Winter 2012

This cute little guy is 6 months! I can't believe how fast time has gone by. He is eating solids and LOVES everything. He gets really mad when we are eating and he is not. So far he has not come across any kind of food he does not like. Dr. Moskun has also give us the full go ahead to try EVERYTHING. So while Mom is still super nervous about nuts, we have had foods with dairy, egg, Proteins (meats and beans)  

Ethan has also cut his first teeth this week! His two bottom have sprouted. He's a great teether, loves to have things to chew on and is still sleeping rather well for Mom at night, if he's restless a few teething tables do the trick or a quick nursing soother. He has still been waking at 11/12 for feeding, but since it's the holidays and we often don't get to do our bedtime nurse I'm not worried about breaking the habit until after the new year. We just have too much going on to be super strict about it right now.

He is rolling over and rolls to get to places, he also has tried to figure out how to inch worm to get toys, is really good with his hands, has started to feed him self with puffy melt treats and has a funny happy wiggles dance when he sees the food bowls and spoon. 

 Look at those big beautiful blue eyes! I love my baby boy!

 This angel is still my pride and joy. She has come so far this year and my heart is so full every time I hear or see a break through for her. She has taught me the true meaning of joy in being a parent

 See...pure joy..

 She melts my heart. Even on her bad days.

 My lily bug scored extremely well on her testing this school year. Relief for Mom and some very impressed teachers at school have calmed my fears at my most recent meeting before Christmas break.

 I'm so lucky to be married to this man. I hope he knows how much I love him. He was in charge of the Christmas message at his family's party this Christmas Eve and got to see in him one of the reasons I chose him, his love for the gospel. While reading a story about a man giving with out thought to those in need, he was touched and had to pause while reading when overcome with emotion. I love these tender moments in him and each one reminds me how very lucky I am. I hope this next year I will be able to better show him my appreciation to him in all he does for our family.

 My sweet babes, my joy, these angels have given more than I could of ever hoped for.

 I love photographers who have been trained to work in film. There is so much more attention to detail, lighting, poses and elements. They really have put thought and emotion into knowing their element and I think it all comes out a million times better. Not that digital dos'ent have it's own place and wonders. I just find my self appreciating those who've taken time to study proper old school techniques before jumping the digital bandwagon. I'm sorry to sounds bias, but I kinda am ;)

 It wouldn't be a family pic with out Chezabelle!

These wonderful family photos were taken by D'Arcy Benincosa and check out her site, we've done a lot of collaborations this summer with my gowns and a lot of the pics are featured on her site.

This year we purposely kept our Christmas small, not out of lack of budget, but because we don't want Christmas to be about presents. I'm so grateful and my heart is so full this year because we did so. I was more able to realize how much I am already blessed with in what I already have. I was able to focus on giving freely, Christ's love and the reason for the season. I loved the peace and calmness that surrounded our time this December that is wasn't crowded with to-do lists and stressing over presents. I only did one big shopping day and kept things homemade for those outside the family I needed gifts for. I'm grateful for all the blessings this gospel brings me, my family and life. I am so very grateful and my heart is so very full this year. I am excited for the new year, to work on new goals, better my self, testimony and life.

Life is Beautiful!

Fall round up! What we've been up to!

Did some fashion shows! Me and my lovely models at Fashion Night out Sept. 14

 Reunited with the group from high school. It was SO fun to see everyone again!

 Been working hard in Feldenkrais therapy with our wonderful friend Carol. This woman is a miracle worker and I am so honored she has decided to work with us.

 Trying out Momma's swag bag shades from Fashion's Night Out

 Hanging out with Mom while at work at Tissu Fine Fabrics for fittings. I swear smart phones were invented for Moms and to keep their kids busy!

 Celebrated Halloween with my beautiful Cinderella. First time I didn't stay up late to finish it. I had it done early and had to hide it from her so she would't soil it before Halloween.

 Ethan was a sock monkey. With how fast he is growing, I couldn't justify spending a lot of money on him. I saw the cute sweatshirt at Old Navy and since he already had the pants I was sold. And what a cute sock money he is! Everyone loved it!

This cute little man is now 4.5 months old. He weighs 18 lbs, is 27" long (4 lbs & 3" in two months) He is eating rice cereal, loves peaches, bananas, peas and apples. Mom is planning on introducing more foods as he quickly adapts to anything given to him. He loves crackers and tastes of Mom & Dad's foods. He makes the funniest noises, laughs (the hardest at Chez chasing a ball) coos, does happy wiggles (arms and legs kicking and flying a mile a minute) and blows raspberries when he is happy. He's pretty much sleeping through the night, except when he is going through a growth spurt.

This mess maker is doing awesome! Her language is continuing to improve daily and I've really enjoyed the conversations we have had recently. Here are the latest funny Lily sayings.

She can't say "th" sounds so Ethan is pronounced "Ea-an"

When I am gathering up kids, and ready to walk out the door I clap my hands together and say "let's go!" she now claps her hands and says "mom, I ready to go...." and tells me where she wants me to take her.

