The Stuff We Need

These are the things that Jaycee uses daily. She requires a lot of "stuff" to keep her going.
-There's the black vest that she uses in airway clearance therapy 2-4 times a day. The vest is hooked up to tubes and a big old machine.
-The green foot braces are used to help her when she's walking.
-The large mask represents her bi-pap machine that she uses nightly.
-The pink and black device is her communication device that allows her to talk to others.
-Then there's her nebulizer mask, inhalers, and medications she takes daily.

Everyday, these necessities must be done. Everyday, we take these necessities into consideration when we are planning simple things like wake up time, bed time, what shoes she's wearing, what time she's eating her last meal, etc. The stuff is hard to deal with at times. But, I am grateful she has stuff that helps her be better and be healthier.

Walt Disney World Tips For Families with Special Needs

A few months ago, we ventured down to Florida to visit the magical world of Disney. For months, I planned, worked with a travel agent, and made preparations. It is a little different traveling with a child with special needs, so I wanted to share some things I learned.

1st Character Meeting at Disney

 

1. If you are booking your room in a Disney World resort, do your homework. You'll want to read up on the amount of walking involved around your resort. We stayed at the Art of Animation because my son loves the Cars movie. There wasn't large distances to walk on this resort but you did have to walk for everything: catching the bus, going to the cafeteria, the laundry area, the arcade, the pool. There was "nothing" in the building with our room except other rooms. So, if you just wanted to fill your resort cup up with soda, you had to make the walk to the soda machines in the cafeteria. Still, I had read up about the resort and was prepared.

2. Usually when I vacation, I ask for a room on the first floor to make it easier for Jaycee and us. A bi-pap machine, nebulizer, vest airway clearance system, and distilled water are just some of the extra stuff we have to lug around. I forgot to ask for a first floor room at Disney and I wish I would have. Don't make my mistake. Every step counts at Disney!

3. Strollers or wheelchairs are a must if your child cannot walk long distances. My child cannot walk too far or stand in one spot for very long, so our stroller was a necessity. The walk from our room to the bus stop would have done Jaycee in if we made her walk it! Jaycee has had a "medical stroller" for a few years now, so we didn't have to buy anything extra for the Disney trip. Again, there is a lot of walking on a Disney trip so keep this in mind. There are stroller rental places in Orlando that offer free delivery or you can rent something at the park as well.

4. If your child has a disability or conditions that make it difficult for he/she to stand in line, you can get your child a Disability Access Service Card. When we went in Feb. 2014, it worked like this: We went to Guest Relations within the first park we visited in order to sign up for this card. We were not asked for any documentation to prove a disability existed. But Jaycee does have Down syndrome and was sitting in her stroller, so this may have been enough proof. They took her picture which printed on a card we carried around for the rest of our stay. When we found a ride or a character meeting that we wanted to do, we presented the card to the ride attendant. The ride attendant wrote down on the card a time for us to return back so that we could get on the ride without waiting. Usually, they cut the wait time in half. For example, if the current waiting time was 1 hour, then they would instruct us to be back in 30 minutes. When we returned, everyone in our party was allowed to "cut" the line using the fast pass entry and go straight in.
There are a couple of rules. First, the person with the disability must ride the ride to use the card. In other words, my husband couldn't sign up to ride a roller coaster with this pass since Jaycee couldn't ride it. Secondly, you can only sign up for one ride at a time. This was not a big deal for us since we used this card in combination with the 3 fast passes we were allowed with our package each day.
Disney has made a lot of changes to this program due to abuse of system. I found this process to be extremely helpful and accommodating. Before we stopped for lunch, we would sign up for a ride. Or, we could sign up for a ride and take a restroom break or do a little shopping. We appreciated the fact that we didn't have to wait in line with Jaycee. She truly couldn't have stood it and it saved us some stress.

5. If your child does use a medical stroller, you will want to get a special tag for it while you are at Guest Relations. This red tag indicates the stroller is the equivalent of a wheelchair. There are a few places where strollers are not allowed, so this tag will allow you to take your stroller everywhere. Otherwise, you will be stopped! After the first day, Jaycee was tired so we started keeping Jaycee in her stroller in line. This tag allowed us to do that. Jaycee in lines=us wrestling her to either stay with us or to stand up  The stroller red tag was a necessity for us!

6. If you make reservations at a Disney eatery, expect delays. I wrongly assumed that we would be taken to our table at our reservation time. The buffet reservations were usually on time. The rest of the reservations were 15-30 minutes off. I wasn't expecting this. Some days, I planned later than normal meals but they ended up being really later than normal meals.

7. Don't be afraid to try new things. I wasn't sure if Jaycee would hate the character meetings or love them, but I gave it a try. Success! I wasn't sure how the evening electrical parade would be received either. Success! My husband wanted the kids to try a water ride for the first time. No success there for either kid but it made a good story! We tried a 3D movie for the first time at a Disney park. Jaycee sat in the floor with her face covered but Elijah liked it! Petting a snake? Jaycee did that too! As for the fireworks (which Jaycee cries at every 4th of July), we weren't brave enough to try that. Still, we found that Jaycee was really willing to try new experiences at Disney. We left with so many special memories.

Overall, I found Disney to be very accommodating of those with disabilities. We are hoping to get back there one day!

Ortho to the Rescue

What in the world is wrong with Jaycee's feet?

I asked myself this question this winter. As she recovered from an illness that severely weakened her muscles, she slowly got her strength back. She learned to walk again but her feet turned out. Of course, her feet have always turned out a little bit, but this was noticeable. In fact, I got her a cute pair of winter boots like normal, but she couldn't walk very well in them. She didn't walk very well in any shoe that wasn't supportive. Basically, she needed to wear tennis shoes all the time to walk easily.

