Tuesday, April 30, 2013

Receptive Language Therapy Board

Working on receptive language is not something my little Emma does with excitement.  When asking her to identify objects she tends to turn her back on me.  I know how important it is so I had to come up with other options.  Below was my plan and we have enjoyed playing with it.  This took less than 30 minutes to make and will be hours of entertainment.

I started with a canvas board and felt fabric.  There are other options for backing and fabric I just chose these because they were on sale.  Just make sure you choose a fabric that velcro will attach too.

I glued the felt to the board.

Staple gunned the back.

Finished product.

Next I got small wood figures and the letters that you use in the bath tub and attached velcro to back.

I decided on the velcro route because magnets make me nervous.  Emma likes to put things in her mouth and I did not need a loose magnet laying around.

Hours and hours of fun.

I also made a small one to carry in car.

Monday, April 1, 2013

Sleep study: what to expect

Presley had a sleep study last night at 21 months old at my request.  Children with DS can have many different types of sleep issues from central sleep apnea, obstructive sleep apnea, restless sleep, lowered oxygen levels, etc...  The Obstructive Sleep Apnea can related to the different anatomay sizes, such as narrowed oropharyngeal area, smaller mouth, sometimes larger tongue, or additional fatty deposits around the neck..  Since they are prone to lowered immune system, they are set up for more infections, which will cause the lymph tissue of the tonsils and adenoids to chronically enlarge and further narrow the airway passages.  This is what causes Obstructive Sleep Apnea (OSA).  Presley, however, had a central apnea when she was born in addition to a low heart rate.  This is caused from an imbalance or dysfunction within the brain.  We initially went home after she was born on a sleep apnea monitor and a low dose of caffeine.  She quickly came off of both by 2 1/2 months.  Most children with DS have a sleep study sometime between 2 - 4 years old.  While Presley did not have the snoring, awakening with a gasp, stagnant growth, or excessive daytime sleepiness, she is a very restless sleeper and make laps around her crib each night.  I requested the sleep study to ensure she is indeed going through the proper sleep cycles and that her oxygen saturation levels remain optimum.   

Before the test:

There were approximately 10 -15 electrodes that must be placed around the head and face.  There will be one placed very close to each eye to measure when your child goes into REM sleep.  Presley was fine with the nurse using a marker to annotate the spots and even when she placed the liquid adhesive, electrode, and special tape on.  She was not ok with what came next, a pencil sized air compressor blowing a strong air flow onto each individual electrode as it was placed.   It was loud and blew air close to her ears and eyes.  This greatly upset her (and me).  I have heard you could prepare your child by using a blow dryer on them, but I do not believe it would have helped us as the sound and force was different.  Afterwards, three electrodes were placed on her chest to monitor her heart rate, also glued in place.  Then two Velcro straps were placed across her chest and abdomen to monitor respirations and possible apnea.  A pulse ox was placed on her finger to constantly measure oxygen levels.  I would recommend not wearing the footed pajamas like we did and instead, wearing two piece pajamas and placed the pulse ox on your child's toe instead and covering it with a sock.  Presley would awaken often and attempt to shake this off.  Lastly, a nasal cannula was to be placed (same as the one you see oxygen given through).  Since I was holding Presley by this time, I asked could it be placed after she was asleep and this worked out better for her as she was exhausted and did not even wake up when the nurse put it on later.  

We were offered the crib, but encouraged to use the regular hospital bed.  They do not want the parent on the bed with the child as your movements could cause artifact on the monitors.  I used every blanket and pillow I could find in the closets building a fortress around Presley in that bed, despite the four rails being up.  Presley awoke very often, every 15 minutes for several hours and had to be patted back to sleep.  The child is not allowed to move around much, and definitely not allowed to change their position with their head towards the foot of the bed, so I had to stay at her side to pat her and redirect her each time before she pulled wires out.  Finally, after a couple of hours of sitting in a chair next to the bed, the nurse told me that I could sleep at the foot of the bed, which seemed equivalent to 2 feet of space.  Reflecting back, I should have used the crib and had the other bed pushed close by so we both could have been a little more comfortable and not take the chance on causing false readings during the study. 

Things I brought to the sleep study:

1.  Portable heater.  Everyone tells stories about how cold it was during their sleep study, so I didn't ask permission and the nurse didn't comment on it.  It did help and also provided a nice "white noise" type background that Presley was used to.

2.  Essential Oils Diffuser.  Presley sleeps with a mixture of lavender and euchalyptus in her humidifier each night, so this is something she is accustomed to and I wanted to make it as much like home as I could for her.  It also offset the smell of the adhesive mixture they used.

3.  Blanket.  Although the hospital has lots of blankets, I brought the blanket that Presley and her big sister Payton play with all the time.  It is large and made the bed colorful, comfortable, and smell like home.  A favorite teddy bear could also help.

4.  Portable DVD player.   I turned this on while the nurse was placing the electrodes.  It didn't help, but we had it as an attempt to distract.  If Presley hadn't fallen asleep, we could have stayed up and watched her favorite videos.

5.  IPAD.  This was the back up distraction to the DVD player.  They do not allow cell phones or WiFi connections in the rooms though, stating it could interfere with their signals, so it could only be used for games that are already downloaded.

6.  Food and drink.  I planned on not leaving the room, so I brought my own drinks and snacks.  I also brought Presley some crackers and her milk smoothie.  I made sure to have my own portable cooler so I didn't have to ask if they had a refrigerator or leave the room to find one.  I just could not bare the thought of Presley waking up scared in a strange place and me not being at her side.  Bringing change for vending machines is another option for others.

7.  Toys could also be brought, but Presley goes to sleep very early so I didn't bother to bring any.  Also, someone suggested a hat to stop her from pulling at the wires, but Presley dislikes hats and it would have become her mission to get it off before falling asleep.  Some people play music at night, so this may be appropriate for your child.

After the test:

Despite our best efforts, neither Presley nor I got much sleep.  She may have actually reached the REM cycle between 3 and 5 AM when she finally slept more than 15 minutes.  They usually will wake everyone up at 0700, and they would like the child to stay hooked up to everything and in bed until then if they wake up early.  However, my girls are early risers and at 0520, the nurse gave up and took the equipment off.  We were out the door by 0600.  They use liquid acetone to loosen the electrodes.  It smelled awful and the adhesive material remains on the skin.  We were able to get the adhesive off after her bath by using coconut oil and gently rubbing.  Baby oil had been suggested too.  Now we will be waiting for approximately two weeks to get our results. 

I hope this helps give a picture of what to expect and possibly gives you some ideas how to prepare for a sleep study if this is in your child's future.

Robin Tolliver

Read more about Sleep Apnea and Down Syndrome at: