Lately I've had some time to reflect, there have been some moments of significant frustration as of late. It has been clear in my postings. I recognize these periods for what they are, spiritual attack, disobedience, selfishness, call it what you like, but they are moments I'm not proud of. Don't get me wrong, we celebrate life at our house, we can see "the forest from the trees," but sometimes the earthly, fleshly warrior takes center stage and distracts me from the ultimate goal. We've learned that as much as we'd like to see the "roadmap" for Parker, only God knows the plans he holds for Parker (or any of us). We are reminded to live TODAY, because tomorrow isn't promised to any of us. Rick Warren's devotions last week were on the "decade of destiny." Love what he says about realizing that life is a test. And nothing is insignificant in life.
"Over your Decade of Destiny, you will be tested by God as he develops your character, faith, obedience, love, integrity, and loyalty.
Words like trials, temptations, refining, and testing occur more than 200 times in Scripture. God tested Abraham by asking him to offer his son Isaac. God tested Jacob when he had to work extra years to earn Rachel as his wife.
Adam and Eve failed their test in the Garden of Eden, and David failed a test from God on several occasions. But the Bible also gives us many examples of people who passed great tests, such as Joseph, Ruth, Esther, and Daniel.
Character is both developed and revealed by tests, and all of life is a test. You are always being tested. God constantly watches your response to people, problems, success, conflict, illness, disappointment, and even the weather! He even watches the simplest actions such as when you open a door for others, when you pick up a piece of trash, or when you're polite toward a clerk or waitress.
We don't know all the tests God will give you, but we can predict some of them, based on the Bible. You will be tested by major changes, by delayed promises, by impossible problems, by unanswered prayers, undeserved criticism, and even senseless tragedies. In my own life I have noticed that God tests my faith through problems, tests my hope by how I handle possessions, and tests my love through people.
A very important test is how you act when you can't feel God's presence in your life. Sometimes God intentionally draws back, and we don't sense his closeness. A king named Hezekiah experienced this test. The Bible says, "God withdrew from Hezekiah in order to test him and to see what was really in his heart." (2 Chronicles 32:31 NLT)
Hezekiah had enjoyed a close fellowship with God, but at a crucial point in his life God left him alone to test his character, to reveal a weakness, and to prepare him for more responsibility.
When you understand that life is a test, you realize that nothing is insignificant in your life. Even the smallest incident has significance for your character development. Every day is an important day, and every second is a growth opportunity to deepen your character, to demonstrate love, or to depend on God.
The good news is that God wants you to pass the tests of life, so he never allows them to be greater than the grace he gives you to handle them (1 Corinthians 10:13)."
Taylor is stealing the show for pictures this week. Cotillion Ball. Wow, where did the time go, my "baby boy" looks like such a young man. And a handsome one at that...no comments on my "bird mask" please :)
Obviously I have failed the 31 for 21, but that is OK! :)
today's post is really more about celebrating Madeline than DS...her 7th birthday was the 22nd, Parker turned 17 months on the 23rd. So, two special kiddos with two special days! I am humbled by the joy all of my kids bring to our lives. God has richly blessed me with an amazing family and while these kids bring me to my knees daily, they remind me that children truly are a gift from God. We had a terrific party at the ice rink yesterday and I am struck by how much she looks like I did as a young skater(go check my FB page for old skating pics). The ponytail hair and even the face looks a bit like me! This morning they girls and Dad were up and out the door by 6:30am for a swim meet..never a dull moment at this house...the boys and I are about to head out too...
I have failed at my 31 for 21, haven't been able to keep up with the daily posts..work is busy as is daily life and that is a good thing. Today's post is just pictures...Parker in his PJ's early this am...still a bit sleepy, but not sleepy enough to leave the cat alone. He's kissing the cat in the last picture! Shane is the best cat EVER, Parker loves him, but he's not gentle in the least bit. Shane just lets him tug away...Parker calls him "sitty" So cute!
The annual blood work for children with DS seems to have quite the disconnect..the recommended blood work is a CBC and thyroid check annually although I actually had the DS clinic tell me that they wouldn't check Parker's CBC again until adolescence unless there was an issue(CBC is checked for leukemia). These people are the experts? Hmm.. Here is what I have learned is REALLY required. Chime in if I am missing something..
