Last Swim of the Season!

Story of the "Happy Chair"

After many months of not finding time to blog, I would like to invite you to check out Soliz and Camila on the AZ news!!  We decided to take the time to do this news interview as a way to show appreciation for Southwest Human Development and the Adapt Shop.  With out these supports in our lives my kids would not be developmentally where they are today.  The happy chair did indeed change our lives.  I look forward to sharing more examples of their amazing progress once I get my computer up and running again.  Please enjoy this video of the kids!!


http://www.azfamily.com/news/9pm-extra/Adapt-shop-helping-Valley-fam-141260023.html

Example of "good" sitting in the Happy Chair

Example of "messing around" in the Happy Chair

YIN & YANG

Soliz and Camila were born 21 months apart with the same rare genetic syndrome called Wolf Hirschhorn Syndrome.  They are also both “deafblind”, meaning they are both hearing impaired and visually impaired.  They have lots in common in fact when we are on the go lots of people ask if they are twins.  But they couldn’t be more different from one another:  their personalities, their likes and dislikes, their strengths and weaknesses, their development physically and socially.  Their differences compliment each other so we see them as “Yin & Yang”.  Their spirits are intertwined.  Even though they cannot speak, they communicate with each other through touch, body language, with their hands and in other ways you and I may not understand.  It’s as if they have known each other beyond this world and they are meant to be on this earth together.

When Solizwas born our world turned upside down.He was born full term via emergency c-section weighing a whopping 4 pounds 3 ounces and stayed in theNICUfor the first 8 days of his life.As his mom and dad, we saw nothing unusual or different about him.In fact, I know we saw a geneticist during our NICU stay but I cannot recall that they were doing any kind of formal genetic testing.So when we got the call on the eighth day it was a bit of a shock.The doctors told us our son was born with this rare genetic syndrome that we knew nothing about.The next many months were full of doctors appointments, therapy visits, learning new acronyms, long nights of pumping mama’s milk and long days of trying to figure out how to feed our son and keep him healthy.Our experience as parents was humbling, more challenging than we could have ever imagined and full of joy.

Baby Soliz

      We celebrated Soliz’ first birthday with family, friends and food and a couple weeks later found out I was unexpectedly pregnant!!  Imagining having another child to care for felt mind boggling at times.  On the other hand we were thrilled that Soliz would have a sibling he could learn from, a sibling that would motivate him to hopefully learn to walk and talk someday, a sibling that could help care for him.  My pregnancy with Camila was so different than it had been with Soliz.  With Soliz I was worried about his size, his lack of movement.  With Camila I felt healthy and I felt like my baby was growing appropriately.  We went in for an ultrasound and she looked great.  We had planned to do an amnio that same day but my amniotic sac was fused, so they said to return in a couple weeks to do the procedure.  We never returned.  Although we had not yet done any genetic testing we decided the risk of miscarriage and having another child with any genetic syndrome was equivalent.  The baby inside me was meant to be here with us.  I felt this so strongly and could not imagine making any other decision than to have here with us.  

Camila's First Day

      Camila was born at home.  After 30 hours of grueling labor I pushed her out on an April morning.  Soliz woke up from a nap just in time so got to meet her, as she was fresh out of the womb. I knew right away that my daughter also was born with the same rare genetic syndrome as her brother.  I could tell by how tiny she was, her unusual hands and feet, the coloboma in her left iris.  Then later that day we found out she had a cleft palate. As soon as our pediatrician saw her the next day he knew that she also was born with 4p-.  He was shocked.  He was one of the many who said to not worry, our chances of having other child with WHS was so rare.  As you might imagine, we wanted to know right away the true story of our genetic make up.  So we got tested. We found out within a couple of weeks that my husband is a carrier.  He has a translocation on his 4^th and 21^st chromosome. We also found out that his oldest son is also a carrier.  It was relief to know the truth but also confirmed that the chances of having another child with 4p- would be high.  So Camila would always be our “baby”.   

Camila is a mover and a shaker.  If Soliz turned our world upside down, Camila is the one who turned it right side up again.  She has told us to get it together, to go deeper, to search further.  The brave one’s have entered into our lives, while the frightened one’s have run away.  Our world is Wolf Hirschhorn Syndrome.  Our world is deafblindness. This is what we know.  These are our children. 

Why "Tube Food"?

Soliz and Camila both have g-tubes (gastric feeding tubes).  They were obviously not born with them.  They both took a bottle for there first many months;  and I pumped for them, so they have never had formula.  But at 18 months they were just not taking in enough solids.  No reflux.  No aspiration.  Just not enough food intake.  When Soliz was about 14 months old I had a strong intuitive feeling that Soliz needed to get  a g-tube.  (I was not yet aware that I was pregnant, and I did not know Camila would also be born with challenges due to WHS).  So at 18 months Soliz got his tube.  Then, either ironically or coincidentally, Camila also got her's when she was 18 months old.  Camila has more challenges when it comes to eating as she was born with a cleft palate.  Not only does she have the cleft, but she also just has a hard time keeping the food in her mouth.  She has an over abundance of saliva which makes it very difficult for her to chew and swallow.  Soliz on the other hand eats very well when he wants to.  He doesn't even need a bib and will usually try anything his mom or dad are eating.  We hope that Camila gets to this point in the next couple of years.

 Even though both the kids have g-tubes they eat by mouth at every meal. We are constantly working on eating. The g-tube certainly isn't the "easy way out".  The g-tube is our assurance that our kids are getting all their nutritional needs each and everyday.  In fact, we make all the food that goes into their tubes.  Their homemade formula is colorful-green, orange, yellow and purple.  Because of the g-tube we feel very confident going on adventures, traveling and day trips which require eating on the go.  Without the g-tubes I'm not sure if we would ever leave the house.  Especially with the eating challenges times two!!!!!

Fruit

Veggies

Grains

Protein

Dairy/Fat

Mix it all together......

....and you get a nutritional concoction that keeps our kids healthy and strong!

Highlights from Ryan House

Swimming was a main highlight for the kids this past week!!! 

They got to go swimming everyday!!!  

Thanks to Mama Jo, Grandpo Dan and Dad!!!!!

HOME

There sure is nothing like bein' home.  My kids next to me cuddling in bed.  Even though I can not lift them up (for up to 6 weeks), I can read to them, and lie with them, and caress their hands and sing to

them.  I longed for these moments while we were separated.  Just to be home, hearing my kids screeching out of delight, everyone eating in the kitchen, the smell of coffee brewing and tortillas warming on the comal.  The simple pleasures that we so easily forget.  My recovery will happen much quicker now that we are all back together.

In Different Shoes

The surgery is over.  It went well for the surgeon.  He was happy with what he was able to clear out:  1 large 10 centimeter hemangioma, 2 medium hemangiomas and 4 pencil eraser sized hemangiomas.  And now I have been recovering.  Trying all the different cocktails of pain meds.  This is such a familiar feeling as if I have done it before.  But I haven't, I have walked this path with my children but never actually woken up from the general anesthesia unable to talk, never been stuck to get an IV, or moved around by a bunch of strangers, tender, right after surgery. I now know my children better and understand  how they might feel, on some small level.  And for them it may even be scarier because they can not talk or communicate with a stranger their needs.

So now it's me in the hospital bed, sometimes alone, sometimes with those I love surrounding me.  As always it's harder than I thought it would be.  I have hardly spent a moment with my kids, I just haven't been up for it.  Luckily I have an amazing support system that has stepped in right in the nick of time.  Yes I am blessed, but right now all I feel is tired and and a bit nauseated from the pain pills. 

It is true, each day it gets a bit easier.