See Christian and Lola's ISR video!

Monday, May 28, 2012

Being awesome.

I'm baking chocolate chip cookies right now. Yes, the homemade kind. We're leaving on our annual family trip to Mexico tomorrow. You might have heard about it here and here.

While beating that cookie dough senseless, I had a chance to think. That's what baking does - it helps me think. I was thinking about some of the really pointed responses I got from mentioning what happened at school in the last blog. I didn't get an influx of commentary on the subject, on the blog, online, or in person, but what I did get was so exactly what I needed to sort out these new found thoughts and feelings.

To offer more explanation, first off I want to reiterate that Christian had a wonderful school year. I never once felt he didn't belong and I always felt there was a place for him there where he was wanted and included.

His last week of school was a busy one and it seemed as though we kept finding ourselves leaving school in the middle of lunch rush where there are well formed lines of children in each classroom zig zagging their way back to class after lunch. During this time I usually have Lola on my hip while I'm trying to push Christian through the school courtyard, the office, loaded into the van and back home for lunch.

But the last week was different. I noticed on not one, but three occasions with three different students that they were laughing at Christian and pointing. They were all children in about the first or second grade. At first I thought maybe I was mistaken. Surely they were not doing what I think they were doing. But then it happened again. And again.

To say I was heartbroken would not be completely accurate. I was devastated.

I guess it's a right of passage, you know. Kids get teased in school. That's what happens. Not many escape unscathed by the teasing and/or bullying of schoolyard classmates and bullies. But I just thought Christian was exempt. A few times people have asked if Christian has been teased and I almost scoffed at them.

Absolutely not! - I thought. Why would anybody ever tease Christian, of all people? Christian is so helpless and can't defend himself. Who would do that? What kind of a person would...

A first or second grader who doesn't understand what they see. That's who.

And I guess I let my devastation get to me because I didn't know what to do. I didn't have the answer. I mean my insides wanted to get down right abusive. Obviously, that's not appropriate. And the kids were moving so fast, it was chaotic. Should I have stopped the entire class and made it a teaching moment? I didn't know what to do.

Then another mom gave me the answer. She told me it wasn't my job to teach them. My first job was to stand up for my son and give him a voice. She told me some other really smart things to do, too, so now I feel a little more equipped and a little more confident. Dammit, I can stand up to any old doctor and advocate for Christian with one hand tied behind my back. But when it came to a gradeschooler, I had no bag of tricks. At least now I have some idea of how to address the situation if and when it happens again.

I was talking to Christian's PT about the whole situation and I'm paraphrasing but she was talking about how inclusion programs are wonderful and so helpful in educating students, teachers, parents, everyone involved. But it would be so great to just have a school where nobody knows the difference, the kids don't know they're different and they're all just...awesome.

It would be great. She's awesome, by the way.

So tomorrow we're going to Mexico where the ocean knows know differences. We'll eat homemade chocolate chip cookies - Christian will take his blended - and we'll just be...awesome.
Wednesday, May 23, 2012

What I learned on the last day of school.

It was Christian's last day of school today! He made it through his first, whole year of preschool! We really couldn't have asked for a better experience and I can't believe it went so fast.

We baked two batches of chocolate chunk cookies for Christian's team - his teacher, his aides, his PT, OT, Speech Therapist, as well as his team from where he spent the first half of the year.

That, there is a sun tea jug full of chocolate chunk cookies. You may notice Christian is not embracing this cookie jug and I'm pretty sure it's because he wants no part of giving all of them away. Sorry, Christian. They're all for the teachers!

Christian with his teacher, Miss Christy. We'll miss her, but she'll be his teacher next year, too!

I'm so proud of my little dude! He was too tired to celebrate.

This school year was full of a lot of change. I'm sure Christian learned a lot. He learned to hang without Mommy always in his face (ignore the picture above). He learned to be around other kids without getting upset or over stimulated. He made me pictures and projects and even planted a bean plant that sits on our window sill. And it's still growing!

