Jackpot

I found this little beauty last night:

Check this out:

I hit the jackpot for pre-packed high calorie foods for AJ.    Children with cerebral burn twice as many calories as the typical child. AJ is still on an extremely high calorie diet.To the point where his GI has literally told us not to worry about fruits and vegetables.  I worried about sodium content, he was not.  If we fed him McDonalds and Culvers every meal, every day, they would be thrilled. Jeremy and I, not so much.  With Jeremy being a RN, CDE, everything we feed AJ kinda goes against what he teaches.  We could write a how-to book, which would feed (no pun intended) the current problems with childhood obesity.  What you shouldn't feed your kids, we are required to feed our kid. 

I am often the "crazy lady" in the store who exclaims, "Ugh! Thats not enough calories!!"  I've gotten some pretty weird stares with that one.  When I found the meal above, I cheered. Again, some pretty weird stares.  I came home and played show and tell right away.  What's even more sad is that my Mom and Jer celebrated with me when I showed them the package.  He ate the whole thing for lunch today.  720 calories, down the hatch.

He continues to drink Kid Essentials  {250 calories for 8oz} in place of regular milk.  This is Nestle's version of Pediasure, and it tastes a whole lot better (the vanilla and chocolate do, AJ does like the orange, banana, and berry Pediasure flavors).  Anyhow, Kid Essentials comes in 6-pks for about $10.  Yeah.  Be aware when ripping open the cardboard that the manufacturer has a coupon for $5 off of 2 packs printed on the inside of the cardboard.  We've also gotten $5 off each coupons from AJ's GI office, so I tend to stock up when I have the double coupons.  Last time I stocked up I saved $60.

He also drinks chocolate milk and apple juice.  AJ's dentist continues to be concerned about his lack of fluoride (it is not in our water), so we are now making frozen 100% apple juice concentrate with the baby water that has fluoride added. I also water down the juice quite a bit by adding more water than the traditional 3 cans. AJ has never been a water drinker. Sigh. 

His dentist is still contemplating fluoride drops for AJ.  Why is fluoride important?  Why should you not have too much fluoride?  In the meantime, we use the fluoride water for his juice and give him foods rich in fluoride, like broccoli.  We also have to have him brush his teeth multiple times a day and rinse his mouth everytime he drinks his Kid Essentials or juice, as he has weak teeth.

AJ has the typical routine of a toddler, where they eat like crazy and then the next day they may eat like a bird.  This used to drive us absolutely insane.  When you have a child who has failure to thrive, your child not eating is not an option.  It never fails, even if it goes for 2 days or so, he'll bounce back and eat like a horse.  I do my best to mix in fruits and veggies with whatever he's eating.  He loves spinach, and many other things most kids won't eat.  So I'm not complaining.  He rocks the spinach and artichoke dip from California Pizza Kitchen.  I wish they had that in the freezer section at the stores. He does like my recipe, but not as much as CPK. 

We try to limit his sweet intake.  We've found other ways to get the calories in.  Rest assured, we make sure he gets his fair share of ice cream, cookies and cake.  Jeremy and I both grew up loving fruits and vegetables and always joked that we'd feed our child uber healthy. Guess that didn't work out.

Other than the Kid Essentials, I do not buy any calorie supplements, powders, etc.  My weapon of choice is vegetable oil.  I add vegetable oil to his yogurt, oatmeal, mashed potatoes, pudding.  Anything I can successfully mix it in to.  There is no taste (I've tasted it in his foods before).  The variety of foods AJ eats is incredible. He no longer gets stuck in a pattern of only wanting chicken nuggets or craisins.

I've also learned to just let him eat. and not to stress over it so much.  He's gone from 13 lbs to 25 lbs in almost 3 years.  While he is still tiny, (25 lbs 34in tall at almost 4), he's come a long way.  I can usually count on someone in his school stopping me and saying, "He's so cute!  And tiny!  How old is he?"  "Almost 4."  "Oh." (followed by uncomfortable silence)  Another example of my "Oh Factor".  Te-He.  AJ has all of a sudden started gaining weight at a phenomonal pace.  Who knows what suddenly triggered this growth.  His GI continues to be happy with his progress, and that's all I'm really worried about.

Oh, and I'm sure Boston Market will have no problem with me buying out my local store's stock of frozen meals.

Keeping It All Straight...Part 1

A lot of people ask me (us) how we keep track of everything AJ has going on.  I decided I'll do a "how we do it" post, in parts. 

