Frustration in Food Land

I have cried a lot of tears lately. About food. Yes, seriously. Food.

I thought once we got the g-tube we would go back to eating once he felt better. But it didn’t happen. I was hoping we would ‘have the tube and not need it’ instead of more needing the tube than not.

Worrying more about weight gain, trying to stop the freight train from not only rushing down the tracks but pretty much derailing altogether. The more weight he gains the harder it is for him to breathe. Not to mention how important breathing is just by itself… if you can’t breathe you can’t eat either. So we come back to the eating thing.

Also there is a balance in nutrition. Being tube fed – typically they give you pediasure. Trying to get him to eat has been such a fight, and I am still learning how to do blended diets with very little direction. Waiting for an appt with a GI doctor.

So many tears. So much frustration feeling like I am beating my head against a wall and still not knowing what to do.


Then tonight, HE ATE! 4 oz of Turkey and Veg baby food, and drank 4oz of milk!

Then of course I cried a bit more because that’s what moms do ūüôā


Occupational Therapy: Sensory Part 2 – Painted Spaghetti

So switching on and off with Project #1 we explored a little art and culture. Okay, well art at least.  Mom took to Pinterest Рas usual Р and found a great idea I had been meaning to try.

Painted Spaghetti – easiest craft ever and totally age friendly – ALL age friendly!

Boil spaghetti – we used some whole wheat pasta I got for free with a coupon that had been sitting in the pantry. Whole wheat pasta holds up really well – its more dense than regular pasta.

Drain, rinse in cold water to clean off all the pasta starch. Drain well. I poured into a disposable loaf pan tin I had from a party, any dish or bowl would do.

I then covered the pasta in tempera paint. If you have a kiddo who sticks stuff in their mouth, you could use olive oil and food coloring. Or just watch them extra carefully if you do use the paint.

LOW VISION/CVI NOTE: To make this activity low vision friendly, you can use colors in the low vision sight wheel such as contrasting colors (red/yellow, black/white) Рall of these colors are easier to see for kids with CVI and low vision. If you pick one color you should choose from those since they are the most easily seen, however if you know there is a certain color your child reacts well to, most certainly go with that one to get the most out of the activity.

This was Superman’s favorite – the Oobleck not so much.

Of course you can’t tell by his face that he liked it at all!


We attemped some artwork.


Spreading noodles around!


Admiring the handprints Mom thinks look a bit like a horror movie poster. I think we need to work on handprints a bit more!


Superman and Ms P taking a photo break during play!

Honestly, I think his favorite part was really the clean up almost certain he was glad to be done touching the gooey stuff!


Suggestion: If you are doing this with neuro-typical children, older children or those who interact more you could separate the pasta into smaller bowls and make different colors. Have the kids toss on a white piece of paper and see what interesting designs it makes! Easy art right there! 

I hope you all enjoyed our first LONG walk down Sensory Lane and will try it for yourselves! It was a lot of fun for him (maybe), Diva, Ms P, and Mom!

Occupational Therapy: Sensory Part 1 – Oobleck

Oobleck? Yeah.. it has a little to do with Dr. Seuss. That explains a lot right? Only the name though! Because it defies the laws of physics, kinda like my Superman is going to!

Well Ms. P showed up this morning, and man did I have a surprise for her! I had been whipping up all sorts of goodies for her to try out! First we did the Oobleck – or as I like to call it – goobaly goop.

20130710_080122Its weird. Its a goo, but its a solid, but its grainy feeling, but it melts into liquid. It truly defies physics! I told you!

So either way it took a few minutes to make, literally I dropped spaghetti (project #2) and it beat the spaghetti with TONS of time to spare.

I used:

3/4 cup cornstarch (corn flour if you aren’t in the US)

I started with 1 cup water, added green food coloring to it.

pour water over the cornstarch and mix until you feel the consistency become solid but movable. You will want to be able to make a ball out of it, but when you release your hand it melts away.

Gobbaly Goop done.

On to the fun part! The play! He really didn’t like it very much, but Diva and Ms P thought it was the coolest thing. Not a bad way to start the day.

Round 1:


 Ms. P was excited to get started!


That is NOT the face of someone who enjoys feeling that!


Drip, Drip all over! Boys can’t play without making messes.


¬†He was not very willing to put his hands back in there repeatedly. It feels… well.. weird.


Diva got to take turns playing with the goop during therapy.


 We managed to make a HUGE mess of the kid. But it was well worth it!


