Sunday, December 13, 2015

A Very Special Santa

This morning, a local mall hosted a Sensitive Santa event. Open to kids with autism and other special needs, it took place before the mall officially opened for the day. The lights were down, there was no music playing over the speakers, and no shopping bags to trip over. There was a Christmas movie playing in one corner and a table filled with arts and crafts in another.

At the center, there was Santa. Sitting in his green suede chair in front of the largest Christmas tree I had ever seen, he exchanged kind words with brave boys and girls. I can imagine what they talked about; the new toys they wanted, and if his beard was real. Words and phrases Caiden may never say.

We knelt in an empty area, still close enough to see the Big Man, but not be in the way as we attempted to soothe Caiden out of a meltdown. We had gotten almost all the way to the check-in table when he lost it. I had tried desperately to hold back the tears as I gave the woman our name, failing miserably, it took several attempts to get an audible response out.

For fifteen minutes, we rubbed circles on his back, offered toys and snacks and to carry him, and try to protect his head while he writhed on the floor. He didn't want to leave, but he didn't want to be there either.

I cried some more, but I wasn't embarrassed. He had done so well last year, even been excited to see Santa, but the effects of his most recent regression were out in full force. He was going to miss out on something he had enjoyed because his diagnoses got in the way. It wasn't fair, it made me angry seeing just how much he had lost to his mysterious condition. He deserves a magical moment as well, especially with how hard this year has been on him, I wanted him to have that.

The woman who seemed to be running the event (I wish I'd gotten her name) pulled up videos on her phone to try and distract him. It didn't work unfortunately, but she was determined to help us.

He eventually noticed a few balloons on a shop sign and she allowed him to play with them. He immediately calmed down, even bouncing them back and forth between the two of them. Playing with a complete stranger, he was happy.

We tried again to approach Santa, but he simply wasn't having it and began to get upset so we backed off.

Then she hit us with it.

They were working on getting him more balloons. If we wanted to wait a few more minutes, we could lure him in front of the camera with them. Definitely worth a shot.

It worked.

He was still nervous, to the point that he crawled in front of Santa to get to the balloons, but he smiled. His face lit up and we were able to get a slightly candid, slightly staged picture of them. It was perfect. As quickly as he could, he ran past Santa to show daddy his balloons, but they'd captured an amazing moment.

Santa held his hand out to me and gave me a hug and pat on the back. He said Caiden was a great kid and we were doing awesome. I sobbed some more and went to pick out our pictures.

When Santa says you're doing a good job, you just can't help but believe it.

I expected him to have a hard time, but I wasn't prepared for just how difficult it would be for him, or how perfect his picture would come out despite the obstacles in getting it. Before we left however, I made sure I thanked the woman who went out of her way to get Caiden some balloons so we could have such a magical picture. I hugged her and we both cried together just watching how happy Caiden was with the balloons.

As we were walking away, I heard her say to the cameraman, "that's the reason why we do this."

And I'm so incredibly thankful there are people like her who do.

Saturday, November 7, 2015

November Update

We have spent the last several months trying to get Caiden stable, and so it's been quite a while since I've updated. Not much is new, and so far, I have mostly good news to share.

Over the summer, Caiden went through a very rough patch behaviorally, and we made the difficult decision to start medicating.

Our first attempt was a low dose of Zoloft. It worked well for a couple weeks and then things got really bad. Caiden lost most of his speech and began having outbursts that were unusual, even for him. He regressed back to hitting and kicking, and the repetitive behaviors got a lot more severe. We were unsure if it was a result of the medication or if Caiden's condition was getting worse. We decided to try a different med in the hopes that that was the problem.

Currently, we are finishing up month three of Remeron and I cannot say enough good things about it. Soon after stopping the Zoloft, Caiden's speech returned (his doctor said she'd never seen it as a side effect before), and in the last month he's learned several new words and is vocalizing more than ever. His behavior is phenomenal, with the exception of a couple tantrums every now and then, but we can live with that. He is back to being his old happy self, just with more stable moods.

It doesn't appear that his condition is getting any worse right now, and we are incredibly thankful for that. His overall progress has plateaued a bit with the exception of his speech, so he is still roughly at the development of an 18 month old. Unfortunately though, he has been sick, a lot.

We've made several ER trips in the last two months which ended up being for simple problems such as an ear infection and inflamed intestines. Though his tiny vocabulary is growing, because of Caiden's lack of communicable speech, when something is wrong we have no way of knowing what or how severe it might be. The only way to know for sure, is to have him checked out by a doctor and begin ruling things out. It's a time consuming and more often than not, unpleasant process.

As far as diagnostics go, we're kind of in limbo right now. October marked a year since we received his Autism diagnosis, but we still have a lot of questions. He is scheduled to return to the neuro-genetics clinic the beginning of December and we will be discussing the possibility of having further testing done. He is stable right now, so we don't feel as if we need to press as hard for answers, however we are still as determined as ever to get them.

We are excitedly getting ready for Christmas. We've found that preparing for holidays early helps Caiden adjust to the change, so we've already broken out the Christmas movies. So far he's not too interested in them, but I'm hopeful he'll come around soon.