Part 1:

The Activity Board

A while back I figured out I needed to write down everything that we were working on with AJ.  If it stays in my head, it gets jumbled and honestly, way overwhelming.  I started writing on a small white erase board.  I split up his goals under headers for each area.  It didn't take long for the white board to become crowded, so I've been brainstorming.  Let it be known the my first 3 attempts were fails! 

Here is my new activity board for AJ.

Another closer shot.

Cool, huh?

Here is the before:

I {literally} found this frame in the back of our office/guest room/junk room closet.  Pretty sad I had this and didn't even know it.  Anyhow it was perfect.  I took the glass and cardboard backer out and sprayer the frame black.  I had some awesome bubble pattern material so I used that where a picture would go, and reassembled.  I write on the glass with a dry-erase marker.  Works like a charm!  I think its prettier than a white board to, don't you? Now I just need to attach heavy duty ribbon loops to the top and get some decorative knobs to screw into the wall to mount in the hall.

Total Cost: FREE

Stay Tuned for Part 2: Binders

Conversation at the Fridge

Mom: AJ, do you want milk or juice? (pointing to the fridge and his juice/milk containers are on the fridge)

AJ: Pushes my hand away. EHHH.

Mom: Oooooh, you don't want milk or juice?  Ok.  Let's open the fridge.

AJ: Pulls on the refrigerator door.

Mom: Ooooopen! (helps open the fridge). 

AJ: GUH-GUH.  (Then looks at me)

Mom: What should we eat?

AJ: (Surveys the fridge, picks up summer sausage in a bag and hands it to me) GUH.

Mom: Noooooo.  Put it back. 

AJ: Puts the bag back.

Mom: AJ, what do you want?

AJ: (Picks up bag of salad mix and hands it to me) GUH-GUH. {very clearly}

Mom: Oooooh, you want salad for breakfast? 

AJ: (Takes 3 steps to me holding the bag of salad mix and hands it to me) GUH-GUH. {very clearly}

I have a new appreciation for salad mix.

What Is It?

Jer has been strongly encouraging
 me to go and take a nap. 
So I tried.... Notice I'm not in bed.
 I'm on the computer.  Blogging . 
Because my brain will.just.not.shut.off. 

Meanwhile AJ is running up and down the hall
carrying one of his shoes that lights up,
while giggling hysterically and babbling.

I just cannot stop thinking about AJ.  What is it that is holidng him back from continuing to progress? 

He is a smart cookie.  And I'm not just saying that because I'm his Mom.  Ok, maybe I am to some degree.  But, that doesn't change the fact that sometimes he's too smart for his own good. 

I have become a firm believer in the more-than-once policy.  If you've never met my son, you don't know him.  If you've met him once, you STILL don't know him.  It is quite the common occurance that AJ will not have a "good" or "typical" day if he's being observed, etc.  Seeing him once does not give you the privilege to set his bar as you so choose.  That is not to say that people don't learn things about AJ in these instances, but there is never enough time for Education 101: AJ's Life Story. 

I've found myself questioning whether we've adovacted for him enough.  Have we advocated for the right things?  Am I being a push-over at all?  I know, I know, I could never be a total push-over.  But, I still wonder if maybe I'm following the leader rather than leading the pack.  Why is communication the one thing he still struggles with?  Are we putting too much focus on PT/OT?  Have Jeremy and I subconsciously put limitations on him without even knowing it?  AJ has so much going on, is communication the one thing we slack on?  She said, with guilt the size of montezuma. 

I should read to him WAY MORE.  I don't describe things enough.  I should research all things on my "to research" list.  I should say more in the car.  I should pull over 50 times to put his coil back on. I should figure out a way to put more hours in a day.  I should learn how to do this AND that. I should really finish his activity board.  I should take him to the library. I should, I should, I should!

 He has the potential.  He totally does.  Hearing it is likely he will develop enough speech to communicate with us and those who know him to get his needs met...was great.  Hearing that putting words together (lets say 6 for example) may be unlikely for him was hard for me to stomach.  In fact I left uneasy about it, and honestly, I don't think I believe it.  I have this gut feeling (no pun intended) that he WILL.  Now ask me again in 5 minutes and I'll be bawling in the corner scared he'll never udder a word.  I've never  been that mom who doesn't to hear things.  Oh I heard it.  I just disagree. 

So what can I do about it?  What is it thats holding him back?  Maybe its his Mom who feels like a total slacker today.  The activities we do are always with purpose, but are they enough?  What else can I do to help him?  Are we confusing him more than helping him?  What am I doing wrong?

I don't know.  But rest assured I sure as heck am thinking about it.

Fun with the Irish

Breakfast

{Green Shamrock Chocolate Chip Pancakes}

{Green Milk}

Marble Shamrocks

(Do any of my stampers remember this technique?!)

