Thursday, February 28, 2013

The sounds of Apraxia

I took a video of Brady "reading to his toys" and then found that he was willing to interact with me (the video camera). I cut the video down to 3 minutes of us talking and thought I'd share his progress (I get questions all the time of what "Apraxia" sounds like). Well, Apraxia varies from person-to-person (it's even different from these ID twins), but Brady is actually a SUPER verbal kid who 'talks' to everyone! Some of that is his personality, but often times he echos Jax when Jax is talking. I think it's to sort of blend in and not stand out. The boys also have language impairment and phonological/articulation disorders as well, so their language/speech won't sound exactly like anyone else. But it gives you a look into his world.

An interesting side note, he scored the high end of average for his IQ, which was administered as a non-verbal test. Which most people when hearing him, would never think is the case. So don't you all wonder what he's saying inside his head that comes out scrambled?? I can't wait to hear it some day. ;)

You'll be able to understand the word 'yes' very clearly, but pretty much only approximations of most other words, but the approximations are getting better, and that is the first step. So the word, 'No' sounds like, 'Oh', but in context, you know what he's saying.

Tuesday, February 26, 2013


We're just pluggin' away here. The boys are healthy (knock on wood) and they're loving the snow.
I spoke to Jax's dietician last Friday, and she agreed to wait and see Jax until his next scheduled appointment in about two weeks since his weight was up (she looked at his weight from when he was in the ER) even though that was with his clothes on, and not the GI scale. We are to continue his double-night feeds until we see the team. Jax missed his feeding therapy session last week because of being sick, but he has one today. I'm hoping they start 'chewing' back up. They stopped when Jax's weight dipped so low, and had only focused on calorie consumption.

Brady's mini iPad will go to school with him tomorrow and hopefully he returns home with it all set up. We're just having the hardest time getting his 'school iPad' synced with his 'home iPad', so he is using the exact same program pages that the therapist set up. So hopefully you'll see a bright shiny picture of him by the end of this week with his new talking tool!

Jay and I are still dealing with window/door quote-meeting-showroom fun (read very sarcastically!). Ugh... this project sounded easy, but there's always sticker shock and re-thinking the choice you made. I mean, this is on our house... and some people don't call you back, and some stalk you, and some have deals only to 'this day'. Boo, not a fun project. Well, maybe it would be if we were independently wealthy! Such is life, hey?
We do need to give the boys props though. On Sunday morning, we met at a window company to look at samples, and the boys played for almost two straight hours in the little 'kiddy area' that wasn't a super impressive kid area to begin with. They were so good, we almost forgot they were there! They were rewarded with Happy Meals on the way home.

Speaking of rewards. When I picked up Jax's prescription at Walgreens last night (his daily inhaler) I saw a new Mario and Luigi character in the toy section (Walgreens has toys?). It was a little mushroom looking guy for $7. I had an idea. I brought him home, and the boys were getting their pj's on with Jason. I took the toy out of the bag and the boys almost lost their minds screaming "TOAD!" (apparently his name is Toad) and I told them they couldn't have him until they each go potty. They both ripped off their diapers and sat on the potty. Too bad Jason had just changed two soiled diapers moments ago.
So their goal today is to try and get this little toy and Jax actually said, "Mama, I want to go peepee". I almost FAINTED! Now mind you, he didn't 'have' to go, he just 'wants' to go, to get that toy. No success yet, but it's nice to see them TRY again! We've been promising them 'this and that', but I realized they need to SEE a prize in front of them instead of a promise. So we are still trying!

Sunday afternoon

Making a snow man!

The boys showing me their cool fort/tunnel they made with Daddy when I was grocery shopping.

So proud!

Yes, that's a 3 sided faced snow man made with carrots and spray paint.

Cheers! Jax came in from playing with friends and said, "I cold. Need haw cocoa!" Where does he get this?

So we pulled out the cocoa cups from Great Grandma Laura and had our first cocoa party.

Playing outside after school on Monday with the neighbors.

Friday, February 22, 2013

Lovely mold.

Jax reading about The Lorax.

Brady being... precious.

I love this age!

Today was a pj-day. The boys learned (for the most part) how to play Chutes and Ladders today.