Tuesday, May 26, 2015

Seven Months

An open letter to our son's former pediatric neurologist.

Dear Dr. M.,

You probably don't remember us, after all, its been seven months since Caiden's last appointment with you. Seven months since we sat next to you and begged for you to listen to us. Seven months since you dismissed our concerns about absence seizures. Seven months since you threw two opposing, and impossible diagnoses at us. Seven months since you declared our son's atrophied brain didn't require a follow up, and that we'd be better off seeing a geneticist. Seven months that you have failed to return our phone calls.

Like I said, you probably don't remember us, and we won't be back for a follow up, so let me refresh your memory and show you why our story should be important to you.

We came to you after an abnormal brain MRI left our pediatrician (and us) seriously concerned about Caiden. We were just trying to rule out cerebral palsy, what we found was much worse and started us down a diagnostic rabbit hole.

His brain showed atrophy.

Had you taken more than the five minutes you spent skimming over his MRI, you would have seen the real damage, you would have seen the holes. You would have diagnosed him with cerebral palsy and periventricular leukomalacia. You would have saved us from months of heartache and financial strain.

But you didn't.

Instead, by your inaction, for seven months, you let us believe that Caiden's mysterious brain condition had the potential to be terminal after we'd ruled out all other possibilities. We may be young and still somewhat new parents, but even we know why they save those tests for last.

That's where you left us; waiting for the hammer to strike, waiting for a prognosis, and not necessarily a diagnosis. Waiting to find out if the atrophy was progressive, and how much longer we'd have with our son. For seven months, I was scared to put Caiden to bed, afraid he'd have passed in his sleep, afraid each day could be our last.

Trust me, its a terrible way to live.

Last week, however, our pain was finally lifted. We had an appointment with a Neuro-Genetics team who thoroughly examined his MRI and saw clearly what you missed. We're just waiting on a confirmation, and we can add those two diagnoses to his list, while we remove two of yours.

Two completely manageable, non-degenerative conditions. Under normal circumstances, they would have crumbled us, but instead, it was an incredible relief.

I don't know if you have children. I don't know how long you've been a pediatric neurologist. I don't really care. What I do care about though, is that you know that you failed us. In every way a doctor can fail their patient.

Not because you got a diagnosis wrong, but because you didn't care enough to try and get it right. You have to care about the people who come to you for help. If you don't, you leave them in positions like the one you left us. Thankfully, we had others who took our concern seriously, and friends and family to stand by us.

Our story turned out alright. Our son's conditions are not terminal. If they had been, and we trusted your judgement, would you want to live with the guilt that you did nothing? How many others have you failed the way you failed us? Can you live with that number?

Wednesday, April 29, 2015

Complicating the Typical

Yesterday we spent most of the day in the doctor's office with Caiden. Something that's not out of the ordinary for us, but why we were was a unique occurrence. Aside from his diagnoses, he is usually the picture of perfect health, but Caiden had woken up in the morning not acting like himself. We tried going to therapy, but he just cried. He wouldn't eat or drink anything, and just wanted to lay on the floor.

He couldn't tell us what was wrong, and not wanting to jump to conclusions, we called the doctor to see if she wanted to check him out.

While we waited for a call back, I attempted to take his temperature. Easier said than done. He fights it and moves so much its hard to get an accurate reading. Over the next hour and a half, I took it three times, and each time it was significantly higher than the last.

I called again and got an appointment for later that afternoon.

When we got in to see her, there wasn't anything obviously wrong with him other than the fever. On a whim she did a test for strep throat.

It came back positive.

A typical childhood illness made more complicated by the fact that not only can he not tell us what's wrong or where it hurts, but he has an extreme aversion to oral medication. Giving it to him means holding him down and forcing him to swallow while screaming. There is the very real risk he could inhale it and asphyxiate or choke. The typical treatment of strep of course being a week long course of antibiotics.

We had two options. Get a prescription for the normal treatment and force it down his throat everyday for a week, or just one injection of a more powerful, long acting antibiotic.

Unfortunately, we had to go with the injection. A single, very painful injection of a thick antibiotic formula into his thigh.

His screams were heartbreaking, and they continued well after they'd administered the injection until he finally fell asleep.

Today, he is thankfully feeling better. His fever is down and he's taking tentative bites of food. However, his leg is hurting him. He's refusing to put any weight on it and shakes when he tries. He's hardly left the couch since he woke up this morning, when he does, he cries.

It was a simple decision to make, and what was best for him in the long run, but I still feel bad that he's now hurting because of it.

Even simple everyday things are complicated. For a typical child, they'd be able to tell you where it hurts. You'd be able to look in their mouth without needing three other people. You'd get the regular medicine and not even realize that there are alternatives that even the doctor has to look up, and then get from another office entirely because they don't carry it. You surely wouldn't know their names or doses.

We do.

We have to do everything a little different. Sometimes that means therapy instead of play dates. Sometimes that means sign language and babbling. This time, it meant a painful leg for a day, instead of a week of fighting to get him to take medicine.

Tomorrow will be better.

A week and he'll be back at therapy.

A month from now and it'll just be another bump on the road.

