Monday, February 27, 2012

Washington DC with CP and a 5 year old

A few months ago we were invited to join Jeff's parents when they went to Washington DC. We were talking about taking Laura there so we thought it would be fun. His parents have a timeshare so we stay in accommodating places.

Laura went down with them on Monday. Jeff and I went down bright and early Tuesday morning. One thing that I've learned while traveling with a disability and a child was to always be prepared.

I usually pack a few days before a trip. This way I know the majority is done and all I needed was to add last minute things. An hour before Laura left, we ran to Giant to buy food for the trip. The places we stay have kitchens in the suite so we don't always need to eat out. It's convenient especially with a hungry little one and cuts down on costs.

On Monday night, Jeff's dad texted me that Laura loved swimming and was having fun. Jeff and I got up a little after 5 and groggily got dressed and left a few minutes after six. After a quick stop to pick up 2 sodas and 2 snacks -we didn't stop until we arrived.

I had to hand it to Jeff. He worked until 10 on Monday night, came home, packed up the van and we both didn't really sleep until 11:45. We got up about 5 hours later. I was impressed

On trips, I usually snack on slim jims or twizzlers because I can hold them myself. We hit a little bit of traffic but all in all, time went fast. We were there just a little bit before 10.

Laura was happy to see us. She was still in her pjs so we got her dressed. We all decided to go to a few museums. As we waited for his parents to get ready, we explored the hotel.

Laura acted like a tour guide but got lost a few times. We managed though. One thing was a little silly and that was for someone to get to the pool in a wheelchair, they needed a key for an elevator to go both up or down. So if you are going to the pool, make it worth the while.

Our room was fully accessible with wonderful accommodations. We had a king sized bed so it felt like we were in two different countries. We have a queen at home.

So after everyone was ready, we hopped on the metro and went to the Smithsonian museums. The metro is fully accessible. Just be quick not to get stuck in between the doors. At one stop, my chair turned off as I was trying to get off. Jeff and another guy tried to open the door back up, but it wouldn't. We had to get off at a next stop and go back.

Stay tuned for the museum adventure.

Saturday, February 25, 2012

Write my name iPad application - review

Laura uses our iPad for educational games and watch shows on Netflix. I have been working with her on writing and reading, She has been on the brink of reading for months. However, she much rather write than read.

I found an app last week on the iPad perfect for children learning how to write. It's called Write My Name and runs for two dollars. As a parent and teacher, I find it very beneficial.

The child sees a picture, hears the pronunciation and is able to trace the word as well. I tried it and even with cerebral palsy, I was able to trace the word. This would be an excellent app to use in physical and occupational therapy.

Children with autism, cerebral palsy, and learning disabilities could benefit fro this app. Laura use it for 30min at a time and was sounding out words on her own,

You can also add up to 30 words on your own. It comes with 100 pre programmed. I added Laura's entire name so she has practice writing her last name too.

Monday, February 20, 2012

Having a beta fish

Ten days ago Jeff and I decided to buy Laura a fish. She had been asking for one but we already have 3 cats and 2 dogs. We suddenly wanted to surprise her and figured she was old enough to care for it.

So we went to the Good Will first and got her clothes. She's been outgrowing hers and got her some cute stuff for next year. Then we walked over to the pet store and she was curious why. Then we told her and she was so happy! She hugged and kissed us.

Jeff picked out a tank that had a filter and all that was needed for a beta fish. As he was getting that together, I took Laura to pick out her fish. I saw a pretty blue and white one and we both agreed on that.

Laura named the fish, Beato (pronounced like bateo.) She thought it was so cute and loved it. We taught her how to feed it and explained over feeding was deadly.

That night she went to sleepover my sisters and we promised to take care of the fish. The next day when we checked in on her, she cried because she missed her fish. My sister overheard her tell her son that she missed his, "cute expressions." So adorable!!

Jeff brought a snail for the tank. We were going to get a goldfish but were advised the tank wasn't big enough.

I enjoyed hearing Laura running down the hall in the morning to care for her fish. She would show it off on FaceTime.

After I went to hockey Saturday (Laura was at my dads house,) I came in and saw Beato on it's side at the bottom of the tank. I yelled to Jeff that he died. Jeff thought I was crazy. He tapped the tank and the fish started swimming around. I still knew it didn't look right lying like that but hoped for the best.

Later, right before Laura came home, Jeff looked at Beato and knew he was not healthy. We both were sad because a blue and white fish would not be that easy to replace so we had to eventually tell Laura.

My dad, who is like a fish expert, confirmed our suspicions. He suggested changing the water. Jeff did.. Before Laura went to bed, I looked at the fish and knew it was a matter of time.

Jeff and I sat her down and told her what was going on. She burst into tears and was angry that we even said anything to her. In other words, it was very sad and she didn't want to hear it. We told her he'd be happy in heaven and see him one day. Plus maybe we could get another.

