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Archive for the ‘Therapy’ Category

Not a catchy title but bear with me. The life has been sucked out of me again.

Lets see.. In just a few days from now it would have been the 6 month mark that Luke would have been seizure free. In the past 6 months Luke started developing so much. The biggest achievement was him talking on New Years Day. What a glorious treat for us. Until then he had 15 words at 23 mos old. January 1 hit, and while at my inlaws he said ‘angel’ and several other random words out of the blue. I was floored. We all were. It was like God finally gave us that sign that he really was going to be ok. He was making this big effort to start talking. Making new sounds with his mouth and it was great! It was all babble but he was TRYING and that was something new. It seemed before he almost didnt know -how- to try.

We’ve had some really bad days at therapy and just a few really good ones. We started trying therapy in home (and at the clinic) after the Developmental Evaluation showed that he basically hadnt developed at all in one year. We all knew he had but he wasnt performing. He had to start participating and showing them what he could do. And also, he just wasnt separating well still. After 13 mos at KidSource he was still crying at transitions and its difficult to learn when you cry the whole time.

We also started fish oil in an attempt to seek better sleep. We knew there were huge benefits in the oral motor dysfunction area too so we were anxious to try it. LITERALLY – within a week Luke wasnt just babbeling.. he was SAYING all kinds of new words, parroting us, making up his OWN PHRASES, saying words we didnt even know who knew!!!!! He’s really quite funny. Hes witty. Smart. He loves to share whatever he has with you.. he loves everyone.. he really does. Ahh..

Anyways.

At the beginning of March he had an overnight sleep study complete with EEG and all kinds of electrodes attached head to toe. Literally. He didnt let us down. He woke up 19 times during the night and I was there to console him each time. Sadly, we came out of the mess with petichial hemorrhages around his face where he had screamed so hard he broke blood vessels. That was a tough night. Waiting for the results was tough too. After a couple of weeks we got a letter with results to which we googled every last number and word. Luke had mild central apnea which is the brain tell you to not breathe vs obstructive apnea which is plain not having a clear pathway to breathe. Also, he had shown signs of having parasomnia events throughout the night. The EEG showed good brain waves that reflected no seizure activity while sleeping.

After the initial sleep clinic meeting we moved Lukes bed into our room in an attempt to get him to sleep in his bed. Pretty much I became so exhausted I stopped being able to get up at each waking and keep him in his bed. It became that I could keep him in his bed the first half of the night then my body would shut down and I would find him on top of me in the wee hours of the morning nursing. Whatever. As long as he slept and I slept we made it work. Although, it wasn’t ideal. Its been all out survival mode since the beginning so what’s new, right?

Sadly, his first night he climbed out of bed and fell on my bed rail and cut his eye brow open. He has this nice scar that doesnt grow eye brow hair now. Check out his 2 year photos. Ill post some soon. He will defiantly have a scar for life there.

Fast forward > We are now on Klonopen which is an anti-epileptic drug (AED) that can help with sleep issues. We started on a low dose and began melatonin. Upping levels repeatedly over a months time has proved zero affect on his sleep. He wakes up in a confused state constantly, 6-15 times a night. Those are his parasomnia events.. sleep walking in a way. Sometimes he gets out of bed and walks around looking for us, asleep. Other times he just sits up and waits for us to lie him down again, but asleep. When he wakes up fully though, he was up for 2 – 6 hours in the middle of the night. Imagine how that begins to affect his day time mood, development, ability to learn, cope, play, grow. Hes stifled by his lack of sleep.

Dr. May Greible, the sleep neurologist who we’ve been working with and emailing back and forth set a new plan up for us on April 5, Monday. That was yesterday..

The long and short of it: The plan was to sleep deprive him to get his circadian rhythm back on track. Theres more reasoning and details behind the scenes.

  • Wake up at 6am no matter if he only got 15 minutes of sleep.
  • No nap until 1pm. Wake up at 2:30pm.
  • 3mg regular melatonin to tell body to begin getting tired at 6pm.
  • 7pm shut down all electronic devices
  • 8 PM – Bath, dim lights
  • 8:30 – 8:45 PM – Melatonex and Klonopin (.75 mg), 100 mg B6 (try)
  • 8:45 – 9 PM – Book, prayer, song
  • 9 PM – Asleep

If he wakes, put him back in his bed!  He stays in bed until 6 AM, no matter what.