I've learned a lot, too. I learned to trust that Christian would be just fine without me. There was not a single day that I kissed him goodbye that I felt he wasn't safe, cared for, and wanted by his classroom.

I learned that Christian is teaching others at his school about acceptance every day. And I learned that kids his age were readily accepting of him, even getting down right excited when Christian came to school. I learned that Christian had friends! He was invited to his first birthday party of a classmate, he went on his first field trip, and he got to "stand" outside with his friends. I learned there was always room for Christian.

We had a pretty positive experience this year. But in the last few days of school there was what seemed to be a foreshadowing of what may come in our future. After a whole school year of abundant acceptance, I noticed while pushing Christian through the school courtyard during lunch hour, that some of the smaller children, maybe around 1st grade, were not only staring (which we're used to and not really bothered by at this point), but were laughing and snickering at Christian. This not only happened once, but a few days in a row.

I understand the staring. They don't understand what they see. But I learned that the laughing, even from a small child that doesn't know any better, hit me right straight in the heart. I think this experience deserves a whole post, which is coming, but the short version is that I learned that standing up for Christian is going to take a different turn in our future. It won't always mean asserting ourselves and advocating in the medical world or with IEP's. It will mean something totally and completely different. But that's for another post.

For now, I'd like to highlight the positive of this year. One of which being one of Christian's little friends from school named Eva. Eva is a beautiful little girl with big, gorgeous eyes who is living with Holoprosencephaly. She and Christian get to ride in their chairs to recess. And today, the last day of school, I talked to her mom, Gabby for a little longer than we usually do. In those short, last five minutes, we were on the same page like nobody's business. We had different stories in how we were brought to the same school, the same classroom, but we shared the same grief, the longing, and the same bittersweet.

So the biggest lesson for me this year, and fittingly learned on the last day of school, is even when we feel we are alone and that not a single soul on the planet knows exactly what we're going through, we're proven wrong. And that's a really good and appreciated lesson to learn.

What else did I learn? She has amazing insight. We're learning the most from these little ones in front of us that ride their chairs to recess.

"...But I swear that little girl is a teacher! She taught me how to spell, H-O-L-O-P-R-O-S-E-N-C-E-P-H-A-L-Y, M-O-T-H-E-R and more importantly F-O-R-E-V-E-R!" - Gabby's Blog.

Wednesday, May 16, 2012

'Just real quick' - About that handicap spot...

We recently became a member of the Handicap Parking Permit Club!

I put it off for a good, long while. Not because I didn't want to face that we needed this, but because I honestly felt like we didn't need it quite yet. We're healthy, we can walk. Other people might need the spot more than we do! Let them have it. For now.

I think we had been asked about ninety seven times if we had a parking permit yet and why not. So it became more of a rebellion. More like a procrastination, actually.

Then we went to a few public events and couldn't find parking. We drove by a front row full of empty handicap spots. And Manny looks at me and says, "And why don't we have one of those again?"

I also started experiencing this - gee, wouldn't it be nice if I had some room on the side to get Christian out of the van - kind of feeling.

So despite my very best efforts at procrastination, I gave in and got the darn thing. And it has been glorious, People.

Now, we pull right up to the front spots at school and unloading and loading is so much easier! Why didn't I do this sooner?!

And then one day, I noticed a delivery van pulled up to the front of the school just real quick. It was blocking a handicap space. A few days later I noticed other parents WITHOUT any sign of a permit parking in those spots just real quick to pick up their kids. And then another day, there were no special spots for us so I sat and waited for one of the just real quick parents to pull out...glaring.

I'll be the first to admit, I've pulled a just real quick a time or two. But now that I'm on the other side of that, and I'm starting to understand just how essential these spots are to the daily well being of not only Christian and me, but many others with disabilities, the just real quickers are really starting to infuriate me.

