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Amazing!!

The biggest praise last year (end of November) was that our older son was amazingly better overnight after a very rough 4-5 months.  He had 2 craniosacral fascial sessions at The Family Hope Center and has not been violent for 6 months!  Not once!  I was really shocked, and even my very skeptical=wise husband couldn’t deny the correlation.  My son’s M.D. felt that the marked change in behavior was due to his first roller coaster rides, which were the week before the trouble started.  His healing came as a real answer to prayer after he was anointed at church at the beginning of November!  We still have a long road to travel to reach good attachment, interpersonal relationships, academic achievement, and problem solving skills, but things are so much better, and he is healing from RAD, ODD and developmental delays.  I believe he has already been healed from ADD through all the therapies we’ve done in the last few years (brain organization, diet, supplements, reflexes, etc).  I am so proud of him for all the hard work he has done in therapy, etc. – I know it is not easy!

Isaac, at almost 4 and a half, continues to be one of my favorite people and one of my best friends.  He is just such a joy – so fun and pleasant and happy.  He loves to be with people, ride his scooter, sing, jump on the trampoline, do preschool & therapy and wander off with that gleam in his eye!  Everyone in the family enjoys spending time with him, and that is, of course, such a blessing for me to see – others blessed by his life every day.

We skipped his appt. at The Family Hope Center last time, to save money, and b/c we have focused more on my older son b/c of his serious issues.  Isaac does about 30% of the program with his oldest sister who works for us this year (a real answer to prayer!), and takes supplements as well as having a very healthy diet.  His heart checked excellent again, and the dentist said his teeth were in the top 5% for people with DS.  His sleep study revealed that he does have pretty serious sleep apnea, though, so we are researching ways to get better breathing (CPAP, removal of tonsils and adenoids, oxygen therapy, orthodontic expander).  Any advice out there?!  We will start with the expander and pray about the other options, too.  We hope to see our older son graduate from the FHC program in the next year or two, and get Isaac up to 100% as soon as possible.  The director said children w/ T21 often graduate in 6-7 years at around 80-85% function for their age.  I think that is terrific and worth all the hard work!  It really keeps me going to do the therapies with my older son, and I need to stay strong for all the children.

We met a man with DS yesterday at the store, and he was very fit and able at 56, as well as pleased to see Isaac and get a hug from him!  His mother leaned over and said “I think we’ve been given angels from heaven.”  :o)

Family news: We had a film crew come Thanksgiving week, as our older son is part of a documentary being made about adoption and attachment.  We so enjoyed the crew, as they were so kind and really a blessing to have in our home.  We just had a nice, pretty normal week, and they were the “flies on the wall.”  We look forward to seeing the finished project, and pray it helps at least one desperate parent and child!

Papa works hard to put bread on the table, and pay for our new house we started building last summer.  He plans to paint it next month, with a little help from the older ones.  Everyone enjoys running errands with him, and we appreciate his care of us, and when he takes us out to Red Robin, too!  He enjoys buying and selling planes, and flying them once in awhile, too!  Our second son has begun his flying lessons with him, so that was exciting to see him filling out his logbook and planning flights.  Before I know it I’ll be watching him solo, Lord willing!

Our third homeschool graduate is moving on to other things this year, so that was fun to celebrate.  She is an artist, and hopes to use her art to bring glory to God and bring others into His kingdom.  She is also interested in foreign missions and is thinking about Africa.  We have another graduate on the way next spring, and she is interested in neonatal nursing, so we’ve been researching that a bit this week.

Our oldest son got his first full-time job as a systems analyst.  We are so pleased that he will be using his skills and will be challenged and learn a lot as well.  The company seems a very good one that takes care of their people.  He is a junior in college and plans to continue his studies for his B.S. in digital forensics.

Our oldest daughter learned a lot and was blessed by a recent Christian writers’ conference she attended.  We decided to rent a cabin and had a lovely time together, getting about 3 feet of snow in the mountains.  It was just beautiful, and Isaac hiked all over with us.  We were glad we went prepared, with snow pants, etc.

We just finished school Thursday and the “middles” and “littles” (ages 11 down to 4) all are buzzing with their interests this summer – baking, building “houses”, gardening, riding bikes and scooters, singing, reading, playing games on the trampoline and X-box (thanks Grandpa!).  They also enjoy the “Torchlighters” series of missionary videos, but I tell them to get outside, as it’s finally warm up north!  (Last Friday I drove to singing practice in a hail storm!)

