Please Don't Feed the Dante

 This is Dante many years ago, I think right around when he was 1 1/2.  He was the cutest baby ever.  Dante struggled with hypotonia, severe constipation, and developed eczema on his wrists and along his jaw, but he was making progress.  By the time Dante was 3 he was just about walking, fed himself with utensils, and had at least a dozen words and signs that he used consistently.

A few months after he turned 3, Dante had an autistic regression.  He lost everything.  We had to force feed him baby food, we had to wrap his bed railings with foam because of his headbanging, he stopped walking, talking, and signing.  For several months he had a permanent bruise on his forehead from the headbanging.

In the last 3 years he has come a long way, but is still not talking except for some miscellaneous words, and he has about 3 signs you have to really watch for.  He still has the same hat as in the above photo, but he screams and fights wearing it, due to his sensory issues now.

How does the cutest baby in the world go from that to this?

He still has his loving moments, with those of us in his inner circle.  And as long as we leave him with his iPad or musical toys he is fine. When he comes to the table we are good as long as we provide him with food before he starts throwing everything he sees.

This is not good enough for me.

Am I trying to cure him, or help him live with the autism?  I cannot decide which it is I am doing, but I will keep trying to bring him back into our world.

His dermatologist does not know why he has eczema, but says it is not food related.  I know however that when I completely took him off dairy he almost completely cleared up.  This also helped with his behaviors.  I have now also taken him off citrus fruits, corn, and strawberries in my quest to completely eliminate his itchy outbreaks.

And now we have decided to try also taking Dante off gluten, which is going to be very hard.  We are just testing some theories about the effect of wheat gluten on the gut, and therefore on behaviors.  One thing I do know is that when Dante had his regression three years ago, he went from constipation so bad he need medication--- to the most disgusting smelly down the legs and up his back yuckiness daily.  Three years and he is still like this.  It seems only natural to assume the bowel movements and behaviors are related since they changed simultaneously.

But Dante loves bread and pasta, so I have begun experimenting with gluten free flours.  Unfortunately the least expensive flour is almond flour, and Dante's school is a "nut free" school.  His favorite beverage is almond milk and his favorite snack is bread with peanut butter.  All of which he cannot have for lunch on school days.

This isn't an inexpensive endeavor, either.  The flours in the jars below cost me $45!  Once I know which ones work best for gluten free baking I'll find a way to buy them in larger amounts for less cost.  We have also started him on probiotics and fish oil.  Fresh fruit is also costly, but a healthier boy (and family) will be worth it.

ShanLin and Leif were my happy helpers, although for some reason they decided to rub baking soda on their bellies.  My first experiment was pumpkin muffins, which Dante loved.

We also now have Dante going to private Occupational Therapy once a week for Sensory Therapy, and I am trying to get him to see a gastroenterologist that is also an autism specialist, to see about that link.

I think his treatment is slightly more complicated because Dante is not just a kid with Down Syndrome, or just a kid with Autism.  He is a kid with both.  But we'll keep loving him and doing what we think is best so our boy can reach his maximum potential.

God is good!

December Do-Over

Although my husband might disagree, even if he would never admit to it,  I try not to be a whiny person.  But the last few days instead of appreciating the new year, all I want is December back--- I want to go straight back to the first and start over.  I would make the chocolate covered cherries that I have made for at least ten years and didn't get done this year.  I would make the toffee and peanut clusters.  I would knit the hats for my little ones that I never even started.  Didn't start a single one.  I didn't even get to watch "Rudolph the Red-Nosed Reindeer" and "Santa Clause is Coming to Town" with the kids when they were on TV. I'd be hyper-vigilant with Dante so his cold didn't become strep throat and then get into his skin and give him cellulitis so the poor child had to spend four days in the hospital....causing the whole family to not be together Christmas Eve when we watch "Muppets Christmas Carol" and then to not be together for the stockings and gifts Christmas morning.  I wouldn't strain my back and spend most of what was left of Christmas break not being able to work or help do the household clean up I had so wanted to get done.

