Monthly Archives: December 2013

He Sees You When You’re Sleeping

Supposedly Santa watches us when we are sleeping, but tonight, someone else is watching Braxton.  He is having a sleep study done at the hospital.

We saw a sleep doctor a couple weeks ago for a consultation to see if Braxton even needed a sleep study.  Surprisingly, the doctor said he had actually worked with 4-5 children who had Rubinstein-Taybi Syndrome, so he was familiar with the sleep apnea risk these kids often have.  Due to Braxton’s RTS diagnosis and the fact that his tonsils are so enlarged, the doctor said we absolutely need to have a sleep study done.  Thankfully, they were able to get us scheduled before the end of the year.

Waiting We checked in tonight just before 8:30 and they got us in to a room pretty quickly.  I had Braxton all set in his mandatory 2-piece pajamas.  Admittedly, I am still terrified about the possibility of him pulling at his g-tube  in the middle of the night and me not finding out until the morning, so he still sleeps in a onesie.  Gave me a good excuse to go out and buy him some new cute pj’s! 😉 Braxton was quite patient and cooperative!

Luckily, I remembered to bring his iPad, and he played happily while the tech got him all set up for the study.  She marked his head so she knew where to place the EEG leads.  Then, she cleaned the areas.  Finally, she placed the leads and glued them in place.  Braxton was a total champ during the process.  The iPad kept him distracted and content.

Braxton really only got upset when she had to put the nasal cannula on him which monitors his breathing as he sleeps.  He tugged at it a few times, and then he left it alone.  Amazingly, Braxton fell asleep almost right away! I’m not sure how, but he is fast asleep.

Fast asleep

The tech is really nice and said she will be coming in periodically to check the leads and the respiratory monitor.  I am somehow supposed to make myself comfy in a big chair and get some sleep tonight, but not sure that’s happening! They said they usually stop the study at about 6 am and then get him all cleaned up from all the gunk in his hair.  We should be on our way out of here around 7am tomorrow.

We follow up with the sleep doctor in mid-January to get the results of tonight’s test.  The sleep study will tell us if Braxton has sleep apnea.  If he does, the doctor will need to determine how severe it is and if any intervention is necessary (like a CPAP machine).  It will also give us a better idea about whether or not Braxton needs to have his tonsils removed. If he is having sleep apnea, he does not need his enlarged tonsils blocking his airway as well.

Just another piece of the puzzle.  Here’s to hoping I get some sleep tonight! I’m a tad jealous that Braxton can pretty much sleep anywhere, at any time, no matter the circumstances.

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Finally, a Breakthrough

Yummy in my tummy!

Yummy in my tummy!

Ladies and Gentlemen, it’s safe to say Braxton has finally made a HUGE breakthrough in feeding!! After a very long 15 months, Braxton is eating again! AND he enjoys it!

When Braxton was about 10 months old we started working on solid baby foods and he took to them right away. He was eating 4 ounces of pureed baby food 3 times a day and even drinking 6 ounce bottles.  At 14 months old, he came down with pneumonia and was hospitalized for 5 days.  After that, he began vomiting everything that we tried to feed him and he made a huge regression.  He stopped eating completely.  As he was vomiting so often, he quickly learned that anything that went in his mouth would make him feel bad, so the natural solution is to not let anything near your mouth.

We have struggled for nearly 15 months for every single bite of food we could possibly get him to eat to overcome this severe oral aversion.  We tried so many different strategies to make feeding fun and enjoyable, let him dictate the flow of things, and nothing seemed to help.  We switched over to a homemade blended diet last December, and since then Braxton has completely turned around.  He hasn’t vomited in a year now, so he is learning that it is safe to eat again without having anything bad happen.  A few months ago, he started to eat in Speech Therapy with his therapist.  Then, he started to eat for his teachers, but still he would not eat for us at home.  I felt so defeated and like a failure. Mommy guilt hit hard when others were more successful at feeding my child than I was, but we kept working.  Occasionally, he would eat about an ounce, maybe two ounces for me, but not much more.  However, we finally have success!

Last week, our speech therapist called to say that Braxton ate TWO WHOLE pouches of pureed food that I had for him at daycare.  That’s EIGHT ounces!!! When I brought him home, we tried again and he ate another 4 ounces! The next day at daycare, he ate SIX ounces! Over the weekend, he ate at least 4 ounces for me each day and with every feeding, he is getting so much better.  He is finally actively opening his mouth, coming toward the spoon, and even searching for the food as if I’m not getting it to him fast enough! I am so overwhelmed with joy to see Braxton eating and actually enjoying it! We have waited so long and worked so hard for this moment.

We are still a very long way from having Braxton’s feeding tube removed, but he is making steady progress.  I can’t tell you how frustrating it’s been along the way, to see him make progress only to be setback over and over again.  We are hopeful this time that we will continue to move forward.  He is still eating mostly pureed foods, but as his success continues, we will move toward more textured foods and then hopefully more table foods.  We offer him lots of finger foods, dry cereal, cookies, biter biscuits, and things like that, but he still isn’t quite as successful getting those to his mouth and IN his mouth.  He will just hit them against his chin and then throw it down.  Right now, I’m just happy he is eating anything at all.  We are so excited! Yea, Braxton!