Playing a little Bat Man.
What's this? Ohhh that would be plastic that I sealed all the way around the boy's window including the blinds. We found mold, lots of it. Our plan to replace all the wooden windows on our house was just bumped up from a project we planned to do 2 years from now, to this week. Ugh. Super humidification for your asthmatic child doesn't do you much good if your 26 yr old wooden windows are filled with MOLD. I scrubbed off all the large spores (yeah, gross) with vinegar, but the wood is black all the way through. Time for vinyl. I know that once the windows are ordered this weekend, it will still take weeks before they're installed, so I sealed out any part that had mold including the fabric blinds.

Wednesday, February 20, 2013

Quick update

Jax is much better! He's been taking all his formula by mouth for each meal since yesterday and took a full can of Pediasure through his tube last night. I'm going to start increasing it each night to get back to his double feed. He still requires an albuterol inhaler every 4 hours, but none through the night while sleeping, so I'm hoping he'll need it even less tomorrow.
I brought the boys to school today to work on Brady's iPad for his communication program. The boy's teacher and other children were out sick and the aide said it really hit the whole class, so I hope that's out of there for good now.
Brady's iPad didn't load his program correctly, so I had to leave it there for the speech therapist to work on it. After seeing the pages and buttons set up for him, I think it's really going to help him.

I also turned in the boy's 4k registration paperwork and also reports from the Child Development Center for the teacher to use for the boy's next IEP in the spring (which will determine the SN services the boys will receive in 4k next year).

Here's hoping to some good health the rest of February!

Monday, February 18, 2013

He just couldn't handle that bug!

Jax had a tough night on Friday night. He got feverish, couldn't keep his food down and couldn't stop coughing even though his pulse ox was steady. I gave him the first dose of the steroid the pediatrician sent home with us 'just in case' he got bad. On Saturday, he seemed to be doing much better and he was running around with Brady. We kept him home and tried getting small amounts of food into him throughout the day through his tube so as to not put him to bed with a full pump since his tummy seemed to be too upset at night. And he actually did ok!

Well... Sunday afternoon, it all went downhill. He couldn't keep any food or liquid down, his cough was constant and he kept falling asleep. His pulse ox was decent and no fever, so it was so odd. I called the doctor on call and was instructed to go to Children's Urgent Care.
Jax had a throat swab and then an albuterol/atrovent double breathing treatment. The breathing treatment didn't help air movement in his lungs, but there also wasn't any wheezing or asthma sounds either - such a mystery! Jax had an XRay done, and his lungs looked viral rather than bacterial, so that wasn't the answer either. The doctor didn't like how hard Jax was working to breathe, which was making him completely lethargic, so we were sent up to the ER.
Once in the ER, we were moved to first position to be seen, so that was nice, although we were already 3 hours into the day with everything downstairs in Urgent Care. I told them I was nervous that he was getting dehydrated because he kept falling asleep, and they said it was because he was working so hard to breathe. They gave Jax another round of Atrovent/Albuterol double breathing treatment, and about an hour after that his breathing came down a little bit, and his cough became more productive.

The doctor gave another round of Orapred through his g-tube, but he threw it up. So, I was given some to bring home, and a prescription for 2 more days of it. I promised to run a slow pump (2oz/hr) of Pedialyte overnight to hydrate him.
He slept the entire way home and went straight into bed. He did okay, but was definitely still working rather hard to breathe and actually whimpering in his sleep. His temp went up a bit to 100.8, so I gave him Tylenol and he did decent with random coughs until 5am. After an albuterol breathing treatment, he slept for another hour.

He had a follow up with the pediatrician this morning, and she could hear wheezing in his lungs and his pulse ox was lower, but his breathing wasn't as fast or hard (the OPPOSITE from the day before), so she gave an albuterol breathing treatment and he responded well - so that means his asthma is now flared up, but the viral illness doesn't have as strong of a hold. The pediatrician said it's a viral pneumonia that Brady had, but his lung disease just couldn't hold up.
Now it's more of his asthma, which I feel much more comfortable treating at home. He'll get Albuterol every 4 hrs, double doses of his Flovent twice a day, his liquid Orapred each night by tube and of course, really slow pumps of food mixed with Pedialyte for the next 48hrs. This kicked his butt!
Jax slept for 2.5 hours this afternoon when Brady went to school and he took 6oz of food very slowly. If he makes it through tonight without complications, he should be turning the corner nicely. Jason moved his flight back from tonight until 6am tomorrow to just make sure there are no ER runs tonight, so we're set.
Now... dealing with a super roid'ed up child for the next few days, Jesus help me....

