Summary of our 3-year journey

PapaswingingIsaacIt’s been almost 3 years since we first saw our son, Isaac, via ultrasound, and we’ve loved him ever since!

There is so much I want to share, so I’ll try to organize my thoughts as much as possible.  Even if no one ever reads, this “journal” has been important for me to record, and hopefully will be a blessing to Isaac, too, when he’s older.

I haven’t even come close to my goal of posting every month, but with 13 in the family, every day is busy!  I work hard, but go to bed with a smile on my face, even if it is already the next day. 🙂  Let’s hope I do better with my goals for Isaac!

I.  Primary Goal

My primary goal is that Isaac will love the Lord God with all his heart, soul, mind and strength.  I pray often that he will be a soul winner, leading souls to Christ, that they may be cleansed by faith, and reign with Him someday.  This world is temporary, but eternity forever.  “Jesus saith unto him, ‘I am the way, the truth, and the life: no man cometh unto the Father, but by me.'”  John 14:6

II.  Working Toward “Wellness”

Wellness – the state or condition of being in good physical and mental health

“Beloved, I wish above all things that thou mayest prosper and be in health, even as thy soul prospereth.”  

3 John 1:2

One of the first things that came to my mind after I received Isaac’s diagnosis was that I wanted him to have choices.  I wanted him to work at a job because he was interested in the work, not because it was one of the only things he knew how to do.

When I found out there were people achieving amazing results with children with T21, through nutrition, supplements and therapy (more intense than early intervention), I was interested.  It does not come easy or free, but it seems well worth the effort to me.  They are treating Trisomy 21, just like you would treat another medical condition your child had, instead of just treating the symptoms, or saying, “Well, that just happens with Down Syndrome,” and not doing much to deal with the root causes.

If a condition is genetic, many of us think nothing can be done.  I remember when my husband found out he had high cholesterol about 15 years ago.  The doctor said, “You’re young, you’re thin, there’s nothing you can do about it. It’s just genetic.”  End of story.  You just can’t get this job you want (the company was requiring cholesterol under 200).  Well, my husband really wanted this job, so at the advice of a friend he ate no cholesterol for a month.  He ate a lot of almonds and was hungry, but his cholesterol went from the 260s to the 150s, and he got the job!  Don’t get me wrong, I’m not against doctors, but with my son especially, I refuse to just believe everything they say and give up on the hope of a better outcome.

I’m not talking about removing Isaac’s extra chromosome, although God could easily do this – He made the sun!  I love (and like!) Isaac just the way he is.  But when I hear of children with T21 that do not need extra help in school, are not in “special” classes, and are getting into and completing college, I want to do what I can to give him choices.  (More about that below.)

While I can’t do everything some of these “supermoms” do (I’m just about to graduate the first of our 11 homeschool students), I purpose to do my best, without neglecting my husband and other children along the way.  I trust the Lord to lead us, and would appreciate your prayers for us!

III.  Favorite sources for information about T21

Although I was totally overwhelmed with all the information at first, the following websites have blessed and changed me/us, and given me much I can do to help Isaac achieve wellness:

  •  http://dsdaytoday.blogspot.com/p/start-here.htmlVery practical info. on numerous topics related to T21.  Andi and son Jett, reading and spelling English & Japanese in preschool, healthy, not qualifying for any services in school – not even speech therapy!
  • http://thedownsyndromeactionplan.blogspot.com/Very inspiring journal with lots of info. (I took notes on the whole thing!).  Geralyn and son Lucas are “redefining the reality of Down Syndrome” – more truly amazing people!
  • http://naturallybetterkids.com/ – Kristen and son Gryffin, showing how skilled & smart children with T21 are, in Australia and around the world. Great book, videos and photos!
  • http://www.downsyndrometreatment.net/ – Dr. Erica Peirson, wonderful doctor and person, especially skilled in cell biology, thyroid, and keeping up on recent studies, son Miles with Mosaic DS. One of the few, I’ve heard, who knows DS well and treats it.  She has seen Isaac over Skype and helped to get his thyroid working better. (Also, http://www.peirsoncenter.com/)
  • http://www.hope-future.org – Neurodevelopmentalists who will evaluate your child (over Skype if necessary) and give you a program to do at home.  Isaac did this for over a year, 1-3 hours, 5 days/week.  Great, skilled Christian people.
  • http://downsyndrome.nacd.org/index.php – good videos and info. on the neurodevelopmental therapy model, similar to Hope and a Future.
  • http://www.familyhopecenter.com/ – More intense neurodevelopmental program.  Isaac and his older brother do this now.
  • http://www.normschwartzmd.com/ – Functional Integrative Medicine, takes Skype patients.  We have not used his services yet, but he has come highly recommended.  Also one of the few in the country interested in really treating our children.
  • http://billandria.blogspot.com/ – lots of great info. about DS and their son’s journey!
  • http://gotdownsyndrome.net/index.html – older sister shares a wealth of experience and knowledge about DS.
  • http://noahsdad.com/ – just had to share this one  – wonderful, positive family who truly knows the value of every life, and their love for their son just overflows.  VERY positive and encouraging site!
  • http://www.veras.org.br/?Area=fotos#!fotos—videos/c16s4 – (scroll down to first video) testimony of an adult with T21 (Ana Carolina) who was finishing up college at the time – inspiring!

