Tag Archives: speech therapy

Medical maladies and eating strategies for the picky eater that will eat anything — sort of.

I had a physical last week. When I got home, I announced that I only had six months to live. My parents laughed and rolled their eyes, a natural reaction from anyone that has known me for 33 years (they were there to watch Connor since Chris was working upstairs). Chris told me to stop it. He never enjoys my macabre sense of humor. I’m not allowed to play games like “What If?” or “Would You Rather?” He doesn’t like hypotheticals, where as I thrive on knowing things like, If I died, would you keep the cats or give them to my mom?  Or, would you rather be married to a donkey or smell like a port-a-potty no matter how many showers you take.

My doctor confirmed that she thinks the headaches I’ve been having are migraines — mild as far as migraines go — but still migraines.

I also took Connor to a dermatologist for a wart he’s had on his foot for some time now. One $50 co-pay and $4 for parking later, off I go to Walgreens for standard over-the-counter Compound W. Sigh. I did like the dermatologist, though. He was an old guy that put out the vibe of an old-timey pharmacist. AND he was familiar with TSC! Even though we weren’t there for anything TSC related, he saw his history and asked questions about how Connor was affected, and he was familiar with various organ involvement. It sounded like he had even been the one to diagnose people based on facial angiofibromas, who were otherwise unaware of their condition. It’s always nice to come across a medical professional that actually knows what TSC is, and that he knew about the effects beyond the dermatological made me quite happy.

In other medical news, CHOA is once again trying to give me what I now know is a migraine. We finally got the call to schedule Connor’s first visit to the keto clinic so we can consult about the modified Atkins diet for seizure control. Want to guess when the appointment is? March 18. March. 18. Lots of four letter words when I hung up. I’m still not really clear on how this is going to go. She told me the nutritionist would call me. Possibly to start the diet before that? I couldn’t get a real clear answer, though I expressed my dismay at waiting three months. She also couldn’t tell me how soon the nutritionist would call. So I think we start the diet via phone consult, which is better than waiting three months, but I sure would prefer meeting with the expert before making such a drastic change to Connor’s diet. But like I said, I’m not even sure if that’s the plan yet.

I must also accept the blame for making Connor sick this week. Connor came down with his first normal, run-of-of-the-mill illness. We’ve had seizures, brain surgery and weeks in the hospital…but not one bout of ordinary childhood illness. He woke up late Wednesday night coughing and ran a low-grade fever most of Thursday. No fever this morning, but still coughing occasionally. Fantastically, though fevers typically lower the seizure threshold, I saw no seizures during the course of battling his temperature with Tylenol and Motrin. But why my fault he’s sick? I recently blogged about his superior health and just this week, I thought, man, we might just make it to his second birthday with no viruses! My bad, buddy. I know better. I’ve been sleeping on the floor next to his crib the last couple nights because it makes me feel better mentally — my hips hate me though. Chris would have done it, but Connor doesn’t tolerate snoring.

So it has been a lot of lying around and sleeping, along with more PBS than usual. If I see this Mouse King episode of Super Why one more time, I will scream.

Progress in the eating arena:

On the bright side, it appears we are making progress in the eating arena. His speech therapist has been providing tools to work on his sensory issues with his mouth. He does not appear to have any other sensory issues whatsoever, but try getting him to use a sippy cup or eat food with no degree of pureeing has been about as fun as…as…as trying to make an appointment for anything at CHOA. To eat non-pureed food, it had to be cut extraordinarily small and he would eat in very limited quantities. But this week has been far more successful at getting him to drink from this cut-out cup (which allows me to see how much he’s getting, as well as prevent it from hitting his face making him buck away).

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He also ate this whole serving of mac-n-cheese. Just a couple weeks ago, I had to cut the pasta up and mix bites with pureed food so he wouldn’t just store it in his cheeks like a chipmunk. But he demolished the whole thing with no mixing or cutting this week.

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He also did well with this, though he didn’t finish due to stubborness. The bites he did take, he swallowed, while before this one was almost inedible because he just built a fortress of peas and meat in his mouth.

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These are his other fancy tools:

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The blue and orange thingy can hook to his clothes or seat and its purpose is to prevent him from throwing his utensils. Unfortunately, they slide out anyway, so that’s not really helping. The purple and green spoon is bendable to work on getting him to feed himself. Angling it should aid in helping him put the food in his mouth. This is all theoretical as he shows little interest in anything other than being fed or throwing spoons. Or removing food from the spoon with his hand. The purple tool is a textured spoon to desensitize his mouth. He hated it at first, but now it doesn’t phase him. That’s a Nuk brush on the end. He hates that bad boy. It is also to desensitize his mouth. Not just for eating food, but also for rubbing it around in there. The therapist added the rubber grip so he could hold it himself, I suppose not realizing that his complete and utter hatred for it means that if you actually put it in his hand, it will immediately be on the other side of the room.