Jax in Urgent Care around 3pm

Jax in the ER around 7pm and a whole mess of breathing treatments

Friday, February 15, 2013

Appointment Updates

We had a good meeting.  I got a bunch of paperwork to give to the school for their upcoming IEP in the spring that basically says NO to ADHD, but rather they have:
Apraxia of Speech
Language Impairment
Phonologicial processes Disorder/Developmental articulation disorder 
(yes, I just typed that reading it off the paperwork next to me!)

The reports state the boys do not meet the criteria for a clinical/medical diagnosis of ADHD. It says the teachers need to work differently with the boys until they work through their disorders. The psych and speech lady gave specific examples of how to help the boys in class for the teachers to read.

I found the boy's IQ scores to be interesting. The average score is 90-109.
Both boys fell into the average range, which is FABULOUS. I guess I assumed Jax would score higher than Brady given his communication, but the doctor said that communication has nothing to do with IQ. Jax scored 98 (smack dab in the middle of average) and Brady scored 104. The doc said that it's like when we travel to a foreign country... we may not be able to speak the language and communicate, but it doesn't make us any less smart or suddenly make us stupid (I was surprised to hear the doc use that word in that kind of facility, but whatever) - so that example made tons of sense.
So I said, GREAT they can be doctors if they want to be! And the doc said, "I don't know why they'd want to do that, but yes, they can". Ummmm you are a peach Mr! He finally laughed and said that they had way too much personality to be doctors. Mkay.
So their cognition is perfectly fine and that's what every parent can ever really hope for. They may not be able to speak, but they have their minds and can communicate other ways as they grow (like Brady and his assisted device).

The psych was telling us stories of the tests she gave the boys and how they did certain things that were major flags of not having ADHD. She said that they brought in their Mario/Luigi characters. She told them that they had to sit on the table and to not be touched even though she knew the child wanted to play with them. They each put them up there, and while they looked at them off and on, they never touched them even when the testing got boring. I have no idea what that means or why it's a test, but she gave that example.
She said they give tests that others would view as a child being 'naughty' or 'defiant', when they look at it clinically to see if it's a disorder.  I guess that all makes sense.

The boys both scored low-average for fine motor coordination and obviously all communication aspects. Which, is not shocking to us at all! The meeting was positive and light, and they said the boys will be able to work through all the hurdles with continuous practice and help, but they will need to be evaluated and watched for other problems arising. 

We are so lucky that they are mild mannered, social and friendly because that takes a lot of the issues out of working through a lot of this. Many kids with these communication disorders have Autism, and it's much harder to work through the issues if the child doesn't WANT to socialize or talk to other people, so it's a hurdle on top of a hurdle, so it could always be harder. 

The doc explained that Apraxia is NOT from the boys being premature. He said that growth issues and Jax's lung disease are, but the Apraxia isn't. Interesting. He thinks Jax's feeding issues are obviously from his tube-dependency and GI complications, but his continued struggles to learn eating are Apraxia. They joked that he has better speech, but extreme feeding issues - which is totally unseen in the medical world when the ID twin has no feeding issues and the more affected speech. They brought that up before, so apparently that really boggles their minds. Ohhh to be a doctor and think about this stuff all day.

Anyway, we have our diagnosis' for the boy's IEPs and I was given phone numbers to call the hospital for an OT to talk about Dyspraxia and also summer speech programs. They all agreed that Apraxia of Speech can easily affect other bodily functioning, but we'll see what doctors in that specific field think. 

I like positive meetings where problems are identified, but they're not seen as lifetime limitations. The speech therapist said she'd pay a million dollars to see the boys at 16 yrs old and hear the stories of what they do together, and the trouble they make with their charm. Um, hilarious, and no, my babies will never age past 5 yrs old!

