learning to navigate the world, j-bear style

Tag: medical care (Page 3 of 3)

IEP Update and Miscellany

Yesterday the public schools graced us with their presence while J was at playgroup.This after a few curt exchanges in the weeks prior. I was barely greeted by them (really, guys?) and they spent maybe 30 minutes in total observing what happened to be a very chaotic group day. Group always has a little bit of chaos to it, that’s what happens when you get that many 2-3 year olds in a room, and yesterday just kind of highlighted that fact. 

I’ve said it before and I’ll say it again: His playgroup is about the most awesome I could have ever wished for. The children have all been absolutely amazing and their parents have all been wonderful. I am seriously tempted not to let J turn 3 so we can stay with them forever.

Anyway, that’s where we stand with the schools. I am now awaiting the date for his IEP meeting and am terribly convinced that this meeting will be a huge war. I have sadly no trust in the school’s staff to do what is right by my son after some of the behavior I’ve seen and while I am willing to be flexible in some regards, I refuse to see my child short changed because the schools want something easy or because they want to use a cookie cutter method on a child that simply cannot and will not work for.

We’ll see.

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We have an appointment with the ENT this morning for the results of his sleep study and a discussion about how to proceed in regards to his tonsils. His primary care doctor armed us several weeks ago with a prescription for liquid zofran, which helps curb his ability to vomit, but the gagging is assuredly still there. I am curious to see what the ENT has to say and see if his apnea is neurological or merely one of several physical side effects of having tonsils the size of boulders.

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This is a perfect snapshot of a day in my life with J – we were driving to group yesterday and he was chattering in minion in the back seat as we were turning onto the street that leads to the early intervention center. Amidst his rambling, I started to hear oinking sounds. He’s got the pig noise down pat thanks to Peppa Pig. So, like any good mother, I oinked back.

And he oinked back. 

And I oinked back

And this went on all the into the parking lot at the center. 

He sure doesn’t talk much but when we do have “conversations”, they’re hilarious.

Oink oink oink.

The Hard Parts

There are things that are going to be hard regardless of autism in our lives.

Today, it was a blood draw for a couple of genetic screenings.

There is nothing that can prepare you for these types of things. You know you are doing what is right for your child and yet everything in you is screaming “TAKE YOUR CHILD AND RUN!” even as you sit there, holding them still through something that obviously pains them.

I hate it.

He does not have the words to say he’s hurt or scared. His crystal expression, his anguished cries, all of it is eloquent enough. I can’t explain any of it to him. I can’t walk him through the bit by bit of what’s about to happen, how well he’s doing when it happens, and encourage him to realize how fast he’ll be okay again when it is all done.

This does not stop me. Even as I cry along with him, I whisper in his hear how good he’s doing and how strong and good he is. I whisper how it will all be done soon, how he’s such a brave and sweet boy and how sorry I am he has to do this.

And he wails. Tears stream down his cheeks and he cries, desperate for escape and peace. He hyperventilates and almost vomits. He can’t control his reactions and I cannot blame him for it. I am overwhelmed too.

But he did it. He got through it. It’s done, for now, and hopefully for a long while.

Blood draws, EEGs, sleep studies, physical examinations… The cost of his diagnosis is not one measured effectively by looking at bank statements and hospital bills. It is best judged by the physical, emotional, and spiritual toll. It is brutal that getting him appropriate physical care is painful and terrifying to him. It’s a trauma, no matter how minor, to bring him to the doctor and put him through the visits and it’s a trauma that is not just to him but to myself, but I have to remain strong. I have to do it. I have to hold his hand and see him through it.

But my heart hurts.

He’s my son; he’s my sweet and darling baby boy. It is my duty to protect and nurture him but I won’t deny the pain I am filled with when doing right tears me to pieces inside.

We have one more medical visit this month, May 17th, and we’ll know then how we are proceeding in regards to his tonsils. This might all get significantly harder before it gets better. I just have to buck up and get through this and learn not to cry in front of the medical professionals who think I am insane when I end up crying right alongside my wailing child.

Whirling Dervish

That is what this week feels like. I am starting to believe that all weeks are going to feel this way: chaotic whirling dervishes that leave me so turned around by the end of them that I am not even sure where’s start and where’s stop. 

But this is life, and J never rests.