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Alternate Funding for AAC with an iPad

First and foremost, I have to say that this post is NOT sponsored/paid/promoted, etc.  I’m not receiving any kind of compensation.  This is simply information I have learned that I would like to share with other families looking to purchase an iPad with the intent to use it as an Augmentative Communication device.

Recently, I’ve learned about two different programs with two different mobile carriers that are actually a great options for purchasing an iPad.

First, I have Sprint for my mobile phone carrier.  I went in to see about an upgrade and learned about Sprint’s “One-Up” program.  For cell phones, the “One-Up” program allows you to purchase a new phone for only the tax on the device.  You then finance the remaining retail amount with your regular bill. Sprint also offers you a $20 discount on their Unlimited My Way plan for choosing this program.  At the end of the year, you can choose to upgrade to a new phone or keep the one you have.

Here is how this worked for me:

– I chose to upgrade to the 16GB iPhone 5c.  This phone retails for $549.99
– I only had to pay the tax for the $549.99 which is $45.37 (That’s 8.25% sales tax here in Texas).
– The $549.99 is then financed over 2 yrs which comes out to about $22 per month.
– I then had to change to the Unlimited My Way plan which is $85 per month.  However, Sprint gives you a $20 discount when you choose the “One-Up” option, which makes this only $65 per month and gives you unlimited talk, text AND data! Sprint is currently the only provider which offers Unlimited data.
– My total bill is now $65 for the phone plan + $22 finance fee = $87/ month which actually came out to less than what I was paying previously!

Of special note here is the fact that in 12 months when Apple release the new iPhone I can do this same program with the new iPhone. You DO have to turn in the old phone to get the new one.  No more waiting 2 years! Plus, if you do the math, at $22/month for 12 months, I’m actually getting the phone for about $264 which is considerably less than buying it outright.  If you choose not to upgrade after a year, you continue the finance payments another 12 months and then you own the phone.

So how does this help if I want an iPad??

You can do the “One-Up” program with the iPad!

The rep told me that I could add an iPad to my account for $10 a month plus the finance charge, which for a $649 iPad would be about $27/month and I’d only pay tax of $53 that day.

So, if you are wanting to get an iPad for your child and you have Sprint, you could go in to a Sprint store (has to be an official Sprint store, this option is not available at third party retailers like Best Buy, Walmart, etc) and ask to add a line to your plan using the “One-Up” plan.  Pay the roughly $60 tax and you walk out with a brand new iPad that same day.  Monthly, you would be paying roughly $50 for service with the option of using both cellular data and wi-fi.

Today, I learned that AT&T has a similar program.  AT&T has the “AT&T Next” program which is essentially the same thing, but they do not offer a $20 discount on an unlimited plan.  They price roughly the same.  Joseph upgraded to a 32 GB iPhone 5s for $37.  Talk about a deal! AT&T actually offered a credit for his old phone which is why that is less than what you would figure taxes to be.  For the plan, the unlimited talk and text plan was $25 per month and then he had to choose a data plan which came out to $45 per month just for data.  When all was said and done his plan plus phone charge came out $95 per month when he was previously paying $150.  The rep also confirmed the “AT&T Next” plan was available on the iPad with a $10 a month plan plus the finance charge for the device of your choice.

When you think about it, you are basically leasing the phone/iPad with the option to upgrade or own it outright at the end of the term.  Either way, it is certainly a worthy option if you are having trouble finding funding for a communication device as many agencies are starting to crack down since many people just want an iPad for the fun stuff and don’t always use it for AAC.

After some research, I see that T-Mobile has the JUMP! program and Verizon has the Edge program, which seem to offer similar options, but also offer a 6 month upgrade option. I don’t know the ins and outs of those programs, but definitely check with them to see if this is an option for you.

Some cons to this of course include the fact that this is JUST for the device and does NOT cover any accessories or communication programs.  Some of the funding options will cover a case and communication program for the iPad, which can deter you from the phone carrier option if you are looking at one of the pricer communication apps.  Many apps offer a free trial so you can see if it is a good fit before purchasing. But, really, you should have a qualified Speech Therapist with experience in AAC complete an evaluation to see what device and what app would be most appropriate.  Many therapists have all the apps and options to try with your child so you don’t spend $200 to find out your child can’t use the app you bought.  And believe it or not, the iPad is not always the best choice.

I hope this information is helpful to anyone looking to purchase a device for their child with special needs.  Even if you aren’t using AAC, there are a TON of apps that really help to improve cognitive skills, fine motor skills, and promote language development.  Check out Bridging Apps for app reviews as they relate specifically to Special Needs.  They also have great information on funding sources if you are looking for grants or other programs that will offer a device and communication program.

Brax and his iPadBraxton has really come a long way with using the iPad Mini and we are finally starting to use a free app to test out choice making using a very basic communication app.  He also enjoys many other apps that teach alphabet, shapes, numbers, music and a variety of other skills.  His understanding of Cause and Effect has greatly improved.  Initially, he would slam his hand against the iPad over and over.  Now, he knows to gently touch and then wait for it to do what it’s supposed to do.  With his communication difficulties, it is promising to see him understand how the device works and the potential it has to help him find his voice.

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