CBC with Differential Tissue Transglutaminase Antibody Ferritin, Serum Homocysteine, plasma Iron, serum Selenium, serum Thyroxine (T4) free Thyroid peroxidase antibodyinc Thyroid antithyroglobilin antibody Thyroid-stimulating hormone (TSH), high sensitivity Tri-Iodothyronine (T3) Vitamin A, serum (protect from light) Zinc, serum (zinc free tube and needle) Vitamin D
I took Parker yesterday to have this blood work done. He's had CBC and thyroid twice this year, but last time in July I noticed TSH was rising(Dr said it was fine), so I added those back on the list. We already have an appointment in January to see the pedi endo regarding the thyroid, but you know me, can't leave well enough alone. I want to see where that thyroid is now. Make a note, this isn't for the faint of heart....this list is 9, yes, NINE, vials of blood. It took three different sticks to collect the blood and more than an hour. Parker cried at the initial sticks, but after that he chatted and made "sweet eyes" at the phlebotomist. Boy knows how to work the ladies already! She was ready to keep him and take him home with her. Another note to self, ALWAYS go to a lab that deals with kids on a regular basis. We've done blood work at labs close to home to save me driving...there is a clear difference using someone that has pedi experience. Even though it took a long time, it went MUCH smoother than the adult clinics and we took MUCH more blood than I've ever had drawn!
When we first learned of Parker's dx we did what most folks would do...we searched the internet...most of which leads to the depressing, outdated info, BUT we found some fantatic sites that I HIGHLY recommend to new parents. You'll be surprised, they aren't the National Down Syndrome Center or the local DS Chapter. Some of I have linked to in previous posts, but here is the "short list"
www.einstein-syndrome.com Miriam has a fantastic letter here that I send everyone I meet to now..I wish I had someone give this to me when Parker was initially diagnosed..her top 15 things a new parent should know is terrific!
the weekends are sacred around here..the weather could not be better...finally a break from the oppressive humidity..still in the 80's, but "fall" is in the air!
My heart bursts when I watch Parker with the kids..the love they have for him and vice versa...this afternoon the girls rode bikes in the culdesac and took turns riding with Parker in the wagon..no schedules, no activities this afternoon and best of all Dad is home. All is right in the world. No comments about the outfits..the girls had been in the pool, so fogive the mismatch :)
THIS is the face of Down syndrome..could it be more beautiful? I don't think so!
in a nutshell, it is everywhere and it affects everything! Thyroid disease plays a major role in just about every function in one's body. It is no different in the child with DS. In fact, hypothyroidism is a condition that is MORE common in children with Down syndrome. Consider these facts from Mary Shomon AKA the thyroid "guru" http://thyroid.about.com/cs/testsforthyroid/ht/interpretresult.htm
"Hypothyroidism is typically diagnosed by a combination of blood tests (including TSH, Free T4, Free T3, and thyroid antibodies), clinical examination, and evaluation of the symptoms. The clinical exam looks for slowed reflexes, enlarged neck, puffiness in the face, swelling in the hands and feet, and other symptoms of hypothyroidism. Some key risk factors for hypothyroidism include a personal or family history or thyroid or autoimmune disease, recent pregnancy, female gender, and Down syndrome, among others. Symptoms and risk factors in addition to Down syndrome in infants include: infant drinks soy formula infant has family members with thyroid or autoimmune disorder infant has puffy face or swollen tongue infant has horse cry infant has cold extreme ties infant has mottled skin infant has low muscle tone infant is not eating well infant has course hair that goes low on forehead infant has large soft spot infant has prolonged jaundice infant has herniated bellybutton infant is lethargic infant sleeps most of time infant seems tired even while awake infant has persistent constipation infant is bloated or full to the touch infant has little to no growth
So, seems easy to address, right? Problem is most Dr's don't treat the thyroid if it falls within "normal" range. We parents don't ask for copies of labs so we can read them ourselves and do the research and ask questions. The "normal" range isn't normal and quite frankly the studies show when TSH is over 4 it should be treated.