Tomorrow is something like this: 

— Speech therapy

— Genetic Screening in Boston

— ABA 

Now, do you think he’ll nap anywhere in any of that? Because it would be my fondest dream that he would but let’s face it: all kids J’s age run on their own agenda, the only difference between my guy in most is that he doesn’t care to often share what that agenda is going to be.

We will get through it though and and hopefully it won’t be so bad.

On the fundraising front we’ve broken $800! Every single step that brings us closer to getting J united with a service dog is progress and all of it excites and elates me. I cannot wait til the day that I am writing to share his progress with his service dog with everyone who will have helped us get there. I can’t wait to spam you all with pictures of it too because, come on. Have you seen this kid? Him AND a dog… The cute, it will overwhelm.

Not that I am biased on his appeal or anything, being his mother and all.

T-shirts are in the works and I am very, very excited about them. The moment we have things ready I will be sure to update and share them with everyone so the word can be spread.

Now, I have to get back to fighting the good fight and figure out how to write letters to people I don’t really talk to begging them for their assistance. I am a party animal.

Sleep Study Verdict: Yuck.

This week has been a Week. This month has been a Month. Seriously, in any way, has anyone caught a break? It just seems like April 2013 is one of those months everyone I know wants to see the end of, tout suite. (thanks Wreck It Ralph)

J had his sleep study Wednesday night. He was very brave as the tech, who was a wonderful woman by the way, put on all the leads and such. All of the leads except for the cannula and the blood oxygen monitor were placed before he went to sleep. He cried but stayed still in my arms as everything but those two were placed and he watched Wreck It Ralph with me on his iPad. Then, when she was done, he and I cuddled down and watched more of the movie til he curled in and fell asleep.

It was all too easy, I was soon to learn.

The tech placed the cannula initially with no problem… until she came around to the other side of his sweetly sleeping self and found it was placed wrong. Unfortunately, it was taped in place by then. She had to untape it, which woke him up. Oh, the screaming. You’d have thought he was on fire. The way he panics tears my heart into a million pieces without fail. We got the cannula placed and the blood oxygen monitor on him but he was Not Happy. He would sleep off and on from there but always awaken at some point crying over the cannula and monitor. 

Then 4 o’clock ran around. He was more awake than previous times but otherwise nothing was different. That was til he vomitted. Big time.

When you’re in these rooms you’re watched on camera and they can hear what you’re doing in the room so I just kept saying help. I was sitting in the way of their view of his when he puked and he makes no sound when he does it, so they had no idea til they ran in and saw, well, the aftermath. 

Our choices at this point were slim, given all the leads on his head: Take everything off and  put it all back on again, cut off his pajama shirt and thus only reaffix the few leads that had been truly disturbed/made gross, or end the study altogether. His tech and one of the other techs coordinated between one another to find out if they had a good study for him and, thank all I hold holy, they had over 7 hours of study – the minimum they needed was 6. We took off all the offending items and we were allowed to sleep in an empty study room next door, where J would not allow me to be more than 3 centimeters away for the next few hours til we could go home.

The downside now is that we wait til May 17th for results but I figured it would be a case like that. If there was anything concerning I am trusting his doctors to give us a call. 

Oh, yeah. And I’m so done with vomit. Like I wasn’t before.

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I have a lot I am working on that doesn’t show tangible results here or anywhere yet but trust me, I am working on it. I am eager to get the fundraising for 4 Paws to help get J and other children their dogs into full swing. This will include a page on this blog dedicated to the effort and regular updates on our Facebook page.

What? You didn’t know we had a Facebook page? That’s cause we’re not big and famous, I bet… Look in the sidebar on the right, the option to “like” this blog over there is in it. 

I am also a Thirty-One Gifts Independent Consultant, so 20% of all my sales going forward will be donated to 4 Paws for Ability to help this effort. Are you interested in bags and home organization items, plus oh so much more? Check out my site here and look under My Parties – I will try to keep public parties going for those who are interested. You can also host a fundraising party online or via catalog if you’re not local – Contact me via the site and we can work it out. 4 Paws gets needed funds, J gets closer to his dog, and you can earn some free goodies. Win/Win, right? 

 Please note: None of the views expressed on this page are that of Thirty-One. I do this all on my own. They just let me sell their awesome products and have a lot of fun with great people.

