (which is most of the time). When I am moody, and negative, and anxious, and snarky, and grumpy, and overwhelmed — I am those things by my own doing — with or without Julia. She is not to be blamed.
  If I am positive it is not an act of overcoming Julia; if I am negative it is not to be blamed on Julia.





  If you see any good in me, it is by the grace of God.  And when you see the bad, the fault is my own.
  A lot of people are happy in seemingly hard situations and miserable in seemingly great situations. I think we have to stop assuming we understand situations based on appearances and let people tell us how their story goes — and then believe them.
  My story with Julia is a good one. My situation makes me happy. She is my best gift. She is not the hard part of my life; she is not where I have to be brave or dig deep.
  In her memoir, Lena Dunham wrote this in response to people praising her: “It’s not brave to do something that doesn’t scare you.”
  This is how I feel about my life with Julia. I’m not being brave; she doesn’t scare me.  What scares me is thinking about life without her — that is when I have to be brave.
  A little girl with epilepsy died suddenly two days ago. She had been doing well recently, she wasn’t even in a really bad place with seizures. But she died. Unexpectedly. At the age of 13, while sleeping in her daddy’s arms, because of epilepsy.
  This scares me.  And this is the sad story.  But not ours. Not yet. Not while we are still together.
So friends, will you promise me something?  Will you promise me you will try to fight the thought that we are a sad story? Will you trust that the story I am telling you is the true version? That Julia is a blessing, without qualifiers. And every moment we get with her only makes this story better.
And if, God willing, we are given many more years together, and we get to be little old ladies, leaning on one another as we shuffle side by side through Starbucks, will you promise to think to yourself when you see us go by, “Some days you get to see the really happy ones.”? And that will be the truth.




By Laurie Arnold  Follow this journey on I’m Julia’s Mom.

Check her out!

  The other day my mom was at my house and she was going to take Sadie outside to put her in her wheelchair, as her school bus would soon be arriving.  She was about to walk out the door when Sadie wiggled a little funky and my mom wanted to put her down to readjust her position.  As she was bending over to put her down, Sadie decided to put her feet down. It pleasantly caught us off guard.  Sadie decided to just continue to weight bear on both legs.  Then my mom decided to let go to see what Sadie would do and VOILA! She stood there all by herself, head held high and back straight.  As we were watching her, I was wishing my cell phone wasn't dead so I could take a picture, thinking that by the time I ran and got my real camera, she would have fallen.  However, she continued to stand there like a champ, just staring at me.  I decided to attempt to go get my camera.  Not only did she continue to stand but she followed me with her head, watching my every move.  I came back and snapped a few pictures, then she started wobbling and my mom caught her before she collapsed.  We were in complete shock!  My baby stood!  It was the most beautiful sight.  I was told to never expect anything from her. Here she is standing alone, no one holding her up.  Yes, she was leaning a little on my mom legs, but that was it.  We rarely see her weight bear on both feet, at the same time, for a long period of time without being in her stander.  In the past, and even today as I write this, when we hold her/attempt to stand her, she will either pull up both her legs like an infant, or she only puts one leg down, like a flamingo.  Not sure what came over her at this moment, but I'll take it!  I'm not naïve, I know that this was probably a freak moment, BUT if she does it once, she will do it again.  She's proven that to me over and over again.
   After my mom put Sadie on the bus to go to school, she also left my house.  As I sat there alone, thinking about what I just witnessed, I started to shake from excitement and adrenaline and I cried happy, disbelief tears.  Thinking back to Sadie's first year of life and listening to all the negative things that all these Dr's kept telling me.  How I kept thinking they have to be wrong, I had so many hopes and dreams for my baby and had so much faith in her, but yet got so discouraged at times by what others would say or even sometimes by Sadie's own actions..  All the therapies, all the Dr appt's, all my own therapy sessions with her at home, they are all worth it!  How proud I am of this little girl.  How far she has come.  How she is proving Dr's wrong, left and right.  It was such an over whelmimg feeling.  I don't even know how to describe it.  Every moment, every comment that has been made, every tear we shed,  has all been worth it when I see her accomplish a milestone.

Hope sees the invisable, feels the intangable, and achieves the impossible.  -Anonymous

Goal Met

  For this school year one of Sadie's IEP goals was to be able to tolerate being upright for long periods of times and to sit independently up to 45 minutes.  Check! Goal accomplished.  :)  This little girl is awesome at sitting.  Well sitting in a chair, on a bench, or on her new bed!  Unassisted with no back behind her.

Sitting so perfect and proud!

  We are still working on sitting on the floor.  She's done it a few times, but not enough to say that she has the skill.  Weird, she can't figure that out. You would think that it would be easier because of having a wider base with her legs in a ring shape.  But that's ok, we will continue to work on that skill and use the skill of "chair sitting" for now.

   

Why Dreaming Big Is Mandatory

Guest Post: by Stacy Warden

When you dream big about your child’s future, others around you have a tendency to think you can’t grasp the hard truth in front of you.
Dreaming big doesn’t mean we’re ignoring the challenges that our child faces or the probable outcomes based on medical predictions.
When we dream big we encourage others to dream big with us.

And dreaming comes in all different forms and sizes.

While we all of course are dreaming the ultimate dream – complete recovery and healing for our child with special needs – we have so many other dreams that have the potential to be life altering.
We can dream about the invention of a new product that would make it easier for us to travel, for our child to participate with his or her peers, or assist them tasks needed for independent living.
We can dream about new technology that will allow us to hear our child’s voice, digitally enhanced by using their own vocal sounds to create what their voice would actually sound like if they were verbal.
We can dream about a world that never stares at a child with special needs.
We can dream about government resources and insurance benefits not being so hard to access.

We can dream about lots of things and it’s okay to dream big - because dreams can and do happen.

When we dream big we plant the seed of greatness to grow.
We are challenging the universe to put our intentions into play.
Dreamers are never low on hope because they know that anything remains possible.
People might want to try to convince you that dreaming sets us all up for disappointment on the special needs journey, but I tend to think it’s just the opposite.

Dreaming presents us with recognizing there are endless possibilities, sometimes it even encourages us to chase them.

Parents designing equipment that they know that could benefit those with disabilities; parents knocking on the footsteps of Congress dreaming of changes that will allow those with disabilities to be able to change in public restrooms with dignity, dreams that we can make this world a better place for our child so they will be safe and supported once we are long gone and or no longer able to care for them.
Dreaming is more than okay.
And we need to hold onto all these dreams.
And then we need to find active ways to try to make these dreams a reality.
And maybe secondary dreams could happen in the process; like watching our child sit for the first time, speak “momma” and then form sentences, and then talk non-stop, or be able to transition to eating solid foods… dreams are endless.
Don’t give up on them.
It’s healthy to dream.