Saturday, June 18, 2011

Lilly's Story

So Lilly is our vibrant, silly, youngest daughter. She's the youngest of 3 girls, and most of the time acts like she runs the show. Usually she does... Oh did I mention she's almost 3 years old?

When Lilly was born, it was different because during birthing her nose and sinuses were swollen shut from the pressures of birthing. We had all the rush of specialty doctors and nurses from the NICU rush in and only got to see her for a few seconds. They originally thought that her sinus cavities did not properly grow, allowing air to flow properly. Thankfully, they were wrong and she only had to spend a few days in NICU while she gained weight and the swelling went down.

She then came home and as the months came along, I noticed that she sounded congested. So I brought her to the Ped, and she just advised me to do the regular steaming and run the humidifier. I continued to do this, and after 3 more visits over the course of 4 months. I had become fed up, and told the Ped that although I love her as a doctor, I was getting tired of seeing her, and Lilly wasn't getting better. She then referred me to a Pulmonary doctor that had looked over her in the NICU and we went to see him. That feeling that a Mother gets in their gut that something is just not right, and even after dismissing yourself more and more, and it's still there, you learn to just start listening to yourself.

Going to the Pulmonologist, we then found out that Lilly has an aortic arch. Most kids who have this have a Double Aortic Arch. Lilly skated away with just one. Basically Lilly's Aortic Valve grew naturally connected by tissue, against her Trachea. So instead of her Trachea having a natural round shape, its compressed a little and looks more oval. This causes her when she coughs to sound like she has croup, and although it might be a normal cough for you and I it's just one of those things where I take the dirty looks from parents who think she is really sick with a cold or virus, and chalk it up to them being judgemental.

Since we found this out around 6 or 7months of age, we thought that was going to be the extent of her problems. No biggie right? I mean this is a pretty big thing for your child to have out of the blue. Then she continued to grow, the cough still sounded bad, but her breathing didn't sound like she was sick and we continued to get the "She's doing great" Check ups.

Once she hit about 1 and 1/2 years old or so I noticed she did a lot of standing and rocking back and forth. She also did this thing with her hands when she got excited about something. Instead of clapping when excited for something, she would open and close her hands very quickly and repetitively along with making a face, like she wasn't really in control of how she was feeling.
I, at first, just chalked it up to her having her own quirky response. Every kid is different. But then by two it wasn't changing at all, some of her words were once there, it regressed to nothing. I started to use ASL with her, and finally had felt like, " Phew! I can finally communicate with her!" She didn't want to be affectionate, and I felt she didn't like it when we held her or showed her affection. Pushing us away when we did hug her. We did have her on a pacifier and thought that once she hit 2 like her sisters, I would ween her off of it. I then noticed that when she did have it taken away, she asked for it once. Then started to soothe herself with a tag on her blanket. She would use it to put it right to her nose, face, and through her fingers.

I got worried. I started to look at information regarding Autism. She had some signs, but not many. But, I did bring it up to my daughters Ped. and she said that if I was worried, to just have Early Intervention to come and do an evaluation. I told her I would take the referral but thought, "Eh.. maybe I'll just wait it out, maybe it's just a phase." So I waited, and while I waited I had a friend on Twitter, ( @johncaveosborne and you can also find his blog here .) Mention a documentary about a little boy named Graham. It's called "Autistic-Like Graham's Story" It was done by his parents, The Linthorst's and it opened my eyes to SPD.

Ha! Are ya still with me?! Let's hope so.

Now after watching the documentary about Graham. It was it all clicked, and if God was smacking me upside the head, I was feeling it now. I then, shared this with my Husband and we thought it would be a good idea to have the Ped see her again for this. Now, you might noticed that I didn't really mention my husband before. That's because I was keeping all my worries to myself. Until I saw this documentary. I had proof to show him and it changed his mind. So I took her in and explained why I hadn't seen early intervention sooner, ( Oh so you know the reason was just Denial..) and she suggested that since things weren't changing that maybe I also see an Occupational Therapist in addition to having Early Intervention coming to our house for evaluation.

We had Early Intervention come into our home. For Lilly, home is her safest area. She has the least reactions here. Early Intervention concluded that she wasn't "Failing Enough", and developmentally she was right on track with her age group. Well of course, I was upset.. they weren't there for the SPD, they were there for her developmental state. Frustrated, I then took her to the OT. for the evaluation there. Being in a doctor's office environment, is the biggest trigger she has. We can be in the lobby sitting and the "Go homes!" start. Once we go through the door to the office.. it's meltdown mania. She did okay at first, then after we did the evaluation in the smaller room, and she had toys in front of her, she was getting anxious. We talked, and then let her out into the larger room with lots of interactive toys, and as she was running around checking everything out. The only thing is the OT was watching Motor Skills, and I was watching my kid play. The OT said that she thought that she was a qualifying child for therapy, and we've been slowly going each week, and she has started to respond to her therapist pretty good. A few meltdowns, and crying for Mommy, which I'll admit crushes me when I hear it, I know she just had to learn to cope which is what they are helping her do.

You have no idea how incredible it felt for them to validate what I was seeing. I felt like shouting FINALLY!!!! I was so happy, and it was less stressful knowing that Lilly was going to be okay. Now we are working to get her into preschool and potty training. That will be her next challenge. Now that we know what we are working with, we are okay with it. :)

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