We are all looking forward to a plane trip out to PA this summer, where our good friends’ daughter is getting married – our older daughters’ friend!  It seems the older children have friends courting and marrying left and right. It’s a new season, and it’s fun to see all the older ones turning into wonderful young men and women, but to still have middles and younger ones to teach and enjoy, too.

It’s a rich, busy season, and one I won’t wish away!

Blessings,

Katie

I John 5:4

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Revisit to the Family Hope Center

It’s been such a busy year, that I haven’t posted about our first revisit to the Family Hope Center in May.  (Now it’s almost time for our next one!)

Isaac gained 4 months function in 6 months, and although he didn’t gain in terms of % function (as his peers would typically gain ~ 6 months function in that timeframe), he is doing very well.  He is at the 50th percentile for height and weight on the regular charts, and his energy level is great!

He is honestly one of my favorite people, such a joy to know and care for, making us smile and laugh throughout the day – and I really need that in this season of my life!  We’ve got some work to do socially, as this summer at a swim meet he just walked up to a table (not ours) and started drinking from someone’s cup!  Oops!  But people just seem to love him, and I’ve had a few that wanted to take him home – no way! 🙂

My older son with RAD, ODD, ADD, and developmental delays made great gains, jumping 3 grade levels in Reading and 2 grade levels in Math in just 7 months time!  Behavior and decision-making/logic skills improved, too, and for the first time he seemed motivated to get his work done so he could go play (something that is common in children, but was not with him in the past).

During the 2-day appointment, we got word that the searcher I hired had found his birthmother in Guatemala.  He acted indifferent (typical with him when it comes to relationships), but did want to see the pictures, and asks appropriate questions at times. We received a new program and started some work on laterality (right dominance).

In the spring I attended the “Empowered to Connect” seminar on Trust-based Relational Intervention, a parenting model for hard to reach children and teens from hard places (our son was neglected of food as an infant before he came to us). They have even had success with teens already in residential treatment centers.  We gradually implemented the strategies, and it seems a very good model for him.  I finally learned why he does everything he does (whereas before his behavior was such a puzzle), and have tools to deal with any situation.

In June we attended the Latin American Heritage Camp for Adoptive Families in the Rockies.  It was a fun time, playing games, meeting new friends, cooking some Latin foods, and talking about adoption, too.  The next week we traveled to Ohio to a family wedding and my family reunion.  It was another fun time, but without much therapy at all.  The FHC doesn’t recommend taking so much time off therapy, and I read later that children with RAD do better if a vacation is not more than a day or two!  Well, I love my son and certainly want to do my best to help him, but I/we must think of all the other family members, too.  It means some tough decisions to make at times.

It was after this that our son seemed to go downhill behaviorally.  The summer schedule was a bit more relaxed, but certainly still structured, and included his full program, if we could get it done.  He became increasingly defiant/resistant and violent at times.  Was it the heat?  Hormones? All the adoption issues that were addressed?  The vacation?  The new parenting model (they work at really connecting positively with the child, and that is what they fear, b/c of past neglect and/or abuse, so they can be very resistant, even though it’s done kindly and with respect for the child)?  Or a combination of these?

At one point we were having to restrain him daily.  It was so sad to see him so miserable, and not know how to help him.  All we could do was go on in what we knew best.  It was a very rough summer, but with the structure of the fall things got better.  The violence lessened to once a week, so we were much relieved.  Our eldest daughter is working for us this school year, so she works half days with him, and I work with him in the afternoons.  Since I was really overwhelmed from the summer, this was a real answer to prayer, and has taken much stress off of me.  I am able to teach the other children in the morning, and I have soooo enjoyed that!

Unfortunately, the defiance and violence have increased once again in the past few weeks, and I’m so worn out. My heart breaks for him, and it’s so hard to accept that we don’t seem to be helping him very much, if at all. 😦  I’ve shed so many tears, and prayed so many prayers over this situation. I’ve learned that I can work very hard at it, but I cannot force him to love or to accept our love.  And I cannot make choices for him.  In the past year, I was sure we had found the best brain program and parenting model for him.  We’ve had him annointed, but God has not healed him yet.  But I must just continue to do my best for him, and leave the rest to him and God.  I’ve researched a couple of other options/programs, but for now we will continue in what we’ve chosen, and wait to see how his next evaluation is at the FHC.  Then we will decide how to proceed.