IV.  What we do (or at least attempt to do!)

  • Nutrition – GAPS diet, followed pretty closely for the past 8 months
  • Supplements – started at one year; I won’t list them, as there are about 30, but there are lists on Dr. Peirson’s website under “supplements,” and on DS Day to Day.
  • Treating thyroid – see V. below
  • Neurodevelopmental program – treats/retrains the brain through stimulation of the 5 senses, then results are seen in behavior, intellect, emotions, etc.
  • Pediatric chiropractor – I saw his stimming behavior go away after this treatment; he goes every 3-4 wks. now
  • Cranio-sacral therapy – As needed; the chiropractor refers him when necessary
  • Brill Kids – Reading and math program; I plan to buy the music eventually, as Isaac likes music so much.
  • Talk Tools straw therapy – for correct placement of tongue in mouth for best speech outcome
  • Early potty training – I read it can take up to 5 years for children with T21 to be trained, so I heeded to the recommendation to start early.  It was back breaking with a non-walker, and has taken over a year, but he is dry almost all the time at 31 months.  He does not tell us when he has to go, but holds it, and goes right when we take him. 🙂
  • Signing Time – A bit controversial in these circles.  Some say just teach them some basic/emergency signs, but focus on speech b/c they can tend to rely on sign and not talk.  I heartily agree, but Isaac has the “talking gene” from my side of the family :o), and the people who put out his newest neurodevelopmental program say that it is another language and therefore good for the brain.  He gets so excited to watch it, and does say the words he can along with the signs.
  • Preschool at home – His preschool is language-rich and hands on, a highlight of the day for Isaac’s 4-year-old brother and me, too!
  • Spanish & Chinese – I plan to start these in the future
  • Blood testing – about every 3 months to check thyroid, iron, vitamin D levels, and more
  • Physicians: Naturopathic Doctor & Functional Integrative M.D. – mainly to treat the thyroid, but they also give supplement recommendations and order/read blood tests

** Now you know why I don’t blog every month!

V.  Thyroid – Keep them smart

In all my research about thyroid, I still can’t say I understand it as well as I’d like, but I can at least speak from experience.  When I first went to the center for DS in Denver when Isaac was 12 months old, they said Isaac’s thyroid was fine, so I did nothing for it.  Back in China again, I realized his numbers were not good, and he continued to be lethargic, but they only had the synthetic thyroid there, so I waited.  Later I learned that a lot of damage can be done by not treating the thyroid, and that most people with T21 have thyroid issues.

I finally got Isaac on the natural thyroid, then synthetic, too, when the energy didn’t come up.  Still no energy, though the numbers did look better.  So I took him off after 4 months and tried to treat it naturally with several supplements.  Energy had now come up, but the numbers got worse. 😦  So, now he’s back on the thyroid (NatureThroid and Liothyronine) and doing fine.  Still wish I could take care of it with just supplements, but it’s not worth the risk of not treating it.

It’s proven that babies with T21 are smart, being able to learn to sight read at a very early age.  You can watch the videos of Jett Durkin and many other children online.  Then why is it, I thought, that by the time these children are in school, most are not keeping up with their peers intellectually?  I read that the decline in intellectual ability may be in part because of the thyroid not being treated.  Could it be that simple?  There is obviously a lot going on in a body with an extra chromosome, but how much could we help our children if we just treated the thyroid?  Isaac’s TSH was well over 5, and they said it was fine.  Others say it should be under 2.  I’ll trust the people who are having better results.