So, we tried it. He was slobbering tired. Nick had gone to a town hall meeting and literally moments after he walked in and scooped Luke up he began seizing. It’s such an ugly thing to see. It lasted 2 1/2 minutes and we thought it ended. Then as I picked him up he started seizing again so we timed it as one seizure lasting  at almost 4 minutes. I had the emergency meds, Diastat, ready to be administered but he started slowing right then. He came to briefly and he understood that Dada was home and he seemed to want to see him. After he was less confused he began screaming this low, painful, guttural scream. I cant imagine how his head mustve wanted to explode with the pain and his muscles ached from the repetitive tightening and relaxing for almost 4 minutes. We somehow managed to get the rest of his meds in him that were due based on the sleep plan and got ibuprofen in him also.. He quickly fell back asleep at 9pm.

He didnt wake up until 5am. You can guarantee I was watching him half the night. I pretty much lost myself in facebook and talking with friends to keep me distracted so I didnt let my mind wander too much. He was awake from 5-7am and then said “I ti-add” and wanted us to lay him in his bed. He was out like a light again. Nick stayed home and let me sleep while he watched Luke. Nick woke me up after a while and went into work. I sat in bed and watched Luke til 10am when I woke up and wanted to get in bed with me. He stayed asleep until 1115am.

He seemed alert and talkative in his normal manner. Nothing out of the ordinary other than he wanted to lie in bed instead of following me to the bathroom, two times.. I just thought he was tired.

Finally when we got out of bed I carried him because I felt sorry for him. When I finally sat him down in front of his closet to play with shoes while I got him clothes he fell over. I thought he was just tired but then immediately realized maybe I needed to make sure. I went across the room and got his Mickey book. He took one step and fell over again. I went across the room.. again. He fell and couldnt catch himself. He was walking around falling, flailing, staggering and tumbling everywhere.

It was scary.. like something was wrong kind of scary. I called Nick and he wanted to get video. Nick packed up and came home then and by the time he got home Luke was doing better but his knees were buckling under him. It wasnt AS BAD as earlier.

Tracy, our nurse contact in the ACH neuro dept, said she thought that the dose of Klonopen was too high and was basically making him drunk. She said she would talk to Dr. Sharp (neuro) and get back with us. If the Klonpen was too much for him, that means we will more than likely have to wean off that and try a new drug for sleep issues. If its not too high a dose, there could be nerve damage OR it was just the after affects of the seizure.

As I type Tracy is speaking with Dr. Sharp so there will be an update very soon…

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He demonstrated it once perfectly.. then I asked him to repeat the task again and he was too excited and got it wrong. Several hours later I asked again and he got it right! When Nick got home he asked Luke to demonstrate it and he did it again!!

What you might ask is this spectacular skill Luke has now? Color recognition!

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Up til now Luke hasn’t been able to differentiate colors when asked so I just continued to name each color as we drew on paper, played with balls, or his color sorting bears. I figured maybe one day it would sink but I never really pushed it on him. It wasn’t like we would sit in his ‘little school room’ only focusing on color naming. I know at therapy they must’ve been working on it too. Between all the therapies Im sure he gets lots of that.

I had *no idea* he could do that. Last night my mother in law gave Luke a set of Mickey keys that have grips at the top in red, green, and blue. I just happened to ask him which the red key was. He pointed at it. I grabbed him up & hugged him tightly and was pretty well flipping out. (Side note: We try REALLY hard not to do this because it typically scares him & then he wont participate. Its just hes never done that before.. I couldnt help but celebrate) Since the blue & green we similar shades in a way I asked which the blue was. He got it right! Again, outrageous celebration ensued. He didnt seem bothered by this. So I asked for the green one and he showed me! Can you imagine that??? I was SO very excited!

Slightly disappointed when he couldn’t repeat it again. I thought either I freaked him out by all the suffocating celebration or it was just a fluke. Those happen a lot.

So, as it turned out I probably just freaked him out & threw him off his game. Dada was very proud, as you can imagine when he came home & Luke promptly pointed out the colors when asked for each one.

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Ahh… it’s so good and refreshing to see progress. New skills are so few and far between that  grand celebrations are required!

Also, he’s becoming very attached to stuff animals such as his fluffy puppy (Thanks Emily R.. he’s still loving on his fluffy puppy you gave him) and his Donald Duck (or rather mine from 20 yrs ago). He’s been giving whatever object of affection is at that time lots of pat-pats and also I’ve seen him sneak his sucker to Elmo. He is quite a good sharing kid to be an only child and who isn’t around a bunch of other kids all the time.