Who am I kidding?  Getting a do over would just mean repeating the craziness, even if it was a slightly different craziness.  And I'll admit, as long as Dante's pain meds were kept up we kinda enjoyed cuddling on his hospital bed for hours on end...me reading "War Horse" with one hand on the book and the other on his wrist so he wouldn't pull out the IV, and him leaning in to me watching the same 3 episodes of Kai Lan over and over while dozing now and then.

So now we are into another month of me feeling like I am always one step behind on laundry and household stuff.  Already there are 12 appointments on the January calendar, not including Dante's new weekly Sensory Therapy.  And Kimberly's weekly in home therapy-both of which are so important and helpful for them and me as I work with them daily.  And there are NO appointments on the February calendar! (yet)

It's just life, and a good one, so there really is nothing to whine about.  Especially when I can always just take a break to cuddle with Kimberly or play with the increasingly mischievous Leif. (Yes, he is wearing a Christmas beret that goes with one of Kimberly's outfits.)

Besides, who needs a December do-over when there are New Year's resolutions to keep?
My 2:
* Try harder
* Do better

I figure that covers everything.

God is good!

Dante's Christmas

Dante has had a bad cold since last Monday, but when he woke up Friday morning with his right arm bright red I knew we were not dealing with just a cold anymore.  After a brief stay in the Emergency Room, Dante was admitted to the hospital with cellulitis from a Strep infection, and is still there today.  If all goes well, he will be able to return home tomorrow.  As bad as it looks in the photo below, that is actually much better than Friday when it was at its worst.

Not only is today Kimberly's first Christmas, it is the first Christmas we have not all been together as a family.  Jamie and I have been switching off staying with Dante in his hospital room.  Jamie was here with the kids for opening gifts this morning, then he and several of the kids brought gifts into the hospital for Dante and I.  Thankfully Dante's pain level has been going down as his IV antibiotics are taking effect, and we had a pleasant visit.

 It had been decided this morning that Dante's swelling was not going down quickly enough, so his arm was wrapped in gauze and put into a sling holding his right hand up near his left shoulder, to try to reduce the swelling.  Dante was not cooperative during the process, but once it was in place he seemed relieved to have it wrapped and immobile.

 Despite having his right hand trapped and his left arm slowed down by an IV with two lines plus a fascinating new toy, Dante still managed to reach that nagging itch.

 Dr. Leif is in the house!  Whenever a doctor or nurse walked into his room Dante tensed up and showed resistance to whatever they intended to do.  Sometimes he fought more than others, depending on how long it had been since his last dose of Motrin.  So I was very surprised when he allowed Leif and Amelia to play doctor on him.

Today was not how we planned to spend Christmas, but Jamie and I did spend an hour together at the hospital between his morning at home with the kids and my afternoon/evening with them.  We are blessed to have had that time together, and to try to keep it as normal as possible for the rest of the kids.  I am thankful that this is only a skin infection, painful as it has been for Dante, and not a terminal illness or one of many hospital stays for treatments or surgeries. 

Tomorrow I will go back to join Jamie at the hospital, hopefully to bring our Dante home. 

God is good!

A Gift Horse

A few years ago Nikita discovered that she loves horses.  A lot.  She began taking lessons, and for her 13th birthday Nana and I took her to a ranch in Tennessee for several days.  Since then she has leased a horse at Camp Marshall, then bought her own horse, and recently sold her horse in the hopes of getting one better suited to her needs.

Nearly every day she tells me about one online that she has found, and her mentor at camp helps her decide if this one is good for her.  Nearly every day.  Ok, actually every day I hear about a horse for her.

So when we were recently offered a free horse, how could I say no?  It is slightly smaller than she usually likes, but downsizing saves money on hay, grain, and stall rental since this sweet girl could fit in the paddock with our goats.

Well, I should have remembered that teenage daughters can be hard to please.

"Not this big, this big!"

 I even tried to tell her that she should never look a gift horse in the mouth.