Now if you’ll excuse me, he just fell asleep and I’m going to check his temperature. He’s made it pretty clear that if I stick that thing in his ear one more time, I get a Nuk brush in my eye, so cross your fingers…

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By the way, my blog is nominated for a couple of awards over at WEGO Health. Thanks to those who have endorsed me already! It’s not too late 🙂 to do it here.

Speech Therapy Giveaway From PresenceLearning!

Unknown-1I am really excited about today’s giveaway! I was contacted by PresenceLearning, a company that provides live online speech therapy services for K-12 students. You can check out their web site here. I was not familiar with the company so I contacted a former co-worker of mine who is a speech therapist to see what her thoughts were. It turns out, she contracts with them now.  I would have loved to take them up on their offer for a free trial for Connor so I could give you a first hand account, however, with Connor being so young, and the fact that his speech therapy sessions are very hands on and he frequently tries to crawl away…not sure that would work for him.

Some details from PresenceLearning:

PresenceLearning is the leading provider of live online speech therapy services for K-12 students and is now offering online occupational services as well.  PresenceLearning strives to match the right therapist with the right child regardless of location. The company has partnered with school districts to offer web-based access to a growing, nationwide network of over 300 highly qualified speech language pathologists (SLPs) and occupational therapists (OTs) via live videoconferencing combined with the latest in evidence-based practices. PresenceLearning is also expanding their offering to serve parents and guardians of children with special needs.

What you get with the giveaway:

PresenceLearning will provide:
   • Trial of live online speech therapy services. Two 30-minutes sessions per week for 2 weeks (a total of 4 sessions, 30 min each) 
   • PresenceLearning will provide winner with headsets and webcams and do the tech checks and make sure they are all set up technically. When they are done with the trial, they do not need to return the headset and webcam.

What the winner will need to provide to PresenceLearning:
 • The states where the services will be taking place so we can make sure we have a licensed SLP to serve them in that particular state.
   • Parent’s name, state of residence, phone number and best time to reach, email, child’s first name, age/grade of the child and what the situation is with the child (i.e do they have a specific speech–language issue that is being addressed in school IEP or otherwise?)
After we have this information we will put you in touch with Aaron Skiies from PresenceLearning and get the winner connected with a clinician — one of their top SLPs who will talk to them about how it works and what their child’s needs are. This SLP will be the one to schedule the actual dates and times for the sessions.

How to enter:

Leave a comment expressing your interest in winning the speech therapy trial and the age of the child you want it for. if you’re comfortable sharing, please tell us why you’d like to try it…I will not require that particular detail out of respect for some people’s desire for privacy. I will randomly draw a winner on Wednesday October 23. I will try to contact winner by e-mail, as well as posting here. If I do not hear from you within four days, I will select a new winner. 

 

 

 

 

The Strength of Family Through Three Diagnoses

Day 2 of Blogging for TSC Awareness Month

By guest blogger Paula Krischel (Dwight, Illinois)                              

Paula with her husband and three sons, Mason, Joshua and Adin.
Paula with her husband and three sons, Mason, Joshua and Adin.

My story started when I noticed my infant son, who was 11 months old, puking and seizing.  We went to our local hospital, and his pediatrician knew it was more than he could help with, so he sent us to Chicago. That was the first time we met Dr. Huttenlocher and started our long journey with TSC. Never in my wildest dreams could I imagine that I had this disorder for 26 years, and was completely unaware.

My world was falling apart. I became depressed, and my son was having uncontrollable status epileptic seizures. I not only had to learn all I could  about this disease, and the fact we had to live day by day to see how it would affect our boy, I had to learn to accept that I do have this disease and cope with the guilt I felt about giving him this terrible thing! Mason, who is now 17, ended up having global delays; he is severely affected by this disorder, severely autistic, and will never have the ability to live an independent life. We started with therapy at a young age, but did not see much progress for many years.

We were feeling compelled to have another child, feeling Mason needed a sibling to help him learn. We prayed a lot and had Joshua. Joshua is now 14, board scholar, and wants to one day be a geneticist and work in gene therapy. As of now, he shows no signs of having tuberous sclerosis, and he wants to one day find the cure for it.  We have advised him to get genetic testing done when he decides to have a family.