He won't remember any of it, and for once, that's just how it should be.

Wednesday, January 21, 2015

A Letter of Advice to my Former Self

To my former self, on the day we received one of Caidens first (and scarriest) diagnoses;

Not every parent can say they have their child's pediatrician's personal contact information, but then again, Caiden isn't the typical patient. You should be proud of yourself for deciding to stick with this doctor. She's going to be an essential part of the diagnostic process, and your biggest - professional - supporter.

When you receive one of his very first diagnoses, she's going to call on her own time from her personal number so you can talk about it. Remember to save her number like she tells you to, you'll need it later. You'll spend a good half hour on the phone scribbling down notes as she explains three words that should never be put together when talking about an otherwise healthy child.

Global Cerebral Atrophy.

Its only by chance that we stumbled upon it, and it won't be the last unexpected diagnosis in his ever expanding medical file. That one routine MRI to rule out cerebral palsy, a possible result of his prematurity, will be the catalyst that turns your life upside down and catapults you into unknown territory.

Don't waste your time Googling it, you won't find much as most of it doesn't pertain to him, your best source of information will be the neurologist. I know you're scared. You thought we were just dealing with autism, something I promise will finally be diagnosed in a few more months, but now you're suddenly faced with the very real possibility that his brain is dying, and its terrifying.

Go ahead and cry, just remember, you are not to blame for this.

Make sure you take notes when she calls, even if they're a mess. The other doctors you're referred to will want to see them, its difficult keeping all of his doctors on the same page, so notes and appointment summaries are very important. Don't forget to bring his records to every appointment.

You're going to hear words like cancer, deformity, trisomy, and biopsy, but six months, three additional doctors, and a dozen tests later, most will come back normal, and you still won't know much more than you did that day.

And that's good, it means most of the really bad stuff has been ruled out. You aren't in the clear yet, but you'll handle each bit of information the best way you know how, and you should be proud of that.

Remember that in order to find out the answer, you need to pace yourself. If you schedule too many things too close together, you're going to get burnt out. You can't be his voice if you're hospitalized for exhaustion.

Lastly, and most importantly, try to remember that you're a good mom, even when you don't feel like one. Despite the mountains of self doubt and mommy guilt, I want you to know that he loves you, even if he can't tell you for himself.

Monday, January 12, 2015

The Importance of Routine

Its 9:30am. Caiden is eating breakfast right now. Scrambled eggs, toast and a banana - his favorite. Winnie the Pooh is on, and he's laughing at all his regular spots. Eeyore bounching down a hill is as hilarious today as it was yesterday, and the day before. The poor donkey's melancholy is something I'm all too familiar with.

Just a half hour ago, I was sobbing in the kitchen over a pan of eggs, and not because I'd realized I had forgotten to add cheese to make it just the way he likes it.

Ten minutes before that, we were at therapy.


Caiden has gone months without a serious meltdown. Even through the holidays and the major schedule changes, he didn't have a single one. Sure, there are plenty of harmless tantrums, but its been a while since he had one of his bad ones. The hour long (plus) ones with blood curdling screams, gagging, hitting... the whole nine yards.

He had one this morning. At therapy. After being there barely five minutes. His regular physical therapist wasn't going to be there today, so we were asked to come in a little early so that the other PT could see him and avoid a scheduling conflict. Sure, no big deal.

But I messed up. I was under the impression that he would still be having speech and OT first, and then see the other PT. They turned it around. PT was scheduled first this morning, and with a different person. Big, BIG mistake. He cannot do PT first.

Caiden, understandably, lost it. For twenty minutes.

And then mommy did too.

We've been dealing with these meltdowns for almost a year. They started shortly after he lost his speech. Almost a year, and I still have no idea how to help my son. All I can do is try to make sure he doesn't hurt himself and remind him to breathe, which of course he doesn't understand.

Its horrible. Heart breaking. Especially when surrounded by people who want to and are trying to help, and even they give up and just watch. I would rather deal with HELLP all over again than have to watch him struggle, unable to calm him.

Its days like these that I hate autism. Mostly I hate it for taking away his voice, for instilling a twisted sort of fear in me I never knew before, but today I hate it for taking away the spontaneity in life. He will never get bored of his routine, he will never long for change, he may never find joy in adventure. I often wonder if we'll be able to take him to a park this summer. Will the change in routine be too much for him? Will he be able to adapt to daycare or preschool when he goes?

He was fine as soon as he was buckled in the car, his routine back in order. And so we sit here doing the usual, him eating breakfast like this morning's meltdown didn't happen, and me writing and wondering, and trying to hold myself together.

"Do you want to take him home? We can try again tomorrow."

Tomorrow we'll be back at therapy. His regular PT will be there, and he'll see her after he sees his OT and speech therapist. It'll be just like any other day. He might get mad, but we'll make it through the whole appointment. He'll go down the stairs on his own, and we'll clap for him. He'll use his signs, and we'll encourage him. He and his therapists will forget about this morning.

I'll try too, but I'll remember it. I'll remember to double check the next time I schedule something. I'll remember when one of our doctors asks how he's been doing. I'll remember when I still won't know how to help him when he has another.