We’d REALLY appreciate your prayers.  My prayer is that he would come to know Jesus, and that God would be glorified through his life.  Thank you!

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Down Syndrome Innovations Conference 2016

Just wanting to let people know about this upcoming conference to help you optimize your child’s potential (http://www.downsyndromeinnovations.com/)!

From:

http://www.downsyndromeoptions.org/

Sept. 16-17, 2016
Statehouse Convention Center

Little Rock, Arkansas

 

We are excited to share this one-of-a-kind opportunity to hear dynamic researchers, physicians, therapists and advocates present cutting edge translational medical research and interventions to improve the health, cognition, behavior and development of individuals with Down syndrome.

Make new friends and connections. Network with other attendees who share the common goal of exploring ways to enrich the lives of individuals with Down syndrome. Be able to speak face to face with expert vendors of supplements, quality service providers and try out innovative products for yourself.

Check out our conference website for details.

Feel free to join us on 2016 Down Syndrome Innovations Conference Event Page

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The Family Hope Center

sweetIsaac

Look how he’s grown!!!Isaac2

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In the last couple of posts I mentioned The Family Hope Center (FHC).  It was recommended by a friend who treated her son with the IAHP program  (The Institutes for the Achievement of Human Potential – http://www.iahp.org/).  She thought the FHC would be a better fit for our family, as they are Christians, and it is not as intense/strict.  My husband sent me to the 3-day training course on child brain development and helping your child with special needs, and there the staff helped me to create a program for Isaac and one of his older brothers, who has a lot of behavioral, emotional, and academic problems.  I went home and began the program, seeing results within a couple of weeks with both boys (see “The Dream” post, Family update section, for more info.).

The FHC also offers a 2-day medical evaluation of your child, but it was costly for us, so I didn’t even ask my husband about it.  When talking with a friend about it, she looked at me with a “ye of little faith” look, and said if God wanted the boys to go, He would provide the money.  I prayed and laid it down, not expecting anything or sharing my prayer with others.  Within 2 weeks I had 10 times the money I prayed for!!!  To God be the glory!!!

So in October we headed out east and spent 4 days at the FHC.  The boys were seen by doctors and therapists, evaluated in all areas of brain development (sensory, motor and social), and given a percent of function rating.  The second day we were given an individual program for the boys, and taught how to do it properly.  The goal is to reach as high a percent of function as possible for each son.  When we go back, Lord willing, the boys will be re-evaluated and we will see how much closer they are to 100% function for their age.  We will be given a new program based on their progress so far.  We have been working hard for over 2 months now, and I have especially seen great progress with my older son in all areas.  He actually tested at a lower level of function for his age than Isaac, so that shows the seriousness of his problems, and motivated me to do 100% of his program as much as possible.  I have seen Isaac progress, too, in his language skills, as well as motor development – you can see from the pictures that he is walking now!

The program takes about 6 hours a day, Monday through Friday, and includes my older son’s school, as well as a reading/language program for Isaac.  Isaac does about 3 hours, as he does not yet have the energy for more.  (Not that I have the energy or time for more!)  It includes specific programs for: Nutrition, Oxygen, Basic Brain Organization, Sensory stimulation, Developing Standards and Responsibilities, and Reading and Education, and it is all natural.  The boys saw an M.D./ nutritionist who evaluated them, recommended a specific diet and supplements, and gave advice regarding sleep, etc.  The FHC evaluation also included 6 months of follow-up, and I can call or e-mail any time with questions.  I will do an update report this month with videos, and they will make any changes necessary to the boys’ programs, also giving suggestions about how we can work more effectively.

I have been very impressed with the staff at the FHC.  They are professional and friendly, and are very encouraging and supportive along this journey to our sons’ wellness.  (They did not ask me to write this!)  They love children, and know they can achieve more through this program.  The directors, Matthew and Carol Newell, have been working in the field of child brain development for over 30 years, and they know what works!  I look forward to giving more updates in the future as our boys progress.  Matthew assured me that with this program Isaac would not need any extra help in school, and could keep up with his peers.  From what I have gathered from other children with T21 in similar programs, it is possible for them to “graduate” in 3-7 years, depending on the child and how much of the program we do.  Here is some info. taken from the FHC website (familyhopecenter.com).