We started switching off activities since he was getting frustrated with the Oobleck. He really wasn’t a fan of how it felt, but that’s ok because his brain went into overdrive trying NOT to touch it and that is worth it!

After some play with project #2 (coming tomorrow) we decided to return to the Oobleck (and Ms P couldn’t get over how absolutely awesome this stuff was).

Round 2:

Occupational Therapy Sensory Play Oobleck

(click the link above if the video below isn’t working)

¬†After all the fun, Superman took a few minutes break then had physical therapy, so I gave the bowl to Diva and sent her to the dining room table to have a ball… or melty ball… however you want to look at it!


It take about 1 minute to make and 5 minutes to clean up (Do NOT dump down sink! I spatula put it in a ziplock and then trashed it) Warm water cleans up the mess off kids, surfaces and clothes. And its HOURS of fun and entertainment for the kids!


Kinesio Tape – What’s the Sticky?

Kinesio tape is A-MAZ-ING. First off – A-MAZ-ING! Now that my opinion is out there…

When we first brought Superman home from the NICU, his little hands were grasped so tight you couldn’t pry them open. Once we started Occupational Therapy (OT), she started using this stuff called Kinesio Tape. When she first said “I want to tape your son” this was the first image that popped in my head:



She ASSURED me by the look on my face that it was an actual thing. So a few appointments later she brought her tape and we got started. Our Physical Therapist (PT) also tapes his back and neck for his neuro tendencies to lean to the left as well as his torticolis.

I could give you a long history of how the tape came about, but reader’s digest version: A Japanese guy decided he wanted to create a tape that would act like skin but also pull on the muscles to retrain them or relieve pain. He did. And it rocks.

We use kinesio tape for neuromuscular retraining. You can see it on professional athletes, adults who use it for pain relief especially after accidents or pulled muscles and many other uses. But it is especially helpful for children with Cerebral Palsy to retrain the muscles to move or not move in non typical ways.

These are some examples of ways we tape for retraining.

I assured our PT and OT I would place this disclaimer when they agreed to let me take pictures and post them online so please read and heed:


Taping our hands pulls out our thumb (the brown tape) and supination of the arm (black tape).





Taping the neck helps pull the neck back to the right because he leans so much to the left. Torticolis can also cause the child to lock their head into place leaned to the side affected so by taping it to pull with the right resistance can also assist in loosening the muscles to keep the neck from being so tight and locking into place. We have made such a huge stride in this respect, however when he gets mad and doesn’t want to do something he locks his head and you can’t move it at all.



A large portion of our taping takes place on his back to align his posture, retrain the muscles to go straight and to pull his side back into a more straightened positioning. Since the right side is damaged, his left side is often left ‘wondering what to do’ so his muscles are weaker and he tends to lean to the left much more.







The finished product!

Another thing we have started taping is his legs. He still has that newborn ‘splay’ where the legs frogleg out. This is not ideal for weight bearing as it makes the knees very weak. So to supinate his hips and his knees into a more functional position for crawling and weight bearing, Ms. S started taping his legs.




So there you have it! My little introductory course on how amazing kinesio tape is and examples of a few things that it can do for children with motor function disorders/conditions such as Cerebral Palsy! If you are interested in taping your child, ask your PT or OT if they are trained in Kinesio tape and if they are not ask them if they know someone who is or would be willing to complete the training. In the US companies will offer the course but it is typically paid for as additional training by the therapist themselves and its not a cheap class, so not everyone is trained in it. Again I stress, please don’t try this yourself as tension, muscle groupings and the workings are very important for it to work, and you CAN tape wrong, there IS a science to it – kinesiology – and after a year of vigorously watching and even assisting sometimes, I would NEVER attempt to tape him myself. You can injure someone by taping them wrong.

Any questions or comments make them below and I will try my best to find an answer for you!

Oh and disregard the watermarks! I did it before we moved over to the site but if you share this post and they do visit that site it will redirect! So keep sharing!

Exciting News!

From the first moment I looked into his sweet face, while I held a tiny hand that was so small it was translucent, a body that was not much larger than my hand, I told my Superman that as long as he could fight I would fight for him.  For a child that was never supposed to make it a week much less out of the hospital, those were very brave words in the first hours. But I could feel a determination in him. We knew the damage was extensive, so I knew eventually we would have to try drastic measures. To give him a chance, a better chance.

So after much soul searching, research, and prayer – we found our drastic measure that shows the most hope and chance.