I've been known to pull into a handicap spot at Christian's school, look over and notice a just real quicker sitting there while another party is running in or whatever and giving the stank eye a time or two. I've been getting really animated, actually, whipping out my parking permit all dramatic-like and hanging it on the rear view mirror, glancing over to make sure they notice that I know they know I know.

I guess I've gotten so fired up about this because it happens - able bodied, seemingly healthy individuals using handicap spots just real quick because it's inconvenient to park and walk their asses to their desired destination - waaaay more than I ever noticed or expected.

I just wanted to do something about it! What to do? Report it to the school? Leave a snarky, yet hilarious (to me, anyway) note about why this person is being such a brat?

Enter the wonderful world of iPhone apps. Apparently there is an app I can use (and have already hastily downloaded, thank you very much) where I can take pictures of the just real quick offender, send it into a website, and they supposedly report this to the police department who then presumably issues a ticket or a warning or something.

Now, I don't know if this actually works, nor have I used my trusty little app yet. But it sure makes me feel like I can do something about this. Or at least it makes me feel better for a second.

Look, just real quickers, these spots are designated for a reason. We need extra room to get our kids out of the car because they can't do it themselves. This is a convenience afforded to us, the lucky ones, who have so many other inconveniences to deal with throughout the day that you will probably never know or understand. You have working legs, and functional limbs that will take you from point A to point B, and believe me, I'd trade ya in a second if you wanted our parking permit to save you a few steps.

All I'm saying is don't be an ass. Have some consideration. Appreciate your function and ability to simply walk. And please leave those parking spaces for those who aren't afforded that luxury.

Or you just might have your beautiful picture taken and sent away by this dramatic, parking permit whipping, wheelchair pushing, kid loving Mama. You know, just real quick.

Friday, May 11, 2012

It works.

I've done a lot of writing about food and our issues with feeding Christian. I wanted to know the secret. I asked what the secret was to get Christian to hold down his food...for good.

Last week I was reading over my facebook news feed and I noticed the blended diet for tube fed children group I subscribe to posted the following:

"...Let's share what we know now that we wish we had known then about blending food."

My answer:

That is would work.

I will be the first to admit I jumped into the blended diet for Christian head first without knowing what I was doing. I told myself: What's the big deal? You feed your other kids! It's not rocket science! You know what you're doing, Woman!" And then I had to put it on repeat.

Finally we worked something out. But the vomiting didn't stop. We experimented with different foods, acid reflux medications, natural remedies...and still...vomiting.

It was so frustrating! It felt like a kick in the stomach every time it happened. And then my friend, Jen, also a blended-diet-tubie mommy, told me to stop the formula. She told me it would work. Just take it away.

But I only gave him a small amount. Surely that couldn't make that big of a difference. And she was basically asking me to jump in head first again. Formula was our anchor. If all else fails, use formula, right?

How could you even think that, Shauna?! You breastfed your children! Not a drop of formula! And now it's your best friend?! What is your deal?!

(I hope my talking to myself doesn't offend anyone who used formula for their kids, brian injured or otherwise. Obviously, it's not all bad, it's just not natural for me. Just me. Not speaking for anyone else, nor am I condemning anyone else. I'm really just speaking to the crutch I felt formula had become.)

Back to my friend, Jen. I trusted her. But I was wary of advice due to so much other advice working for other children. But not for Christian. A little jaded, I followed her advice anyway.

So we pulled all the formula. Even the little, tiny bit we were giving Christian over night. Another small leap, albeit head first, in the many leaps we've taken in this journey. But this leap was a good one.

A month later, Christian was just about vomit free. No acid reflux medication since about October. And hardly any vomiting. We've gotten a few episodes of spit up or coughing, but that really only happens when he is sick (hardly ever) and has too much phlegm going on in his upper airway or when he's pushing. You know, when he's going #2. Sometimes he pushes and things want to come out both ends!

