Video of ABA

This video is LONG (sorry) but it does illustrate what we do during ABA therapy each day. Here you can see that she's using croissants as reinforcers, see his sense of humor, you get to see him get frustrated that he can't say his name, and you get to see some of his funny personality.

Quick update

Lukas had 105.3 fever on Saturday. One of the scariest hours of my life as we raced to get it down. He has not been the same since.

I took him to the pediatrician on Monday. He walked liked this:

Pediatrician saw him and said he was fine. Lungs were clear and he tested negative for strep, RSV, and flu. But she saw the changes in his walk and his stumbling. He fell twice in the exam room. So incredibly sad to see.

We're almost a week out from the fever now and he's essentially the same. He's been very aggressive, anxious, and fussy all week. It's made therapy this week quite the challenge and has led to tears often. I just don't know how to help him and it is so frustrating.

We moved our mid-August neuro appointment to next Tuesday. Hoping he can figure out why his gait changed. Also hoping for a decision on sending us to Cleveland for a full mitochondrial work up soon. Our second opinion thought that many of his issues were autism related but that he thought having some indepth genetic testing done and an evaluation by Cleveland were a good idea.

We started with a new behavioral therapist who doesn't think that Lukas has autism either. This brings the total of neurologists and developmental pediatricians who think he has autism to three and front line therapists who question diagnosis to two. No action taken on any of this right now. Frankly I'm just trying to stay afloat and hoping and praying these changes to his balance and walk aren't permanent.

In other news, we had a pipe burst in our garage yesterday and are sporting a 1X1 hole in our garage wall that goes out to the outside. Our roof leaked last week too during the tropical storm. Seriously. When it rains, it pours. Literally. :(

Long Overdue Medical Update

My son is a medical mystery right now. I haven’t written too much about it here yet because a) I’ve been sharing bits and pieces on Facebook and b) it’s a long fricking story and who has time to type this much?  :)

For months Lukas has been having recurrent breathing issues. He gets “sick” and struggles to breathe. He retracts, wheezes, and breathes incredibly fast (usually between 55-60 times a minute - highest is 85!!! Normal is 20-30) and we’ve ended up at our pediatricians often and the ER for extensive breathing treatments. Here’s what he looks like during one of those episodes. He was on four asthma meds when this happened.  

And here he is retracting between his ribs. Not good.

So after months and months of asthma meds, nebulizer treatments, etc. we saw a different pediatrician at our practice who thought that maybe Lukas was aspirating on acid from reflux which was causing his lung issues. An upper GI showed she was correct and we started him on reflux meds - which significantly cut down on the number of lung incidents. (We used to have about 4 days between episodes but now had only 2 episodes in four months!) He started sleeping through the night again - he was waking up because of the reflux pain. He also has other GI issues.

And then came the limp.

Out of nowhere, he started not bearing weight on one foot. We went into the pediatrician afraid that he had somehow broken his leg. They did xrays to see if he had some funky complication with his hip from taking so many sterioids for his lungs. X-rays were negative and he started walking normally a few days later.

A week later, it happened again. This time, it earned us an emergency consult with a neurologist.

The Neurologist was obviously concerned with the limping, and Lukas’ unsteady gait. He walked (and still does) like he had just learned how, but by this point he had been walking for 8 months. The initial thought was that he had a lesion or brain damage in his cerebellum (lovely, right?). We were scheduled for a MRI and EEG and both those were negative. They also ordered extensive bloodwork to rule out Muscular Dystrophy and other related disorders. Everything was negative. This was the first mention of a mitochondrial disease.

In the middle of this work up, we were sent to a Developmental Pediatrician who diagnosed Lukas with PDD-NOS (autism spectrum) and recommended a full neuro work up. He was also diagnosed with Hypotonia.

Lukas has low muscle tone everywhere but in his lower legs. Those muscles are big for his size (which is why they thought he had Muscular Dystrophy). When Lukas gets tired, he slouches and plods along and sits VERY hunched over. It’s as if he’s just out of energy to keep himself upright. (This is why I’m adamant that he naps!)

Now, we seem to be jumping from one health crisis to another.

Five weeks ago, Lukas got a mosquito bite next to his eye which led to periorbital celluitis. Thankfully we caught it early enough to be able to treat it with antibiotics at home as this landed a friend of ours in the hospital for a week!

Then, right before we were supposed to leave for our annual visit to see his biological grandparents, he broke out in horrible hives that lasted for days. The red ears in the picture below are from huge welty hives.

 He scratched so hard that the hives bruised and these lasted for a week or so.