“Our Approach: Why does my child do what he does? What is happening in her brain?
 The answers to these two questions are mostly a mystery to parents, who want and need a clear and factual understanding of what is happening in their child’s brain, where it happened, and what can be done to help their child develop, mature, and become all they can be. 
 At The Family Hope Center, our highly-qualified doctors and therapists evaluate your child’s neurological development from the brain stem to the upper cortex, pinpoint the location of the dysfunction in the brain, design and develop a highly-individualized, tailored treatment plan that specifically targets that area, and partner with your family through support, supervision and ongoing counsel.” 

 

Isaac/Family update:  Isaac turned 3 today!!!  He is more active since his thyroid is working properly, and continues to learn and grow, as well as being a joy to all. He is on the regular charts for weight, but his height and head circumference are still below the 5th percentile.  (Not that we have the tall genes in our family, my husband being shorter than some of my sisters, and my mother-in-law barely making it to 5 feet.)  He still has red cheeks quite a bit, too, so I plan to do an elimination diet to find out what the culprit is.

This week was Isaac’s first swim class by himself (not “Mom & Tot”), and he did such a good job sitting on the side until it was his turn with the teacher.  (I wish I had taken pictures, but felt I had to be watchful in case he decided to jump in suddenly, as he really likes the water!)  He would hold out his arms to his teacher, smile, and clap for himself or others at times.   The teacher was very kind and sweet with Isaac, and that really meant a lot to me.  I have to admit I was a bit nervous he may not be ready for the class (they are supposed to be 3, and he was just shy of 3 going into it), but I decided it wasn’t that important – it was okay if it didn’t work out, as there was no rush.  But it was actually another lady who had to take her son out of class for not obeying the rules!

As of late, Isaac enjoys practicing his new skill of walking, which makes me nervous when he’s anywhere near the wood-burning stove!  His favorite food is peanut butter, and he enjoys watching “Signing Time,” saying and signing “Leah” (the girl in the videos) about 20+ times a day!  He also likes giving his sisters a hard time at therapy hour; playing cars, animals and bowling with the younger set of brothers and sisters; having fun “boxing” matches with elder sister, and trying to play X-Box with the other children – so cute!

Since most of my school day is spent doing program with Isaac’s older brother, big sisters each donate an hour to do therapy with Isaac.  That has been such a blessing to me, as I’m desperate for older brother to be healed (or at least get to a much better place), but I do not want to short change Isaac.  And I’ve read with neurodevelopmental (ND) therapy that the younger you start, the more difference you can make.  The Family Hope Center staff thought older brother could graduate from the program in 1-4 years.  If it’s the latter, Isaac would not get much attention therapy-wise until he is almost 7, so I’m very thankful for the girls’ service!  Of course, I’m hoping that he graduates sooner, and am working to that end, but brain organization takes time.  A miracle would be nice, and I certainly believe GOD CAN do it if He wills! :o)  This season is not what I would have chosen for myself; I miss teaching more, but I have to admit the others are doing quite nicely with the independent learning.  (Thankfully we have a small house, so I am always right there to answer any questions the children do have, and I try to get some papers graded in the late afternoons.  Sharing the chores helps a lot; I schedule most of mine on the weekends.)  Bottom line: God always has a better plan than me, and I know it will be worth it in the end, for all of us!

We had a nice RV trip out east this fall, visiting friends and family on the way to the FHC.  The children enjoyed getting to know people we hadn’t seen in a while, and especially had fun at our friends’ dairy farm.  We wished we could have made more stops, but Papa only has so much time off of work!  One of our sons broke out with the chicken pox after our return home, and every one but elder daughter got it eventually, even Isaac!  So I guess he either didn’t have it in January, or he got it again.  Either way, it was a mild case and he came through it fine.

Our eldest son graduated high school and starts college this month, and big sister plans to finish high school this spring.  They both have a heart for missions, especially in Asia, so that is a blessing.  Although we’ve been hard at work with program for the 2 boys, we have enjoyed some nice family times, too.  Tonight we had a nice dinner and played a fun game together.  Our church is a blessing, too, providing some activities for the children and youth, reaching out, encouraging and supporting others through the trials of life, and rejoicing in the blessings.  I fractured some ribs after falling at ice skating last week, so I’ll have to do something to strengthen these bones, so I can keep up with the children!  I plan to swim with Isaac once he learns, as the heart doc said that swimming would be good for him.  Life is very busy, but I cherish these years, and am blessed by the relationships we are forming, and all that we are learning from each other.