Oh, and I *think* he tried to say dog. It was more of a ‘dawwwh’ as he picked up his fluffy puppy.

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So as you can tell he has a really great day. He was super verbal and apparently while I was gone tonight being really social. He’s also beginning to answer ‘uh-huh’ more appropriately also. Previously, he has used that phrase usually if he just wants something and we name whatever it is he wants. But today, we noticed we can say something like “Luke, do you love mama?” His reply “Uh-huuh!” With a sweet upward inflection. It’s precious. Ill try to get a video of it. Nick noticed that he’s been pointing at things and saying slowly ‘da..da’ as if he were naming something. We know he wants to say mama because hes seen me pull up at KS to pick him up and they told me he said dada. I know that HE knows it was my car.. he jsut cant say mama and everything comes out dada. But, hes trying to say things.

Good day. It’s was a good day.

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Luke has to have his liquids thickened still. Even though the swallow study came back ‘normal’ he can’t handle “plain water” without choking. We began to wean him off thickeners but realized he’s just not ready. So, some people have asked what is simply thick and why do we use it.. well I thought I’d just blog it. 

 

The above photo is the little packs of simply thick. It is nectar thick consistency. 1 packet to 4 oz. 

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We make large quantities of it and carry a small container in the diaper bag with us out on the go so we don’t have to try to mix up his juice. We’d prefer to not give juice full of sugar but simply thick and water alone has a strange taste although it is tasteless.. Weird, I know. We do 1/2 water, 1/2 juice. 

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I hate to spend the extra money on name brand juices but Gerber and Motts have great juices with half the sugar content. I dont need him hyped up on *kiddie crack* as my uncle JP would say.

So, after combining the juice, water, and thickener you shaking the bottle violently for several minutes to ensure it is all evenly distributed. I’ve taste tested the concoction and it’s suitable for baby consumption. I wouldnt give him anything that I wouldnt eat or drink. 😉 And there you have it. 

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Luke’s Goo.. 

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Occupational Therapy

Apparently Luke DID qualify for OT. People have been asking me just WHAT exactly is OT.. so here’s a Wiki definition 

The World Federation of Occupational Therapists defines occupational therapy as a profession concerned with promoting health and well-being through occupation. The primary goal of occupational therapy is to enable people to participate in the activities of everyday life. Occupational therapists achieve this outcome by enhancing the individual’s ability to participate, by modifying the environment, or by adapting the activity to better support participation.[3]

Another way of thinking about the ideas contained in these definitions could be: occupational therapy is about understanding the importance of an activity to an individual, being able to analyze the physical, mental and social components of the activity and then adapting the activity, the environment and/or the person to enable them to resume the activity. Occupational therapists would ask, “Why does this person have difficulties managing his or her daily activities (or occupations), and what can we adapt to make it possible for him or her to manage better and how will this then impact his or her health and well-being?”

Occupational therapy gives people the “skills for the job of living” necessary for “living life to its fullest.”

He will be seeing a super nice therapist who has the personality that will probably work well with him. “K” will be seeing Luke on Mondays after seeing C for Speech (10-11am) for 45 minutes. Apparently, they have had a huge influx of OT kids so all the can offer is 45 minutes once a week. I guess the month that has gone by is how long it took for him to get a spot off the waiting list. 

So, right now Luke goes M/W from 10-11am for Speech. I talked with S who does DT with Luke about this summer schedule. We decided that he could probably do one session right after the other so we don’t have to come 3 days a week. I think the plan will be to do ST on Wednesdays from 10-11 then S comes in for a overlap from 10:30ish to 11:30ish  I think. We will just have to see how that works. 

Mondays will look this way also. ST starting at 10-11 but instead of an overlap, Luke will stay for a full 45 minutes of OT with K. \

I’m really nervous about this for a few reasons.

1 – I don’t know how Luke is going to do with staying that long. He’s an awful eater especially in the morning because he nurses upon waking and pretty much refuses to eat anything until lunch. I’ve seen other kids bringing lunch boxes and stuff so I might just pack him his sippy and a snack. 

2 – I haaaaaate transitions for him. Yes, he has improved by leaps and bounds but.. gaah… I just don’t want to go through the whole bit where he has to take for.ev.er. to get close to someone enough to trust them and perform for them. 

C had no idea Luke knew where some body parts were. He apparently refused to perform for her. I just happened to ask him that one day after ST while we were recapping his session and he did all the things I prompted. She was pretty surprised and said since she had just seen him do that she can go check off a few things..! AHHH… PERFORM CHILD! PLEASE! 