We applied to the Stem Cell Institute located in Panama City, Panama. We received an acceptance letter! I have seen miracles happen from the treatments received there.

Photo credit: Wikipedia

Photo credit: Wikipedia

As much as a parent wants to believe things can be completely healed, in Superman’s case, we know that is not the case. Cerebral Palsy is a condition, not a disease so there is technically not a cure, but progress can bring you out of the condition. ¬†Any progress for him can open the doors to so much more. I have seen seizures slow to almost nothing or even completely stop altogether. Vision improvement that allows the child to see enough to be able to make gross and fine motor skill improvements.

A Very Special Needs Resource

Babies learn to smile by watching others smile at them. Mimicking. Of course, that is not to say that blind people cannot learn to smile, however it happens more gradually than a typical developing baby. By increasing his chances of vision, by improving his cortical vision impairment, we have the chance to see him smile at us. At his sister. That seems so small, I know. In our world it’s everything. If he can see a toy, he might try to grab it. If he can see the handles on his sippy cup he might reach to hold it. If he can see the dog two feet from him, he might crawl to pet it.

We believe that stem cells can open the doors to a whole new life for him. As I promised him in that tiny isolette that as long as he can fight, I will fight.

So today we are asking all of you to pray for us, and help if you can to fight for Superman. He might not be able to leap tall buildings in a single bound… but one day he will take that first step and try. I have faith.

DISCLAIMER: I know SCT is controversial at best Рjust know that these are NOT embryonic stem cells but umbilical cord cells from carefully screened umbilical cord donations. 

We will be doing several fundraisers over the coming months – we need to raise $20000 by August 1, 2013. We are just hoping you will all help us promote them, and pray that we can meet our goal and get him to Panama! I will have an events list once I figure out how to set it up in WordPress.


If you are interested in reading about other kids who have done Stem Cell Therapy – you can check out the following blogs and Facebook pages!

Emerson “Emmy”







Ethan Radtke

I will add more as I become aware of more children that have done Stem Cell Therapy.

A Gulping Success!

So today was a pretty lax day in our world. Diva has to be at school at 7 am and then we usually have back to back therapy sessions at 8:30 am and 9:15 am. Today, however, was a monthly meeting day for our therapists so Superman got a reprieve from back to back therapies (which don’t actually bother him). Today we had Occupational Therapy (OT) and Speech Therapy (SLP) which for us is feeding therapy at this point. We should be adding language therapy here soon, but for that we are all having to stay tuned.

Anyways, the day started hectic because I woke up late, then got Diva to school at 8:15 am… so very late. Got home just in time for Occupational Therapy.

What we learned today?

Kinesio tape – 1 /OT – 0 (even with adhesive spray!) … I think we need a new plan. Although its awesome to watch us try! Superman has gotten active enough with his hands that taping his thumbs is becoming more and more difficult to get the tape to stay on. Apparently Superman’s thumbs are kryptonite to kinesio tape? ¬†Stay tuned for a post all about taping!

I thought I was going to have to reschedule our Speech therapy for another day because she is so awesome, that also means she’s very busy. But imagine my surprise when I got a call this afternoon and she had an opening! I took it. If you have every tried to reschedule a doctor’s appointment, take that times 100 on how hard it is sometimes to reschedule a therapy appointment. And it’s not their fault. The great ones are super busy … because they are great!

Superman had just eaten an hour before so I was excited that we could finally have the time to try the sippy cups! So exciting! These were our options:


Dr Brown’s soft tip (yes, its pink)

Playtex sipper


Filled with straight apple juice for enticement.

We have loved the Dr. Brown’s bottles (they are A-MAZING for reflux) so I thought for certain he should take right to the Dr. Brown’s sippy cup. Dr. B – that’s my choice!

After carefully checking each cup and examining them, Ms. D picked the NUK cup to try first thinking it would be the best fit.



And later we tried the Dr. Browns. The spout isn’t long enough to elicit a suck response out of him and he cried a little. Or maybe he realized it was pink. Who knows, but my first choice was NOT the winner.

And the Playtex sipper is going back in the cabinet to wait its turn, because we have a clear winner guys~ THE NUK! (Convinced more than ever that Ms. D. really knows her stuff – and that’s why we love her!)

He drank a whole ounce without a spilling a single drop out of the corner of his mouth! For the boy who was never supposed to be able to drink anything by mouth, we are moving toward sippy cups!

Today is an amazing success and I am so proud of my Superman!