May we say like Jesus, “Not my will, but thine be done.” (Luke 22:42)

Blessings,
Katie :o)

P.S.  Like most little ones, Isaac really enjoys the cell phone!

Isaac.

 

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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):

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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

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

 

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The Dream

Caution:  Parents may want to preview before allowing minors to read this post.

It was probably the second worst dream I’ve had in my life.

I’ll back up a little.  A few months ago I was watching some Christian movie trailers with my children, to see if we wanted to rent something to watch.  There was one about a teen with Down Syndrome, and her struggles with being accepted in high school.  I could barely watch the trailer, much less even think about renting the movie.  The visuals of someone being mocked like that just hit too close to home for me right now.  But it was soon forgotten in the busy evening with many energetic children. :o)

Then came the dream.  I was entering a large house or residential building where I felt instant tension.  Many sad, but “practical” parents were making a serious decision.  A decision to end the life of their young adult child, all of whom had Down Syndrome.  It was horrible.  But they were intelligent, logical people and making the best decision, they seemed to tell me.  One by one the parents led them upstairs, and to the end of their lives.  Then I noticed the siblings.  Weeping, terrified siblings who loved their brother or sister, begging for their parents to change their minds.  But it was not to be, in this dream anyway.

When I awoke, I thought “What an awful dream!  Why would I dream that?”  Then I remembered the movie trailer.  Even though it seemed to have a positive ending and promote acceptance of people with T21, it must have triggered the dream.

Later I realized that’s just how it is in real life!  “Intelligent,” practical parents making what they think is the best decision, BUT siblings who all want their brother or sister to live, and don’t care how many chromosomes they have.

That’s it.  I don’t know if God gave me the dream for a purpose or not, but…

here is a link to an online documentary/interview about abortion.  It is verbally graphic, but to make a point to help people see the truth.  (Please preview before showing it to children, though.)

http://www.180movie.com/

To God be the glory,

Katie

Family/Isaac update:  Well, I certainly haven’t posted once a month like I originally planned – I can’t believe it’s almost May!  Just busy raising children, and it’s worth it!  My 6-year-old said the other month, “I want another baby like Isaac; I want another baby with Down Syndrome.”  Sooo sweet and precious to hear.  They all adore him, and I have to ask them to put him down sometimes so he can progress physically. :o)  We got him on the thyroid (Nature Throid, then Liothyronine, too, when that didn’t kick in the energy level alone), but after 4 months we still didn’t see much more energy.  I finally got his iron up, and use quite a few other natural things recommended for thyroid, and the energy finally came in March, after weaning him off the meds.  I had started him on the GAPS diet (gut-brain connection) in Jan., along with his brother who has learning challenges, so that may have played a part.  I’m just glad he’s energetic now and not on meds.!

In March I attended the The Family Hope Center’s “How to Help Your Child with Special Needs” 3-day course in PA (similar to the neurodevelopmental program we were already doing, only more intense).  It was excellent, and despite all my research I still learned a lot.  After implementing the new program with my boys for just a couple of weeks, I saw some big changes.  Isaac starting creeping (we’d waited 15 months for this!), going over 30 meters the second day, even though he had only once or twice even gotten on his hands and knees.  His brother had my jaw dropped when he carried correctly by himself on all of his math problems one day – a huge change for him.  Yeah, we’re making progress!  He also asked some deeper questions that showed some real social maturity gains. :o)  Isaac is pulling himself up a lot more, too, and continuing with his swim lessons and reading program.  When he’s not crawling, eating or hugging, he’s usually reading books!

So, if you know anyone with challenges, whether autism, psychological, learning, genetic, ADD/ADHD, memory, stroke, cerebal palsy, etc., you might want to pray about looking into The Family Hope Center’s program.  They do not diagnose/label, but access your child (or teach you how to) and develop a program to organize/grow the brain as much as possible.  They deal with the root causes, actually causing change, not just using techniques to compensate or get around the disability.  They teach you how to implement the program at home, and their success rate is over 90%.  Here’s the link: http://www.familyhopecenter.com/.