The next day, Beato was dead. Laura cried but recovered. Donna, my friend/attendant, made a coffin. Laura took a big rock from her collection and took a piece of paper. She wrote "Beato. 9 days. RIP. ". We buried him under our holly tree.

Our tank is still up because of the snail. It's sad not to see Beato. We are undecided to try again.

Thursday, February 16, 2012

The beauty of FaceTime

So I lose my new iPhone about every night to my five year old daughter. The iPhone 4 and 4S has FaceTime. FaceTime is the thing that you can see each other if you both have the same phone and WiFi.

Since Sunday Laura calls my father and does FaceTime with him at least twice a day. She also talks to her cousin through FaceTime. She gets a kick out f it and giggles so much.

I think it's amazing that family can be brought together through technology. Some people claim that technology is destroying the world or doing bad things. Overall, I think technology makes us all a little closer.

I wish I had an iPhone 4S when I was in college. I wouldn't have been so homesick and could see my boyfriend at the time.

As I type this blog, Laura is showing her grandpa how to make a bracelet through my phone. She is so happy.

Snacking before dinner time

Laura has never been a huge eater, but she has always been a healthy eater. Some of it has been from how I raised her, but mostly she decided to eat healthy on her own. She even takes the breading off her chicken nuggets and the only things she likes at McDonalds are apples and the fruit parfait.

So getting Laura to eat healthy is the easy part. But now the issue is Laura is very dramatic at dinner. No matter what we fixed, she complains and claims she doesn't like it even though she loved it the day before. Dinner becomes like a battle than a family relaxing dinner.

She does get hungry between 3pm-5pm the most. If I give her dinner at 4-4:30, she's starving by 5:30 again. Our dinner time is around 5. Every time she ate at 5, she'd take three bites but then said she's full. So I had her eat with Jeff at 6:30. That worked somewhat but she still complains she doesn't like the food and drinking her milk is a tragedy.

I created a snack box so I fill up her snack box with healthy snacks. I explained to her that when it's empty that she won't get anymore snacks until tomorrow. I'm trying it for first time today. So far so good and hopefully she will eat dinner and get dessert tonight!

Wednesday, February 15, 2012

Valentine's day

Yesterday was very nice but tiring. Jeff is in a wonderful workout mode. However, this means many early mornings. I'm not a good sleeper so when Jeff gets up, I usually am awake as well and can't go back to sleep.

So the alarm went off around 3:30am because he had to work at 5:30am. He wished me a Happy Valentine's Day. I tried my best to fall asleep but I couldn't. I tossed and turned. Jeff came back, got ready for work and left. I played on my phone and tried to will myself to sleep. Didn't happen. I heard Laura wake up at 6:30 but she went to the bathroom and back to bed.

Finally we all got up and Laura dressed cute for valentines day. Her class had a party and she was so excited. After Donna and I dropped her off, we stopped at Dunkin donuts then home.

As I was writing, the door bell rang and it was flowers, a vase, and chocolate. It was from Jeff. They were beautiful tulips and still budding. The colors are red, pink and white. He said that he didn't want ordinary flowers but something special.

After I picked up Laura, we came home and we read her class Valentines. She liked seeing the different cards and candy. We had lunch, read books and then started to get ready.

I bought a Groupon for $16 at picture people and it was about to expire. So when Jeff came home from work, we got all dressed up and left. Donna curled my hair. Laura and I wore red sweater dresses and Jeff wore a red sweater. We looked good, I admit.

I gave Jeff and Laura their gifts. I got Jeff 2 pairs of gym shorts, a few funny boxers and a lion. I got Laura odds and ends at the dollar store (mainly art supplies.) They both liked it.

Laura and Jeff weren't thrilled about going to get picturesbut did it for me. I hate getting my picture taken because cerebral palsy makes me smile weird when I try to smile. We did end up with a decent family picture though.

With the Groupon, you could only pick one pose so Jeff bought one of Laura by herself.

I ordered take out from Bob Evans and we had turkey, stuffing, corn and rolls. Jeff and I were so tired that we were laughing at everything! Laura thought we were crazy. Overall, it was a great day. I

Monday, February 13, 2012

Getting my iPhone 4S

When coming back from dancing on Friday night, we found our ramp was snow covered. We recently learned that a concrete ramp would be better than wood because it is less slippery. As Jeff helped push me up the ramp, my iPhone 3G jumped off my lap without me knowing.

After I got in, I realized I was missing my phone. Jeff went back outside and found it but it was missing part of the case. We just figured that we would get a new case at the mall the next day.

Well to make a long story short, the on/off button had broke. So I decided to upgrade my phone since it was due anyway. I was saving for the iPhone 5 but I needed a phone anyway and mine was slowing down.

So we went to the AT&T store and the clerk said all he had was the white one. Excitedly, I said yes because I wanted a white one anyway. I like how fast it is. I got the 16gig over the 32 but I really do not need all my music on it.

I mainly use my iPhone to text, call, blog, banking, control my lights, control the tv and stereo. I play some games as well.

