Tuesday, October 2, 2012

Eye Patching, Preschool Adventures and Running Out of Insurance Coverage

October is Down Syndrome Awareness Month! It is also National Physical Therapy Month as well as National Breast Cancer Awareness Month

We will celebrate by trying to do what is always our goal-- spread awareness, encourage acceptance and help create opportunities.

Eye Surgery- Part 2

It is probably time for a few updates.  Super Joe's first eye surgery was July 2nd and the surgery seems to have greatly corrected his extreme head tilt back, which was the goal of the procedure in which two eye muscles on each eye were cut and re-attached to a new spot.  Since then we have had some unexpected side effects due to the surgery.  Namely, Joey now no longer tilts his head back, but now tilts it to the right to try and overcome the extreme wandering/lazy eye that was a result of the first surgery.  His little left eye just keeps rolling waaaaaayyyyyyy over to the left and somewhere into the his head.  His right eye is doing great, but his left eye did not recover as we had hoped.

It is really hard for me to watch.  Mostly because this was never an issue before. That being said, his very kind and skilled eye surgeon told us last week, "Look, this is my fault.  The surgery caused his eye to wander and now we are going to try to fix it."  This is not any kind of malpractice or litigious issue, instead it is just a risk of eye surgery.  Apparently it is not uncommon to have to go back in once, twice or even a few times.  

My husband was the first to notice that they eye had started to seem to wander.  Then we noticed that Joey stopped pulling himself up.  The next thing that happened is that he started just putting his head down in the middle of the floor and putting his head in his hands.  This happens anywhere from 10-15 times a day for varying amounts of time. His teachers at school also noticed and were concerned that maybe he was tired.  

What we have learned is that he is working so hard to try and control that left eye, that his mobility has been affected and it is causing him some pretty severe discomfort.  Thus, to give himself a break and re-group, he just puts his little head down.

His next eye surgery is scheduled for Friday, October 26th and in the meantime we are supposed to patch his "good" eye every day for an hour.  The first few days I cried because I just felt so mean, but gradually we are getting the hang of things.  He lasted for only 15 minutes the first day, 45 minutes the next and we are finally up to an hour.  He is such a tolerant little man. God bless him for his patience and sweet disposition.

Tommy said he wanted to be like Joey.

Simply Thick

Next week we are going in for a 3rd Modified Barium Swallow Study (visit here to learn more about swallow studies)to see how Joey is doing with his dysphagia and aspirating on thin liquids.  He has now been on the Honey Consistency of Simply Thick for two years (almost to the date).  A little over a week ago, the FDA issued a new warning about the use of Simply Thick in infants.  There was a warning as well as a recall last year, but up to this point Joey has been very successful using Simply Thick.  This has been a tough call to make.  We do not believe he is in any danger, but it is time to get another swallow study and try to come up with some strategies to eventually get him off of the thickened liquids.  We still pay for Simply Thick out of pocket because of our insurance refuses to cover it, so it costs us approximately $300 per month.  It will be nice to say "ciao!" to the thickener at some point.

Preschool Adventures

If you had told me that when Joey started to attend his two day a week "2's" preschool program that he would immediately make a friend and have the time of his life I might have doubted you.  I should be ashamed. Preschool is where the action is for Super Joe.  He is having the time of his life and he yells and wails on Monday, Wednesday and Friday when we drop off Tommy and he doesn't get to stay.  However on Tuesday and Thursdays, I carry him to his class room, drop him off and away he crawls without a second's hesitation or a backward glance.

His little friend comes immediately up to him and squeezes Joey's cheeks in his hands.  It's amazing.  Then I saw his friend's mom and she told me how her son kept telling her about his friend Joey.  Incredible.

What has also been incredible is his teacher's willingness to go the extra mile to learn about Joey and how to help him adapt to the various activities.  We walked in today and the director of All About Kids signed, "More cheese, please" to me and I almost cried right on the spot.  She said that Joey's teacher has taken the sign language very seriously and has been helping to teach the other teacher's some signs as well. 

The tears are pretty much a guarantee on most days and I told them I promise I will try not to cry every single time I am there, but every single time there is something that is so overwhelmingly amazing to me that I can't help.  