Take the time to do the research and see a specialist. It is too important to take the lab at face value.
and we aren't just talking about Activia folks...probiotics are ESSENTIAL for kids with Down syndrome. We didn't know this before Parker's surgery. By luck (really God's grace) I landed on this right after Parker's surgery and we had heavy doses of Probiotics started immediately after surgery. Antibiotics are necessary, but they create havoc on the gastrointestinal tract which in turn causes a host of issues. It will cause bacteria and yeast to thrive. Common medical practice is to give drugs when gastrointestinal issues arise, but the more natural and safer way is to use probiotics and enzymes. Parker wasn't have GI issues as many kids with DS do, but I am so glad we started probiotics when we did. As an aside, the rest of family started them too. One of our daughter's who has had chronic eczema (and we have seen every specialist know to man, tried every RX under the sun, you name it we tried it)..suddenly it went away. DUH, it was a yeast overgrowth manifesting itself in her skin. I shudder to think of all the money I wasted on a simple answer.
What are probiotics? The term comes from the Greek "for life." When injested these living microorganisms replenish the microflora in your intestinal tract. Even science embraces the use of probiotics. Here are some intersting facts from Dr. Mercola: -About 80% of your immune system lives in your gastrointestinal tract -500 different species of bacteria live inside of you -about one hundred trillion bacteria live inside you - more than TEN TIMES the number of cells you have in your whole body
Here is a summary from one of my favorite internet resources. This group is an informed, armed, researched group of men and women. The site is top of my list on internet resoures for new parents (post to come another day)
Probiotics After dealing with serotonin, a second step is to provide healthy probiotic bacteria to populate the gut wall. Until the last century food preservation and storage involved extensive use of cultured foods. Sauerkraut used to be cultured. Cheese was made with bacteria. Apple cider was cultured into hard cider and vinegar. Every people in the world had ancient food preservation techniques which involved foods filled with friendly bacteria. When a new baby was given these native foods, the baby’s gut received its starter cultures for a lifetime of health.
Nowadays, our foods are sterile. Cheese, cider, sauerkraut and other traditionally cultured foods are pasteurized before sale. Unless we are intentional about it, friendly microbes may may be introduced late or never to our babies’ guts. If I had it to do over again, I would have begun giving my daughter probiotics, sprinkled on her tongue, from her first days of life.
The widespread use of antibiotics is also causing problems. Babies with DS can expect to receive multiple courses of antibiotics in the first years of life. These drugs are not specific; they kill both friendly and unfriendly bacteria. However, they do not kill yeast. This leaves the unfriendly yeast with no resistance to moving in and taking over.
The result of yeast overgrowth can be lesions along the wall of the colon. Through these lesions, partially digested food escapes into the bloodstream, leading to a host of illnesses and allergic reactions.
So, the second step to keeping the gut healthy in DS is to provide plenty of probiotic foods and supplements, and to limit the use of antibiotics. If you must use antibiotics, follow immediately with a course of probiotic supplementation
We knew that the ears were critical to speech and language, but were naive when the Drs told us the newborn hearing test was enough. The recommended schedule is annually (sometimes 2x's a year) which seems appropriate. What we learned at about 10 months is that kids with DS often have ear problems, but since they have a high pain tolerance they don't present with symptoms. I have met many a Mom that had no idea their child had ear infections! I have met several moms who kids had SIGNIFICANT hearing loss and they had no idea! Obviously this poses a problem on so many levels.. So, we started seeing the ENT every 2 WEEKS for tympanagrams. I realize many of you are saying "well, that is only good for that period of time," and you are correct, but by having such high frequency it gave us the ability to see what Parker's ears were doing and we did 6 months of that many trips. I am happy to report he has had no issues. It gives a great baseline for you and if nothing else peace of mind. We don't see the Dr each visit, but the audiologist and it isn't considered a "full co-pay" visit by insurance. Depending on your plan obviously, but we pay $50 for a specialist office visit, when we go for tymp. only we pay $20. Ask your pedi if he/she can perform the tympanagram as well. In our case the ENT is closer, so it is easier. If you are using an osteopath, they may be able to perform the test as well.
We learned that often what appears to be a problem with vision (eyes crossing, drifting away, inability to coverge properly, etc..) is usually FIRST and FOREMOST an ear issue! Many times we are quick to think that the kids need glasses or correction, but we should check ears first! We learned that the open mouth or mouth breathing can again often be contributed to an ear issue.
Be forewarned, the medical community will be quick to dismiss this, but like everything else, you have to be your child's advocate. It has too high a cost if you just take their advice at face value. Do your own research and get educated. In our book, speech and language is another top priority! We will do everything we can to keep Parker's ears (and overall body health) as perfect as possible.
Here is an excellent article to read, one of many...
I realize it is almost 9pm on day 3 of my 31 day challenge..technically it still counts! We were in Dallas today for Parker's NACD eval. There and back in a day, WHEW!