Three weeks ago, he contracted a mycoplasma infection which left him with a fever for eight days and a pneumonia-esq cough/lung problem.

Then we went to visit with Neurology. After reviewing his tests results, the Neurologist thinks that Lukas possibly has a Mitochondrial (Mito) Disease. He wants him to have a muscle biopsy as the next step. There are really only 2 places to get a muscle biopsy (the standard in diagnosing/identifying type of Mito) - Cleveland or Atlanta. We don't have another appointment until August when our Neuro hopes to have all the details worked out. Hopefully they can work something out with our insurance (actually good insurance) because it is out of network and would cost us 60% of the total cost.

We are obviously concerned as the prognosis for this disease is not good. Many of the children with mito do not live to adulthood and have serious health issues and rely on supportive devices (feeding tubes, wheelchairs, etc.) to survive.

We're consulting with another neurologist (tomorrow) to see what his thoughts are on the whole Mito issue. More soon.

Talking Fool :)

So up until about 4 weeks ago, Lukas had a very (VERY) limited vocabulary. He had a few phrases that he used appropriately (what's that?, all done, and ut oh) and only one word that he used consistently - more (which he signs and says at the same time). He had a few other words that you can get him to say on occasion (ball, go, milk) but was never consistent. He used to say Mama (which melted my heart) but that has been gone for months and months. He does not say (and never has) Papa or Dada and does not have a name for Sarah.

But that is changing with the help of his therapies.

Today during ABA, he CLEARLY said bubbles. Perfect articulation.

He refuses to use the word help even when stressed and really needs help. Today he got frustrated that he couldn't do a puzzle and turned to his therapist and said "You Do!" He has never communicated in this way.

Later today, he got his finger stuck in a toy and turned to me alarmed and said, "Stuck!" in a panicked voice. He repeated it four times with increasing urgency to let me know there was a problem.

I'm just in awe of how far he's come in communicating his needs. Thrilled!

Stop, Down, Whoa, Go!

Today at Speech Therapy, Mister Lukas was showing off. In an odd way.

His therapist put him in a plastic push car and was trying to get him to say "Go!" so she could push him around the room.

The conversation went like this:

Therapist: Say go!
Lukas: Stop

Therapist: Say go!
Lukas: More stop

Therapist: Say go!
Lukas: Whoa

Therapist: Say go!
Lukas:  Whoa, whoa, whoa!!

Therapist: Say go!
Lukas: Down?

After about 15 minutes of trying to get him to say "go" (and laughing at his cleverness...especially the use of stop) she decided to give up. She had him help her put the toy car away. Lukas stands behind the car to push and clearly says, "Go, go, go!"

Silly.
Stubborn.
Brilliant.
Boy.

Mutant Turtle Lukas

Lukie loves this toy! Kid O Bilibo Blue. We got it for him for his birthday and honestly, he didn't like it initially. He likes to sit in it and try to keep his balance (which is fantastic for his core muscles). Yesterday he discovered that he could put it over his head. 

He put his toy car and was attempting to play under there! He didn't come out of his shell for over 10 minutes. What a goof!! :)

Siblings

I worry. A lot. A lot a lot.

I worry how how this is all affecting Sarah. Let me go back for a minute.

When Lukas was born, I was elated that his birthfamily had chosen us to be his parents. But at the same time, there was a sense of sadness because I knew for Sarah - nothing would ever be the same.

When health issues with Lukas cropped up, I felt that guilt again.

We are often on high alert with Lukie. If he starts to wheeze, we worry. He missed more school than he went due to illness. And now, he's at doctor's appointments, therapy sessions, and on daily meds. We watch him closely, analyzing everything from his sitting posture to his communication.

She acts out. Does stupid stuff to get our attention (both negative and positive). All of this impacts her too.

And through all of this, she still doesn't quite realize that there is something wrong with her brother.

He's just her brother. Her baby. Her Blukas. She loves him with a fierceness that I am in awe of. I wish she'd learn not to try to sit on him - but we're working on that. (She loves it when he sits on her though!)

But she is fiercely overprotective. If one of her school friends comes within a few feet of him when we pick her up from school, she'll protest. One time another kid accidentally knocked Lukie down and Sarah said, "DOn't hurt my baby!" She also watches over him at playdates protecting him from the big kids and tattling on those that bother Lukas.

So I'm concerned how she will react someday when people make fun of her brother for being different. I'm not naive enough to belive that this WON'T happen. It will. And she's a scrappy thing with love bursting at the seams for her baby brother - and she's not going to stand for it.

