Back from Vacation with a Broken Arm

Noel and Shabooky the Clown

The girls and I took a trip down south to visit family. We were excited about meeting a new addition to the family, baby Callie, and spending Easter break in sunny Florida. We traveled by car and arrived on the evening of the 27th of March. Two days later (Good Friday) my mom and I planned on heading out to purchase gifts for the kids Easter baskets. Because Noel has Angelman Syndrome and requires diaper changes, I had to take her along. I turned around to grab her diaper bag and a cup for her to take along, and in that split second she fell and broke her arm. 

Noel can't talk, but I did notice she was holding her arm out. Still, I ripped off her clothing checking all over for swelling or bruising. I saw none. She wouldn't stop screaming. This alarmed me because she has a high pain tolerance and never cries more than 60 seconds after a fall. After seeing Noel flinch when checking her arm, my mom suggested we go to the hospital to get an x-ray. Sure enough, it was broken. Not the best way to start off a vacation. 

The hospital put a splint on Noel and gave me instructions to see an orthopedic doctor within a few days. It was a holiday, so none of the doctors were open. Noel spend four days in that splint before she could get a hard cast and I'll let you guess how many times she took it off! I had to be super vigilant during that time, which meant no relaxation. We were happy, however, to get an orthopedic doctor that was sympathetic and agreed to put the hard cast on. From that day on, life was so much easier. 

The rest of our stay in Florida was a blast and since Noel has a high pain tolerance it wasn't but a few days before she could stop taking pain medications and enjoy herself. She got to hang out with Shabooky the Clown at my mom's church festival, hold an alligator at the Alligator Farm, see the parade at the Catfish Festival, watch her sister ride a bull at the town fair, and stop by Ponce de Leon's Fountain of Youth park. Of course we also had BBQs with the family, played with baby Callie, went to church, and had lots of good food with family and friends.

We wore ourselves out, but it was worth it. Our doctor here in Jersey says she still needs 2 more weeks in her cast, but that everything is healing perfectly! I'm so grateful God worked it all out and that my mom was around to take us to the hospital at the time of the fall.

Chronic Constipation Frustrations

Noel Swimming with Her Aqua Jogger

Since the day Noel was born, she has suffered from chronic constipation. As a baby a little prune juice in water would do the trick. When she progressed to baby food, a little jar of Gerber prunes was all she needed. Unfortunately, once she became a big girl eating all regular food, daily medication was needed to produce a bowel movement.

Miralax was the original drug of choice. For a long time it worked well, even though it was hard to get her to drink enough to get it all down. Eventually the Miralax began giving Noel stomach cramps. I switched to Kondremel. All this did was create an awful orange slim that would help slide the feces out.

The Kondremel no longer works for Noel and I am left frustrated at what to do. Suppositories used to work after 60 seconds, but now I have to use 3 and still wait a half hour to get the smallest result. This summer I have used enema's twice with the most recent one being Monday. It is Friday night and she hasn't had a bowel movement since I used the enema on Monday.

Being stuck home with shingles, I happen to remember that my grandmother had a laxative pill. It was tiny enough for Noel to swallow so I'm hoping that this works, although I must admit I don't hold out much hope. What's worse is that Noel's urine smells awful again, indicating a high possibility that she has another bacteria growing in her urine as a result of fecal impaction.

I recently read and article on MedlinePlus that stated those at risk for chronic constipation are those that "Have diseases of the brain or nervous system that damage the nerves that go to the muscles of the intestines." Angelman Syndrome is a neuro-genetic disorder so I have to wonder if Noel's brain just isn't telling it to have a bowel movement.

Constipation is definitely an issue among AS kids, as I see it being discussed frequently in Facebook groups. Once mom just admitted her daughter tonight at a hospital for fecal impaction.

I have to believe that the brain is the cause due to the fact that I've tried so many foods that are known for relieving constipation, as well as fiber supplements and prescription medications that are no longer working.

So what do I do? I have no clue, but I sure hope God shows me soon. I hate to see Noel suffer and have days where she won't play at all, won't eat, and won't drink. I hate to see her having to push so hard her whole face turns red and then having to rely on me to physically help remove the feces. How do you tell a brain to do its job?

Operation: Get Noel Ready for School

Noel at the Naval Air Station Museum in Wildwood

Today I had the pleasure of visiting the dentist (I'm being sarcastic). As I was watching the dentist prepare all of the tools she'd need to drill in my mouth for the next 20 minutes, I was reminded that the preparation isn't much different from my morning routine for Noel.

The dentist needed to have all of the tools at arms length so that she could just grab each instrument quickly. I have to do the same thing with Noel, or risk her running away before I'm finished getting her ready.

Here is how Operation: Get Noel Ready for School works.

1. Lay out Noel's outfit, which must include a matching hipperbib.

2. Lay out a diaper, wipes, and diaper cream if needed.

3. Set out the bucket of hair supplies.

4. Get the DAFOs (leg braces), special sneakers, and a pair of socks out.

5. Grab Noel and attempt to put all of these things on her without calling Anna down to help, which rarely happens.

6. Place Noel's seizure pills in a yogurt and get her to eat it, which isn't always easy considering she doesn't like to eat anything before 10 am. Sometimes I'll try to pour Kondremel (laxative) over the yogurt and get her to take that at the same time.

The operation continues with Anna babysitting Noel so that I can get her bookbag ready for school. This includes diapers, wipes, an extra outfit, a Sophie Smock for use when eating, her pressure vest, the communication folder, and her lunch box. The lunch box must have a breakfast and two lunches because she usually won't eat the breakfast.