Lunch

{Lucky Charms with Green Milk & Green Banana Pudding}

Sorting shamrocks and gold coins out of

our St. Patty's Day sensory bin

Dinner

{Green Caesar Salad & Green Baked Potato Soup}

Tie-Dye Shamrocks

{Done with cone coffee filters}

Painting "shamrocks" with Green Peppers

Little Leprechaun

Details for each project to follow!

One Year Ago Today...

AJ had his cochlear implant surgery. 

Click HERE to read and see the slideshow of that very special day.

Springing Forward

Regardless of the snow we got yesterday, I'm saying its officially Spring.  The time of year where I apologize in a one-way conversation to Jeremy's grandma.  I know she watches from heaven and shakes her head at me.  I know, I know.  The yard is...lack luster.  I apologize for not being a flower/garden/planty person and know that she knows AJ is my current project...and that I'm more of a crafty gal, than a flower gal.  I walk around and see what plants have survived all these years and promise this year will be the year I put up a new bird feeder.  Without fail, I'll see a cardinal on one of the back pine trees and know she's listening.

Last week was nothing short of gorgeous.  AJ and I spent a lot of time outside in the afternoons.  I left the screen door propped open so the dogs could go in and out.  AJ surprised me by coming back outside, independently manipulating our two front steps all by himself.  They are steep-so I was amazed.  He did a lot of walking around the truck as well as up and down the driveway.  

His walking is so much better.  We took a kick ball outside and practiced kicking in standing.  Actually, I was trying to roll the ball in his path so that as he walked he would kick the ball.  It worked until the dog realized it was a ball that I was pitching at AJ.  Sidenote: all balls belong to Rocky, our German Shepherd.  Goof.

CI:  Last week AJ's CI decided to stop working at school.  Reason 8,453 we love that he's at his current school.  His school staff know how to troubleshoot CIs.  This time, it wasn't so simple.  Since I was in the area, I buzzed over to school to check it out.  The safety lock refused to budge.  Once I popped that off like a champagne cork, the pin insert, which holds the processor and battery pack, refused to budge.  ???  I finally got that out, swapped out the cord, and put her back together.  Still didn't work. 

Long story short-the backup cord I used to replace the old one, was also bad!  It happens.  The pin was also bent-again.  We seem to be the only ones that bend pins. I called our handy-dandy Med-El rep and ordered new cords, a new pin, and a new safety lock.  As I sat with his coil, processor, cord, and various other parts, I was amazed at how quickly I was taking it apart, testing, organizing the parts so they wouldn't get mixed up, etc.  A year ago I was afraid to touch the thing.  :)

The next day his CI acted up again.  Grr!!  Not the same extent, but its still frustrating.  Of course you want it to work 100%-100% of the time. We've been keeping a close eye on it and testing it often, just to make sure its working.  I've got a call into his CI audi to check with her.  We might send the processor in and have him wear his backup for now.

The good thing in all of this?  AJ "told" the school staff it wasn't working.  He totally knows what this thing on his head does and can tell when its not "on".  He kept taking it off his head.  Way to go AJ!  He did spend the rest of the day at school "off the air", but I'm ok with that. It was only an hour of school.  He was patient, even though he was off the air, and still participated.  Another reason we are glad he'll be bilateral soon.  If one goes, he's still got access to sound.  When he was "back on the air", he began vocalizing right away.  CI's rock!

AJ's Girls:  Almost 2 years ago, we put a flyer up for a "sitter job" in the student services area of a local college.   We knew with AJ's disabilities and his CI equipment we wanted someone reliable.  Result?  Jenna and Abby. Two wonderful nursing students who have been nothing short of amazing with AJ. 

They both learned sign language to aid communciation with AJ, learned how to work his cochlear implant, knew what behaviors were allowed and not allowed, rolled with the punches when AJ's schedule/activities/etc. changed, and put up with our overbearing gigundo dogs.    They gave me the chance to talk to adults during the day, go to my own appointments, and get.things.done. They gave Jer and I the chance to get a way and just be a couple for a few hours.

They love AJ and it shows.  We could not have asked for better sitters.  And now they are graduating.  I am so incredibly sad.  I told them they could not graduate.  We wish them all the best and hope they enjoyed spending time with AJ as much as we enjoyed having them in our lives.

AG Bell: We are submitting our scholarship application for the AG Bell Convention in Orlando, FL in June very soon.  I am REALLY REALLY REALLY hoping we are granted a scholarship.  This would be a fantastic opportunity for Jeremy and I to learn from professionals and other parents from all across the country.  I'm also hoping Jeremy can take the time off of work.  If not, I'll be going solo.  IF we get the scholarship.   What is AG Bell? Cross your fingers and toes we get a scholarship!

