{previously written}

For a while now my husband and I have discussed the need for a dog ... it was always moved to the "down the road" category due not having a yard/home big enough to include a dog. When the day would come we were both on the same page  that it would be a wonderful addition for T.

The "need" for a dog was based on the fact that T needed a companion, a friend, partner in crime, buddy.. however you want to look at that. She has a twin and an older sister, not to mention two pretty cool parents *wink wink* but it's not the same. Autism can make it difficult for children to connect with other people... twin, older sister,& parents all being people. "Interaction, the giving and receiving of verbal and nonverbal messages, is how people develop their language skills and their ability to understand and relate with others. Children who experience difficulty interacting with people can still partake in this important exchange by interacting with a pet." (source) There are many organizations out there who train dogs specifically for children with autism, that's how awesome the idea behind a companion (or service) dog is.... Just Google "companion dogs autism" and see for yourself.

We weren't interested in getting a service dog, specifically, as we felt if we found the "just right" dog for our family T would still have the same benefits ... At this time we don't need a dog to be able to preform tasks for her or assist with anything other than being her buddy. That being said we were not at all interested in a puppy as we have enough going on then to go through all of that (no judgement please) and the thought of adopting an older dog made us nervous as we had to be REALLY sure the dog would be good with children ... two year old twins kind of children. This didn't leave us with many options so it was okay that we didn't have the space for one at the time.

Well fast forward to now, where we have purchased a house that happens to have a large (fenced) backyard ... the yard was a positive for us to be able to let the girls play outside safely, getting a dog hadn't come to mind yet.

And the stars aligned for us .... Down the road lives a friend who had a 3.5 year old female dog that prefers to be an indoor dog but they wanted her to be an outdoor dog. Fully house trained, hardly barks, great with children as she lived with 3 little ones, well mannered, and not too large. After talking with my friend one evening, learning they were open to finding a new (indoor) home for her, they agreed to let us bring the dog home for a few days to see how our family would do with her and how she would do with our family.


She, being Shy (or Shylee, which is her name but K only calls her Shy and T is working on "Sh" so we're sorta sticking with Shy), was a perfect fit for our family. K&T were loving on her instantly ... T gets down on the floor and nuzzles up to her to "talk", gives her "gentle touches" aka pets her, giggles like a rockstar when Shy and H play fetch... Like Christmas came early here... just magical. I'm sure it won't always be magical every moment of every day, because what is?!, but it's definitely a sign that it was all meant to be! H loves taking her outside on walks and playing with her, too!

We are very thankful to her "other family" for letting her come live with us .... The entire situation means a lot to us and we definitely realize how lucky we got to have such great friends!

I'm very excited to watch the friendship between Shy and T blossom into great things ... T & Shy: Besties ... has a nice ring to it, don'tcha think?!

One year ago my family lost a wonderful man, my grandfather. He was not just special to me, but to everyone in our family, as well as to so many in the community. Not a day goes by that his passing doesn't bring a sting to my nose and tears to my eyes. I miss him dearly, they miss him dearly, we all miss him dearly.

The only way I can think of getting through today is to have a walk down memory lane, in photos, and remember all of the amazing moments that I spent with him, that my children spent with him, that we as a family spent with him.

The year of firsts without him were inexplicably painful, especially since so many wonderful holidays were spent at his house. I don't doubt that the years to come will get easier, in fact a good friend told me it won't get easier but it'll become do-able.

Wow. It's hard to believe that a full year has passed since we got the call. I still remember the call like it was yesterday.



Rewinding a bit.
When the Genetics Clinic received our referral they had a Genetic Counselor call me to basically do a bit of a phone interview. She asked what were the major concerns, basic birth information, and said that they would order three preliminary tests to be completed at the hospital the next time we were there. The wait list to get in to the Genetics Clinic was six to nine months, they would try and get us in sooner depending on results of these tests. The three tests were Fragile X Syndrome, Chromosome Analysis, and Microarray Analysis. After an OT feeding evaluation for T, on April 19th, we went down to the lab and had her blood drawn for these. We then began the waiting game.

