Happy 10th Birthday Shana!

It's hard to believe that 10 years ago today at 11a.m. our little Shana was born. It seems surreal to think that it's been a decade and to think how tiny she started out at a mere 4 lbs. 1 oz. and 17 3/4-inches long. She was a long, lean baby and so sweet and adorable. Many preemies are a little wrinkly when they are born as they haven't quite grown into their skin yet. Shana was not, she was beautiful, although her tiny little feet were a little bit wrinkly. She had a full head of dark black hair and the most beautiful blue eyes. All babies have blue eyes, but she got her Daddy's eyes and they were as blue as the Caribbean sea. She looked at everything with awe and wonder.

I remember going in to the hospital everyday (usually two or three times a day) and changing her diaper and getting her weighed. She was a little sweet bundle of joy. I would change her clothes daily. She was called the best dressed baby in the NICU by one of the nurses and the doctors liked to see what new outfit I had for her. It was not easy dressing her around all of her leads and tubes but I felt she was my daughter and therefore I treated her as such. I wanted her to look beautiful in the blandness of the NICU. I wanted the world to know that even though she had yet to leave the hospital she was going to be cared for.

The day Shana was born, Daddy heard the song I Hope You Dance by Lee Ann Womack on the radio on his way to the hospital. It was the day the song was released and held so much hope in it. Daddy dubbed it Shana's song and it has been ever since. Shana now listens to it on her iPod shuffle and sings it proudly. In school they analyzed the song as part of music class and Shana was so excited to say it was "her song". The words meant so much as I held her in that NICU, some very literally at the time and with hope for the future:


I hope you never lose your sense of wonder
Get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance

I hope you dance... I hope you dance

To think of never taking a single breath for granted while your baby is in the hospital on a ventilator unable to breath on their own, or unable to eat without the food being pushed in through a tube. Knowing that had my water broke 12 hours later, we would have been driving home from Albuquerque and would have been miles from the hospital and she may not have survived. God made things happen to keep our baby safe and we will never take them for granted.

There is one other part that hits me today it is sung in the background as Lee Ann sings the I hope you dance part:


Time is a wheel in constant motion always rolling us along,
Tell me who wants to look back on their years and wonder where those years have gone.

I do wonder where those years have gone, it seems like only yesterday we started this journey. We never expected the challenges we have been given, but at the same time our children are so energetic and full of life. Everyone thinks their child can change the world, and everyone should have such confidence and hope in their children. I look at what Shana has been through in the last 10 years and I know that whatever she brings to the world will be a wonderful gift.

On Shana's 10th birthday pray for her to always choose to dance!

Feeding Therapy

Have you ever thought about how you eat?  Not using your fork or spoon, but how we know how to eat?  I had never given eating a second thought.  It's something we just do.  We put food in our mouths chew, swallow and get the nourishment we need.  It seems so simple, doesn't it?

Well, when Shana was 15 months old and still unable to eat anything thicker than yogurt without gagging and vomiting, it seemed that there was something wrong.  Our pediatrician referred us to a feeding clinic (I never knew such a place existed).  We made an appointment for the earliest date, 3 months later.

During this time Shana started refusing to eat baby food.  Who could blame her, usually by the time you are 18 months you are eating many regular foods in cut up pieces.  The food has salt and flavor, unlike the bland baby food.  By the time we went to the feeding clinic Shana would only eat Safeway brand yogurt and milk.  She was still gaining weight as she should but it took a lot of yogurt and milk to keep her going.

When we arrived at the feeding clinic with Shana we were taken to a room with a table facing a mirror, we knew the staff was watching us.  They did this because having a herd of people come watch your child eat would be a little scary for the child.  We fed her the foods she could eat and then some things she struggled with.  At 18 months the foods she struggled with were pretty much everything.

After observing then the really interesting part started.  The doctor came in and spent over an hour explaining to us exactly how we eat and how difficult it really is.  She started with showing us how Shana had a hard time sitting up in the seat and leaned to one side on her arm to prop herself up.  This made it difficult to eat because as the doctor so eloquently explained "how can you think about chewing when you feel like you may fall on your head".  We got pillow to prop her up and this was the start.

We then learned that what we had called daintiness was actually a problem.  Shana hated to touch anything messy, even her first birthday cake she poked at with one finger to get a tiny bit of frosting.  This we found out was tactile defensiveness.  She didn't like the feel of the food on her hand, so she would touch as little of it as possible.