Also, a neurodevelopmental program would be similar, but not as much time invested, and not as much teaching for the parents (in my experience).  Here’s the link to ICAN (International Christian Association of Neurodevelopmentalists): http://www.icando.org/.  You can look for ICAN members by state, to find someone near you.  We were with Hope and a Future (http://www.hope-future.org/) for 1.5 years and were happy with their services, but wanted something more intense to see even faster progress.  But this is an excellent option, especially for children who are in school, and therefore have less time at home to work on the program.

God made the brain so amazing, and it can heal and change.  Of course, we have to work hard, but He gets the credit. :o)

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Isaac’s Birth Story

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Isaac is 2 today, and since I’ve especially enjoyed reading others’ birth stories, I thought I’d share his tonight as he sleeps peacefully, along with the other 10. :o)

Actually, I believe his story started about 6 years ago, when God gave me the prayer, “Lord, help me accept what you have for us.”  I admit being a little nervous that there would be a problem with my next 2 pregnancies, but we had a healthy daughter and son, now 6 and 4 years old.  I realize now that God was preparing me for Isaac.  My husband and I decided at the beginning to trust God to send us the right amount of children, and we have never changed our minds or regretted it.  They are all such a blessing, we love each one, and we are excited to see how His plan unfolds for them to serve Him and witness to others about Jesus, including Isaac!

My pregnancy was quite normal, the usual morning sickness, an “everything’s okay” ultrasound at 6 months.  The tech happened to say “He doesn’t have Down Syndrome;  I can tell by his nose.”  Why did she say that, I thought.  I didn’t even ask.  My age (43), perhaps?  Oh, well.  We don’t believe in abortion anyway; we just wanted to see if everything was okay because we were planning to have our son in China, and would consider having the birth in the U.S. if there was a problem.

One night I realized I could still sleep comfortably on my back.  That’s strange, I thought, because usually by 6 months pregnant the baby was too big.  Well, in the busy weeks of preparing to move overseas yet again (buying school books and clothing, foods we might want in China, etc.), I didn’t spend time worrying about it.  My midwife was due to come to China for the birth, and I would do my prenatals (urine tests, measuring, etc.) by myself for the 2 months until she came.  Once settled in China in our new apartment in the city, I realized the baby was not measuring bigger each week.  I thought maybe I just didn’t know how to do it properly.  My husband and midwife (and myself, too, at times) said everything was probably fine, so I put it off for a few weeks in the busyness of caring for 10 other children and homeschooling, planning meals, taking supplements, etc. etc.!

One day I really started to get concerned, as I’d been measured dozens of times over the years, and surely I couldn’t be that off in my measuring.  I wanted an ultrasound, and my husband and midwife agreed that we should go in and just do as the doctor directed.  The scan confirmed that our son was only the size of a 23-week-old at 37 weeks, and there was restriction in the cord for some reason.  Had I come in a month earlier, they would/could have put me on hospital bed rest with IV to help him to grow.  No use living in the past now, although I was glad I didn’t have to go through that experience/separation from my children.  Come back in a week, they said, and see if anything is different.

I started researching that day, and haven’t stopped since!  I found that 80% of babies who are not growing in the womb have issues, 20% are okay in the end.  I told my husband this to try to prepare him, but he was not ready.  It was overwhelming to him, so I kept my research mostly to myself.  The night before the second ultrasound, I accidently happened upon a website for a hospital, while looking for directions to the one we were planning on going to (about 40 min. away).  They had a VIP floor that looked very nice, uncrowded and clean (unlike the regular Chinese hospital floors) so it was very appealing to me.  I asked my husband if we could just take a tour of it the next morning, and see if we wanted to go there instead.  (We did decide on this hospital, which was only 10 min. away, and later found out that my husband would not have been able to be with me in the birth at the original hospital, although they had told me he could.)  Although I was able to really reduce the cord restriction (by eating tons of raw garlic that week!), our son did not grow.  The risk of waiting was too great; we did not want to lose him.  The doctors recommended immediate admission and induction.  What started out as a tour, ended with the staff showing me my room and asking what I wanted for lunch.