Oral motor...CRITICAL! And don't let them tell you it isn't necessary until they "talk." We had several Drs (even the specialist at the local DS clinic tell us 2 years was early enough). We started at 4months and it ranks close to the top of "do this right away ". My Dr. didn't think it was necessary, but wrote the RX because he knew I wasn't going to back down. Find someone that will honor your request for the RX. Talk to them about the research and tell them politely you appreciate they don't think it is necessary, but you want the RX order written. People often ask, "what can you do with a baby?" But, there truly are things that are of benefit and sooner rather than later. We started with a series of about 5 exercises in the mouth and cheeks and have continued to add things over the months. Palatel stretches are important, you've heard the comment that kids with DS have high palates. Guess what they really don't and if you start soon enough you can help stretch and mold the area. We did lip rounding and stretching as well as bite and roll tubes as Parker got older. Oral motor helps prevent tongue protrusion and we learned how to prompt Parker's tongue back in proper resting place if he wanted to push it out. Contrary to what most think, you should not push it back in! That builds the muscle and can worsen the issue! We do oral motor at home at every diaper change and feeding. Parker never minded the stretches and always complied easily. We keep a box of gloves handy and use them when we stretch his mouth. I will admit it got interesting when he got more than one tooth, but we still get them done! Oral motor is different than speech therapy although some ST's do have the training.
Climbing is a new favorite activity..here is Parker tonight climbing couch and yesterday on the dog gate...SIGH! :)
I realize many that read this will disagree and I respect those who feel differently about "changing" our kids that are born with DS. I struggled too when I first researched the protocol (not with the supplements, but the gingko gave me pause and the RX gave me more pause). Know that it took lots of prayer and conversation to get me to the place of comfort. BUT, I wish I had come to this place WAY sooner in my journey. I had to accept the brutal true that DS is a degenerative disease and that the very presence of that extra chromosome in every cell of their bodies reeks havoc. I'm just not comfortable letting that time bomb tick away. As far as "changing" his personality, I totally disagree. He is able to concentrate, make memories, and learn. Are we supposed to deny our kids that? I don't think so. I think we are called to help our children in any way possible. My goal is to give him freedom and independence. Here is what I know, if something could HELP your child, why would you deny them that? For example, Parker was born with a heart defect. Did we think twice about repairing it? Certainly not. Without repair he would have died at some point. Maybe it isn't so black or white, but here is another example...my oldest son needed braces. His teeth were not straight. So, are we to leave his teeth crooked? Just because God made him that way? I don't think so. We of course straightened his teeth! I know many will argue their kids are doing great (I felt the same), but ask yourself this..how many older children and adults with DS are doing well? I know there are about 10 mentioned all the time in the mainstream DS community, what happened to the other 300,000 or so? Here's food for thought, what not try it out and see what happens? You can always quit if it causes problems...
Please consider making a donation to help fund research. After all, it is Down syndrome awareness month!
ND Therapy...another thing to put in the "why didn't I know about this sooner?" camp..I didn't even HEAR about it until Parker was 8 months old. He was 10 months old by the time I applied to the program, had his initial evaluation, and we started his program. Yes, it is HARD work, it is time consuming, but we were already spending every waking hour working with Parker on "play," so this really isn't any different. Instead it is "productive play with a purpose." It isn't for the faint of heart, it takes, frequency, intensity, and duration to be successful. It takes organization and a commitment of time. It also takes faith. Faith when the results don't come automatically, faith when it seems like it is all for naught, but isn't that what the Bible teaches us? We are to live by faith, not by sight. There are days when I feel like giving up and quitting, but we continue to persevere and it is one of those things I think EVERY new parent should invest in. We chose NACD, National Association of Childhood Development. www.nacd.org
They have a proven track record of success not only with brain injured children, but "typical" kids as well. Check out their DS site and see for yourself. http://downsyndrome.nacd.org/index.php
We started private therapy at 4months with Parker. I demanded oral motor therapy even when I had no clue what I was doing and no one believed it was necessary until he was 2 (I kid you not and these were the so called "specialists"). We did OT too, but I never felt 100% that I had the right "homework" if you will. The oral motor I did had specific exercises for the mouth which I believe made a HUGE difference in Parker, but the OT was very unclear. NACD gave me specific items to address from the OT, ST, and PT realm. All very detailed and very specific. Again, can't stress enough how I believe this should be a part of every new parents regime. In an ideal world more private therapists are trained on these techniques, but ultimately the parents are responsible and they need to be educated about these therapies NOW rather than LATER.