The boys both saw the pediatrician today and that went well too. Brady is definitely on the mend and will probably have a cough now for the next week or so. Jax seems to have picked up his bug for sure, but his lungs sounded CLEAR, which tells us his bug is like Brady's and more where Croup can come into play and not really his asthma which is in the lungs. So the doctor prescribed some steroids to have on hand at home, but so far he hasn't needed them.
We realized after talking that Jax most likely has been having tummy-troubles because he's constipated. The doc thinks all the extra food/protein is backing him up. His poo has been looking like rabbit pellets, so we're giving him Miralax in his formula for the next 2-3 weeks. 
He's rather pukey right now because of this bug though, so we're getting creative on how to get his food into him.
We're hoping Jax doesn't get as bad as Brady with this illness, cross your fingers for us tonight! 

Quick update

Brady checked out pretty decent at the doctor yesterday. She is trying to decide if his 2 wk cough should get him meds for a sinus infection though, so he's going back today for one last check to make sure he's all good to go.
I had his room pretty much dripping with humidified water last night. He barked out a few coughs around dinner time, so we went and sat outside in the cold air and looked at stars together before bed. Jax stayed in the other room again, so I made Brady's room very cool and humid through the night. He slept rather well and woke up bouncing around and playing, with only an occasional cough. He's definitely turned the corner and doing much better.
Now Jax... ugh.
His pump alarmed last night waking him up, and he puked up his feed. He woke up around 6am gagging and kind of 'coughing'. Jason gave him some Albuterol, and I checked his pulse ox, which was a beautiful high number, but I don't know what it was before that, so I'm not sure if his asthma really kicked in, or if he's just having GI issues making him gag.
We got him to sip water and a little Pedialyte, but otherwise he's running around like a monkey playing with Brady. I think I'm going to have Jax looked over and listened too when I bring Brady in, just to cover our bases before the weekend.
If you walked in our house right now, you'd think everyone was fine with how they're wrestling each other and screaming. Because you know... 4 year olds can never use an appropriate volume with their voice!
Jason and I have the final Child Development Center meeting this morning, so I'll update this evening about all the appointments.

Our Valentines yesterday:

Jax on his way to school. We rescheduled his Feeding Tube Awareness Day at school for next Wednesday.

Brady enjoying a sucker from Nana recouping at home. He was NOT happy to be left home, but this made it a little better!

Thursday, February 14, 2013

Ugh, what a rough night

We are now official members of the Croup-Group. Brady's illness triggered it last night, so I tried to do everything my friends talked me through. I convinced Jax to sleep in his old room, and I made Brady's room as cool as possible and had the humidifier going full force on top of him. He was so miserable barking like a seal, crying, going back to sleep, repeat over and over. Around 9:30pm I went to grab his coat and hat to take him outside to sit on the porch (everyone said the cold air would open his airways) when the pediatrician called to check on us.
I told her he started a fever and the barking cough, so we talked about Croup. She asked for me to put the phone by his face so she could listen to him breathe. She said he had "Stridor" which is basically Croup uncontrolled, and I needed to bring him into the ER for a steroid and breathing treatment. The breathing treatment isn't the kind we have at home for Jax's asthma.
I called our neighbor to come over to the house, and I disconnected Jax from his pump so she wouldn't have to deal with any of that or him puking.
Brady's Tylenol kicked in and he was a bit sweaty, but the night air (I had the window down a bit on the drive) in addition to that med helped him a lot!
At the ER he was treated with a steroid and we were on our way pretty quickly for an ER visit. Thankfully our doctor called in advance and had it all set up for us, so no long waiting - love her!

Jax woke up coughing/gagging a little bit and I just put my hands over my face asking God for strength today!
He's been ok for the last hour with a beautiful high pulse ox of 98 (which is like 100 to us) and no fever. I haven't heard coughing since, so there's still a chance that whatever THIS illness is on Brady won't hit Jax's respiratory system. We'll see!
I'll be calling the doctor's office as soon as they open in 30 minutes to have Brady re-evaluated since he started a fever and had his issues last night. I can't really tell if he's the same as yesterday yet. He wanted to be set up with a tray on the couch for breakfast and hasn't moved yet, but he's interested in cartoons, so I see some life in him. His coughing isn't constant like yesterday afernoon, so we'll see where this all goes through the day.
Jay gets home tonight, yay! He's been stuck in Missouri since he has an entire booth set up at a trade show, so he couldn't get into it to take everything down and make the flight this morning, so he has to take the only one available at 5pm tonight. Such is life, he'll be here tonight thankfully.

