Summer Update

I even got a grin!
Hi! I'm paying closer attention to what people around me are doing.
Alayna giggling back at me!
Sometimes she still sits in the swing and here she fell asleep like this....precious.

Summer School

Alayna qualified for ESY (Extended School Year) based on her IEP goals and end of the year evaluations. The staff felt that Alayna doesn't transition from breaks very well (I agree) and going to school an additional 4 weeks was probably best for her. She attended from 8:45-11:45 am up until July 2nd. Unfortunately, Alayna was fussy and crabby quite a few of the days. Like I said before, change for Alayna is not a good thing. Alayna had a different summer school teacher than her usual Ms. Renee and the program changed to a different location. So, a new school and a new teacher threw her for a loop! Thankfully though they have a nurse who would walk her up and down the hallways in her kidkart and that was the best way to calm her down and give her a break. Right now I think she is enjoying mommy time and being a home everyday. She has 2 weeks left of her little summer vacation and goes back on August 5th. It's going to be an adjustment all over again and take some time to get her back on the preschool schedule. She is loving her afternoon naps that range from 1-2 hours. She doesn't get that long of a nap time at school. A rest time is allowed though. I love being at home with her too, so we will try to enjoy our last few weeks together.

Developemental Pediatrician Update

Just yesterday, Alayna and I traveled to Peoria to visit Dr. Morgan, her developmental pediatrician. We hadn't seen him in quite some time due to scheduling conflicts, school, and then the bad snow storms in January. I'll be honest and say that I'm feeling a bit guilty. Alayna is having issues with her muscles in her feet and legs. They are extremely tight, therefore not allowing her to fit into her AFO's properly. She lacks full range of motion in her ankles, her flection is limited, and her feet seemed to be always pointed downward and inward. Her hamstrings are also very tight, limiting her leg to not full extension. Dr. Morgan recommends serial casting for her ankles. They will put her ankle in a good position, cast it, wait a couple of weeks, take it off, and then re-position it and cast it again. This process will be repeated until we see signs of progress and the muscle is stretched to an appropriate position. All I can say is, ugh. Alayna has seemed to get tighter as she has gotten older. We aren't sure why or what may have caused this. I've been told by a few other 1p36 parents that their child also has muscular issues/tightening. So, in the meantime we will continue to do stretches and wait until we hear from Dr. Morgan. The bad part is that we are unsure if anyone in the area does serial casting. Oh, and for her hamstrings we will be having Alayna wear a knee immobilizer on one leg at night, alternating legs so that hopefully it won't disrupt her sleep.

With each one of these developmental visits, my skin gets tougher. The first few were tough and by the time I would be in the van I'd be in tears. I was proud of myself for holding it together. At one point I felt my throat getting a huge knot in it, but I held it back. Regardless of development, Alayna is my daughter. I love her unconditionally no matter what. Of course I want her to walk and talk and do lots of things. But if some of them never happen it will be okay. It has to be.

Salt Lake City, UT - 1p36 DSA Conference

We are headed to the conference in a week! I'm excited to see familiar faces and meet lots of new people and kids. 1p36 DSA stands for Deletion Support & Awareness. We are now a non-profit organization working to educate and provide assistance and support to other families. We want to make this syndrome known to the world. This support group is my other family. They walk the walk right along with me. They understand my feelings because they too live them everyday. I don't want to think about what this journey would be like without them. The Hanson family from Utah is hosting this years conference and along with the help of many other group members it is going to be a great one. The agenda looks amazing and Dr. Shaffer from Signature Genomics will be speaking again. She is the doctor who has diagnosed all of the kids. I'm honestly looking forward to the Mom's night out to Biaggi's on Friday night! I'll post pictures when I get back and fill you all in with the information we obtain. Can't wait!!

My thoughts

Circumstances this summer have brought certain things to the forefront of my mind. I feel it necessary to post my thoughts on them. Dana and my children are my rocks. They validate my purpose and keep me going each and every day.

Special needs children make special families. What I'd like everyone to know is that we are not a "typical family." The atmosphere many days in our home is not of a "typical family." Sacrifice comes with raising Alayna, not only from Dana and I but from our other three children. That is the way our family has to roll now. Yes, sometimes making the sacrifice hurts our hearts and makes us resentful. But that feeling passes and we know they are made out of love for Alayna. The decisions we make in our family are not always easy, but they are made for the best interest of everyone involved. Most special needs children, like Alayna, are most comfortable in their own little world. In our case, she is most thrilled to be at home. Taking her out of the home can become a challenge. Alayna is all about familiar faces and familiar places. She could care less to ever step foot in Walmart, the mall, or a restaurant. And we accept that completely. For us, going into "Alayna's world" is peaceful. And it works. For Alayna to come into "our world" it gets down right ugly. For this reason, at this time I will never force Alayna to go somewhere or do something that I want to do and she doesn't. It truly isn't fair to her. Special needs go with special accommodations. And our special little girl deserves a special kind of love.

Three years ago, I wanted the doctors to hand me this perfect, healthy little baby girl. The kind every mother dreams about. The one I had dreamed to run along side of her big sister Alexis, the one I had dreamed would crawl all over this house and annoy her older brothers, the one I had dreamed would call me mommy by age 1, the one I dreamed would mess with her sibling toys, the one who would marry and walk down the aisle, and the list of dreams goes on and on like any other parent anticipating a baby. I didn't get exactly that and those dreams all died and new ones have been made in their place. That is the toughest challenge, to let those dreams go. And with all the doctor appointments and visits to the developmental pediatrician, each time it becomes more and more of a reality. However, not a day goes by that I don't wonder what Alayna would've been like with that extra piece of missing chromosome put back on. I still bobble between the anger and acceptance stages of the grieving cycle. I think this is completely normal and anticipate this may be the case for a long time.

Alayna brings on great challenges to me mentally, physically, and spiritually. She is a blessing that I may continue to look deeply at in order to find God once again. He lives through her and it is a challenge for me to see that every single day. I also realize that with Alayna comes the duty of taking care of her for the rest of her life. As a mother, I will do that proudly for her (and my other three children). In my book, parenting doesn't end with an age....it never ends. We realized this early on in Alayna's life and we accept the challenge. We don't want anyone's pity. It is a privilege to be "chosen" parents of Alayna and we will keep our heads held high even when the storm gets rough. It is a rewarding experience and I have to continually remind myself of that. The positives do outweigh the negatives. The good days outnumber the bad days. I'm not going to lie and cover up. Somedays, it just sucks. It sucks for her, for us, for her siblings, and for my entire family. I'm allowed to say that. But again, Alayna is MY DAUGHTER. HER AND I HAVE A UNIQUE BOND AND I WILL LOVE HER FOREVER UNCONDITIONALLY.