Lily Update.

Too excited about the first day of school to look at the camera for Mom.

She LOVES school, her teachers are so impressed with how well she is doing. We will see if that changes once she gets more comfortable and puts up her attitude like she did for her teacher last year. ;) but her daily report book states everyday she is doing very well and her teacher said she is so glad to have Lily in her class, as she would be a big help to others because of her "advanced level" 

The Feldenkrais is my saving grace at the moment. Still after almost 5 months of weekly visits, she still manages to learn, say, or do new things that she has never done before. I'm am so grateful to have found Carol and all she does to teach me and Lily. Without the improvements through this therapy, I honestly don't know how I would handle all the "bad" news and no answers medical testing has given us this year.

This last week, we finally had our appointment for seeing a pediatric geneticist. It was a very long wait, we made our appointment back in April.  Apparently, the Genetics department at Primary Children's is the only one in this region. (that's what the receptionist told me when I asked how come so long!)  He was great, it started out as a normal visit in all that we have already done with seeing doctors about her cognitive delay. He didn't see any clues there in relation to her behavior and past testing results. So he then looked at physical traits for clues, feet, hands, hair patterns (the amount of hair on her arms and legs) forehead, eye, ears and what-not. It was really neat to watch him, as you could tell he was very intent on his speciality and really was fascinated with the mystery of it all. He was excited about it and I like when professionals have a passion for what they do, it made the visit a whole heck of a lot easier to handle.

After that, he told me there are a few traits to her physical appearance, that could possibly be parts of some syndromes. But there was not enough in other areas to make a match to for sure say she has this or that just by looking at her. For example her extra hair on her arms back and legs were a clue to one syndrome, but she was missing the other traits to for sure identify it. Plus she is such a skinny girl, even with her eating normally for her age, and me power packing her calorie wise still. So no wonder her body produces extra hair. He then told me he just felt there were not enough clues in ANY category on physical traits to even make chromosome testing even worth it. (this I'm glad of, as testing can; according to other special needs Mom's I've talked to. Run 4-7 thousand dollars!!!) The most he could do testing wise is a blood test that would only have a 10% chance of providing us with answers. 

Ugh. After hundreds of dollars spent trying to find out what is causing her delay. No Answers!! After that news, all I could think of was two things: One thank goodness for Carol and Feldenkrais, and two: What now???

The Geneticist said to bring her back in, in two years for both Neurology and Genetics as new testing methods would of been developed then and new syndromes could of been identified. This whole games sucks, I almost feel like I shouldn't even bother because the Feldenkrais is working so well. But on the other hand, I want to know why. I cant' stand not knowing why in any situation.

Next we are going to look more into "hippie" methods, body testing, new diets and supplements. I'm going to look into biofeedback. I've been hearing a lot about that in relation to special needs children. I think at this point all I can do is to focus on what I can do to help keep on a path of rapid improvement. Doing what ever it takes to help her improve. 

As I said before, Feldenkrais really has made a difference for me and how I am handling the situation. I don't know how I would take all this "bad" news of not getting any answers, if I didn't see her improve so fast. I was watching videos of her over the last year and to hear and see her understanding is so entirely different. I don't remember that kid who couldn't talk and it was just babble. 

I'm still so grateful she is in my life and she has taught me so much. I hope soon she will be able to fully understand how much I love her. 

Ethan at 2 & 3 months.

How adorable is this photo?? This was taken at 2 months and now at 3 he still looks the same, but older and bigger. A lot bigger. The "little" guy weighed in at 14.8lbs and grew 4" since his birth. The nurse had to double check the stats! Compared to Lily he is SO big, he is basically the same size Lily was at 6 months! It's so strange to me after my little skinny  mini girl. He's still wearing 3 month bottoms for clothing, but thanks to his length he wears 6 mo. onesies and rompers. 