I'm bummed that I have to cancel Jax's Feeding Tube Awareness Presentation at his preschool today, and Brady will miss the Valentines Day Party, but it could always be worse.
I also had a meeting with the speech therapist while I was there to download the first part of Brady's communication program onto an iPad Mini that we got him. That will just have to wait until next week now.

Wednesday, February 13, 2013

No answer, but not better

Still no answer! The doc said his lungs didn't sound as bad to her, but his pulse ox wasn't good (93) and he was miserable. He is coughing so bad! Doc gave him a nebulizer treatment (which killed me because it was his first one) and he was around 95 after that, but the coughing wasn't better. She said that since he doesn't have asthma he won't react the same as Jax with breathing treatments. She swabbed him for whopping cough and will call in a med for both boys if it's positive, but otherwise we have to 'wait and see' which is the WORST! She said whopping cough would be deadly for Jax, so she wants to catch this if it is, but she has a feeling it's probably not going to be positive. If he runs a fever (he's around 100 for last two days) or gets worse, he goes back tomorrow, if he's the same, we wait until Friday and then he goes back in then and will get meds.
She wants to figure out if this is just viral and not needing meds, or Walking Pneumonia, or regular Pneumonia or Whooping Cough - all treated a little different.

I feel so uncomfortable not knowing how to help him with this. He is starting to 'bark' when coughing now. Hmmm, I wonder what's going on. I'll check in again tonight to let you all know if he's gotten a bit better.

In the waiting room trying not to spread germs.

Poor Brady... his first nebulizer treatment.

Tuesday, February 12, 2013

Pneumonia? Hmm...

Today turned out totally random, and a little chaotic.

I took the boys to the gym this morning (they don't have school on Tuesdays) and then to get their hair cut. On our way home for lunch, I listened to Brady hack up a lung. He's had a cough for over a week, but it seemed to get worse today, so I decided to call the pediatrician to see if there were any openings today or tomorrow. I was wondering if he maybe had an ear infection which was making his symptoms worsen. He had a low grade fever, but otherwise was acting rather normal. His energy and appetite are down a little, but really, he's been ok.

The doctor could see him after lunch, and Jason was home (he's gone Wed-Thurs) so I utilized him and left Jax at home and brought Brady in alone. You know, for a quick ear-check. Well his ears checked out fine, but apparently not his lungs! Even with a decent pulse ox and heart rate, I guess his right lung wasn't moving air well, and the doc thought it might be Pneumonia. Say whaat?
She sent us over to the hospital to get an X-Ray, even though we all know X-Rays don't seem to catch early Pneumonia. Story of Jax's life the last two winters!

I called Jay to ask if he could run Jax to Feeding Therapy today since Brady and I would be tied up for awhile. Thankfully that all worked out. Well, Brady's X-Ray showed what looks like a viral infection, but no Pneumonia. The doctor called me in the waiting room to discuss, and she was really torn. She said that what she heard in his lung, really sounded like Pneumonia to her, but she'd hate to give Brady harsh antibiotics if it really is a virus. We talked it over, and since Brady had good stats, and was acting pretty good, we decided to wait until tomorrow and have him re-checked. If he sounded the same or worse, he'll be getting meds.

Brady will be seeing his regular pediatrician tomorrow (her partner was at the office today) so it will be a good second opinion.
If it were Jax, he would've been put on meds immediately and then re-checked, but Brady doesn't have any lung issues, so we feel pretty confident he'll be ok until the check tomorrow.
He's coughing pretty bad in bed right now, but I'm checking on him often. I've got my eye on him for sure!
I'll put Jaxon on the bus for school tomorrow and then Brady and I have another day-date at the doctor's office. Hopefully it's just a virus, but even if it is Pneumonia, I think Brady will recoup quick with some meds.
As we were leaving the waiting room, we got to the elevators and suddenly Brady FREAKED OUT and started crying. He was babbling like crazy, but I had no idea what he was trying to say. I assumed he was just wanting something he saw, but honestly, I had NO clue what he was trying to say. We got all the way to the parking garage, and he was still very upset and kind of sobbing. I put him in the car and that's when I realized... he left his iPod in the waiting room! UUUUUGH!
So I called Jason and asked him to call Radiology and ask about it. Thankfully they found it, and Jay went back this evening to pick it up. I just can't wait for Brady to be able to communicate. I felt so bad that he was babbling and crying and I couldn't understand him. Thankfully we'll be starting his assistive technology this week, and hopefully on the road to communication with the bean.

