1 in 40 People Unknowingly Carry The Gene For SMA

1 in 40 people unknowingly carry the gene for SMA.  ONE IN FORTY!  Ryan and I both carry the gene for SMA.  We did not know that we carried the gene until Scarlett was diagnosed with SMA.  We were tested shortly after her diagnosis with a simple blood test that confirmed that we were carriers.  When two people carry the gene for SMA there are 3 possible outcomes. 25 % chance that the baby will be SMA free.  50% chance that the baby will be a carrier.  25% chance that the baby will have SMA. 

Recent pics from my phone

Pretty in yellow.

Fun hair puffs.

Deer at our new house.

Bailey is trying to snuggle with Scarlett. She doesn't seem interested.

Hot pink nightgown from Grandma Liz.

Bedtime stories.

Being a girly-girl.

She is so long!

Matching nails.

Great eye contact.

Watching a movie.

Mom and Scarlett.

Busy...Busy...Busy...

I'm sorry I haven't made a lot of posts over the past month. I've been busy...busy...busy... This is what I've been up to: - Scarlett has C-diff again so we started her on a 6 week course of antibiotics. The antibiotics are helping her. We have an appointment with her gastroenterologist next month so I hope to come up with new treatment options. I want to get rid of this c-diff for good because it only causes Scarlett a lot of pain. - Scarlett's allergies have been bothering her big time! She has had a couple of breathing episodes that have caused her to literally turn blue on us. I am doing more respiratory treatments (sometimes every two hours) to help with her symptoms. We have an appointment with her pulmonologist and allergist next month to discuss ways to better manage her symptoms. - We are modifying her current wheelchair so that it can hold more of her heavy medical equipment. We would like to go to the zoo, the park and maybe out to lunch with Scarlett during the summer months. In order for us to be that mobile with her, we need her wheelchair to hold all of her equipment. I will post some pictures of her wheelchair once I'm done. I'm guessing it will probably weigh close to 100 lbs once everything is on it. - We just finished all of the remodeling in our house (let's just say remodeling a house for a special needs child is very stressful because there is a lot to do and think about). Now it's time for us to move in permanently. Ryan has been living there while working on the house. It stresses me out just thinking about all the stuff that we have to find places for. Scarlett not only has a huge wardrobe but she has a lot of medical equipment (ventilators, hospital bed, oxygen, feeding pump, special chairs and standers) and medical supplies. We hope to be fully moved in within the next week or so. Hooray! I will post some pictures of that too with some of the things we have done to the house for Scarlett. I know Daddy is super excited to have all of us under one roof again. - I scheduled SIX follow up physician appointments at Cincinnati Children's Hospital for May. Let's just say May is going to be a busy month for us. I plan on taking things one day at a time. - Next weekend we have the FSMA Walk-n-Roll and a party for my parents 50th wedding anniversary. Did I mention that May is going to be a busy month? Ha! - I also met with our school district and we are going to enroll Scarlett in preschool. Yes... PRESCHOOL! How cool is that? We are going to have a teacher come out to the house to help educate Scarlett. We are starting to work on her IEP so if anyone has some good suggestions please let me know. I am so excited for Scarlett. She is really into books, colors, letters and numbers so this is the perfect time. - I need to start planning Scarlett's birthday. My little girl is going to be turning T.H.R.E.E. in June. I didn't think I would ever see that day. I didn't think she would even celebrate her 1st birthday and here I am planning her 3rd. I need to put my thinking cap on so it can be extra special for Scarlett. I hope everyone has a wonderful Sunday! Hugs from Scarlett & her mommy.

All Clean

Scarlett always looks so cute right after a bath. I can't believe how long her hair is getting.

This is what her hair looked like after it air dried. Look at those curls!

Playing on her I Pad

Here are some recent pictures of Scarlett playing on her I Pad. We are currently using the I Pad to show her cause and effect. She really seems to be enjoying herself! Scarlett is using arm slings that are attached to an activity arch that allows her to slightly move her arm. I put a wrist splint on her wrist to provide support. I also attached a highly sensitive stylist to her index finger. The I Pad detects the stylist much better than her finger. I am looking for I Pad Apps that Scarlett might enjoy so if you have any recommendations please let me know.

Loving my baby girl

Bunny

Scarlett got the best surprise from Grandma Liz and Grandpa John. They MADE her a bunny. Isn't it so awesome? Scarlett loves it!



Happy Easter!

Looking so grown up

Poor Bailey

Bailey injured his ear and it's infected. He's on antibiotics and has to wear a cone. Poor kitty. He looks miserable. I hope Scarlett's BFF starts to feel better soon. She misses his company.