Busy, Busy

There’s so much to say lately and not enough words with which to say it.

I am working on a fundraising page for 4 Paws for Ability in J’s honor, so that we can meet our fundraising requirement to see him to getting his dog. I keep worrying that I may be portraying myself as someone who sees this dog as a magic band-aid for the struggles we go through daily. He or she simply won’t be. They’ll be another ally to help me make his life easier and better. They’re an ally who will bring a lot of work with them, to be sure, but all of the work that will be required to make their life good is work that would make all of our lives good.

That’s something I can commit to, along with soggy paws and fighting chewing. 

J has a trip to the zoo tomorrow, weather permitting, then a speech evaluation for the schools on Wednesday followed immediately by an ABA session then a sleep study that night.

We’re not jam packing things in or anything, right?

And amidst all this I have to admit, I am flat out beat down and drained feeling. Last week took a strange toll on a lot of people in this area, not the least of which seems to be the fact that it feels like I lost a week and imagine others do too. I cannot remember when I made phone calls, etc. I have to get back on the ball and hope that his OT/Speech clinic hasn’t labelled me Public Enemy 1 for all the messed up-ness that seem inherant to dealing with J and I. 

Here’s hoping that Wednesday goes well.

And that I can write better entries soon.

And finish that page.

And have a nice cold drink on a warm beach somewhere.

I can dream, right?

Update on Emitopalooza 2013 (and news!)

So!

A visit to the doctor was had. I feel better about things. We discussed the situation at length. The chance of it being behavioral has been proven to be slim. His occupational therapist tried to recreate a couple of scenarios where he was thought to force vomitting and it never happened. There is also no consistency to the whens, wheres and whys of it beyond the fact that he does gag a lot and gag easily. It’s never been done to avoid anything or as anything worse than an accidental side effect of crying too hard and triggering the gag reflex. 

The ENT feels it is his huge ol’ tonsils, but a sleep study (which is now scheduled!) has to be done to rule out a few other things pertaining to his snoring and his being monitored for seizure disorder. Based on his, and that we discovered that a dose of zofran was the only commonality between days he did NOT vomit in the past two weeks, his doc decided to stick with zofran once a day until we see what happens with his potential tonsillectomy. If he has the tonsils out and we’re still all puke-faced around here, I might lose my last marble.

But today did bring good news!

I spoke with 4 Paws for Ability and after discussing J’s needs and what he needs the most assistance with it was decided that an autism service dog would be a great fit for him! We’ll be receiving a contract and further details in the coming weeks and have a lot of fundraising ahead of us but the fact that this is now all getting started and there’s hope he can receive such assistance left me sitting down and crying when I got off the phone. 

People see my son and see wow, a little kid. Little kids tantrum, little kids run off, etc. They do not understand the severity of what goes on with him without living in my shoes day to day. They can’t, and I do not expect them to. The blessings this dog can bring to my family… That’s what left me crying. I could have help calming my son, help finding him should he wander, help keeping him close so he doesn’t get lost from me in a busy place… I could give him the care level he absolutely needs, deserves and requires at all times. The dog can be there for him in so many ways that it is hard for me to be there for him without literally ceasing to live life. I am just blown away right now. I am not one who knows what to do with good news, after all.

What a day, what a day.

Vomit Comet

This is what my life has come to.

I’m writing a blog post about puke. Vomit. Yarf. Barf. Technicolor Yawning.

Whatever you want to call it, I’m the weirdo sitting here writing about it.

J-bear is not the guy who gets ear infections by the dozens. He is not the kid with a constant runny nose. He is not the kid with the weird rash on his butt year round, though he’s occasionally known to sport one as most children in diapers do. I am blessed in some ways.

In another, I am cursed. I have the gagger. The puker.

Now, usually, the gags and vomits just occur pleasant places like at home on my living room carpet which, thanks to our slumlord, is already vomit colored. Convenient, right? He has gotten the kitchen floor, the bathroom floor, the bed and anyone who doesn’t move fast enough too. It’s sad, it’s frustrating, it’s gross as all get out… It’s a part of our lives. There is no rhyme or reason to this vomitting. 