The neighbor girl is 6 months older than Lily and they enjoy playing together. The other day as we pulled into the driveway she said "Siri my best friend. I want to play" I told her, we'd call her and ask her to come play. She then proceded to shout when she got out of the car "wah-hoo! Siri! come play!" calling her like a dog.

While talking to Ethan the following things are normally said: Ea-on!, hello hello hello hello said in quick secession with a raspy voice, hello big boy, hello little big boy, here Ea-on here and shoves a toy in his face.

While driving in the car the other day we had this conversation.
Lily: Momma?
Me: What?
Lily: I so happy!
Me: You're so happy!?
Lily: mmm hmm, I so happy!

I love it. I love my life!

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. 

Finally! He is here!

A heads up...I love details :D so be prepared for a long post!

Our little man finally decided to make his appearance!

Ethan Jason Rino, born June 19th 6:33am. 8lbs, 3oz and 21" long

He was a week "post due" I kept telling people I was due the second week of June, as I knew he would be late and didn't want to be disappointed when that day came, went and no baby. I'm glad I did so, it really helped when nothing happened that day!

I went in on my post one week mark for a non-stress test to make sure all was well. First they started out by checking my fluids, I knew by watching the nurse  watch the ultra sounds something was up. My amniotic fluids were at a 2; meaning they could only find 2 pockets of fluid surrounding the baby when they should find at least 10. Not good. Plus my placenta was very calcified, along with a low fluid count would mean trouble very soon. In other words, I was having this baby today. No more waiting on his terms.
I kinda panicked. I always wanted to go as natural as possible when it comes to all things pregnancy and delivery. Induced to me meant Pitocyn (sp?? will just refer to it as "pits" here on) and I didn't like that. But since the nurse was so worried, I knew I just needed to do what ever to deliver him safely.

Once we settled in to our room and all got checked in, I got to talk to the on call mid-wife and told her  I'd like to start out breaking my waters first to see if that would start contractions. She agreed as long as I kept progressing with in a certain time. If not, hooked up to the pits it was for me.
We walked a lot to help get things going...I rested and meditated, willing and welcoming happy birthing thoughts. If you know me, you'd know how strong willed I had been to deliver this baby 100% natural as possible. After about 3 hours I was getting restless, I had already waited for this baby an extra week and I was ready to meet him. I told my nurse to start me on the pits with the lowest dose possible, with the outlook of just slowly working our way up.

Let's cut to the chase and we worked our way up for hours. With some contractions that were jacuzzi tub worthy (I spent for ever in the tub, until the water was pretty cold as it felt so good) but after that I was still S...L...O...W...L...Y moving a long, so that the midwife said no more little bit doses. It was time to make things move faster, the last I remember checking my dose level, it was 24. Which I guess is pretty high. Up until then I was able to handle the contractions super well as they had moved to my back, and I deal with a lot of back pain from all my years sewing, that I was so ready to push though the last bit if the contractions stayed in the back.

With in a hour of them bumping my pit higher, my contractions changed fast and hard. I wasn't mentally ready to handle that, even though my energy level was. I held on as long as I could to working through them. The nurse wanted to check to see if I had progressed any since my demeanor changed so quickly from being really talkative to being completely involved in the managing the contractions.

I was at a four. Over 14 hours and I was still at a four. ARRRRRGGGGHHHH. I was DONE and wanted this kid out. I knew that last time with Lily, once by body was super relaxed by an epidural, I progressed super fast and I was ready to give up my attachement to a natural birth, I was ok with it at that point, as I had pushed through 14 hours natural even with the high dose of the pits.

Let me explain why I have always been so adamant about a natural birth. Not only do I think it is empowering event for a woman, but I feel it helps provide better bonding for the mother and child due to all the hormones and adrenaline rushes. I'm not saying that not all women are denied these feelings with having a epidural. I just feel for me, the epidural blocks those emotions, with L I had the epidural in for over 4 hours. When she was born I wanted to let all these feeling and emotions rush out, but felt like I couldn't, I was so numb from it. Of course there is a lot of things to process with a first born and I don't think it was all the epidurals fault. I just really hated how it made me feel. Turns out I'm one of the lucky few who react to the medicine/drug they use. My legs tingle really bad and it hurts to touch them, I got the shakes REALLY bad, I itched like CRAZY, I get really bad body aches from the epidural spot down a week after and breathing became hard for me during labor. Everyone who I have talked to who have had an epidural, didn't have those reactions.
I only had the epidural in this time for less than 2 hours, so I felt better faster and felt more like my self quicker.

Once the meds kicked in the from the epidural and I was more relaxed, so the nurse checked me, both of us were relieved to hear I was at a 9. Then not 10 minutes later she checked me again after asking if I was feeling any pressure. That fast I was ready and at a 10.

Finally, I was going to meet my little guy! When the midwife had me start pushing, he was already starting to crown. Pretty soon after she became concerned and said that I needed to push him out faster. At this point she also gave me a small cut to help get him out faster, once most of his head was out, I could see why. ( I asked for a mirror to watch) The cord was wrapped around his neck and the midwife had to cut it right away. I didn't get to see anything else after that, as I was focusing on getting him all the way out.

