Enough with Holland

I am in the midst of one of the most emotional and gratifying processes of my entire life...this project has become a physical embodiment of the deepest love I've ever known. I've gone over it and over it because every word on every page has to be right - I owe that to Lucas.

I can't help myself from reading daily articles from around the globe on issues of T21. Some focus on hard science, some on treatment, and some on social issues. Usually hard science excites me because the more we understand the more we can affect, the ones on treatment bore me because the majority of the ideas are rehashed paradigms from decades past; where therapy was reactive and delay-based.

The articles written on societal issues probably give me the most insight, not because of the content of the actual article, but because of the comments that follow. Today, I came across a comment from whom I don't know, but she was explaining what "Welcome to Holland" was all about - I won't bore you with it, I'm sure you've had it shoved down your throat as the most compassionate and beautiful pieces of "literature" ever written.

Am I the only one who is insulted by the insinuation that my son was an "mistake" that I will learn to see the beauty in and maybe even love someday??? I guess if you are an outsider who reads it, it wouldn't occur to you, but this piece of "literature" is handed out like medication to alleviate the anxiety of new moms with a baby who has T21 (among other diagnoses). It is handed out in prenatal classes and support groups. Maybe over 20 years ago when it was penned it offered some consolation, but today???

I tell you what, if I got on a plane expecting to go to Italy and ended up anywhere else, I'd have somebody's ass for it. They'd pay me royally for the screw up that caused me inconvenience, money, and wasted my vacation time. I'd demand all sorts of things in my anger and disbelief and under no conceivable circumstance would I get off the plane, look around and say, umm....well, maybe.....

Having my son was like getting on the plane and having it crash, then  jubilantly realizing I was still alive... and not only was I still alive, but I loved life more, I loved my children more, I was more determined than ever before to toss out the crap that wasn't important and spend the rest of my life trying to live up to the beautiful and amazing gift I had been given. I saw beauty in things I never noticed before, and I felt power in the fact that I had these insights that I previously couldn't have fathomed.

My son was not second best, he wasn't something I needed to learn to accept, he wasn't Holland ... he wasn't even Italy.

He was and is one of the most amazing children I've ever known, he's the child I'd die for a million times, and will spend the rest of my life changing the world for.
 

Long Overdue Update!

I have been wanting to get this update out for so long. My dad passed away the day before Thanksgiving and then the holiday season just swallowed us whole with all the boys' activities. Now I am working very hard to finish everything for the conference including - yes - my book which has taken way longer than it should have. I know the information in the book is important, but my boys wont wait - so I've been doing my best fitting it in - but the time has come, it will be available, soon.

I don't even know where to begin with my thoughts on palatal expansion - I guess the best place is with a photo, or 2...
                                                                  

               

Before                                                                                        After

Physically, there is a much bigger space between his front two teeth (and it showcases nicely just how badly he had damaged his teeth before we addressed the grinding!) But the amazing difference to me was the overall shape of his mouth and face. If you look at his back teeth (the ones covered by the expander) look at how far in toward midline they were on the before picture, they were almost pointed inward. Looking at the "before" photo you can see how much space he had on the roof of his mouth - definitely less than the width of his tongue.

The "after" photo shows all of the teeth in alignment and in an outward position. To see Lucas in person you notice immediately when he smiles that it appears that he has a ton of teeth, his cheeks and maxillary area appear different as well.

In the following picture, you can't see the actual palate, but you can see the overall width of his mouth. The silver brace that extends down to the teeth sits off the roof of the mouth - definitely enough room for his tongue now!

I now know for certain the "large tongue" phenomenon is not true, our kids have very small mouths for a normal sized tongue to fit in giving the appearance of an enlarged tongue.

 

    
Aside from the physical, the changes have been dramatic and some of them coming as quickly as two weeks after we had begun expansion.

1. Sleep - Hands down the biggest change we saw within the first two weeks. Lucas slept through the night, breathed only through his nose, and had no episodes of waking. Sleep apnea is one of the biggest areas our kids can have difficulty with and to remedy, our physicians perform surgical procedures to remove tonsils and open sinuses. Sinus infections are a problem, to which many children with T21 are given maintenance antibiotics. In addition, the most exacerbated physical deformity associated with T21 aside from the almond shaped eyes is a diminished middle third of the face.  It stands to reason that enlarging the area and giving the maxillary sinus network proper drainage issues like sleep apnea, noisy breathing, and chronic infection would stop. I can not overemphasize the absolute change in this area.

2. Speech - This one I can honestly say I have no idea if it had anything to do with the expander or not, but it happened simultaneously so I can not rule it out. The first couple of weeks speech remained the same although articulation initially worsened simply due to the appliance in his mouth. After about two weeks we all felt like we were crazy...I'd find myself asking the boys "Was that Lucas?" Singing - keeping time with the song, expressions like "OOOH Mom, I like that!" Asking Questions, answering questions, having a 7-8 turn phone conversation - appropriately. Use of vocabulary (like when he told me his soup was not delicious!), volume of speech, yelling, naming the days of the week upon request, telling me it is "12:15 o'clock" when it indeed was 12:15 O'clock! Despite all of this the BIGGEST change is reading and he'll do it out loud. I know the preferred method of reading is silent, but let's face it, he is going to have to demonstrate the ability to read...and he is.

3. Health - As I had mentioned, the month leading up to Christmas was crazy. In effort to make everything alright, I did nothing "right." The worst failure was Lucas's diet leading up to Christmas. There were several gatherings where food was out and Lucas helped himself to things he probably hasn't ever eaten. Cookies (gluten, dairy, sugar, dyes), crackers, etc. We got all the way to December 23rd and guess who got sick? (Don't anyone ever dare tell me there is no proof that eliminating those things have no bearing on health.) After a miserable Christmas Eve and Christmas Day (goopy nose, sneezing, etc) I held my breath we would not have a respiratory issue. Indeed before we began this path, it would always go from a head cold to his respiratory tract. After two days, something astonishing happened, Lucas got better. He actually for the first time in his life figured out how to blow his nose, and did so. By the day after Christmas, he was ready for action (and of course I was getting sick!) I believe the improved ability for the maxillary sinuses to properly drain directly affected not only the length of illness, but it eliminated the opportunity for the infection to manifest in the respiratory tract.

4. Growth - all of the studies suggest there will be a growth surge within 6 months of expanding. I am being very disciplined about not measuring him everyday! Will let you know how that goes.

I am sure there are a ton of other little things that I am not even thinking of right now, but those were the biggies. Lucas gets his expander off at the end of January and I couldn't be more thrilled with the outcomes.

How I adore this little boy!!!