Now, come to this week, and he’s vomited on not one but two of his therapists. Neither scenario has had any commonality beyond a therapist being in the line of fire. Once, he’d been upset immediately prior. Today’s? Nope. He was in SUCH a good mood. He’d woken up this morning, had a nice breakfast and a nice bath followed by a long massage that left him content and as calm as he ever gets. He marched into speech pleased as punch.

THEN WENT FULL EXORCIST.

Okay it wasn’t THAT bad but when you’re the mom of the kid that puked, it might as well be. Guilt, embarassment, all of it lines up behind the deep worry that exists for your child.

So today, we go again to his doctor and go “please help us”… Something is clearly going on. He has large tonsils, which we’re investigating having removed. He has a sleep study on 4/24 to see if there’s any reason we should not go through with the tonsilectomy. Is there something more than that? Are we missing something big? My son is a scrawny little fella. He has no weight to spare… I can’t have him vomitting one or more times per day. His system can’t afford it.

Thank you for tolerating this entry about puke. In thanks for your suffering through this, here’s a cute picture of a not pukey J: 

Image

He’s not even 1 in this picture and just SO HAPPY about those toys!

Go Away, Croup and Humanity in the Hospital

J-bear is one of those unlucky kids who is susceptible to croup. His first run in with it was a week before his second birthday when he had to spend a night in the hospital because it took that long for the stridor (that awful barking cough sound) to calm the heck down. Breathing treatments, steroids, the works. This was before we knew he had autism and it was harrowing.

He’s had a few attacks since then, all minor and easily relieved with heavy steam and keeping him calm. Not so bad, right?

Then came Ninja Croup.

Seriously this came out of no where. Usually when the little guy gets sick, we get a shot across the bow of some sort. He’ll have a gagging episode of all mucous, he’ll be completely out of sorts, he’ll abruptly be lethargic… Something will tip the world off that there is something Not Right going on with him and the world may brace itself as it waits for the storm to break. This time whoever is in charge forgot to schedule the warning.

Last night, he went to sleep after a night of his usual playful antics. We played games with the exercise ball, goofed around the living room, did milk and cuddles and bedtime. 12:30am rolled around and all hell broke loose. He woke up coughing and hysterical, unable to be calmed. This is scary to all involved, in my opinion, as he has no way to articulate a single thing about what’s ailing him. It’s an elaborate guessing game that thankfully those who are closest to him are growing increasingly good at playing. He’s coughing, spiking a fever… then the barking started. Stridor. Croup. Damnit.

Tried steam, tried coaxing him into calm, tried giving him his dearly beloved ginky (pacifier)… Nothing helped. He choked up a healthy amount of mucous but still, no calm and he was fighting to breathe.

So off to the ER!

And that’s what drove me to write this post. The world didn’t need to know our saga of croup. The thoughts that brought me here are merely tied to that saga. 

There are some places in the world that are just unfortunately completely unfriendly to a child like J. The hospital, especially the emergency room, is near the top if not absolutely tops on that list. Bright, intrusive flourescent lights coupled with lots of foreign noises, strange people and repeated examinations… Oh, and the fact that they always want to put sticky things on him. That’s it. It’s hell on earth to the poor guy.

With the prevalence of autism increasing it seems by the day, you’d think there’d be more awareness in hospitals. Exactly one nurse who interacted with us took to hear that he does deal with autism and asked how best to approach him. What works? Is he okay with touch? How can we make this easier? She respected the bright lights in his exam room being turned off (ambient light from various monitors and the hall outside were more than enough) and just took great care with him. Everyone else was so hurried they ignored the person that is my son. They never mentioned what they were doing, just hastened through doing whatever they felt best and scurried along. It was hours before the kindly nurse realized the oversight and explained exactly what the plan for his care was, what had been done, and how long we’d be there.

He’s an almost 3 year old with limited language. I get that. But he’s human. He understands how you address and approach him with more clarity than he is given credit for. He was scared. He was sick. He needed their best compassion rather than impatience. I appreciate that one good nurse a great deal. J was delivered in that hospital and I know how amazing their nursing team can be… it just largely failed this little guy last night.

Anyway the little monster is home, recovering and showing signs of his usual self as it got closer to bedtime. Croup is a right bastard though and tends to get worse in the night so it remains to be seen how tonight and tomorrow night goes. The steroids should carry him through til tomorrow and allow his body to have had time to fight off the infection enough to avoid any more hospital runs.

Here’s hoping, anyway.

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