Lexi and Mikey

Alexis loves her siblings. Here is a moment with Mikey before Halloween.

Music

Alexis loves music. Her favorite soundtrack is Disney's Cinderella. We always get the play by play on what part of the movie the music is playing. It always makes her giggle. Music brings her great joy. Most times music will bring peace into our home. I have found that when I play quiet peaceful music, Alexis becomes more calm.

A lot has happened since my last post. Alexis has started school in a new classroom with a new teacher. So far so good. We have been meeting with Family and Children Services to see what resources are available to Alexis. We have had a prescription written for Alexis' overnight incontinence needs. We have yet to receive them.

Alexis has a new brother. He was born on September 2. See our family blog for details. She loves him very much and is very helpful. She is still very hands on with her younger sister. Too hands on. We are working on ways to keep her from hitting and pushing her around. There is a ten year difference between the two. So there is a huge size and strength difference as well. So far we have asked her to ask us for help when her sister is doing something she doesn't like. It has worked for the most part. I have found that when Alexis is frustrated with a situation I need to give her a way to communicate and it works out.

Alexis is continuing her outside Physical and Speech Therapy and Horse riding. We are so grateful to Lexi's Grandmother for all of her help in getting Alexis to those appointments. It would be very difficult for me to do with Lexi's younger siblings in tow.

Yesterday was a difficult day. I don't think that the heat and humidity helped at all. At speech Alexis was not following directions, at home she wasn't following directions and she was very emotional all day. Especially at dinner when all she wanted was mac & cheese. She just cried and cried and cried.

Her behaviors made me reflect later in the day on how that was the way she behaved when she was smaller and younger. She has always been stubborn and we have always pushed her. It has just been getting harder to push her because she is getting bigger and heavier. If we hadn't pushed her through out the years, she would not be where she is today. So we will continue to push and she will continue to push back. That is just how it is going to be.

Struggling

I don't know what has happened but Alexis seems to not want to follow directions. This is something we have struggled with since the beginning of last school year. It has just really tried my patience this summer. I don't know if is her acting like a normal child her age, hormones, or she is just being difficult.

She also only seems to respond to one volume which is my loudest volume. I have been working a lot on parenting like Christ would. I don't feel like I can accomplish that when I am yelling. Ugh. I hope she knows how much I really do love her.

1p36 Conference

I am so grateful for the opportunity that my family had to go to the conference in Indianapolis this year. We found out about it about a week or so before it was held. I had to get my doctor's permission to go because I am due at the end of this month. I am so glad we got to go.

It was great meeting and seeing the other families and children. It was great to feel apart of a community that knew what your trials were like. I was concerned that our family wouldn't have a lot to offer because Alexis' complications don't seem that severe however, that is not the case. What I learned is that we can all benefit from each other no matter what.

Thank you to those who put their time and effort into planning this conference. I hope to be able to attend every year.

Summer So Far

Alexis has had a pretty fun summer so far with trips to the zoo, library and family vacations. Here are a few photos.
In Intercourse, PA
In Philadelphia, PA talking to Thomas Jefferson asking him to make the clock chime again.At a Primary Activity - my cookie monsters

The last one is of Alexis entertaining herself while in time out.

Inspiration

I have been feeling for awhile that I should create some kind of outlet for me as a mother to express my joys and frustrations in raising a child with a chromosome deletion. I have also felt a desire to connect with other parents who may be going through the same trials I have been going through. What I have come to realize is that I may be able to help other parents because in my search I have found that Alexis is one of the older children with the 1p36 deletion. I pray that my family's experiences can be a comfort for others.