Family Support Program (FSP):  We've applied for services through Wisconsin's Family Support Program.  What is the Family Support Program?  There is a waiting list for this program.  We are hoping to receive funds to help cover some of AJ's equipment, etc. Bascially, things that insurance won't pay for that come out of our pocket. We've been encouraged by several of the agencies we work with to apply for this funding, so we're doing it. 

Intensives: We plan to have AJ attend the week-long intensive therapy session through Partners for Progress in October.  Partners for Progress is run by the two world renowned therapists who have both treated AJ.  We just received our packet, so we're putting in our availability for October, so they save a spot for AJ.  If we are lucky, the FSP funds will be available then to help pay for the intensives.  If not, we'll hope for it to be available next year.

IEP:  As usual, we are beginning our transition from freakout mode to preparation, man your battlestations mode.  This is again, unfamiliar territory. We haven't been in this position yet, where he's already been at our choice of school for a year and we are requesting for him to return for the summer and following year.  We are hoping to pow-wow with his teacher and get her thoughts on things, to further help our preparation.  I also need to find out who will be present at this IEP.  It will be scheduled soon, which I'm sure will throw me into another freakout-temporarily.

Communication: AJ has totally got the object communication down.  With everything, except the potty.  His control has gotten much better in the potty department, though, let me say.  He thinks its fun to go potty in public places, because they always have sinks.  Fun sinks.  That have soap and water to play in. 

Back to the communication.  He is able to use object communication when he wants his juice, milk, or to eat.  To brush his teeth.  He knows his coat means bye-bye and will bring it to you when he wants to go outside/go bye-bye.  He has increased his leading skills.  Example: Yesterday, he came into the dining room, took my hand, led me to his room, reached for the door knob, when he couldn't turn it, he took my hand and put it on the doorknob, I hand-over-hand helped him turn it (he's so close!), and he led me to his bed.  Translation: Mom, I'm tired.  I want to lay down.  I was shocked.  And proud. 

I'm almost thinking of trying pictures with him, of his spoon/fork/juice box/milk carton on the fridge.  I wonder what he'd do.  I guess we'll find out.  Now if we could only get this potty thing down.  He knows the word potty now, which is awesome.  We need to continue working on head nodding . I'm determined to get him to nod his head yes/no, wave hi/bye, and point to things.  I think Daddy would be thrilled if he pointed at the basketball game on tv. 

This week is jam-packed with appointments and events; 7 to be exact.  Wish us luck!

today

today, i am beyond thankful for my son's cochlear implant and his ability to hear and listen.

today, i am thankful for our neighbor who works on our yard for fun.

today, i am beyond thankful for a very good friend who listens no matter what.  You know who you are.

today, i am thankful I was able to witness my son independently manipulate the steps on the front of our house to go outside.

today, i am thankful i have a washer and a dryer that keep on keeping on.

today, i am thankful for AJ's adorable factor, his ambition, determination, and even his stubborness.

today, i am beyond thankful to those who want to be with AJ and aren't afraid of his disabilities. 

today, i am thankful for my husband's amazing smile, laugh, and sense of humor.

today, i am thankful for the roof over my head and the ability to get from point A to B as needed.

today, i am thankful for those who have our best interest at heart.

today, i am thankful my sweet boy uttered multiple "guh" sounds.

today, i am beyond thankful for my husband's colleague, who tells us spending time with AJ is the highlight of her day.

today, i am thankful for my talent of creativity.

today, i am beyond thankful for my Mom. 

today, i am thankful for my tears, because it means I still have emotions.

today, i am thankful for the warm air and beautiful sunshine.

today, i am thankful...for.it.all.

*Gasp*

I just felt someone punch me in the stomach.  Not really, but the wind was certainly knocked out from under me as I realized AJ's next IEP meeting will be in 2 months. 

How did I not realize this until just now?  I'm not really quite sure.  Maybe because my brain subconsciously thought the meeting would be around his birthday again.  Which makes absolutely no sense.  The school year ends in early June.  Which means his IEP will be in late May.  I'm sure it will happen before the end of the school year.  This is exactly what we wanted to avoid.  It would take a sheer miracle, with several layers of wonderfulness, to have us in Waukesha by May.  We will be considering next year's placement, including ESY (Extended School Year) for the summer, and what to do when he's not in the month-long ESY program.  We will need to discuss PT, OT, speech, and on, and on, and on.