VI.  Not to judge

I know the above is a lot, and of course not everyone feels led to do this with their children.  I do not judge others, and respect that others cannot or don’t wish to go this direction.  I read about a couple of young men whose mothers felt led to just “accept” them for who they were and not “treat” them, or at least not aggressively.  They are not very independent as adults, and cannot work if I remember right, but they are just as valuable as any other person, and I know God has a plan and can use them in this life, too.  God leads people differently, and I’m not claiming to know what’s best for others when it comes to treating T21; this is just the decision I’ve made for our son, at least for now.  However, I don’t feel I’m not accepting Isaac the way he is – I’m just treating him and helping him reach his full potential, which I realize can be much more than most people have been taught to believe.

VII.  He’s a JOY, and very loved!!!

This picture speaks volumes (Isaac is bottom row, center):

children

Family/Isaac Update:

This summer was much busier than I thought it would be.  July 9th marked our 20th anniversary, and we enjoyed a wonderful flight and getaway down to Aspen!  July 12th marked 5 teenagers in our home – yeah!  What a blessing they are, teaching me so many things I need to learn.  Many people seem to try to scare/warn young mothers about youth/teens, but I find they are so interesting and wonderful if you take the TIME to really know and care for them.  Things certainly aren’t perfect around here (you already knew that, though, didn’t you?!), but I wouldn’t trade lives with anyone else!  Most days I feel like one of the richest women in the world – rich in people, in wonderful relationships with people who really do care, and a God who cares perfectly for me, even in the hard times.

We had a wonderful 2 months with “Papa” home, and now he got a new job flying the 787.  We’ve got to eat sometime. 🙂  For now he’s commuting, but maybe when we get the travel itch again, we’ll head for China once more.  We’ve talked about spending a few months in New Zealand as a family, too, but not today!  Camping will suffice for this season!  We are looking forward to a trip out east soon to visit family and friends, and Grandpa plans to come out this fall, too.

Our second son was baptized the other Sunday in a lovely service at the lake here in town, with 2 other young men professing their faith in Christ also.  “I have no greater joy than to hear that my children walk in truth.”  3 John 1:4

Our eldest son just finished the last of his high school work, our oldest daughter completed her first novel, and the others are buzzing with all their interests (birding, photography, creative arts, reading, biking, volleyball, etc., etc.).  We got 31 chickens and 4 ducks in the spring, and have only lost one so far.  My 9-year-old can’t wait to eat her duck, but her mother is not so excited about slaughtering it!  I’ve never heard of a child wanting to eat her pet; I guess we’re all different. 🙂

Isaac is doing well, and is a very loving and happy little boy at 2 and a half years old.  When the other children come to hug me, he always wants a hug from them, too!  A real praise is that he has only gotten sick 2 times this year.  He got a mild case of the chicken pox in Jan. (our only child to ever get it, though none have received the shot), and a cough/cold in May, and that’s it!  The change from last year is very dramatic and encouraging, and it indicates his immune system is stronger, especially in light of the fact that we have been much more active this year (swimming, camping, and lots of church activities).

Today Isaac read the words “Isaac,” “Mama,” “Papa,” “Noah,” and “Hannah,” in succession and very quickly, so he is really coming along in his reading, even though I’ve not been as consistent as I should be.  I’ve been very consistent with his older brother, whose needs are more pressing because of his older age.  But from what I’ve read, the earlier the better with T21 as far as neurodevelopmental therapy goes, so I need to get more disciplined about his program.

Isaac has been cruising along everything for awhile (even the oven!), and enjoys his trike and walker, too.  I’m strict about giving him plenty of floor time to progress physically, but at the same time not pushing him to walk.  I read that some are pushed to walk when not ready, which can result in an improper gait and even possible hip surgery later.  (I’ll wait until he’s ready!)  Recently he’s been telling us long stories, though we have little idea what he’s saying.  All his hearing tests have been good, so we’ll hope the speech gets better.  This month we started his preschool (Simply Classical by Memoria Press) and he really enjoys it.  His fine motor skills are really coming along, and he is so sweet and reverent when we pray.  I also incorporate many Montessori ideas at home.  I plan to switch to Simply Charlotte Mason for elementary school, which I’ve enjoyed using with my other children at times, too.

I trust God will help me discern how to spend my time to prepare Isaac for the work He has for him to do on this earth.  I will let the rest go, and trust Him for the outcome.

Thanks for listening!

God’s richest blessings be upon you!

For Jesus,

Katie

Isaacfirstponyride

Isaac’s first pony ride – he really enjoyed it!

 

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