Our amazing coordinator from the county and the Community Partnership for Inclusion met me out at the school last Thursday with one of the wonderful physical therapists and they brought a gait trainer for Joey to use at school to help give him an opportunity to be on the same level of his peers during parts of class.  It was so amazing and as with most of our Joey experiences somewhat overwhelming and emotional.  

Tommy sticks by Joey's side until he has deemed the situation "a-ok".

The Gait Trainer has been awesome.  Look at that smile.  Look at this little love bug standing up to the water table to be with his friends.  What was most amazing is that he actually moved his feet and kind of "walked" a little in it.  I wish I could properly express how much effort and work and time we have put in to try and help Joey learn to walk.  To learn to use his feet.  I massage his legs, feet, arms and hands every single night to try help "wake up" his neurotransmitters and to help provide feedback about his extremities and how to use them.  To see him so motivated that he wants to try and walk to a table is simple incredible.  

From the staff at All About Kids to the team at Help Me Grow and Summit DD-- we are seeing our dreams of Joey learning independence and of him having friends and adventures and it is one of the most overwhelmingly amazing and incredible feelings. To go from being pregnant and not knowing if he would make it and not knowing what it would mean to have a child with Down syndrome to seeing him develop into this spirited little boy is such a journey in such a short time.  

Running Out of Insurance

Well, it finally happened.  With four months left in the year we maxed out on our speech therapy, occupational therapy and physical therapy.  All of them.  All at once.  Oh my.

What do you do?  Well, we are appealing it to our insurance company.  We are trying to seek additional coverage under the Affordable Care Act with the argument that since necessary treatments cannot be limited under the ACA, Joey's therapies cannot be limited to the number of treatments the insurance company has deemed for him.  

While the good fight goes, we pay.  We pay and we pay and we pay.  And it is worth it.  We have an AWESOME team of therapists and they are worth it.  Until we hit January 1st we pay approximately $1200 per month out of pocket for his private therapy.  Gulp.  I honestly wonder how many families do it.  How do the working moms do it?  I quit my job just so I could take Joey to all of his appointments and therapies. How do families make it when they have medical costs that are equal to a second mortgage?

We are also applying for some funds at the hospital.  We do not meet the requirements for financial assistance or for BCMH, but there are funds available at some hospitals, so if you are going through this, be sure to call the financial counselor at your hospital or therapy center. 

And in the meantime, I try to "sneak" in therapy anywhere I can.  Wrestling with his brother hits a lot of our PT and OT goals.  We do a lot of our feeding and speech during snacks and meals and we also doing the eye patching during meals.  Bath time also gives us a good opportunity to work on balance and coordination.  It's all about being creative.

Our Little Troublemaker

Maybe it's turning 2 or maybe it's going to school or maybe it is incredible lightening quick army crawling, but whatever it is, Super Joe has kind of become a bit of a sneak....and we LOVE it!

It started the night I was trying to get them ready for their bath and walked in the bathroom to see a pile-- literally a pile of clothes in the toilet. Not his clothes either-- his brother's clothes. Huh? How did this happen?  Joey?  Seriously??? This has lead to needing to keep the toilet lids down at all times and the bathroom doors closed because Joey is obsessed with water and will go to extreme lengths to get the opportunity to play in it.

His other favorite things to do are to take the dirty dishes back out of the dishwasher...

And finally, he loves to take out all the Tupperware and bang it around on the floor just like his older brother used to do.  It is the sound of angels to my ears.

Happy Down Syndrome Awareness Month! 

What have your little ones gone through and survived?  Was it harder on you than on them? Anyone else trying to work around insurance restraints?  Any tips?


  1. Awesome updates...glad he continues to grow and improve. I think you can apply for Medicaid with him? I have a friend at work, going through similar struggles, I will check with her and get back to you. She is familiar with a lot of resources. Keep up the good work mama, you are doing what any good, dedicated mom would do. Hang in there sister!!

  2. Thank you Renee! He/we don't qualify for it. :-( Thank you for your kind words!! Prayers for all the moms and dads trying to figure out how to make it all work!


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