It works. There is no secret. Wait, actually, the secret is food. If he is constipated, we use food as the remedy. His tummy is no longer upset. I don't have to cover him with two towels on our way to school so he doesn't throw up his breakfast all over his clothes.

And blendy blends? They're a piece of cake. Sometimes, literally. He has waffles, chicken soup, pumpkin, a variety of fruit, spinach, kale, macaroni and cheese, and even carne asada. It's fun! And it feels good to feed my son. Really good.

So I want to give a shout out to all of my friends and professionals who have supported the blended diet, offered advice, encouragement, suggestions, remedies, and recipes.


Jen Hodder (Avi's Mom)
Sarah Robinson (Mason's Mom)
Pam Rogers (Makenzie's Mom)
Kim Edwards (Fabulous OT)
Blenderized Food For Tubies (Check 'em out on facebook)
Dr. Delp (Christian's pediatrician who is in full support of the blendy blends)
....and anyone else who's given us advice or even spoken about what they use for blends!

Head first. Leap of faith. And it works.

Sunday, May 6, 2012


Last week we finally had our follow up appointment with the orthopedic doctor. But this time we had our PT in tow, which helped us all better understand what Christian and his body are doing. Luckily, this visit was a successful one in that Christian was much more relaxed so we got really good pictures of his hips. The last set of pictures, taken about five months ago, showed that his hips were dislocating, or falling out of socket. This wasn't a huge surprise to us. At the time, the doctor estimated that one side was about 90% subluxed and the other was about 30%. But with these new pictures, it shows more like 60% out of socket on both sides, which is just what I suspected. I had a feeling Christian's positioning and tone exaggerated the previous pictures.

So what do we do? Well, the decision is to operate or leave it be. If we decide to operate now, we're told it will be a lot easier to place the hip back into the socket. But it's a big surgery with a partial body cast that lasts for six weeks! I just don't know if it's necessary. His hips don't seem to be bothering him and he doesn't even seem really sensitive to rotation or sitting. The alternative is allowing them to fall out. And if they fall out, then what? This really isn't anything I considered when we started this journey. Just another example of the twists and turns that occur in life after brain injury with a child that doesn't walk or crawl. It was easy for me to accept because it made sense. He never even took his first unassisted step at the time of his injury. So the odds were stacked against him.

Let me share my biggest concerns. Because Christian doesn't bare weight often, his femur bones are very fragile and very thin. We've had a few fractures already. I'm afraid if they cut into them, which is what the surgery would entail, there will be problems and his bones will not be strong enough for the hardware. I'm also concerned that we will be traveling down a road of more issues and surgeries caused by the initial surgery. If surgery is inevitable, I want to wait until it is absolutely necessary.

The doctor said he is okay with whatever we decide and that he can make an argument for both sides. He did suggest a minor, outpatient surgery to Christian's knock knees. Because they are pulling inward, it actually puts more pressure on the hips while pulling them out further. So this would straighten out his crooked legs and hopefully slow down the subluxation of his hips.

After discussing this with my husband, we're both in agreement that we want to hold off on surgery. We'll check his hips every six months to see what they're doing. But, we are considering the outpatient knee correction.

You know, I'm at peace with the idea that, barring any Divine intervention that God might bestow upon us, Christian won't walk. It's honestly not a big deal to me. If he enjoys life and is happy and healthy from the comfort of his wheel chair, I'll be a happy Mama. And because we're not trying to protect abilities like walking, hips falling out of socket is not a devastating idea, as long as there is no pain involved. We have to ask ourselves - Why are we doing this? We're not protecting his ability to walk. It will always go back to pain. If he isn't having any, we're just not going to make any moves.

In my Mommy heart, I firmly believe that if his hips fall out of socket completely he will be fine. If, for one second, that belief is challenged and Christian begins to experience pain or discomfort, then we'll reevaluate. I think when it's time for surgery, we'll just know.

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