When my Joshua was 10 months old, I found out I was pregnant again. Eight months later I had Adin. I was not as comfortable about this pregnancy because we were planning on stopping at two. We found out through ultrasound, at seven months along in the pregnancy, that he too would have that terrible disease called tuberous sclerosis.  We did a lot of praying, and even though he is autistic and has global delays, he is a ray of sunshine who can brighten anyone’s day.  He is considered mild/moderately affected by this disease.  He is able to communicate with us, but his older brother is very limited in his speech. Even though he started out with infantile spasms at three months, we have been able to keep his seizures under control fairly well for 13 years. He did have a breakthrough grand mal once, when going through a growth spurt. He has been under control again since 2009.

We have spent countless minutes with doctors, tests, speech therapy, occupational therapy, music therapy, physical therapy, behavioral planning, making safety plans for at school and home, and the list goes on.

Now our latest scare is me.  Recently I found out my tuberous sclerosis is wreaking havoc in both of my kidneys. I get to start the new medicine Afinitor to see if we can save my cyst-filled kidneys from getting any worse.  Both of my boys are on it as well for SEGA brain tumors. This is the first time I have been seriously concerned about my own health.  I am the main caregiver of my boys because my husband is a very hard-working plumber, who works diligently so we can pay for all the expenses this disorder accrues. There never seems to be a very long break of good health in our family, but because of this disorder, we are stronger, more loving, and cherish all milestones that we conquer! For that I am thankful to TSC. Even though our  life is crazy, and the stress seems to pile up constantly, I would not change my life for one second…and continue to look forward to the future!!!

Check out her son’s post here.

Tornados, bubbles, and wine. Oh my!

Ten days. Itstanding has been ten days since we last recorded one of Connor’s eye rolling seizures with our SeizureTracker app. Yes, there’s an app for that. Just like that, after five months of this weird seizure activity and a 3-day in-patient EEG–nothing. It is awesome, and we just try to enjoy it without projecting ahead because there are no promises in TSC land. He’s so much more alert and engaged in the meantime. Even more giggly, more aware of his surroundings, and increasingly open to people he doesn’t know as well. He had his best swim class ever last week. I’ve been swearing to his instructor that my kid really does smile–I have pictures to prove it. But week after week, though he didn’t fuss or cry, he openly regarded us as dumbasses for requiring him to take an extended bath in an oversized tub to off key singing. But finally, he not just cracked a smile, but laughed and did all his own kicking without me prompting him to move his legs.

The class he has been enjoying immensely is music. He is very interested in the other babies, which is great because I want him to be inspired to crawl and move like them. First he seemed to have a man crush on Ben, but this morning a new love crawled into his life and knocked his socks off. Well, actually she crawled over and just yanked one of them off, but he was so instantly smitten by Priyanka’s bold gesture, that he grabbed both her shoulders and went in for the forehead kiss…or lick. He has made a wise choice. Mom is an ER doc. I feel good about having a doctor in the family. And if Priyanka ever seems distracted by any of the other boys, I’ve observed that I can win her back for him with my car keys.

Connor can now stand when bracing himself against the couch, which is nice. He is also firmly into the “it’s fun to throw everything on the floor” phase, which is less nice. He started speech therapy last week, and I sense some of his grumbling will eventually form into four-letter words. His speech therapist brought him some awesome bubbles that are unlike your standard Target bubbles. These don’t pop as easily, allowing him to catch them, stack them, and for me to scrape them off furniture for days afterward. But look how much fun he’s having.

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Meanwhile, in adult world, I’ve been trying to motivate myself to go out more. It’s so easy to be lazy and do nothing when it’s cold AND you have a kid. I actually had two social engagements in one weekend. I felt like I was 27 again! Chris and I attended a paint and wine tasting function at a  local gallery with our friends Giovana and Damien, taught by our friend Yuri Strom (insert reference to Yuri so that when she’s famous I can prove I know her). I love the way each of our paintings shows our personality. My “I need to please by doing it right, but I’m trying to emulate a carefree lifestyle” painting, Chris’s “OCD everything must be symmetrical” painting, Damien’s “I’m just here for the wine, so my sun’s gonna set in the east if I feel like it” painting, and Gio’s “I’ll show you, happy Tuscan countryside, exactly what pain is” painting.

art gio painting

art chris and damien 2

 art gio art me

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Barcelona barThe next “morning” I went to Barcelona Wine Bar for brunch…at noon. We live in the Bible-thumping state of Georgia, and only just got Sunday alcohol sales. Of course the government still feels the need to regulate the hours that is permissible, so they can’t serve until 12:30, thereby destroying the essence (mimosas) of the brunch. So, I guess it was really breakfast for lunch. Oh well. I showed the gov’ment by ordering an entire bottle of wine.

Oh, good. Everyone got the boot memo.

Oh, good. Everyone got the brunch boot memo.