They laid him on me for a few minutes, but when his heart rate wasn't up to what is should be they had to take him and call in the NICU to asses him. The cord wrapped around his neck really shocked him, he wasn't crying very much and was still pretty pale. I was pretty panic as they were looking him over, because they weren't saying a lot. I asked a lot if he was going to be okay. Each time they assured me he was going to be and I let  the nurses take this time to measure and weigh him. Finally after all that, I got to hold him longer, he looked a lot like his sister; both had the same nose, but he looked a lot like Jason then too.


After we got to have some time alone, I had to pass him off to Jason as I started feeling really funny, dizzy and faint. Jason took one look at me and said my lips were really blue. We called in the nurse and discovered I was bleeding heavily and having large blood clots. I started to shake again and felt really cold. So lucky me I got to stay downstairs until they could stabilize me, while Jason went up to our recovery room. They were able to get things under control quickly and I was brought upstairs to the recovery room. 


As far as recovery from this birth compared to L's was a major difference. I didn't hurt as much and felt up to doing things afterwards quicker, partially due to having a summer baby, but also due to that he has been such a good baby! He sleeps and eats A LOT (especially now as he is having a growth spurt) and the best best best part is that he goes to sleep quickly after eating! Which means I get back to sleep and even though he is still waking up a lot to eat, I'm getting more sleep than I did with L. Although we did have a little bump in the recovery road when my milk kicked in, I was woozy for a few days, looked really pale and felt awful; due to my body having to produce another liquid along with building up my blood supply again and this last weekend when I had super bad body aches and a temp of 100 for practically the whole weekend. (Got checked out by the midwife, she said it was just some funky viral infection and would go away on it's own) By tuesday, I was feeling 100% better.


After three weeks, I'm feeling much better. But still being really careful about how much I running around I am doing. Especially in this hot weather we are having! I get really tired fast, due to my body still working on that blood supply.

L is adjusting fairly well, we have more good days  than bad, but I know it's been hard for her. I'm doing my best to keep things normal for her and to have her help out with "taking care" of E. It's kinda hard as a Mother to see your older child question (in mine, it's her eyes) why all of a sudden this little thing demands so much of what used to be all mine of Mom's attention. It's kind of guilt trip-ish really, I'm trying everyday to do one special activity with her, to let her know that I'm still her Momma and love her very much.

All in all we are so glad to have our little guy here!!

Words..

Since we have started this new therapy, L has literally exploded with new words and sayings, sentences and funny things.

I remember as kid growing up that is was so funny to hear the things my Mom wrote down that I said. I really enjoyed listening to all the crazy things I came up with.

So I must share (and I might add that I'm so excited I finally get to do this!!!!) some of the funny things she's said in the last two weeks. It maybe just a few, but in our world. It's many....

While in Park City on vacation, her cousin Jaquelyn was fussing about something at dinner one night, when L looked over at her and told her to "calm down"

While getting ready for church a few weeks ago, I was being grumpy about something. Jason asked "who's got the attitude?!" I responded "Not me", but from the other room there was a loud reply of "ME!!"

L has really enjoyed saying the prayer either for dinner or family bedtime prayer. She repeats what we tell her and she gets a lot of the words right and it's so sweet to hear her. But she still stumbles over a lot of the words and resorted to replacing ones she can't say with ones she knows. So her prayers end like this: "Jeana Chri....AMEN!"
She can't do the two "s" sound in Jesus, so she' uses the next J name she knows. Her Aunt Jeana's name.

While out having a Mom and Daughter day (and savoring the last few days with her as an only child) we were out doing some unimportant errands I wanted to have done before the baby came. After our first store, she was very insistant in the back seat saying "More, (mumble) please" It took about three more tries before I figured out she was saying "More stores please!" I laughed and asked her if that's what she wanted, she gave me her big grin and "duh mom" look. This continued after each store we visited that day....

Now the last one, I'm not sure how proud I am about posting. But honestly, it's funny. And I am taking full responsibility for her knowing this word and have been more careful about using it around her. Occasionally we use Damn and Hell in our house, it's never really bothered us and I probably have used it a little too much while in the midst of all the crazy sewing going on this house this last year.
L knows and uses "Damn it" correctly.
yeah I know....
We were at Jason's parents house showing off his new car, when we loaded up L, my self and Jason to let his Dad take it for a test drive. Before the drive Jason had shown his Dad how the middle seats slide to allow more room for stuffing the back. While backing out of the driveway the seats clicked/snapped locked back into place. Upon hearing this, L slapped her leg and exclaimed loudly "oh, Damn it!!!"

It's been so fun to hear her say all these fun things and use her words more and more...

A wonderful miracle....long post

So glad to be posting GOOD, HAPPY, AMAZING AND WONDERFUL NEWS this post.