So... anyway, with this random lung issue - I just didn't see this one coming - VERY different than Jax if it really is an infection. Jax hasn't had any coughing thankfully, and I've been giving him extra puffs of his preventative. I'm almost out of his med, and it's too soon to order the next, so I need the pediatrician to work some Rx-magic for me tomorrow.
Jax is doing so-so with food. He's been keeping down all his double night-feedings, but still having issues with food during the day. He did pretty good today, but I'm not making him do full glasses of his formula. He finishes half of it and stops, which I'm taking as a cue. But since he HAS to end a meal on my terms and not his, I've been telling him to take one more big drink, rather than finishing, and it's been helping. Hopefully the bug passes and his unsteady tummy is the worst of it.
I'll let y'all know what the doc says tomorrow about Big B!

Sunday, February 10, 2013

The Pukes

Snowy and wet weekend here. The boys had a lot of fun with Jason outside on Friday while I made dinner. They even made a fort with the neighbor boy which was pretty cute.
Jax is having a tough time with keeping food down during and right after a meal. He pretty much threw up each meal today, but is otherwise totally normal and actually quite rambunctious. He kept his tube-feedings down the past 3 nights with Zofran given beforehand. But tonight he threw up the Zofran and his dinner after his bath when wrestling around with Brady, so I'm not sure if he'll be keeping down his tube-feeding.

So it feels a little counter productive giving him all this 'extra' food if he's throwing up everything else. It scares me for his weigh-in which was going to be tomorrow, but has been pushed off an extra week. I'm just at a loss of what to do. I assume he's got a bug in him, but he doesn't have much of any outward symptoms of a cold... just so frustrating.

Otherwise, the boys did well at the chiropractor Friday, a day at home Saturday with Nana Jayne visiting, and then we did a family dinner date for some Mexican food. Jax actually enjoyed a fun mixture of re-fried beans, guacamole and sour cream, and he kept that food down, but he didn't drink much of his Pediasure. We actually switched up his formula tonight wondering if that was the problem, and gave him strawberry Instant Carnation Breakfast, but that didn't do the trick. Very stumped.
The boys played basketball at the gym and loved it so much that Jax didn't want to leave. He actually acted a little aggressive and hit the wall and sort of growled at us. I had to take him aside and let him know how the behavior was unacceptable. Then later at home Jax was mad at Jason when he was told to sit down and eat. He raised his hand to Jason and growled in anger again. He was sent packing up into his room where he bawled. When he was allowed to come back down, he apologized and ate fine, but what is up with these little outbursts? They don't last long like a tantrum, but it's clear he is upset and instead of coping, he shows aggression. Is this a phase?

The rest of today was great otherwise. We went to the NARI Home Show after lunch, and the boys sat in their little strollers, playing their IPods and waving and smiling at people. We had a family bowling game on the Wii before baths and the boys are snug as bugs getting rest for school tomorrow.

The only appointments this week are feeding therapy (all the other therapies are at school) and the Child Development Center meeting on Friday, but I'm going to call Jax's dietician tomorrow and let her know that Jax has been puking lately to get some direction. I know they were worried about his weight, so I think I need to check in and let them know the scoop.

See this handsome guy? If you ask Jax who this is, he says " ME!" Christa sent me this photo of 6 year old Jason. I couldn't believe how much his face shape, dimples, lips, teeth and nose match the boys exactly! And that's what Jax's hair would do if we left it grow a bit more.
They were very excited about their snow pants, so enjoy the dancing...

Snow bunnies all bundled up

Jay taking them for a sled ride

And dumping them out on the swing set, nice guy!

He can't keep these dudes on the sled!

This is a beautiful sight. Jason cleaning the foyer light fixture! We just had our foyer repainted Friday afternoon, so I asked him to rehang items.