Over the winter {this is my bold attempt to use past tense yet again}, I stayed in the Waukesha area while AJ was at school.  Many days I'd drive around different neighborhoods, write down MLS# from for sale signs, pick AJ up, and head home.  We are nervous about what we are going to find in the price range we are hoping for.  We aren't shooting for extravagant or huge.  No stainless steel appliances or updated flooring.  We're really looking for square footage, in regards to having a space for AJ's therapy/play area.  From what we've seen, slim pickin's my friend. 

Our financial situation {living on one income} is not about to change anytime soon.  And you know, that sucks. AJ's needs continue to increase, which is something we must take into consideration.  We are unable to rent, due to our pets.  We struggle to find the time to finish what needs to be done to our current home.  This is...a lot to think about it.  I am, frankly, tired of telling people we are going to move, with different dates in the "fill in the blank area".   We are really freaking out stressed about this whole situation. 

In other news:
We were finally able to order AJ's glasses.  They will take a few weeks to come in.  For those in state of WI, Medicaid/T19 will not pay for the frames, only the lenses.  Nice to find that out when I went in to order them.  I made a quick call to his ophthalmologists office to update them on Medicaid/T19's payment for glasses, as they told me the whole thing would be covered.  I'll be the guinea pig, if it means some other young Mom & Dad don't have to go into an optical store and be asked for cash on the spot.   Remember I said he loves glasses?  Nope.  He hated trying on the frames (no lenses).  Lovely.

AJ's evaluation with Rona Alexander went well.  It was amazing to see her treat firsthand. She may see him again the next time she consults at his therapy clinic.  YAY. I videoed the entire session into four separate videos.  Wouldn't you know my camera decides to not cooperate.  I am unable to transfer any of the videos to the computer, and when I play them back on the camera, I can only view 2.  AJ's PT had asked me to video for her benefit, for AJ's OT, as well as his new SLP.  I also wanted to share it with AJ's teacher and therapy staff at school.  What is with me and cameras?  I will say that this happened twice already, when we attempted to video AJ during treatments by another world renowned therapist (PT). 

I am anxiously awaiting Rona's report.  I am not anxiously awaiting the bill after our primary pays.  She is so totally worth it, but gulp.  I feel like things are constant piling on top of us.  We are also waiting on the go-ahead from T19 for AJ's speech/feeding therapy.  Once we get that, he can begin therapy. 

The same day AJ saw Rona, we had my Gram's internment.  Stressful day.  I had wanted a sitter for the dinner after, which didn't happen.  AJ did well up to the dinner, but when you walk into a nice bistro with a almost 4 year old that just had one of the most intense therapy sessions of his life and no nap, you worry.  A lot.
I miss Gram.  I find myself thinking of calling her to tell her something.  I don't actually pick up the phone or anything like that, I just think about it.  And then I remember she already "knows".  That, to me, is pretty cool.

AJ was "verbally" approved for another year of Medicaid/T19 through the Katie Beckett Program.  We had our every-other-year home visit from the KB rep last week.  While I shouldn't be nervous, I usually am, since it is such a blessing to have this secondary insurance.  I think I am also nervous due to her telling me he didn't qualify when I called her on the phone and told her his diagnoses way back when.  Thank God his PT told me to schedule a home visit so this rep could see him in person. 

I straight-out asked if there would ever be a time where AJ didn't qualify.  She answered, "Unless he has some miraculous recovery and catches up to his peers in every area, I don't think you have anything to worry about."  Comforting and tremendously heartbreaking at the same time.  I will also say that if anyone thinks we are "milking" the system, or that this is the easy route, you are seriously mistaken.  I plowed through two ink cartridges and handed her over 125 sheets of paper-copies of his IEP, IEP update, recent progress reports from his therapies, and their handy dandy stack of paperwork.  Totally worth it, but not easy street.

And, I watched a hoarding show tonight.

Talk about having the sudden impulse

 to completely empty my entire house. 

Gives me the heebie jeebies.

Lucky Oatmeal

I bought two containers of oatmeal a while back, thinking I would use it for Christmas cookies, etc.  I never made the Christmas cookies.  Jeremy kept asking me what I was going to do with all that oatmeal.  I wasn't sure.  AJ and I made a batch of oatmeal raisin cookies, but thats as far as it went-again. 

I had an idea for the containers right away. 

 I emptied the oatmeal into a storage container and made AJ this:

What is it?  It's a bolster.  AJ's PT and OT use them during his therapy sessions.  His PT had asked us to have him practice stepping over things.  Well, here we go. Not only that, but its smaller than a traditional bolster, which works for AJ's smaller size and its much cheaper!

Now for the oatmeal. 

When I saw the St. Patty's Day decor

at Michaels, I thought... 

Sensory Bin!

Guess what, I still have oatmeal!