I had never been induced.  I had heard it was very hard, however, things did not kick in right away, and they decided to try again the next morning.  One time the nurse came in and asked if I felt anything.  No, I said, nothing.  You’re having a contraction, see, she said, pointing at the wavy lines on the monitor, and giggled with the other nurse.  I guess after so many births with no meds., I wasn’t feeling this little guy move.  Things did kick in eventually, and at one point I was so weary, I think more b/c of my age than the pain.  The head doctor of the VIP ward was worried about the baby, saying sometimes his heart rate was falling during a contraction.  I knew this was normal, but she was pushing for a c-section, and I was weary and willing.  But at the same time I did not trust her.  I had put on my birth plan that we did not believe in birth control, and preferred not to be “counseled” about it, and yet she mentioned tube-tying 3 times, even after I told her how we felt.  Well, my husband practically begged me to wait longer.  Try the shower, he said.  That worked with the other babies.  Later, I found out that the night before he had had the same dream 3 times that I died during a c-section!  One of the many times I was very glad I heeded to my husband’s advice, even when it was hard at the time.

Well, as before the shower worked, and Isaac Emmanuel was born that evening (although I don’t think we officially named him until the next morning), bathed in the prayers of my husband and daughter (15 at the time) who were present, as well as the children at home, and many others whom we had contacted by e-mail when we realized there may be a problem.  (Of course, I don’t think of my son as a problem, but that extra chromosome does make some things more difficult in the body.)  I noticed Isaac’s head was flatter in the back and his eyes were more slanted than the others, maybe b/c he was born in China? :0)  My husband wasn’t worried about it, though, and remembered different head shapes are normal at birth.  I just tucked it away and focused on the present.

The doctor wanted to admit Isaac to the NICU right away, but when I asked why, he said just b/c he was small – he didn’t see any issues right then.  That night Isaac nursed some and slept soundly by my side, with the nurses coming in periodically to check his glucose.  By 3 a.m. they said he was just not keeping it up, so they wanted him to go to the NICU.  We insisted they give him glucose in the room; there was no reason he should be apart from me for that.  He should be nursing, we said, and unlike the U.S., they did NOT allow any parents in the NICU.  They would only give him oral glucose which did not work well enough, so the next day when my husband arrived, we agreed with much heartache to put him in the NICU on a glucose IV.  One administrator told me I would be able to go and nurse him, but when I arrived the staff would not let me in. 😦

That night was probably the hardest of my life.  My baby needed me, I thought, and my milk wouldn’t come for him.  Of course he needed formula then, which made me feel terrible.  I just could not stop crying, and was a wreck by the next morning.  My husband would bring a different older child each day to stay with me, and thankfully he brought the very quiet one that day.  She was a peaceful blessing (even though I had trouble enjoying the card games), and God knew just what I needed.  I needed to trust Him.  I needed to believe that He could take better care of my baby than I could. I needed to trust that He had us in this situation for a purpose that could bring more glory to Him.  I would stand outside the NICU and just cry and pray for Isaac.  They usually had the curtain closed.  Once it was open and we could see him, but when they saw us they closed it.  I felt that was so heartless, but they said, “People don’t want to see their children in this condition.”  I was not going to change China overnight, but I did “fight” to nurse/hold him at least one hour/day in an adjacent room.

It was a very frustrating experience, knowing that if I could just sit next to him and at least sing to him it would be good for him, but not being able to convince the staff of that fact.  He got pneumonia right away in the NICU, and each day it seemed they found a new problem.  It was so depressing, and we felt very out of control.  By now I was staying in a hotel right next door, and bringing milk a couple of times a day.

Then the Lord showed me that these people needed Him, and that it was more important than me being with Isaac.  If I was going to “fight,” but then give them a gospel tract (which I did at times!), that was not going to be a very effective witness.  I finally learned to put God first by putting these unsaved souls above my own interests/agenda, and THEN I had peace.

After a week, we decided with our midwife (who by this time had arrived in the country as planned) to take Isaac out of the NICU.  We felt he would be better off with me, and they just wanted to keep him longer for observation; they had run all their tests already.  They suggested going to the heart doc. in the next month or two, as they had detected some minor heart defects which could need to be corrected later.  Our midwife suggested that we go as soon as possible, as Isaac was a grayish color, and she was concerned but did not know what was wrong with him.  The doc could not get us in for 10 days, and she suggested getting oxygen for him in the meantime.  So we waited and prayed.  Isaac was too weak to nurse, as he tired out by the time the let down came, so I was pumping my milk and feeding him with a bottle.  How I longed to hold him instead of pumping, and those 8 weeks were so difficult I nearly gave up.  But when I saw how sick he seemed (he almost never cried and got colds, etc.), I just couldn’t bear to not give him the best milk available.