 

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Oh, how times flies when you’re having fun! Right?! 

So, everything is super crazy right now with recital coming up, classes ending, rehearsals, parties, graduations, etc… 

I really need to update what all has been going on! 

First, the serum amino test came back NEGATIVE! HORRAH! As soon as T called from ACH with the results a huge weight was lifted off our shoulders and we could finally breath a big sigh of relief! Thank the Lord! 

Second, the allergy testing has been kind of weird. He’s obviously dairy/soy intollerant because he breaks out in a rash if I or he consumes it but both his skin and blood work came back NEGATIVE. The skin test showed he was allergic to peanut but the blood work was NEGATIVE! lol … so weird. They still advised us to hold off from peanuts and tree nuts until 3 years old as a precaution. We were also given desonide cream for his rashes from dairy and sadly it made him break out worse… but they say the cream makes it worse before it gets better. And what’s the point of the cream again??

Third, TEETHING! Ouch! He has finally gotten 2 more teeth. Seems the boy pops two out at a time. His little gums are red, swollen and bloody. But – now he has 8 teeth. None are back teeth. He could totally benefit from having some molars to chew with. Gumming on food isn’t working out for him. Child need TEETH! Something to grab the food with so he won’t choke!

Fourth, Lukie is gonna be a fishy! We are signed up with some other moms and kids from play group to do a mommy/baby swim class. It’s at the YMCA in LR from 11-11:45am M-Th for 2 whole weeks! Crazy huh! We were all hoping for a 1 – 2 time a week class for a month or so. I guess it would take longer for a baby to acclimate if they only came once a week. So, That starts June 8!! 

Fifth, Milestones and breakthroughs have been met at therapy!! You guys, it’s crazy how he has started becoming more independent, how much he has understanding, how overall how good is he doing in therapy. I’m very confident that the stress of the past 5 months has paid off for Luke. His therapists have sung his praises last week. That was a the big week I guess. I even had therapists that don’t work with Luke come find me in the waiting room and tell me what an improvement he has made. Joy just fills my heart! If they dont know his name they call him “the little boy with blonde curls” … Seriously? Blonde.. curls!! 🙂 

Sixth, baby boy got a hair cut. Well, he got several hairs cut (haaa..) We went to Pigtail and Crew Cuts and ohmigoodness.. he cried! The place it amazing for little ones and he really enjoyed playing at the train table, or rather standing there throwing trains. He really liked climbing into the firetruck but didnt want to put on the bib. And then tears started. They only stopped when Nick got out the iPhone with Mickey episodes. Bubbles couldnt even help those tears! We got cute photos.. Ill try to post some soon. We didnt get much taken off, 1) because he was very very upset, 2) it was upsetting other kids 3)I didnt want to totally loose the baby boy look

Ok, I wish I had photos ready to go but life is crazy! Did I mention that? Anyways.. I hope that will make due until next time!

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Appt went great!

Another mobile blog post here. I just don’t have the time to sit down and open my laptop some weeks.

The ENT appt went well. His tubes are still in place and wide open.

Dr. G asked a lot of questions about Lukes speech & feeding therapy, general development, hearing, and his follow up appts with the ENT at ACH.

We will be given another appt in 4-6 mos to see if the tubes are still in place. I can’t remember exactly, but a high percentage of kids who have tubes once will require repeated tubes. He just wants to keep an eye on things.

Speech went pretty well today! Monday was horrible. I think C is starting to try new strategies with Luke. Also, she is trying to incorprate parallel play since Luke is so shy. Another little girl will start her therapy in Lukes area and play close to him. He didn’t like being near her at all today!

DT went well Tuesday. He played in the bean pit! Bug advancement!

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ENT Today

We’re going to see Dr. Gardner today to have him peek at Lukie Boo’s ears to make sure his tubes are in place and wide open. I forgot this appt last month the day after I was supposed to go so now we’re finally getting around to it! Opps! 

Speech therapy was a bust today. Im not sure why sadly. I got called back because he was crying so much. He is cutting a tooth right now. FINALLY. His 7th tooth. He needs some back teeth seriously. Poor kid needs dentures. Im thinking the tooth pain is making him so fussy. 

Also, we went to the zoo this weekend with some of Luke man’s friends and their moms & dads. I’ll post photos from that soon. 

And, we haven’t heard anything about the blood test results. They did tell me it would only be a few days. The lab lady said it takes 6 hrs to run the test but we were in a later batch to run so it looked like a full 7 days would be required. I’ll keep you posted of course.

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