When she was barefoot, my inspections continued. I couldn't quite put my finger on what was wrong, but her feet looked odd when she was standing, especially her right foot.

 



Her foot rolled in and it was noticeable around the ankle area. Her feet are flat too. I'm not sure if this has always been going on and it was mild, so I didn't notice. Or, maybe it did all start after her illness due to muscle weakness and some weight gain. After months of waiting for things to improve, I finally did something.

I took Jaycee to a pediatric orthopedic professional. She told me Jaycee needed physical therapy and not orthotics. Ok, I was fine with that.

A few weeks later, I took Jaycee for a physical therapy evaluation at the same pediatric hospital. The person did note weakness but also recommended orthotics for her feet.

Really? Sometimes navigating the special needs world makes me want to throw my hands up and scream! I was glad that I met someone that agreed she needed some orthopedic support, but I just wish the first person would have came to that conclusion.

Fortunately, an orthopedic person was in the physical therapy office the day we was there. They took casts of Jaycee's feet. We picked out Jaycee's favorite colors for the straps (shades of green).

A few weeks later, we went to the lab to get her new "braces." Here they are:

 

These are to be worn with shoes to help her when she's standing and walking. But this picture is to give you an idea of what they look like. 

 

Here they are with the shoes on. The shoe hides most of it. I had to buy extra wide tennis shoes and taller socks. No more walking into any old store and buying shoes.

I hope this helps support Jaycee's feet better. We're in the process of breaking them in right now. She's tolerating them so far.

So, we are officially in the world of orthotics now. Add that to our list of things to do each day. But, if it helps, it will be worth the time and energy.

The Perils of Acid Reflux

My daughter has a growing list of diagnoses: Down syndrome, asthma, strabismus (2 eye surgeries), AV canal (2 open heart surgeries), Wolff-Parkinson White syndrome (2 ablations), obstructive sleep apnea, lung cyst, and as of last week.... GERD (Gastroesophageal reflux disease)

When Jaycee was a baby, she was diagnosed with acid reflux. Some moms consider feeding their infant a special bonding time. That wasn't the case with Jaycee & I. Feedings when she was a baby were stressful. I worked so hard to get her to take just a few ounces, and then I would hope and pray she'd keep them down. Most of the time, she would blurp it back up and out. We use to hate feeding her in public places because it was more likely than not that she was going to vomit during or after a feeding. Ah..those were the days!!

Then it eventually got better when she took more baby food. She came off her reflux medicine at some time or another. Acid reflux was done and over with. Or so I thought.

Recently, Jaycee was put through a number of tests as part of a hospital's specialty team that helps children who are "chronically ill." I was surprised to hear that Jaycee qualified for such testing because chronically ill just seemed so serious. I guess when you are in the hospital in June, July, August, Sept-October, & November and are treated at home for the next 2 months for illnesses, then that qualifies you. Maybe she is chronically ill?

One of the tests Jaycee went through was an impedance probe study. Essentially, this is the gold standard for determining if there is acid reflux. Prior to the testing, I was asked several questions to determine if she had symptoms of reflux:
-Does her voice ever seem hoarse?  Wet?  Gurgly?
-Does she complain of her chest hurting?
-Does she complain of things getting stuck in her chest?
-Does she burp a lot?
-Does she spit up or vomit after meals?
No, no, no. The answers to these and the rest of the questions were no. No symptoms. But then again, my daughter doesn't really talk, so I'm going on what I hear and see.

The big day of the multi-disciplinary tests came. The impendance probe was placed and the 24 hour recording began.

 

This is the probe taped to her face. Believe it or not, she never knew it was there. She never touched it. We never mentioned it. It was beyond amazing. She just left it alone. The hospital had sent us back to the hotel with some "no-nos," which are coverings to put on the child's hands to keep them from pulling the probe out. But, we never needed them. I've read that most kids pull these out in their sleep, but Jaycee's bi-pap mask prevented that. 

 

The tube that runs out the nose is connected to this recorder. It gives a constant measure of the ph. When I gave a medicine, I hit the first button that looks like a pill. When she ate or drank, I pushed the fork button & made notes for the doctor. When she laid down, I pushed the bed button. The heart with a lightening bolt button was pushed when she had a symptom like coughing.

 

 As Jaycee wore the recorder, I tried to not obsess over the ph numbers. I looked at them occasionally but I figured someone smarter than me with M.D. behind his name would tell me later what everything meant. However, I did check the ph level just before I woke her up the next morning. When I saw the ph was 1.0, I thought it was a bad sign.

 

Two weeks later, the results are in....Gastroesophageal Reflux Disease (GERD). She has "mild" reflux happening during the day and at night. I wonder how long my child has felt bad without me knowing. I wonder how she feels after she eats a nice yummy taco dinner with spoonfuls of salsa. The poor kid! Is this the reason why she hardly ever eats breakfast? Could this be contributing to her frequent wheezing or pneumonias? It turns out, this test was a good idea.

 

So, Jaycee is starting a medication to help with this. She'll have another impendance probe study to determine if the medication is working in a few weeks. We've been given different lifestyle changes and foods to try to avoid to decrease her symptoms. Of course her favorite foods are bad for reflux: tacos, salsa, spaghetti sauce, chocolate.

 

So, it appears it is time for me to get some new recipes, some nice bland recipes. 

 

Good-bye salsa! We'll miss you!! That's the price we pay for health.