We had planned on having Sarah home for the summer. Her school is very intense and I thought she needed a break. I also thought our bank account needed a break too. But today, all of that changed.

She was home from school sick and went with us to physical therapy and speech. Complete. Disaster.
She was needy. She wanted to participate and play on all of the "toys". She would talk for Lukas in Speech and retrieve the things he needed to during PT (to get him to walk). It made me realize 2 things:

1. She really does notice the things he can't do and compensates for him.
2. Having her home this summer isn't going to work.

Nothing about this situation is fair. Trust me. I want and desperately crave for it to all be okay and be fair. But it isn't. That isn't reality right now.

But it is not fair to send the message to my sweet girl that her needs are not as important as her brother's.  And that is what having her at therapy sessions does. Physical therapy and speech were just an hour total. Having her sit through 2 hours of ABA therapy and 1.5 hours of driving seems insurmountable.

So she'll be in "school" this summer. And while it isn't what I planned, it is best for her right now. It allows Lukas and I do our therapy stuff and grab her early in the afternoon and hopefully squeeze some fun out of this summer after all.

Here are my 2 trouble makers in action. Sarah was supposed to be in timeout, but Lukie came to sit with her (in solidarity?) and things got a little out of hand. Love these two more than anything.

School

We had planned on sending Lukas to the same school Sarah attends again this fall. It's an incredible school that teaches four languages (Chinese, Japanese, Arabic and Sign Language) daily and their academic program (though not developmentally appropriate) is amazing. We thought that Lukas would thrive with that sort of intellectual stimulation.

We put him in last summer. He lasted a whopping 7 weeks and had 6 ear infections, 2 trips to the ER and 17 visits to his pediatrician. Not kidding.

So we put him in a little church preschool "Mom's Morning Out" program three mornings a week. He had 2 teachers and at the most, six kids. The beginning of the year went well. His teachers loved him and he was well behaved. Until he wasn't. He headbutted a kid. He headbutted his teacher. He threw tantrums and hit his head on the floor. He pulled toys on top of himself in anger. Was very destructive.

But God bless his teachers. They really tried to figure out how to help him. They continued to love him. They told me he had an okay day - even when he didn't.

One of my hardest moments in this journey so far was engaging in a discussion with his teachers and another parent (who was worried that one of her twins had autism). Lukas' teachers began to describe all of Lukas autistic behaviors. While interesting, it was DEVASTATING to hear.

But then we got his autism spectrum diagnosis. And we knew that Sarah's school wasn't an option. There are 18 kids. 2 teachers. A VERY rigid schedule and a lot of expectations. We have essentially a nonverbal child with tantrum issues who doesn't like to comply. Not a good match.

So I waited a few weeks (honestly, I waited so that I could discuss it without crying) to let Sarah's school director know that he won't be coming in the fall. She was cold. I don't know if I caught her in the middle of something or what, but there was no compassion. She told me she knew about his diagnosis (Sarah's teacher mentioned it) and that was it. I'm not sure what I expected, but this is a woman I've known since Sarah was 18 months old. I don't think she likes me very much since I tend to buck the system a bit (coming in late, missing school for playdates, etc.) but I expected some compassion. None. She seemed relieved. (Again, just my interpretation).

So that leads to today.  I accidentally overpaid Lukas' church preschool tuition. I went in to the office to pay the right amount and the office manager wasn't there, but the Principal was. She mentioned offhand that its so rare to find out that you've overpaid. I mentioned Lukas' diagnosis and the fact that I just paid 250 dollars for his ABA assessment (which was the amount of my over payment) and so it was a fantastic surprise.

 I said that the past few weeks have been hard and that his therapy was going to cost $2600 a month (yes, you read that right!) and so this over payment was such an amazing blessing.

And then the tears came. 

The Principal told me that she has a 25 year old daughter with special needs. And that she remembers the place I am now - where it is overwhelming and scary. She told me that God put Lukas in my life to change me. And that Sarah will be a better, more loving and compassionate person because she has Lukas in her life. That we ALL will be better, more loving and compassionate as a result of knowing him.

And then she said, "Once you get his schedule set and if he needs socialization, we'd love to have him back in the fall."

She said that she'd LOVE to have him back in the fall. 


And then she said, "And we'll give him a 100% tuition waiver too."

I made it to the parking lot before the ugly cry started. And it was ugly and long. I had to pull over on the way home.

Grateful for her gentle words this morning.
Grateful for her compassion.
Grateful for those who can look past the problem behaviors and love my little boy for the beautiful, delightful child he is.
Grateful.