My upgrade now isn't for another two years, but I think this will suit me just fine. I'm sure that I'll feel jealous when Jeff gets the iPhone 5, but there will be more important things to worry about!

Until my next phone, I'm happy with what I have.

Sunday, February 12, 2012

Lima Bean Riot

On Friday night, Laura was invited over my sisters house. Jeff noticed earlier during the week that Lima Bean Riot was playing at a place called Molly Macguires in Phoenixville Friday night. We immediately perked up.

When Jeff and I were dating, we often went to a place called Maddie's in Frazer. It was a big place for bands to play and people to dance. We had lots of fun and I came out of my shell there, so to speak.

Dancing in a wheelchair can be intimidating, scary and smelly. Intimidating because your sitting while everyone else is jumping all around you. Scary because when people are drunk, they tend to act different and get overexcited to see someone in a wheelchair. Smelly because your level with armpit and sweat odor.

Anyway, we enjoyed dancing and having fun to many bands. One band, in particular, I really liked. Lima Bean Riot! In fact, they played the same night that Jeff and I became engaged. Maddie's closed and Lima Bean Riot split or changed.

On Friday night,they were playing but they were a completely different set of people. They did a great job, and kept the energy alive. We danced a lot and I danced with others.

By the middle though, things started to get a bit crazy. People were jumping around and being less careful of my chair. Jeff was great! He made himself a barrier between me and everyone else so no one fell on me. When I felt nervous, I just looked in his eyes or grabbed his arm and I felt instantly relaxed.

We stayed the entire time. As we walked to the van, it was gently snowing which made it all the more romantic!

Thursday, February 9, 2012

Study shows that Mom's love improves your brain

A study came out that the more love a child gets from their mother, the bigger the hippocampus. This will lead to better memory, literacy skills and being able to deal with life problems. This is the first study to show directly the brain benefits of maternal love.

I tell Laura that I love her about 30 times a day. I also show her by helping her and spending time with her. I want us to have good communication so I can help her on life's journey. So, turn on your mommy love to your kids and watch their brain development soar.

Wednesday, February 8, 2012

Accessible pool and spa requirements

Pools, Wading Pools and Spas

The 2010 Standards establish minimum accessibility requirements for swimming pools, wading pools, and spas that are intended to ensure a general level of usability of these elements by individuals with disabilities.

By March 15, 2012, most owners and operators will have to retrofit existing pools and spas with a pool lift or some other means of accessible entry unless it is not readily achievable for
them to do so.

The 2010 Standards contain several requirements for pool lifts, including seat height and width; a footrest and armrest; independent operation; controls and operating mechanisms; and lifting capacity.
The detailed technical requirements for pool lifts are set forth in Section 1009 of the 2010 Standards (

Not hives - allergic reaction

So the doctor said that Laura had an allergic reaction to the cold medicine. I usually give her triamenic but the store was out. I bought Kid Eze and she seemed ok, but broke out in a reaction. The doctor said just to give her Benadryl and let her relax. She has been watching TV and resting most of the day.

Hives break out

Laura has hives on her body again. This time I'm not panicking that it's a food allergy. Last time she had hives, I thought she was allergic to peanuts because she broke out the same day she ate a peanut butter and jelly sandwich. It turned out that she had an ear infection and that is how her body reacts.

She started a cold on Saturday. I kept her home on Monday because she was coughing/sneezing. I sent her in on Tuesday because she seemed better with cold medicine and begged me because it was her show and tell/snack day.

Yesterday morning she had a little blotchiness under her right eye. It looked like she was rubbed it too hard. All day it was there but faded in and it didn't look like much to worry about.

This morning when she woke, her eye looked nearly black and blue. It is red and puffy around her eye and some red dots on her nose. She also said she was itchy. I kept her home and set a doctor appointment at 10:45. We will see.

Monday, February 6, 2012

Crazy CP

Cerebral palsy can drive me nuts! There are days when I could go to the store and trade my body for a new one. I don't like when my muscles go crazy and I feel possessed. Hormones and sickness do not help either. When I get sick or hormonal changes, my CP goes haywire.

The last week I've been having a rough time. My brain is sending crazy messages to my body. The worst is when I go to bed and get into a good sleep and my body jerks me awake! I feel like its fighting against me and wants me sleep deprived. 

I also hate when Jeff tries to cuddle and my body tries to wiggle out of it. The more I fight against it the more it moves.  He understands but I feel as I just did a work out just to cuddle or hold hands. 

I love my life though even if it's difficult. I've been going to therapy for seven sessions now to help the pain in my back and legs. I think it helps. 

It makes me sad sometimes when I think about never being able to drive Laura by myself somewhere, cook Jeff a romantic dinner and other things by myself. For some reason, these things bother me more as I age. I think I'd be used to it by now. 

I won't let things keep me down though and strive to make the most of everyday. 

How society views people who have cerebral palsy

Have you ever had a day when you forget that you have cerebral palsy? You simply wake up, do your normal routine and don't even think ab...