I've come to accept what life has brought me, at least I think I have fully accepted it. It's something you never want to hear as a parent. "She may have cognitive delays and mental health issues for the rest of her life"

Hearing these words, made something snap inside me, or maybe it's because soon I won't have my full and complete attention to give to her any more. She'll have to learn to share. I did everything I could to find out how we could get insurance to pay for therapies, but unless it was delays in the result of an accident it wasn't going to happen. I don't get that, the government is complaining about spending too much money on supporting adults with special needs; when the majority of these individuals could be helped early on in life by governments improving bills and such to allow funds and monies to be spent in better educating these kids to ensure they can be fully or pretty-much-on-their-own functioning adults.

My L-bug needs the full therapy round up, occupational, speech and physical. And paying individually for each of these through a medical professional is EXPENSIVE and there was NO WAY we could afford it with out insurance helping out. Which of course wouldn't be covered, she wasn't in a accident to cause her delays.

I had to look at alternative methods. We hired Jason's cousin, who is a speech therapist for private lessons. That worked out great, until she needed time off to welcome her third precious girl into the world this last week. Still not enough and since she never regressed in the regular school year; we did not qualify for the summer programs. She didn't either last year and the summer sucked, she really needs the stability of a schedule, like what school gave her.

I felt trapped, ran into dead ends where ever I looked. None of the out side of school district programs made sense for her. I just didn't feel good about any of them. My sister then reminded me of a movement therapy, she had tried and a friend used on their daughter who has Cerebral Palsy. A funky named, hippy dippy, holistic movement therapy called Feldenkrais (pronounced: felden-christ) and in all honesty it sounded nuts. And I am usually so open to new ways of thinking and trying new things, but for the longest time I kept pushing the idea to the back burner. Until I talked to my sister's friend, the one with the daughter mentioned above, I listened to his experience and what it did for his daughter. I was intrigued, but still put it off. Until after hearing those words "life long" and "mental health" I snapped. I called every Feldenkrias practioner in the valley, and talked with each one until I knew I had found the one I wanted to work with.

Our first visit with Carol went really well. Lily responded to her immediately and I was able to witness first hand what Feldenkrais is. At first I wasn't super impressed; I'm paying how much for you to wiggle Lily's legs around and play with her feet!?!?!? It doen't even look like your doing any sort of therapy!

Oh boy was I wrong....

Her first appointment was on a Friday. That whole weekend, I was completely floored and shocked at the sudden and immediate flood of words, finishing of words, 3-4 word sentences and stories of past events she was literally exploding with.  While driving past our library, she very clearly said each syllable. clearly. Li.bra.ry. Even her teachers at church said they noticed a huge difference, she wanted to say the prayer and was telling stories AND they could understand her!!! That was after just ONE session; We've now had a full weeks worth of therapy and wonderful things are still happening. Her words are clearer, longer and longer sentences for her. She is telling more stories about things we've done in the past. Asking for friends to play with and going to specific places. Also her strength in her legs and body is improving, even so she is starting to run and walk more normal! You can see things starting to connect and see how she is processing and taking in the experiences, learning from it. I'm so so so so so relieved and I feel that the only partial diagnosis we got from the neuro-physic is irrelevant to our situation anymore. Yes, I'm still thinking getting a full diagnosis from a neurologist and genetics would be extremely helpful, especially when it comes to making sure she gets what she needs from school. But for now and this summer I couldn't be happier with what we are learning through Feldenkrias. I'm happy to see such crazy fast results.

So I'm starting to think this Feldenkrais thing, is starting to sound like a bunch of hocus pocus. I'm afraid I don't have much to explain, as I am still learning all about it my self. But HERE is the website for the Utah Feldenkrais practitioners, we work with Carol Lessinger. The website explains a little about what the therapy is. I also found it interesting to read about the Dr. who started the method. You can read about him and the method HERE on wikipedia.

Basically, how I explain it is; have you ever heard how many Dr's say to let your baby crawl as long as possible? The motion of the hands and legs having to cross brain waves, triggers new thought patterns and stimulates the brain. Basically that's what the therapy is, moving the body to trigger new thought patterns to awaken areas of the brain needed for improving speech, muscle strength and such.
OR better yet. The book I am reading from one practitioner had a young girl with CP who never realized her legs were two separate body parts. She always moved them as one. This therapist  drew a cat and dog on both of her knees and started to move them around. Seeing the difference, first hand re-wired the signals in this girls brain to awaken and make her brain realize it could move each leg independently. From this point, this girl was able to learn how to walk.

I'm so excited to continue this with Lily. I love that I am able to give her all three types of needed therapy all wrapped up in one and I LOVE LOVE LOVE seeing the results. It has made the price tag worth it. It's expensive at first, as the therapy relays on several weekly sessions to make the needed connections. We will then go down in sessions, once a strong connection has been made. Carol expects this to happen in a month or two. So I'm kinda glad I'll be home bound with our new little guy, less chance of being tempted with out to eat treats and shopping! I keep thinking and reminding me self each $30 I spend on something frivolous is one treatment for Lily.  (Alright, I did go a little crazy shopping in park city, but I got things I'm so excited to wear after the baby comes. If it took me as long as it did to feel good about my self again, body wise after having Lily, a newly stocked wardrobe is for sure a must.)

