Tuesday, August 10, 2010

Second Nature

Me and Noel at Pizza Hut

My mother, step-father, and niece recently stayed with us for two weeks. They were vacationing from Florida, and I think the heat was worse here in NJ than it was in Florida. Anyway, I made a funny discovery while my mom was here.

I took Noel up to the room my mom was staying in. We were chatting and all of a sudden my mom says, "Where is the cap to my water bottle?" I had immediately removed it and placed it out of Noel's reach without even thinking about it. This type of thing has become second nature. I do it as naturally as putting the milk back in the fridge when I am done with it.

It is very rare to go anywhere and have it be Noel-proof. That makes visiting friends and family members a bit of a challenge. Often times I can't let go of Noel in a place, not because I am mean, but because the place just isn't safe for a child who does not understand danger. Noel puts everything in her mouth, including bottle caps. Her risk of choking on something is extremely high if her surroundings aren't made safe. That means I will pick things up and move them out of her reach, sometimes without even realizing I did it.

Sunday, August 1, 2010

Noel Learns a New Skill

Noel with her ball.

It is always exciting when an Angel learns a new skill. Unfortunately, I hadn't thought about the ramifications of Noel learning certain skills. For example, my daughter Anna and I have been trying to teach Noel to throw a ball for eight years. Three months ago she finally got the idea and starting letting go of the ball and throwing it.

What I didn't think through was that Noel wouldn't just stop with throwing balls. She throws everything. Since she is super strong, she also throws heavy objects. Yes, she has hurt us a few times when we weren't looking. What I am more concerned about is that she started throwing everything at school. She goes to a special services school and the children in her class don't know to watch out for her, and duck when she throws an object.

Noel is not trying to be mean. She doesn't have a mean bone in her body. She just doesn't understand that you are only suppose to throw balls. I can't yell at her, or punish her for throwing other objects. I just hope it doesn't take years to teach her what is appropriate to throw, and what isn't. Until then we will have to keep an eye out for flying baby dolls, toy cars, and fake food.

PS. I should mention the positive. Noel's DDD behaviorist was extremely proud of Noel and surprised at how she throws like a pitcher in the major league. She even has a wind up before she throws. So cute!

Wednesday, July 21, 2010

High Chair for Older Kids

Noel in her high chair.

Another Angelman mom was posting the other day about what to do after your angel is to big for a toddler high chair. Luckily, my daughter's health insurance company bought her a high chair when she was about 5 to 6 years old (time kind of blurs together these days).

The picture shows the high chair with Noel in it. Just to let you know, I store the high chair by the wall when it is not in use. I don't make her eat over there alone. She eats with us by the table. Here is what the high chair looks like without Noel in it:

There are straps, and the tray is resting to the side so you can see them. I don't use the straps. I am fortunate that Noel stays put when the tray is put in place so I don't have any need to restrain her. It is an option though.

The chair is totally customizable and you can purchase feet restraints and other items for it if need be. Noel's PT had a catalog, and the representative from AllCare Medical (I live in NJ) met with me and the PT. Noel was fitted for the chair, a script was obtained from her pediatrician, a letter of necessity was issued by the PT, and we got the chair. It took a year to get the high chair, and when we got it they denied the tray. I had to reapply for that, and received it 3 months later. It was a long process, but I didn't have the money to pay for it.

My advice is to consult your PT if you are in need of a high chair type device. They make them even for adults I believe. The PT should have catalog's that you can use to find one that is right for you angel.

Wednesday, July 14, 2010

My Angel Rides a Bike

I'm so proud of my little Angel! Last time I visited during PT, Noel could only push the petal 4 to 8 times. When I visited on Tuesday she got on her bike and began to cruise all around the school. She still needs to work on her steering. Every time she crashes she laughs hysterically. I just can't believe the progress she is making. What a great job her therapists are doing!

I only wish I could get her one of these special bikes for home, but they are not devices that the insurance company will pay for.

Tuesday, July 13, 2010

Bilateral DAFO's for Noel

Noel at a PT session with Miss Angela

Today I met with Noel's PT and her supervising PT. Noel has been walking on her tippy toes for years, but it has now finally gotten to the point that she needs to wear bilateral DAFO's (braces). Noel is especially tight in her left leg. She doesn't touch her heels to the ground, and she has been leaning forward when she walks.

To help Noel try to remain upright when she walks the school is trying a hip hugger (the red stretchy thing seen around Noel's waste in the above pictures). They are also going to try a weighted vest (which is different than the pressure vest she already wears) because when weight is applied to Noel's shoulders she flattens her feet back down on the floor.

I have go contact the insurance company to find out what company I can use to get the bilateral DAFO's. Then we will have to set up an appointment with a representative from that company to meet at Noel's school with the PT to measure her for the braces. A note from her physician and from the PT will have to be obtained to be submitted along with the measurements before approval is given. Since this process usually takes a few months, I am glad that the school can begin trying the hip hugger and the weighted vest. I'll keep you updated as I get more information.

