more steps.....

I edited the longer clip, VERY dark, I deleted the commentary..this is for the relatives to see! I will work on better quality I promise! Watch closely the 4-5steps are the darkest (or course) and happen close to the beginning. Shows you how determined Parker is!!

I fixed yesterday's videos too, this is what happens when you don't "check your work" LOL.

Make photo slide shows at www.OneTrueMedia.com

Baby Steps

it has been a BIG few weeks in our house!!! I haven't had time to post, but here are our MAJOR milestones!! STRAW drinking!! And I don't mean a sip, we can do an entire cup with no issues!! As many of you will remember this has been a challenge, Parker has been able to straw drink since 14months, but would only take 1-2 sips and then spit the liquids out. We tried every technique, had eval after eval to only be told he had no issues with his lip closure, tongue thrust, or swallowing, just that he was "stubborn." Gee, why am I not surprised? But, a few weeks ago when presented he drank the drink in its entirety!! Talk about the joy of the small things...we never used bottles w/Parker, so this is BIG! Let's just say we love the new independence! Bigger news....he's walking!!! Each day we make strides and we aren't perfect by any means, but it is walking! This clip is of last week when he started standing up everywhere unassisted. It was funny, when I first noticed him doing it, I was cooking in the kitchen, he was behind me practicing over and over again. He only takes one step in the clip , but trying to get a video is next to impossible! I have a 3minute one with 6 steps, but the commentary is typical of our crazy household and the color terrible. I will work towards a better internet worthy video for the masses. Again, who knew this would take 8 long months!! He began pulling up at 14months and started cruising shortly after. Everyone knows we have pushed cross pattern crawling with him for brain organization, but let's admit it, it is hard when all people do is ask if he's walking! WHEW!!! What is interesting is he went from one step to multiple steps, so it seems now that he's "got it" he will move quickly into a full on run (we hope or not)! clip 2 shows how fast he can crawl, no wonder the child has taken so long to walk, he's speedy! People always comment on how FAST he is! And I really don't think Mallory meant to hit him w/the ball, but listen to Parker laugh when she does!

Parker had the privilege of doing a photo shoot for a photographer trying to take her photos of DS kids National. Here is his premier. He is also being used in the DSRTF direct mail piece for fundraising. That I will save for another post, they are doing some fantastic things to raise funds for DS cognitive research, if you haven't already, go to their site and get connected. www.dsrtf.org All for now,

Photo and video editing at www.OneTrueMedia.com

No wonder the days seem so short..

This post isn't to complain, nor is it to make people feel sorry for us...I keep feeling like I don't have a minute to myself and the days are over before they begin. So I sat down to figure out where I am going wrong...I'm in a quest to shed our lives of the unnecessary and be sure the priorities get completed each day. Here is a snapshot of the last two weeks, interestingly I could take any 2 weeks and they'd look the same..all of these appts are for Parker ONLY..

6 visits to therapy - 1 hour appts, 40-50 minute commute roundtrip
8 visits to Drs - specialists, pedi, holistic MDs, naturopaths, osteopath-average length of visit - 1.5 hours, again 40-50minute roundtrip commute on EACH visit
2 visits to nutritionists - 1.5 hour visits
1 feeding evaluation - 2 hour eval - 40 minute commute
1 trip to lab for bloodwork - 1 hour, at least 10 mile commute

Add in after school activities for the other three kids, practice, games, and homework and NO WONDER I get nothing done! Parker's ND program takes at least 1.5 each day, add in one nap, cooking dinner too...

Oh, and for the most part about 15% of these visits are covered by insurance. And the ones that are require me to spend at least an hour a day fighting to get reimbursed correctly. Which leaves very minimal time to get work done (double edged sword since all of this costs a LOT of $$) except for early hours and late evenings.

So, please forgive me if I don't respond to your calls or emails promptly or if I totally "flake out" sometimes. I know this is a BIG change as I always was on time (early even) and the first to respond. I love each and every one of you so much, but need your grace these days. Family has to come first(right after Christ) and meeting their needs is my top priority!

I'm posting this for other Moms experiencing the same things, know you aren't alone!

Sorry no pics this post either..no time for pics, promise next post, PICS!!!

XO

Curcumin

Today's post is about curcumin...Parker is on several supplements, but curcumin continues to show benefits for all of us. I've started taking it as well, don't get me wrong, I'm not encouraging you to run to GNC or Whole Foods and buy tons of supplements and do believe if you CAN get them from food sources it is always best, but who can possibly eat pure all the time? This is a MUST do supplement as far as I'm concerned, but be forewarned the "yellow kitchen" syndrome is true, it stains everything, fingernails too. Google benefits of curcumin and see for yourself, I've given a quick summary(Dr Mercola) below:

"Curcumin—One of the BEST Supplements for Many Cancers Too!

....If you want to use curcumin to prevent stroke I believe your best strategy is to use it as a food in the form of turmeric. However if you have a severe illness, like cancer, then it is best to use it as a drug at a much higher dose as described below.

Dr. William LaValley from Austin Texas is one of the top natural medicine cancer physicians I know and he recently shared this important information on curcumin, which has the most evidence based literature for use as a cancer support than any other nutrient.