Life as a pattern

Let's compare life to a sewing pattern, you envision this amazing creation and how it's going to look and feel once you get there. It is so easy to imagine this perfectly "normal" life/pattern. You want to follow that "pattern" with your own imaginative alterations. You have all these wonderful additions and changes you want to make to make it yours.

 Get married...check.
Buy a house...check.
Get a dog, grow a garden, pay off the cars, up-grade the cars, finish school check...check..check..check and check and other half has two and half semesters to go.
 Kids...check and three weeks to double check.

 Have extensive testing done to find out why my daughter is not functioning at what a four year should. wait....what? That's not on MY check list.

There's make my daughter's wedding dress, send her off to college, watch her mind grow and learn through her school years and excel, there are dance, music, soccer, and gymnastics lessons and lessons for what ever else fancies her. There are boyfriends, school dances and prom, high school and graduation to look forward to.

 All these things and more are now needed to be thought of in a whole new light. Somehow having a special, happy, hard to ignore her smile and personality, wonderful, delightful and truly special spirit was added to my life's check list.

 This year we have gotten serious with getting Lily diagnosed. We still have a slew of testing to go through and that won't happen until September, but we were able to get Neuro-pshyc done this month. While I knew something was up from her IEP meeting with the school district in April, seeing her scores stay the same, even with all the help she is getting the last two and half years. I knew, I just knew something was up.

 Still even having that knowing feeling, you are NEVER as a parent ready to hear those words in the results. Cognitive Delay, yet to be determined and scoring into the mild mental health issues. I held back my tears for 5 minutes before I lost it. I wonder how many times the Dr. had seen parents try to hold it together, and I'm thankful for the space and time she gave me to let them flow.

This doesn't fit in on my check list. I'm already too busy checking everything else off, I don't want to have to deal with this one. And now I feel I have "lost" something and basically going through a grieving process. Grieving for things and experiences that will be "lost" in raising Lily. Those things I don't know if I will ever be able to keep on my check list for her.

 The uncertainty of it all is going to be hard for me. I'm such a "I need to know everything will work out, or I'm going to be a mess" kind of a gal. I need to see those threads connecting everything together and knowing it's going to turn out exactly how I imagined it.

 Well, Miss Mary. Throw the "pattern" and check list out the window, because "normal" ain't happening.

But there is a glimmer, a tiny hopeful glimmer. Some of the ways she was observed while testing showed she could learn, grow, talk, think and be her own "normal" with the right environment, help and classroom setting. She is like her mamma, a hands on visual learner. In the right setting this could be her ticket to becoming that much closer to that vision on my check list.

 For me now, it's not so much I'm grieving about the diagnosis and what ever else we find out later this year. It's about knowing, that not everyone else recognizes the special little being I'm charged with. Not our insurance, schools or the people in the stores who look at my child in "that way" and judging me because of how she acts or speaks sometimes.
 It's knowing I'm going to have to fight every last minute of her educational life, just to get her the basics. And that's not enough, time is already slipping, We are loosing what could be big impact time for her and that to me is more scary than anything else.

 As I wrap my feelings around this major "alteration" to my pattern, I know it's going to suck and be frustrating. But I now know of some things said to me are coming to be. I never expected this to be the reason. But I am so glad it's Lily, even when my hard days with her wear me out, I'm so so so blessed to be her mamma. I get to take care of this little angel who's contagious smile can win anyone over.

 Things, I know could be worse and she could have way more complications than what we are dealing with. Everyday I'm praying and hoping to be that parent she needs me to be to give her the most "normal life" for her I can give, with her very own special list of things to check off.

The Recipe

I've already gotten request for the recipe I used, so I'd thought I'd go ahead and post it!

It's from the cook book "I can't believe this has no sugar" cookbook by Deborah E. Buhr ISBN # 0-312-04330-9

We've had this cookbook as long as I can remember. probably from one of my Mom's DI finds. I used it a lot growing up for it's pie crust recipe, which uses wheat germ. When I do it right and don't mess it up, it makes the crust really flaky and light; since it does not use butter or lard.

Milk chocolate cake:
2C. frozen dark sweet cherries
2-4 tbs water
2 extra large eggs
1/3 C. vegetable oil
1/4 C. unsweetened grape juice concentrate
1/4 C. unsweetened pineapple juice concentrate
4 tbs powdered milk
1 & 1/3 C. flour
1/4 C. unsweetened carob or cocoa powder
1 & 1/4 tsp baking soda

Preheat oven to 325 F. oil and flour a 9x9 baking pan ( I used a 9" round pan)

Puree frozen cherries and water in a blender. blend till mixture turns and folds when blender is on. Place puree in a small strainer over a bowl and let it drain for 10 min, stirring occasionally. Pour pulp remaining in strainer into a measuring cup and add enough of the juice to make 3/4 C. of pulp and juice ( I blended it until it started to just fold in on it's self and since it wouldn't separate I just added it to the batter as is.)
In a large bowl, combine 3/4 C. cherry pulp and juice , eggs, oil, juice concentrates, and dry milk. Mix with a hand mixer for 30 seconds. Add the 1 &1/3 C. flour and cocoa and mix well. Stir in baking soda quickly with 28-30 beats and immediately pour mixture in prepared baking pan.
Bake about 31 minutes or until inserted knife in center of cake come out clean.
Remove pan from oven and place on wire rack until cake is completely cooled. To store use an airtight container and keep in fridge or freezer.


