Wednesday, July 21, 2010
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
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
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
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:
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
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
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
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.