Wednesday, July 7, 2010

Life with an Angel: A Sibling's Perspective

Photo: Noel (my angel) sister Kirsten, and sister Anna

I thought it would be interesting to get my daughter Anna's perspective on having a sister with Angelman Syndrome. Anna is currently 10 years old. I'm doing it interview style.

Me: What are your favorite things about Noel:
Anna: I love how much she laughs when I jump up and down. Her smile always cheers me up.

Me: What things bother you about Noel:
Anna: Whenever we play hide and seek, she always finds me. She steals my toys because she knows it annoys me. She laughs even when I cry.

Me: How do you feel when strangers make comments:
Anna: I don't think they should say anything because they don't know anything about her. It makes me feel sad that they don't understand. They must not have a brother or sister with the same problems.

Me: How do you feel about the extra precautions we have to take with Noel, such as never being able to set anything down in the livingrooms or diningroom that Noel could get hurt with, or always having to shut and lock the half doors when you enter or leave a room:
Anna: They don't bother me because I am used to it.

Me: Do you feel you are missing out on anything because Noel can't play the same way you do:
Anna: No

Me: What is your favorite thing that you have ever gotten to do with Noel:
Anna: Visit Storybook Land

Me: How do you think Noel feels about you:
Anna: She loves me. Sometimes she plays with me and not mommy. She loves to snuggle with me.

Monday, July 5, 2010

No Sleep for the Weary

Photo of Noel and Anna meeting Jane Seymour.

I guess I'll address the issue of sleep since Noel hasn't let me get any. Of all the issues that arise as a result of the Angelman Syndrome, sleep deprivation is the only one I have a hard time dealing with. Noel seems to be prone to never sleeping. As a single mom, I don't get relief. I can't even take a nap when Noel goes to school because I have to take care of my other daughter, work, clean the house, run errands, etc.

Probably the worst part about Noel not sleeping is the lack of a pattern. She can go to sleep fine and get up for 10 minutes and go back to sleep. She can get up for 3 hours. She can stay awake until 1 or 2 am and then go to sleep. Last night for example, I couldn't get her to sleep until 1 am. Then she was up at 4:45 am and still has not gone back to sleep. This was after a full day of 4th of July stimulation, and a 3 mg. Melatonin time-release pill.

So I have not yet found a drug that will work for Noel, but I do hear of success for other angels, especially with Melatonin. If you want a time-released Melatonin you can get one at Amazon. Not all stores carry time-release.

Most Melatonin pills are sold in either chewable, or capsules that must be swallowed. I was really nervous about this, but Noel had so much saliva in her mouth, she swallowed them without even a sip of water. Younger children would benefit from a liquid Melatonin:

I did try Clondine, but it gave Noel arm and leg tremors (and didn't help with sleep anyway). In addition when she was young I used Valerian Root. That didn't work on a consistent basis either. I am to the point where I think there is no medication to get her to have a full night's sleep. Even when she was a baby and had to have a CAT Scan and MRI, she needed 3 doses of Valium and me laying on top of her to get her to sleep. I stopped them from using the Chloral Hydrate after 2 times of it not working and making her sick as a dog for three days after.

One of the most common phrases I hear from people I know is "You must be use to not getting any sleep." How does anyone get use to sleep deprivation. I always respond with, "No, I don't get use to it. I just accept it." Afterall, God does promise not to give us more than we can handle.

I Corinthians 10:13

No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.

Saturday, July 3, 2010

Noel Visits Wheaton Village

Photo: Noel being pushed by her cousin RJ

The weather was gorgeous this week so I picked up my niece and nephew and headed to Wheaton Village with all of the kids. Wheaton Village is in Millville, NJ. I believe the place is actually called Wheaton Arts and Cultural Center. They are known for their glass blowing demonstrations.

Taking Noel to places like this is actually a breeze. She loves to people watch, and I have a Convaid stroller to push her around in. I use it to take her to the boardwalk, zoo, and even Disney World. Several times I have taken her out of the stroller so she could touch something or walk around, but she heads right back to the stroller and tries to climb in. She is so good in the stroller I don't even have to use the straps.

My daughters Anna and Noel, my niece Mackenzie, and my nephew RJ all had a blast. The place was pretty much empty and we had front row seats to watch the potter make a bowl, and the glassblowers make glass flower vases. The kids loved the museum where they got to find pieces of cheese left by Millie the mouse. They had to read the clues and find the special glass sculptures that Millie visited throughout the museum.

The General Store has penny candy, and the clerk was so patient with the children as they picked out and paid for the candy themselves. There was also a gazebo with lots of geese that were so hungry they were chasing us. Then the kids got out the rest of their energy playing on a unique playground. I think they liked climbing up in to the lookout tower the best.

Even though I have 4 kids by myself, it was the most peaceful and stress free day I had all week. I got good exercise and really enjoyed time with all the kids. I am sure Noel had a great time too because she didn't stop smiling the whole time.