Chocolate Date Sugar Frosting:( I double the recipe to cover the whole cake,)
1 oz baker's all natural unsweetened chocolate ( I used unsweetened carob chips)
1 tbs vegetable oil
5 tbs water
1/2 date sugar (can be found at health food stores)

In a small sauce pan, melt chocolate/carob, oil and water over medium heat until all smooth.
Reduce heat to low, add date sugar, and cook, stirring for 2-2.5 minutes..
Remove from heat and continue to stir mixture for 1-2 mintues
Spread frosting on cooled cake.

Nailed it!

So I have this deal going with my sister. She needs to take a month of rest to help her out her auto immune issues. And in support of helping her stick to it, I've gone off cane sugars and corn sweeteners for the month as well.

At first it was really really hard. I was craving sugar like crazy! But now more than two weeks into our deal, I really feel much much better. I think the sugar was making my morning sickness symtoms kick in. The week I stopped eating sugar, I quit getting sour stomachs. Total win! I just may go with out sugar even after my month deal with my sister for the rest of my pregnancy (besides family events, as we have a lot going on this spring and I don't want to cause issues in making special preparations just for me after the one month)

I've found I no longer crave sugar and don't miss it. I do however miss making treats and having a sweet treat now and then. I've solved that by stocking up on fruits. I can't get enough of cuties, strawberries and blueberries. I've found a handful of dessert recipes that have turned out well.

Above pictured is my total success of tonights treat. A chocolate cake! Sweetened with 100% fruit juices, cherry puree and unsweetened cocoa powder. I frosted it with a frosting recipe made from carob chips, date sugar, water and oil. I then topped it with fresh frozen raspberries from my In-laws garden. It was really yummy! The cake baked perfectly, was moist and even Jason went for seconds! A big success in my book when it comes to all natural hippy treats :D

Other treats I have enjoyed that are sugar free:
My sugar free peach pie recipe, made with fresh frozen utah peaches from last summer.
Mashed bananas and cocoa powder
A chocolate pudding made from pureed avocados, agave nectar, water, coco powder, vanilla and a bit of cinnamon. It tastes amazing with fresh strawberries! You'd never know it was made from avocados!
bananas, ice and milk smoothies
freezing yogurt containers with a popsicle stick (non-sugary kind)
frozen cherries and of course tons of bananas, oranges, strawberries, cuties and blueberries. And I can't wait for peaches...

Up next all natural sugar free carob chip cookies!

Still on the soap box...

Ok, so I just read an article on how Utah is taking out sex ed in health. And I guess I must be on some sort of soap box this week. Or maybe I am just finally realizing that I want to be more involved with what's going on in my community and I am more willing to be vocal about my opinion.

But seriously...

here is the link to the article I read today. http://www.heraldextra.com/news/local/govt-and-politics/legislature/abstinence-only-bill-gets-nod-from-house-committee/article_d874ba61-7314-52a8-937e-9b5c3d1810eb.html

Here is the comment I posted on the link this friend posted.

Teaching just abstinence in schools is not going to solve the problems. If parents are so concerned about their kids getting the right sex ed. Then they them selves need to be apart of it, as the West high student said. Since the school won't teach a proper health class; they have gone to the internet for information. That's no place for sex ed. there is too much of a chance for them to get involved in things that could truly damage a healthy sexual relationship.

I guess I was lucky enough to get my sex Ed in Berkeley CA. What a shock that was compared to what had been taught here. But the teacher was great and I knew my options and risks if I ever choose to have sex before marriage. And yes the teacher did lose control of the class here and there, you're teaching squirrly students about an uncomfortable subject!!!! Of course they are going to react that way! This teacher was good because he made us feel it was ok to be curious and let us know what could happen if we didn't take the right precautions.

But it was my open relationship with my mom and what she taught us in accordance to what we believed as an LDS family that helped me make the choice to wait.
Denying that openness at school seems to me would make students more uncomfortable to share and ask questions. I'd rather my kids got the sex ed I got (too much compared to too little) and come to me with questions than go to the internet or friends. While I will probably tone it down from the Berkeley version I got and make sure my kids are ready for each topic of sex. Meaning, when ever those questions arise, I think it is important to answer them in a version that is easy for that age to understand.


It is my duty as parent to be willing to talk to my kids about it. I have had so many friends growing up that didn't know even the basics. It's sad. There is nothing wrong with knowing what sex means, it just needs to be approached in the right way. Closing up and not talking about it is wrong. It just makes the subject more taboo.
I'm the example and I want to make sure I am setting the right example, meaning I believe sex should be for marriage. But I know part of our life experience is making our own choices. I want them to know that they can do so, but I want to make sure they have all the information to make wise choices to keep them self safe if they choose not to wait. But I hope my example and what we teach and believe in our home will be what they need to wait for a temple marriage.