11 days later I got "the call". It was the same Genetics Counselor who did the phone interview with me earlier in the month. She started out by saying that she didn't usually make this phone call as they don't usually find anything during these tests but there had been "something" show up on T's. (I personally had pursued genetic testing because I thought she had Mosaic Down Syndrome, which would show up on the Chromosome Analysis.) She then went on to tell me that during the microarray analysis they discovered a deletion on the short arm of Chromosome 16. She told me to get a pen and paper so I could "write this down"... 16p11.2 Microdeletion Syndrome ...as I was writing that I thought to myself, what the heck is that and how the heck am I ever going to remember that?! She told me it was the cause of her macrocephaly, developmental delay, and problems down the road may be Autism Spectrum Disorder and Obesity. She also gave me a website, Unique, where I could get more detailed information. She said that because there were answers she would be able to schedule T an appointment in the Genetics Clinic sooner than the six to nine month wait we had previously discussed. T's appointment would be scheduled for the day following her first birthday, June 28th, so the wait was only approximately 3 months total-not too bad.

At the end of the phone call I thanked her. There was a pause on her end and she replied "I've never had a parent thank me before for delivering news like this". For nine months I had been ignored, told I was just comparing, told that she was just Baby B, told that she was just premature.... Basically I had been told that I was wrong every which way you want to tell someone they are wrong, when I wasn't. I knew something wasn't wrong, but something wasn't right and until she called with those answers I had nothing to back myself up. Now I did, I had answers, scientific answers. I was thankful for those answers because it would help me get help for T, help that I knew she needed/would need. She told me she was happy that she could help T the way she did and that was the end of our call.

Present Day.
Here we are, one year later. One year and so much more information later. A support group, a trip to Chicago, to Boston, and soon to be to Florida to learn more. Her diagnoses is still a new one in the medical world so everyone is still learning about it. More specialists have been added to the list to help her along the way-Cardiology, Neurology, Ophthalmology, Developmental Pediatrician, an orthosis, and of course the therapists.

There are still many little things that she deals with on a daily basis that we don't know a lot about, haven't been able to treat but she has made great gains in the last 365 days!

She went from a baby that was unable to move off of her back until she was ten months old to a walking toddler who loves to keep up with her twin! And can climb up things like a pro! Her overall motor skills have made great strides and she continues to grow in fine motor definitely! The biggest areas of concern currently are her expressive/receptive language disorder, GI complications, and her abnormal gait. I'm happy to report that've made progress in two of those three areas. We've begun using picture cards as her form of communication (post to come later on that) and she wears SMOs to help with her gait (post to come later on that too).

She has made me so proud, watching her overcome so much in a years time, all with a smile on her face! T loves life, plain and simple. While my heart aches for her and the challenges she faces she doesn't seem to mind them at all, she doesn't know any different, she is happy and sassy all the same! Proud of her abilities, determination, and personality! Bring on the next 365 days!

16 Months Ago we began a journey .............

K, Day 1

T, Day 1

Today I returned to the lobby of that NICU to meet a mom who's still on her NICU journey with her precious boy born at 23 weeks gestation, a surviving twin... I had paid no attention to what today's date was when I spoke with the mom about meeting up... It was just the next available day for me to step away from the house.... then this morning a dear friend wished the twins a happy 16mo birthday and I got goosebumps thinking about what 16 months ago was. 23 weeks and 33 weeks gestation are worlds apart but starting in the NICU is where no parent wants to be and support is what it's all about! I enjoyed meeting this mom and look forward to expanding our friendship... after RSV season of course! :)

It's been such a ride these last 16 months.... blessings upon blessings and tears upon tears.... Cannot wait to see where we are 16 months from now!

This sums these 16 months up pretty well :)





And here they are now!

T, K