Did you know that your tongue is controlled by both sides of your brain?  I had not thought about it but it makes sense.  It's similar to your arms.  Now the tricky part is to eat you have to be able to move your tongue from side to side.  When you do that your brain has to tell both parts of your tongue to do opposite things.  This was Shana's other problem.  She didn't move the food in her mouth to the side as she chewed and then swallowed.  She swallowed off her tongue and would gag.   Try chewing up a saltine cracker, then before you swallow move the pieces to the center of your tongue and try to swallow, it's difficult to do.

These are a few of the things that led us into feeding therapy and we were also referred to Child Find the program for children with disabilities.  After many other tests we were told Shana had mild sensory issues, speech and motor delays.  

Shana spent 10 months learning how to eat.  Since she had already started refusing most foods, there was very little she could eat.  We found out that when this happens she would eventually get tired of the yogurt she liked and stop eating it too.  It's called a food jag, eventually without help she could have stopped eating entirely and would need to be fed though a belly-tube.

We had to get her trying new things and teach her how to chew and use her tongue.  We started with pretzel rods to "explore" and we would always have to show her what to do and try to get her to mimic us.  When we were in a restaurant, I'm pretty sure people thought we were crazy, going "chew, chew, chew" and playing with our food.  We didn't care, it was working.  Shana progressed from exploring to eating meltable foods.  She would eat chickpea crackers called Papidi, puff Cheetos, Pirate Booty (puffed rice) and lots of other fun things.  We shopped in a totally different way.  We didn't look at the price or the nutritional value, we looked for things that were meltable in with little chewing.  We also explored new options for the yogurt, we bought Trix yogurt in bright colors (changing the color helped avoid the food jags), we tried hummus, flavored cream cheese and eventually peanut butter.  She didn't eat this on bagels and muffins, she ate them off a spoon like baby food.  To this day Shana will still get the peanut butter and scoop a pile into a bowl and eat it with nothing else.

After 10 months of feeding and speech therapy, speech was necessary because feeding and speech are related, she was finally discharged from the feeding clinic.  We were so thankful for their help.  Shana continued speech and occupational therapy at home through Child Find.

I will end there for today.  So the next time you sit down to eat, think about everything you are doing, which muscles are you using, move your tongue and swallow and think about how this action you do three to five times a day is so much more complicated than you ever realized.

Some Choices Are Made For Us

We started considering virtual or homeschooling a few weeks ago, although it's something we've always considered. We weren't sure we were going to do it yet, only look into it and see what we thought. Well, today I talked to Hunter's teacher and she let me know that there were some changes coming in the school and I have a feeling that she would no longer be his teacher.

This ways very heavy on our decision to pull him from the traditional school system. We have not been happy with the school district for several years and the kids have moved from school to school and teacher to teacher with some positives and some negatives each time we moved. Hunter has been shuffled from place to place and we have had many teachers who truly see his unique gifts and love him and work hard to help him. We have also had teachers who have only seen the negative in Hunter and have even allowed him to be bullied and picked on by other students during class, not doing anything to stop it and even at times making him feel like it was his fault.

This has caused a lot of trust issues with Hunter and it takes weeks or months for him to trust a teacher. This year with his new teacher he has built trust and now with another year coming and probably another change in teachers we really feel it is time for him to be schooled at home, where he will not need to have the constant changes of the school system.

Little More Background

I thought I'd fill in a little more history of how we got to where we are today. The last time I posted any I left off at Shana's birth and admission to the hospital.

Shana spent 5 weeks in the NICU. She was on the ventilator for 5 weeks and we were not able to hold her during that time. We still came to the hospital at least 2-3 times a day. I had to work around my pumping schedule to provide milk for Shana. Once I was able to hold her I quickly took over as much of her cares as possible. I changed her, weighed her, fed her and rocked her for hours. We couldn't wait to take her home. One morning I walked into the NICU and the nurse said they were thinking of sending her home the next day and asked if I would like to stay in the family room to prepare for her coming home. I was thrilled. Then the doctor came up and checked Shana and asked if we would like to take her home that day! We had to arrange for an oxygen tank to be delivered to our house and at around 6pm on June 19th we brought her home.

The next several months were wonderful for our family. Shana got off the oxygen at about 2 1/2 months and then things seemed like they should be. Playing with and watching Shana grow was so amazing. She progressed right on track, only a couple of months behind. She rolled, and scooted and babbled and all the other typical baby things you watch for. Some things were a little slower, but not concerning. She showed little or now sign of wanting to try regular food, and did not start baby food till almost 8 months. She did fine with all the puree foods but could not seem to eat anything solid. She was also very dainty and didn't like to touch the food at all.

At 12 months we talked to the doctor and she said to wait and see if she starting eating more before 15 months. Which she did not. We went back to the doctor and she referred us to a feeding clinic. This began our journey of therapists, learning about disorders we'd never heard of and starting to find some answers to things we never expected.