I'm not saying the word sex should be used in a super casual text. I know and feel it is a sacred thing between a husband and wife. I just feel it doesn't need to be a topic that needs to be locked away. We can still keep it a special topic, and teach our kids in a healthy way about it.

Ok I know, it's a lot to put out there. But I'd be interested in opinions!

Letting off some steam...(LONG post)

Ok, so on day of all days I decide to post my feelings on this issue. Is a day that Lily was being HARD. A hard day with Lily is in all honestly NOTHING when it comes to kids with learning delays. I really have no right to complain, but I'm really good at complaining, so I do.

She hasn't been sleeping well and due to that face neither have we; most definably a contributing factor to the not being able to handle being a parent today. She came into our bed half way through the night; tossed and turned for who knows how long. This was night #2 of this, so this house hold has been on the grumpy side this week.

I had a friend come over to help with some homework for her bridal design class. Lily whined and just wanted to be held the whole time and eventually dozed off in my lap. A clue to how much sleep the poor kid has been getting due to her night wake ups. As soon as I laid her down, so I could have my hand free to help my friend. She of course in preparation of the new-born days to come, woke up the minute I walked away and refused to go back to sleep.

At this point, I had hit the "whatever kid" stage and finished up helping my friend and fixed us lunch knowing she would nap after.
Our lunch went pretty well, less whining, but she would not, could not wait the 5 minutes it took me to heat up last nights left overs. Once she got her food she was fine. And after lunch, she did go gown for nap quite easily and slept for over 2 hours. So I got a break to gather up my mommy super powers and prepare to attack the rest of the day.

WRONG.
She also woke up a grump from her nap. Although she kept her cool as I allowed her to help make dinner and clean up the dishes, but not chill enough to keep her self entertained if we went back down stairs to sew. I knew she needed a break and decided that I'd have to pick up sewing later after she went to bed. Which I am writing this post while waiting for her to go to sleep, so I can sew for a bit to keep on schedule. Thankfully she is keeping to her bed and will be out shortly; which is good because she woke up from her nap at 4:20!

Ok, I know that is a long pre-cursor to what the point of this post is about. But I had to share to remind my self, even on our bad days; I am so lucky to be Lily's Mom. Up's, downs, challenges with the learning delays and getting therapies and all.

A school friend had posted on her FaceBook today that she would rather have puppies ruin her carpet, because kids ruined your life. While I do have her age to factor (21) and she is extremely feminist and very against the LDS church and all is stands for.

This comment above set off my feelings of I am so sick and tired of being undermined because I choose to become a Mother. I am who I am today and I'm where I am in my life right now, BECAUSE I made that choice. It hasn't made it any easier, the process of getting here. But I feel today (the fact I got my diploma's in the mail today helps) that I know it might be a longer road than I want it to be, but I WILL reach my goal. I can see it. I can feel it in my bones. It's just recognizing the fact that saying yes to that little nagging voice in the back of my head back in 2007 saying "it is time, I am waiting" was the start of all the wonderful opportunities that I have been given since.

Even on days like today. I CANNOT imagine my life without Lily. Which leads me to another post by a FaceBook friend with similar extreme feminism views and frustration towards the LDS faith. Who had posted an article about how female seminary teachers are not allowed to continue teaching after having children. In the article the head of the department they were interviewing said (if I recall it right) "they don't want to come back, because they want to stay at home"
While I do question why they won't let these women come back to teach if the money is needed to help stay a self sustaining family and it is what they love to do. But on the other hand being a stay-at-home-Mom and loving it, I honestly don't blame them for not wanting to go back to work. I love what it has given me and being a SAHM is what really gave me the drive and time to be doing the things I am doing now. Making and sewing up MY designs and marketing MY skills. I would not have the time or energy if I was still working for Ballet West or the bridal shop or film. All were fantastic experiences, but what I am working on now is my real dream.

Now, please dont' take it I am against working outside of the home. I know coming from my self, that sometimes us women need to have a job, not only to support our families, but to support our sanity. Some are just not able to be there for their families unless they can make a difference for others by working. I am one of these. I need to be busy to feel like a human being, I need to create to be a better Mom. When I do, I am so much more able to handle what ever the day throws at me. Honestly there are somedays where I envy those woman who are perfectly content with running a house hold and kids and that's it. Somedays I feel guilty about seeming to be so selfish and letting the house be a disaster, so I can work on my sewing.
But what I am learning about balance, while teaching my self to be more self disciplined this year, is that I know it is going to be hard and make the road longer by trying to balance both worlds. But I am learning my limits and Lily's limits and I am making it work. Because I have seen what I am like when I'm not working on my personal goals along side my family goals. I can't be there for Lily and it scares me. I need to keep my mind healthy, body and soul (spiritual) to be there for my family.