 Maybe we can get some stilts for our new mini?

"Missy" has been used as a therapy horse, but she needed a new home.  Nikita put me in contact with her owner, and things all fell into place.  She is a sweetie, and will get so much attention here!  Nik said Missy likes being groomed, which was Micah's favorite thing to do with our previous pony.

God is good!

Now to go see a photo of the next horse Nikita has found...praying she finds the perfect one soon!

Christmas Photo!

Today we took some photos of all 9 kids- together!  There is not a single perfect shot, but since I am incapable of giving perfection, I was not expecting it either. 

We have to choose one for Christmas cards, and soon.  Here are a few, plus 2 cute ones of Kimberly and some our tree going up:

Falling in Love

Yesterday marked the 2 month anniversary of Kimberly joining our family.  That day in Boston seems so far behind us now.

Jamie and I began our fifth adoption journey back in the Spring, initially thinking we would be going to Ghana, and then we thought our daughter was in Estonia.  It is not uncommon in the adoption world for parents to switch countries, or for the child at the end of the adoption journey to not be the same one they envisioned at the beginning of the adoption journey.  Therefore I should not have been surprised at the changes for us, but here I am, with a little 2 month old baby when I never considered we would be blessed with such a wee one.

My feelings for Kimberly were so conflicted the first few weeks of her joining us.  This domestic adoption is so entirely different from any of our international adoptions.  They were all so....anonymous.  Each of our internationally adopted children was left at the hospital or orphanage by their birthparents because of being born with Down Syndrome.  I was not required to spend time thinking about their emotions.  

I did not have to look them in the eye and promise to love their child as much as they do, even as the tears in their eyes made it clear how great was their love for her.  I did not have to promise to make sure that even though she is the youngest of 9 she will get just as much love and attention as if she were our only one. 

With our anonymous adoptions I was able to be the Mommy that gives that an orphan a home, and secretly wonder how a woman could carry a child for 9 months and then give her away because her country's culture or society might make it difficult to raise a child with Down Syndrome. (Let's be honest, what adoptive parent has never once thought like this, even if it isn't our place to judge?)

This time was different.  The first few weeks I felt like I was simply raising someone else's child for them.  I loved her like I had promised, but she was not my baby, she was still theirs.  We did not change Kimberly's  name out of respect for them, but sometimes I thought we should have, that it would make her more mine if Jamie and I had chosen her name. 

Slowly I stopped feeling like I was doing her birthparents some huge favor, and she became my daughter.  I stopped feeling guilt for taking her when maybe I should have found a way to make it possible for them to raise her.  After all, were their circumstances their fault?  Who was I to agree to take a baby from loving parents and raise her as my own?

Kimberly's birthparents made a decision, probably their most difficult ever, based on sacrificial love.  They are amazing people who truly loved their daughter, and wanting to be Kimberly's mother gave me a lot of guilt.  The first few weeks were hard, but I no longer feel like I am raising someone else's baby.  She is my daughter, I am her mother, and we are blessed.


And still, I cannot stop thinking about all the babes left in the orphanages.  I do not know the emotions of their birthparents, but having seen the photos and read the stories of some of those places, I cannot help but think that there is nothing sacrificial about leaving a wee one there.  I know that there have to be some amazing parents in those countries who are doing what they can to erase the stigma of having a special needs child. 

If you would like to consider adopting a child with Down Syndrome, or supporting a family who is in process, please visit Reece's Rainbow to learn more.  You can also help raise grants on individual children so they are more likely to be chosen for adoption-- because it is very expensive. 

Two Months and Growing

Kimberly had her 2 month appointment today!  When we met her October 5th she weighed 7 pounds 5 ounces, today (7 weeks later) she weighed 8 pounds 14 ounces, and has grown 1 1/2 inches!!  In the above photo she is wearing the same outfit as when we first laid eyes on our daughter.  She was swimming in it then, and it fits her perfectly now. 

Our baby girl is healthy and growing well, even starting to coo.
God is good!