April 29, 2012

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.

2 comments:

Anonymous said...

I just read a story about another lovely baby diagnosed with SMA Type 1.

Avery also has a blog.

http://averycan.blogspot.com/

Reading your posts are so inspiring and it made me think of your family.

Anonymous said...

when you do the IEP, have it written so that it provides the MOST accomendations, you can always go with less then what it wrote, but much harder to add in or change once its signed. Also put in there that you can modify the IEP at anytime.I say that because an IEP is an annual contract and you might need to make changes or add things on. Get as much as you can covered by the IEP ( speech,OT, PT) that way the school district has to provide that for Scarlett rather then your insurabnce or out of pocket. Best of Wishes !!! I have been following your story since she was about 6 months. Your an amazing family and Im excited to watch her continue to grow up. janine