We still do private therapy as well. We finally located the "specialists" here too, took us 4 months to get on their schedules, but we haven't looked back. They have over 25 years working with kids with DS. No, they aren't covered by insurance either, but it is an investment we are willing to make. Guess what? They have ND training too. Go figure.
When we first found out about Parker's dx we did what most normal folks would..we went into research mode...I will address internet sources another day..today, I will focus on books. I searched high and low, went to every bookstore know to man and bought every book I could find. The DS Houston chapter sent me a book too. What I found was these were the MOST depressing, unhelpful books. Even "Gifts" that has beautiful, touching stories about families with DS kids wasn't enough. I wasn't ready to read these stories, I cried through most of them. Babies with Down Syndrome which is touted as "the" book left me depressed and confused. It took me almost ONE YEAR to find the three I am about to recommend...I am still reading and re-reading these books, but I think they should be required reading for every new family. See if you don't agree...
Day One of 31 day post...I have been documenting so much lately and making a "new Mom" handbook or maybe a better title would be "Things I wish I knew sooner.."
The facts are there, DS is a neurodegenerative disease. A dx of DS DOES mean at some point the presence of that extra 21st chromosome WILL appear and the results will lead to early alzheimer's. DO the research, ask your Dr., even the mainstream medical Drs agree. While no one knows when it will appear, there are things one can do from a nutritional supplementation. I recently learned about Tumeric/Curcumin and Parker is now on that supplement as well. Interestingly enough it might be of interest to the general population as well. Below is some info from Dr. Mercola. Check him out, he's a wealth of good info. By the way, he's not my only source... While I know that integrated medicine is in its infancy stages, I also know that Biblically we had these guidelines in the Old Testament. While there may not be 100% proof, the evidence is compelling enough. Besides, when it makes you feel better, what is the cost?
"..Meanwhile, turmeric appears to be highly protective against neurodegenerative diseases. In fact, in India levels of neurological diseases such as Alzheimer’s are very low, and studies have shown that curcumin can slow the progression of Alzheimer’s in mice. The compound has also proven capable of blocking the progression of multiple sclerosis.
Further, Professor Moolky Nagabhushan from the Loyola University Medical Center, Chicago, IL, who has been studying turmeric for the last 20 years, believes that turmeric can protect against harmful environmental chemicals, and in so doing protect against childhood leukemia. The research showed that curcumin in turmeric can:
•Inhibit the toxicity of polycyclic aromatic hydrocarbons (PAHs) (cancer-causing chemicals in the environment) •Inhibit radiation-induced chromosome damage •Prevent the formation of harmful heterocyclic amines and nitroso compounds, which may result in the body when eating certain processed foods, such as processed meat products •Irreversibly inhibit the multiplication of leukemia cells in a cell culture
Turmeric's volatile oils also have external anti-bacterial action. As such, they may help prevent bacterial wound infections and accelerate wound healing. Johnson & Johnson even sells a curcumin-containing Band-Aid in India!
And the therapeutic potential of turmeric and curcumin do not end there. Evidence suggests the spice may also be beneficial for:
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.Jeremiah 29:11 Our unexpected journey with Down syndrome, babies with heart conditions, T21, and AVSD.
Lara, 40 year old wife to Michael (married 17 years, best years of my life)! Mom to 4 wonderful kids! Taylor, 11, Mallory, 8, Madeline, 6, and Parker born 5/23/09. We found out after delivery Parker has Down syndrome and a complete AVSD. He was scheduled to have open heart surgery at 4-6months, but God intervened! His surgery was postponed until July 2010 and God healed his VSD hole in the process. So, on July 20, 2010, Parker had open heart surgery to repair his transitional AV canal defect. He was in ICU for less than 24hours and home in 72 hours. We never looked back! I own an Executive Search Firm focused on Accounting/Financial placement (used to work in Big 4). Actively involved in my kids activites and school; all are competitive swimmers and son Taylor plays tournament baseball. Girls do tumbling as well. Avid runner and boot camp fanatic. Used to be a competitive figure skater growing up. LOVE to shop, ebay/etsy crazed, addicted to Starbucks non-fat lattes, a child of the KING, thankful that we are saved by faith and grace!