Nana Jayne reading about fish to the boys. She gave them Papa Les' fish encyclopedia.
Wrestling with Nana.

Who doesn't love a huge ant?

Thursday, February 7, 2013

More answers, but of course, more questions...

Jax had his final evaluation at the Child Development Center today. Next week Friday, we will meet with the entire team for the final meeting to go over everything.
Jax did great with his evaluation today, which was for his speech. The therapist that worked with the boys just loves them and wanted to stay and play with them all day (be my guest!). She said that Jax talked her ear off and she barely had to ask him any questions, because he just kept on talking!
In the end, she said he has the exact same disorders as Brady, but he is not as severely affected and/or he's overcoming it quicker. She said they each have a mix of Apraxia/Phonological Disorder. Jax tested around a 3 yr old level. I think it was just around 3.5 for receptive understanding, just over 3 for receptive language, then right around 3 for expressive speech, but under 3 for expressive language. That all seemed about right. She thinks Jax is talking better now then he was the day she reviewed Brady about 6 wks ago, and I told her that he's just blossoming. He is mostly understood if you know the context of the conversation. Although last night he repeated himself 100x at bedtime and I still didn't know what he was asking me for, so it's a work in progress.

We talked about how this year's extra speech (3x/wk) has really helped Jax, and Brady is starting to approximate words a little bit now, but she was really glad to hear that Brady's IPad came in at school. She said he'll definitely be using it often.
She thinks Jax will have pretty good communication skills in a year from now, which will make him much better prepared for kindergarten. I told her I'm worried about Brady, and she said that while she believes Brady will be able to speak some day, she can't for certain say he'll have great expressive communication by kindergarten, or if he'll always struggle with some sort of impediment. There's no way to know, and anything can happen with all of that. But for now, he really does need to start getting his thoughts, feelings and ideas out, so the assisted device should be really helpful.
We've got two really spirited smart and outgoing personalities on these boys, which will really help with this disorder socially. They WANT to play and interact with others, so it only pushes them to get the words out.

The therapist is going to look into getting summer speech sessions for the boys. The school district offers a few weeks of therapy in the summer for kids with extreme need, but there's still too much of a lapse in coverage, so hopefully the CDC may be able to help bridge that gap.

The conversation went into how Apraxia is affecting other parts of the boy's life and development. The therapist thinks it plays a big role in Jax's lack of being able to learn to chew and swallow his food since it's a motor planning movement. I brought up how the boys both struggle with other motor planning movements like peddling a bike (they still can't figure out the movement with their big wheels or tricycles) or using a writing tool to draw or write any letters (even though they know the letters) or buttoning clothes, using zippers, using scissors.
I made Valentines with the boys yesterday for school and their assignment was to write the first letter of their names on the cards. I thought it would be fun.
I took each boy individually and we went over and over and over how draw the letter B or J. It was such an epic fail that each kid cried and asked to leave the table. I couldn't believe how hard it was for them. They also don't understand directional cues of draw "down" the page. Or draw "out" or "over" or "under" - prepositions make no sense to them. Brady would put the crayon on the page and draw up, so I let him, but told him to draw a circle next to the line to start the B... he couldn't do it. I was taken aback a little bit by how hard it was for him to comprehend where the markings belong to create a letter even though we traced it over and over.

I guess I took it for granted that they would know how to draw the letter of their name or something close to it since they know the alphabet and I knew they did a lot of art at school.

Jax was next and he had the same problems. I had him trace over a J many times with my hand on his, and when it was his turn, he drew a line from the bottom up and that was it. I told him to loop the bottom and he would sometimes make an upside down J or would put a mark next to the line, but it just wasn't working and he too cried, and got down.
The therapist told me that that whole situation is most likely linked to Apraxia which may actually be a full system diagnosis of DYSPRAXIA.
She asked if the boys needed to be taught a certain movement repeatedly for other things that seem like they should be easier and I said YES, simple things like teaching Brady how to use the Wii remote to throw the bowling ball. Jay must've gone over it with Brady for hours, then he mastered it a few days of repeated modeling. Or showing them both how to throw a ball up and OUT to get it into the kiddy basketball hoop. It took weeks, but they figured it out and love it. So they're teachable, it just takes sooooo long.