The next weekend the heart doc took one look at Isaac and appeared very concerned/worried.  He didn’t even run any tests, but suggested we get to the heart hospital in Shanghai immediately (but not by air).   He thought Isaac may die anytime and said the doctors in our large city were not good with small babies.  He said in Shanghai they would probably put him in the NICU immediately (Oh, no!), and keep him on meds. until they felt surgery safe.  He gave us a medication to hopefully prevent his death, and wished us the best.   We took Isaac on the high-speed train to Shanghai early the next morning.  Thankfully a wonderful young lady from our church in the U.S. came to stay with our children, just as our midwife had to leave to go back.

At some point I mentioned to my husband that there may be other issues, but he wasn’t ready, and wanted to get through heart surgery first.  Very understandable.  I kept researching.

The doc in Shanghai was not worried about Isaac dying at all, but said his aorta was not connected properly (Interrupted aortic arch), and he would need immediate surgery.  After more tests and waiting in a hotel (with Isaac – yeah!), the old head doc (credited with starting pediatric heart surgery in China!) said Isaac could fly to the U.S. for surgery if we wanted.  That was a very tough decision for me.  My husband was working and I was not able to reach him.  How I longed to go “home” to America and leave Chinese hospitals far behind.  But I did not want to leave my husband and other children, and we did not have insurance in the U.S. at this time.  Surely this would wipe us out, and we would be in debt for many years.  We did not like to have any debt, even a mortgage.  I did what I thought my husband would want me to and decided to schedule the surgery.  It could wait until after Chinese New Year, they said.  What!  That’s 10 days away.  What about “immediate” surgery?  Okay, Lord, we’ll trust You.

So back home it was.  More waiting, more trusting, more unknowns.  Would our baby live?  If God wants him to he will, and since I can’t sustain life anyway, I’ll trust Him who can!

The following weeked, while the last fireworks were still coloring the sky, I moved into the private room they had prepared for me, and the tests began.  Isaac was one day short of 6 weeks old at the time of his surgery.  I was so glad my husband was able to be there.  It was a very stressful day, with Isaac very fussy from not being able to eat for many hours, and all the pre-op preparations.  It was one long afternoon, but when that doc came in with a smile saying all of Isaac’s heart issues were resolved/repaired and he was doing “well,” that was such a relief, and we rejoiced that God had spared our son!  It was a long wait still (almost 3 weeks), and only seeing Isaac 2x in 10 days while in the CICU was heartbreaking, too.  Being away from my other children was even harder, but nonetheless I had sweet times in prayer, praise and singing to my Savior.  I know he has used the experience in all of our lives, to make us stronger – and more like Him, hopefully.

In my research I had found that 50% of babies who have IAA also have 22Q, a deletion on their 22nd chromosome.  I thought Isaac may have this, and when he was 4 months old and fully recovered from heart surgery, I asked my husband if we could just get a blood test.  I felt I needed to know to best care for Isaac.  The Chinese geneticist was a Christian, and shocked me when she called to say Isaac had Trisomy 21.  I began research in earnest again, and have learned so much.  But I’ll save that for another post!

Today Isaac is a joy, and we all love him.  He has been army crawling for a year, has thyroid issues and speech challenges, but he’s our son, and we are glad God made him.  Is it hard?  Yes, it has been very hard, but worth it!  God loves children/people, and we do, too.  I am really looking forward to seeing all the ways in which God will use our little man.  I pray often that he will be a soul winner most of all, bringing people to Jesus – people that I will see in heaven because of my son, because we had faith in Him who doeth ALL things well.  “For whatsoever is born of God overcometh the world: and this is the victory that overcometh the world, [even] our faith.”  (I John 5:4)

The main message:  Trust Him.  He has a plan for you.  Don’t fight it.  He can use it to bring others to Him and glory to Himself.  Be a willing part of it with a joyful heart.  Remember, He will be with us in the fire.

Faith is the victory,

Katie, for JESUS (and for Isaac)

P.S.  A great big “THANK YOU!!” to all of you who prayed, e-mailed and cared for us during our difficult time.  I also want to thank my husband and children for their love and sacrifices for Isaac and I.  May the Lord bless you all for your service. :o)