This cute photo session was done by D'Arcy Benincosa. I love love love the way she captures the expressions on the people she photographed. There is so much feeling and personality to them, her photography doesn't feel posed. Take a minute to read her about me segment on her website. I love how she talks about her experience people watching. (one of my favorite things to do at fashion events:) I think this is one of her greatest strengths in her work as a photographer and I can't wait to see the rest of the images!!! (the above was a sneak peek of our session) 

Back to the kids!:

Ethan has been smiling and laughing at us for the last month. Lately his smile and laugh is getting louder and he is more attentive to things around him. He is right on que for development, although I'm concerned his tracking with his eyes is behind. It is so hard not to freak out about little delays after having a child like Lily first. He does track, but Lily was so attentive to sound and movement that this was very highly functioning skill for her very early. Ethan is a studier, he really focuses on a pattern or object and just STARES. He response to faces, our voices, he even sticks his tongue out for us when we do it! So I'm sure it's just me having to get used to another child and to figure out how he learns and takes in the world. All I have know for the last almost 5 years is Lily and I'm finding it's been kinda odd for me and sometimes hard to figure out a new baby and personality. 

Honestly, this kid is so darn easy and I have been able to return to my sewing and life in fashion much faster than expected! I'm thrilled to be back in the game of dress making, clients and fashion shows.  I have to say though nothing, absolutely nothing tops waking up after a fantastic runway show next to my beautiful babies. I really do have the best of both worlds. Finding a way to equally balance them is another story. But I am working on it. 

Ethan is a cat napper for naps (boo) and self regulated himself in the text book cycles of eat, play, sleep. Best of all the boy already self soothes and puts himself to sleep. I still have a hard time believing it. I would have to rock Lily for ages to just one hour of sleep, I was a zombie with her for months before I felt human again. Every night after feeding him, I climb back in bed and thank Heavenly Father for his easy temperament. I love knowing Heavenly Father knows us so well, that he blesses us with the children we need in our life.

He is getting so strong. He always wants to stand and be held in a sitting position, at two months he was pretty already holding his head up all the time and now at 3 he can be in baby carrier forward facing because he has gotten so strong. He also tries to sit up and strains his neck up, he is discovering his hands and loves to suck on them. He favors his left side when laying on his back, which makes Mom freak out in fear of flat spots and I've booked him with our feldenkrais therapist to help get balance restored. He has lost all his baby hair and has fine fuzz starting to grow in, the Dr. thinks he will be a blond curly haired boy. Something I am totally fine with, I know it's not in my gene power, but someday I hope to have a curly haired kiddo! He's almost got sleeping through the night figured out, he's in that transition period where is it becoming more common than not. Even though he knocks him self out after a night feeding, this mama will be grateful for more uninterrupted sleep.

Lily:
Is still doing unbelievably well. In combination with school starting and the feldenkrais, she still continues to defy all my doubts and proves to me on a weekly and daily basis the therapy IS working.  This week I am eternally grateful to Carol deciding to accept children into her life as a therapist. She works so well with Lily and has made a huge difference in our life and our care for Lily. This week I can't get over how clear and definite her words are sounding. She is speaking in multiple sentences and gets concepts she didn't before. Like when things break: "buy a new one" or "daddy fix?" or her cousin gave her a pair of Keen shoes she out grew and the first day I put them on her (and with out telling her so) she said "like daddy's?" knowing Dad had a pair too. She is starting to play better with friends, even when those who are on level with their age still sometimes have a problem understanding her and can get kinda mean. But she is doing so good to interact with them properly! Along with this new found growth comes the "tude". She is starting to sass me, by blowing raspberries or spiting when she dosent' want to do something. it's usually followed by a big fat "NO!" as well. I'm grateful for her new found independence, but it also terrifies me as she can now open doors and things that I've never had to worry about before.

I am truly so blessed with all the Lord has given my little family and these last two week in between fashion week for Utah and coming to home after that high to my kids. I honestly can say I am starting to live my dream life and I love it.