Angels are Messengers

Yesterday my pastor was giving a message in church that made me think about my beautiful angel, and her purpose here on earth. For those who are new to Angelman Syndrome, it is important to know that the children with this disorder are always referred to as angels. Of course, this seems appropriate, since our angels are always so happy and loving. I believe, however, that when we look at the meaning of the word "angel," we discover something more significant.

Angel in both Hebrew and Greek means messenger. I began to think of the many ways my daughter, Noel, is a messenger.

1. When Noel grabs the hand of a toothless man who obviously hasn't bathed in two weeks and smiles right at him, she brings the message that we are all deserving of love.

2. When Noel plays in her toy room without any lights on in the house, she brings the message that we do not need to be afraid.

3. When Noel stops crying two seconds after being hurt, she brings the message that we don't need to dwell on the bad things. Just pick ourselves us, dust ourselves off, and move on to the next thing.

4. When Noel spends six hours straight learning how to unzip a zipper without taking a break, she brings the message that sometimes it takes hard work and determination to achieve a goal.

5. When another child takes a toy right out of Noel's hand, she laughs and moves on to another toy, bringing the message of forgiveness, and dwelling on what really is important (not silly material objects).

6. Best of all, when you are feeling down in the dumps, Noel gives you a smile with a sparkle in her eye that instantly lifts your spirits despite it all. She is bringing the message you can find joy in every situation.

Noel has done all of the things mentioned above. Noel has brought me so many messages over the years. I appreciate the Father trusting me enough to be her mama. What a beautiful angel! What a beautiful messenger!

The Strange Illnesses Continue

Noel wearing 3-D glasses for about 2 seconds at Disney.

Noel has a history of coming down with strange illnesses. This summer has proved no different.

The problem started when I began to notice a skunk-like odor within my house. At first I blamed the newly purchased guinea pigs. It wasn't long before I discovered the unpleasant scent was coming from the urine in my daughter's diapers. Over the period of two weeks, the smell got so bad that one diaper thrown in the kitchen trash would stink up the whole house.

To the doctors we went. I am positive that if they didn't know us so well, they would have thought I was crazy. Noel had no symptoms of any illness. Getting a urine sample is the only way to find out what is going on, but that is not an easy task. Noel can't pee in a cup.

We were sent to the hospital so Noel could be catheterized as an outpatient. Outpatient said "We don't just catheterized people for no reason." UMMMM? I did have a reason. They said I could collect the urine in a bag and proceeded to call up to the lab. Guess what? The hospital lab was out of bags. How does that happen?

To make a long story short, we had to go through the hospital's ER. The doctor in the ER said there was a trace of something, but it wasn't a big deal. This took 4 hours. The next day, the hospital called and said the culture showed the growth of bacteria. The frantic nurse went on to say that I needed to go to the pharmacy and get an antibiotic ASAP. It was late afternoon, so I got the antibiotic and called her pediatrician the next morning to find out exactly what was going on.

The pediatrician called back after receiving Noel's lab work. He informed me that she had a rare bacteria called providencia, which he had to look up because he had never heard of it. Apparently, it is found mostly in burn patients. On top of this news, the doctor said the antibiotic the hospital prescribed is resistant to this bacteria. I had to go back to the pharmacy to get another antibiotic.

I am happy to report that Noel no longer smells me out of the house with her skunk-like diapers. They have returned to normal. Just praying she stays healthy and doesn't continue this pattern of strange illnesses.

Vivint Gives Back Project

Noel, Anna, Kenzie, and RJ with Robin Hood and His Men

Vivint Gives Back Project


The Foundation for Angelman Syndrome Therapeutics, or FAST for short, is an organization in pursuit of finding a cure for Angelman Syndrome. This is the syndrome that my daughter, Noel, has. Many angels suffer from debilitating seizures, which in some cases has led to death. Angels don't talk, have global developmental delay, any many other challenges which they must face on a daily basis.

A scientist in Florida has made significant progress in reversing Angelman Syndrome in mice. Funding is needed to continue his research. Vivint is currently giving away $1.25 million dollars to such charities as FAST. By voting once each day, you can provide the necessary funding needed to find a cure for my little Noel.

All that you have to do is head to Vivint by clicking HERE! Then "Like" Vivint on Facebook so that you can click "Vote" at the bottom of the page. FAST is currently in the number 1 spot, but it won't stay there without your help.

Thank you in advance for your help!
Alicia

Acceptance

Ever since Noel began school at the tiny age of three, I have had to deal with impatient drivers. Living on a highway magnifies the issue.

Picture the cutest 3-year-old you ever saw in a wheelchair device being lifted on to a school bus because she hasn't learned how to walk up stairs yet. Heck, she had only mastered walking 2 or 3 months before. Now picture an impatient driver honking his horn because he has to wait an extra 30 seconds to get where he is going.

Fast forward six years. Now picture a cute-as-a-button 9-year-old getting on the school bus wearing braces on her legs. She is down to only taking an additional 10 seconds of the drivers time, as she can slowly make her way up the steps. Some mornings this is achieved better than others. Again, picture honking drivers who feel getting to their destination is more important than a handicap child getting to school safe and sound.

I would have thought I'd be use to this type of daily treatment after six years, but I am not. My daughter is blessed not to understand that these people are behaving in such a shameful fashion. They are not content to gripe in their cars silently, they feel the need to lash out on their horn. Seriously, what do they think they will accomplish by doing this day after day?

Sadly, I see no way to stop this from happening. Most of the time I don't even know which car is honking, so I can't walk up to them afterward and show them what a sweet little girl Noel is. Although, one time Noel's old bus driver got out of the bus and had a few words with one of the cars. I'm not interested in having words, but rather educate these individuals so they no longer remain ignorant, or cold-hearted.