If you are headed down to Wheaton Village make sure you print out their online $1 off coupon first. I used one for each of us and they gladly accepted them. Here is there website: Wheaton Village

Thursday, July 1, 2010

Catch That Drool!

Cute photo of my two girls!

One major issue with a lot of Angelman children is drool. From the day my Noel was born, she drooled constantly. She is 8 years old and still uses a bib most of the time. If she doesn't have a bib then I am stuck changing her clothes four or five times each day.

I recently became friends with another mother of an Angelman Syndrome child. She found a unique way to disguise the bib so that it looks like a fashion accessory. These bibs are so cute. The bibs are called hipper bibs, and they come in several different sizes and absorbencies.

I don't make any money by telling you this, I just really believe this is an exceptional product that could benefit Angelman children as well as parents of children with other disabilities. If fact, there are even hipper bibs available in adults sizes.

So check out hipper bibs HERE, and order a few fashion bibs for your little Angel.

Wednesday, June 30, 2010

Noel's Clinical Features of Angelman Syndrome

Photo from left to right: Anna (sister), Noel, and Destiny (cousin)

You can find a full list of Angelman Syndrome clinical features on the Angelman Syndrome Foundation website by clicking HERE! I am just listing the ones Noel presents with.

A. Consistent (100%)

1. Developmental delay, severe mental retardation
2. Slight gait, jerky movements, stiffness of the body, not always steady.
3. Happy personality most of the day with lots of laughs and smiles.
4. Easily excited and flaps her arms (I call them angel wings).
5. Non-verbal
6. Able to understand a little of my words, but not able to communicate back.

B. Frequent (almost 80%)

1. Microcephaly (small head) by 10 months old.
2. Seizures-febrile since 1 yr. old, on Topamax by age 5 for non-febrile.
3. EEG with abnormal results

C. Associated (between 20 and 80%)

1. Flat occiput
2. Sticks tongue out sometimes. Born with feeding and swallowing disorders.
3. Widely spaced teeth
4. Lots of drooling
5. Must chew on everything. Everything goes in the mouth. Also has PICA.
6. Sensitive to heat (both food, bath temperatures, and outdoor weather).
7. Doesn't sleep well. No apparent pattern. Doesn't seem to require normal sleep.
8. Fascination with water, plastic, and paper.
9. Constipation

Noel was on acid reflux medication by 2 1/2 months old. She also has an epigastric hernia. She is prone to pneumonia and upper respiratory infections.

Mental Retardation is a Clinical Term

Just thought talking about the word "retardation" was necessary. SO many people are offended by it. Here is how Dictionary.com defines the word:

Occurring or developing later than desired or expected; delayed.

It also goes on to point out that the word was created around 1788 when retardation meant simply delay. It wasn't turned in to an offensive word until 1970.

I have no problem listing Noel's symptoms and telling people that the Dr.'s have classified her as severely mentally retarded. It's a medical term just like Angelman Syndrome is a medical term. I don't take offense to it.

From what I understand there are 4 basic degrees of mental retardation: mild, moderate, severe, and profound.

Of course I don't want people to go around calling my daughter a retard. That would be rude and cruel (although she would just smile and laugh at them). That is just a person taking a good word and turning it in to something bad. The purpose of this post is just to address those who are offended by the word even when it is being used for clinical purposes.

Swimming with an AquaJogger

Photo of Noel swimming with her sister while wearing her AquaJogger.

There is nothing angels love more than water! I never in my wildest dreams would have thought that Noel could swim independently in a pool. Thank goodness her school has a pool, and that they taught her to swim with an AquaJogger. An AquaJogger is not a life-saving device, it just forces my angel to remain upright so that she does not keep going face first in the water.

Noel is now 8 years old and has been swimming with an AquaJogger since she was 3. She uses the AquaJogger Active Belt. Although they have Jr. AquaJoggers for younger children.

I first purchased an AquaJogger for my daughter to use at home in the summer. It came in handy when we went on our first cruise. She was able to swim independently in the ship's pool. Swim Outlet has AquaJoggers for half the price of any other store. I was highly impressed with them and would recommend them for any child with a disability.

Tuesday, June 29, 2010

Meet my Angel

My beautiful Noel was diagnosed with Angelman Syndrome when she was 14 months old. We were lucky enough to meet with a neurologist who was familiar with this syndrome. She ordered the blood test without tell us what she was looking for and had the results a month later. Noel was chromosome 15 deletion positive.

Noel is always happy, and very loving. She doesn't mind if you are old, or haven't taken a bath in 2 years. She will show you unconditional love. She teaches me many important life lessons.

Unfortunately, Noel does not understand danger, cannot talk, has trouble communicating, has seizures, feeding difficulties, sensory disorders, mental retardation, and much more. It's easy to forget these cons when you see her smile and feel her give you the biggest squeeze ever.

This blog will go along with a book I am writing on my life with my angel, Noel.