Can You Hear Me Now?

At Lukas' speech assessment, his speech therapist was concerned that Lukas didn't seem to be hearing everything. This could account for his speech delay, so we scheduled a hearing evaluation. We went today and discovered a few interesting things.

1. His right ear has a bit of a problem. When testing his auditory reflex, there was a big difference in how his ears responded. I have been researching this and basically it can indicate that there is some sort of hearing issue, but will be discussing this further with another audiologist. (Interestingly enough since we had him screened for hearing issues just last week at the ENT and they had the same issues with the right ear.)

2. His right ear qualifies for a mild hearing loss classification. His threshold was 30dB, but not sure how reliable his results were though (more on this in a bit).

3. When he was looking at a book in the sound booth and a tone would play, there was NO response. None. This happened several times and while distracted, he does not respond to sound. This is something we see at home a lot. If he is watching TV or playing with a toy, there is no amount of screaming (yes, we've tried) or name calling that will get his attention. Nothing. This is SCARY when you think about safety issues - trying to keep him out of the street, away from a dog, etc. If he is focused, he will not hear his name or "STOP!" Not sure how we're going to address this.

So here is why I'm concerned about the reliability of the test.

Usually when in a hearing exam with little ones the following things happen:

1. A tone will sound.
2. A child will look toward the sound.
3. A toy (think monkey with cymbals or another noise maker) will start on the same side as the sound to reward the child for looking.

This didn't happen consistently in his test. I'm not sure if it was because of the audiologist or a kink in the testing system. (The booth and entire office is brand new).

What happened in Lukas' case went like this:

1. A tone would sound.
2. No response from Lukas.
3. The toy would start moving.
4. Lukas would hear the whirring of the toy (a bit like a quiet engine starting, but MUCH louder than the tone).
5. Lukas would turn and look at the toy.

This didn't happen the entire time, but often enough to make me wonder. Lukas was VERY difficult to test and so I'm not sure if it was intentional to see if he was hearing anything at all, but in my opinion if those were the tones that the audiologist was using as her thresholds, then the test wasn't accurate.

Again, I'm not exactly sure what results she was using and since I'm not an audiologist I really don't know, but it seemed weird.

But even with those results, he still has a mild hearing loss in his right ear. Not sure the implications of this or the affect it has on his speech, but its another answer - ish.

Steps

So we went to Magic Kingdom last Friday night. Our passes are only good for a few more weeks and the weather is freaking HOT, but that night it was perfect weather. We were hanging out waiting for the time to cash in our fast passes for the Jungle Cruise, when Lukas started walking up and down the stairs (one of his favorite things to do!). And then, our little guy with muscular and motor skill issues started walking up and down the stairs ALONE. So incredibly awesome! See for yourself!

Visit to Neurology

We went in because Lukas' pediatrician called and said that his bloodwork came back showing that his ANA was positive. Apparently ANA positive result is often found in kids with autoimmune disease like Lupus, Juvenile Arthritis, and some other random disorders. Honestly I was sort of excited about his bloodwork showing something since every other test had been negative and we really needed a direction. (The follow-up blood work did not show any sign of these issues).

So we went in a saw a new neuro. She didn't know about Lukas' PDD-NOS diagnosis yet, so I caught her up on his recent diagnosis. Her response was, "Well I'm glad that he's already been diagnosed because if not, I was going to do that today!"

Is it that obvious?

Apparently.


Sigh.

Not a River in Egypt

Even as I sat in the Developmental Pediatrician's office I was still in denial.

Weeks before when I could sense the Neurologist was asking questions about autistic behaviors, I responded with, "He's not autistic, he's just weird!"

Six months before I was telling my friend Heidi about his tantrums and nest building behaviors and made some crack about Lukas being on the autistic spectrum. (She would tell me later that my comment stuck with her since usually people don’t joke about that kind of thing unless there was a reason).

Despite all of the evidence, I was still in denial as the Developmental Pediatrician explained the things she observed and where she thought he fell on the autistic spectrum (PDD-NOS).

I took a deep breath, ready to argue and then I saw him.

He sat at my feet arraigning a bin of toy cars in a perfectly straight line.
Bumper to bumper. Perfectly straight line.

And I knew the diagnosis was correct. But oh, it was hard to hear.

All we wanted (and prayed for) while on this wild goose chase of figuring out what was wrong with him – was something that wasn’t life shortening. The doctors kept throwing around scary diseases, most of which were fatal.

Autism wasn’t even on our radar (but looking back, it was…but you know that whole denial thing).