The therapist said she'll contact an OT and/or PT from Childrens Hosp or get me their information and give it to me next Friday at our meeting. She thinks we need to explore the idea of Dyspraxia as an answer to the full system issues of the boys overall.
Could it be? An answer, to everything?
Why they won't potty train, why there are feeding issues, orthopedic issues, fine/gross motor issues, speech issues, delays in walking and most milestones, why the teachers thought ADHD, why CP was explored, the list goes on.
It certainly does explain everything, but I guess, as usual, we'll have to wait and see if a professional thinks this could be it. We are in the business of getting answers right now, so we shall see.

She mentioned that the boys will need to be under strict surveillance for reading disorders in the next few years as well, but we'll cross that bridge when we get there. She seemed to have a hunch about something, but it's probably best to just leave alone for now.

In normal news around the house, everyone is doing well. Jason is supposed to fly home tonight, but with all this snow, we'll see if he has a plane to even get on!
Jax hasn't been doing well with his double feeds at night lately, so I'm going to experiment tonight and see if we can avoid a 3rd night in a row of vomiting all over the bed (poor bean).
We have a quiet weekend ahead, so I think a snowman is in order!

Brady attempting some B's before it went sour.

My goons with all their valentines for their classmates.

Monday, February 4, 2013

Pukes, Pink Eye and IPads (tongue twister)

We're alive, just busy bees.
In weight-gaining news, Jax gets an extra week of food/gaining before his weigh-in since the GI clinic had a scheduling conflict. The woman said the team had confidence in our family to extend it another week, so we have two weeks from today. Jax has been keeping down all the extra feeds at night until tonight.
Brady started a cough on Saturday, and sure enough, Jax didn't keep his breakfast down. He has no cold symptoms at all, but that just means his inhaler is keeping his cough away. But I did increase his inhaler dose an extra puff each morning and night to really fight the cough.
Jax just gets such a weak tummy with a cold, so I've been doing covert special opps to take him off the night pump without waking him. If he wakes in the night with a full belly and a bug in the house, he can't keep it down.
Well tonight he was really running round with Jason and Brady, so he slammed a full glass of water... RIGHT at bedtime... hmmm. Yup, he got sick at the end of his pump, but thankfully he only lost about 2oz of his extra food. Yes, I find ways to make him fall asleep so he doesn't lose his entire tummy of food. I sit him up with the bucket for a moment, wipe his face. lay him down and then turn off the hall light (which I turn on when I go in his room) and sit next to the bed with the bucket. He'll maybe heave another time or two, but the darkness will make him fall asleep.
Yup, my time in the dark with a bucket is coming farther and fewer times between, but man, I never miss it! Or the smell.
Otherwise, even with a small cold in the house, the boys had a nice weekend. We had a couple friends over for the Super Bowl, which the boys were VERY excited about.

Today was a bit of a crazy Monday. All at the same time, Jax lost his breakfast and sprayed the entire toilet with vomit. Not IN the toilet, but all over the toilet, down it, under it. Then Brady knocked over picture frames breaking them, Jason realized he had pink eye and was calling the doctor and after all was said and done and things calmed down... the bus never came for the boys. And yes, Jason randomly has pink eye.
Ugh. So I packed them up and hauled them in.
Which ended up being a decent thing since I got to talk to the boy's speech therapist. Brady's IPad came in from the school district to use as his assisted technology to help him speak. The therapist needs to program it specifically for him, then she will let me know how she set it up so we can do the same at home.
We planned to use a small IPod touch that he could carry around and use frequently, but the therapist said it is too small for the program (Go Talk Now app). So we're waiting to see if we need to purchase an actual IPad or if maybe an IPad Mini would work.  I just can't imagine this 4 yr old carrying around a full sized IPad everywhere.
Every doctor and therapist we've seen over the last 6 months has recommended it and said it will really help with Apraxia because Brady will hear the word he wants to say which can only help him. Now when he wants to tell us something, we don't know what it is, and the whole point gets lost. He needs to hear the words and the doctors keep telling us that the moment he can say any of the words, he won't use that particular button anymore. Apraxia kids WANT to talk.
We want him to too...

The boys being total BUMS watching a cartoon while I make lunch.


Medical supply delivery day. We're back to a pallet of formula again now.