Also I have been involved with a friend in helping support HB 69 in this year's legislator session. If this bill passes; families like my friend will have Autistic therapies covered by their insurance. Something that I feel is SO important being a Mother of a child who has delay issues similar to Autism. While the people who I have talked to in relation to this and Lily have not had any concerns with Lily falling on the spectrum, I still feel this is an important issue to support. Lily's therapies are no different from my friend's daughters and I have been dealing with similar issues in getting her therapies covered as well as properly diagnosed. Delays are not covered by insurances and I support my friend in helping getting the coverage needed so these kids can be a contributing member of society when they grow up. I don't want to have anyone else go through the stories and heartache I have experienced my self and seen in connection with the learning delay community.

I took time to send in a pre-written letter by the Autism Collation to help support HB69. I did 't expect a response, but I got one. I am glad my legislator is taking time to respond, but it left me furious! In the opening statement, he talked about how he had a neighbor who had a Autistic child and he saw and recognized the struggles this family went through. And while he felt for this family, he would not be supporting HB69. Just seeing and recognizing the situation is not full comprehension of what someone is going through. You will never, never, never understand someone's position until you, your self are in it. Which is something that I learned while trying to "support" my friend with an Autistic child with positive comments on all her FaceBook post on the struggles she was going through to get what her daughter needed. I never fully could understand until I, my self realized Lily needed more intensive therapies and I tried to get insurance to cover it.

This lead me to think and realize and hope I will try to never judge a person, situation or event unless I can more fully comprehend what's it is like to be in their place. Which is the reason the above mentioned FaceBook friend posts make me so sad. I honestly cannot express and share or begin to describe the challenge it is to be a Mother. Never has my sorrow been so great, but never has my joy been so full. Yes I realize not everyone is up for the challenge or is even fit for it, but I hope, beyond all hope that these types of people will take from what I have learned and not put down the journey I have decided to take before opening their heart up just a little to what is like to be a Mother.

I am so grateful I know my place as a daughter of God. I recognize the important mission I have to be a Mother, a woman and a wife. This is one of the real reasons I do what I do sewing wise. I want to help woman feel that being a powerful woman is not being a rock-star, actress, or model. It is recognizing the true humble being of being self-less. I'm not about creating sex symbols when I go about designing my non-modest looks. I am looking to empower the true meaning of woman by taping into the beauty that we are. I do feel that being modest helps diminish the media driven need of being sexy=powerful and confident. And I am all for that. While clothes help us feel beautiful, it's what we are taught and stand for, live for and those self-less acts that makes us beautiful.

And my response to this friends post on preferring puppies over kids?

My kids have been the best thing that have ruined my life.

Cravings

As most of you know. Baby #2 is on it's way!
This pregnancy is SO different from L's. Almost immediately, once my body knew it was pregnant; I have been nauseated all the time. Things eased up once I hit the second trimester, but even still almost everything I eat gives me a sour stomach. I can't figure out if it is one thing in particular. Like with L it was bread. The smell, taste or even looking at it made me sick. I also pretty much became mostly vegetarian and it is the same for this one. I really dont' like meat, well full portions of meat. I don't mind if it is in something with sauces or something. But chicken in particular I find gross in any form. Beef and pork are ok if they are prepared in the above method. Fish pretty much in any form is fine. I just don't like smelling it cooked.

I've decided to create a list of odd cravings from my pregnancy with L and the current one. I don't think I ever wrote them down with L. And these cravings for #2 are just so crazy that I have to make a record of it.

With L I craved/loved eating:
Weirest: Brazil nuts with milk and hot dogs,
Ate most often: we ate spaghetti at least 3 times a week in my final months,
First few months: Orange Juice, cool ranch doritos, chili from Wendy's

Honestly there really wasn't much craving going on. I remember being kinda disappointed that I really didn't have any crazy cravings my first pregnancy. Well no problem in the craving department with #2....

With #2 so far I have craved the following:
cocktail sauce just by it's self, cocktail sauce in place of cranberry spread for thanksgiving, cocktail sauce on fresh watermelon, orange juice and lemonade (hot dog on the stick has the best lemonade!!!) milk by the gallons, fruit or fruit flavored candies helped ease my nausea, shrimp (with cocktail sauce) crab (with cocktail sauce) sweet and sour sauce on anything chinese, cheese, fish almost always sounds good; I've eaten a lot of tuna, well more than usual and with caution to help keep clear of overdoing the mercery levels, blue cheese! Oranges, cuties, ice cream, juices and vitamin waters.

Also eating too many grains seem to kick in the nausea.

NEVER have I gagged so much in ANY time of my life. Anything remotely gross sounding, smelling or visuals will set my gag reflexes off. Sometimes so bad, that I have to lay down for a few minutes to avoid throwing up. I mean it is so bad that some of the mildly grosser stuff on Mythbusters will set me off. It is pretty funny to watch L while I'm having a gagging fit; she copies the sound I am making and stands next to me with her hands on her knees and head down, while I try and focus on not having everything come up. She says "Mom, I want to throw" meaning she wants to throw up. I was sick on Christmas and had a bowl next to me, which she pretended to "throw up" in.

Regardless of all the wonderful joy's of being pregnant, we are super excited to welcome this new addition in our home. I can't say I am looking forward to the sleepless nights, but here's to hoping the new baby will be a great sleeper right off the bat! L has never been a good sleeper, so somethings got to balance out. Right?