Curcumin affects more than 100 different pathways once it gets into the cell. Interestingly this also includes the metabolite of curcumin and its derivatives, which are also anti-cancer. Best of all, curcumin appears to be safe in the treatment of all cancers.

In India where turmeric is widely used, the prevalence of four common U.S. cancers -- colon, breast, prostate and lung -- is 10 times lower. In fact, prostate cancer, which is the most frequently diagnosed cancer in U.S. men, is rare in India and this is attributed, in part, to the curcumin in turmeric.

Numerous studies have looked into this potential cancer-fighting link, with promising results. For instance, curcumin has been found to:

•Inhibit the proliferation of tumor cells
•Inhibit the transformation of cells from normal to tumor
•Help your body destroy mutated cancer cells so they cannot spread throughout your body
•Decrease inflammation
•Enhance liver function
•Inhibit the synthesis of a protein thought to be instrumental in tumor formation
•Prevent the development of additional blood supply necessary for cancer cell growth
And, according to researchers from the University of Texas M.D. Anderson Cancer Center, curcumin blocks a key biological pathway needed for development of melanoma and other cancers.

The spice actually stops laboratory strains of melanoma from proliferating and pushes the cancer cells to die by shutting down nuclear factor-kappa B (NF-kB), a powerful protein known to induce abnormal inflammatory response that leads to an assortment of disorders such as arthritis and cancer.

To get the full benefits that curcumin has to offer, you will want to look for a turmeric extract with at least 95 percent curcuminoids that contains only 100 percent certified organic ingredients.


The formula should be free of fillers, additives and excipients (a substance added to the supplement as a processing or stability aid), and the manufacturer should use safe production practices at all stages: planting, cultivation, selective harvesting, and then producing and packaging the final product.

Details on How to Use Curcumin
The unfortunate challenge at this time is that good formulations of curcumin to use in cancer still aren't available. This is because relatively high doses are required and curcumin is not absorbed that well. Typical anticancer doses are up to three grams of good bioavailable curcmin extract, three to four times a day.

One work-around for this is to use curcumin powder and make a microemulsion of it by combining a tablespoon of the powder and mixing it into 1-2 egg yolks, and a teaspoon or two of melted coconut oil. Then use a high-speed hand blender to emulsify the powder.

Another strategy to increase absorption is to put one tablespoon of the curcumin powder into a quart of boiling water. It must be boiling when you add the powder as it will not work as well if you put it in room temperature water and then heat the water with the curcumin already in it. After boiling it for 10 minutes, you will have created a 12 percent solution, which you can drink once it has cooled down. The curcumin will gradually fall out of solution over time and in about six hours it will be a 6 percent solution, so it is best to drink the water within four hours. It does have a woody taste.

One caution to know is that you want to avoid the "yellow kitchen" syndrome. Curcumin is a very potent yellow pigment and can permanently discolor surfaces if you aren't careful."

conquering your fears

I have always been cautious about things...I like to research and be assured things are "safe" before I do them. I also am highly competitive so "trying" things that I perceive I won't be the best at isn't really my style. I'm also a worrier. Not that any of this surprises anyone. It is a constant battle Satan plays with me, I know it, but still many times he gets the best of me. I decided after this last trip it might be worth reviewing a few things I am fearful of..

white water rafting..we went to Canada a few years back and I was part of a white water rafting experience. let's just say while I survived it wouldn't be the first thing I'd run back to do. Believe the guide when they tell you the water is arctic cold and will paralyze your throat if you swallow it. note to self, sit behind larger people as they block the wall of water that comes at you. Do not sit in front of boat, do not wear contact lenses even if you are blind like I am. I can check it off the bucket list though..

I hate boats. I get motion sickness and I can think of nothing worse than being stuck on a boat. The thought of a cruise terrifies me.

I also hate small spaces. I can convince myself that an elevator is too small sometimes.

I am afraid of heights. I'm OK flying since we fly so often, but I don't like watching from the window down, I usually draw the shade if i have a window seat.

I don't like riding jet skis behind my precious hubby at 60miles an hour on choppy water.

I love animals, but prefer to touch them at Sea World where they do not have their parts intact. In Cayman, the big thing is to go to Stingray Island and pet the stingrays. As you will see I did venture out and touch the stingrays, but the motivating factor was the anchored boat which was rocking so bad back and forth it was sickening. This was an experience like no other, these things come at you like sharks in the water. Frightening! The men seemed much braver for some reason, check out my hubby, the stingrays get excited and flop all over you...I had the guide hold the stingray. Yes, they feel like a squishy mushroom.

Snorkeling - we hadn't done this since our honeymoon 18 years ago. We started at the beach and the reefs and fish were amazing. At the beach all I could hear was my breathing, sounded like Darth Vader. Then out in open water which was even better. I learned that a lifejacket makes the experience so much better. I have new appreciation for the swimming skills my kids have. I learned that as much as I run and workout, I have no swimming skills.


But, there is value in conquering your fears. I am fearful of a lot with Parker and all my kids. What I learned was even though my heart was racing and so was my mind, "what happens if i get stung? what happens if I drown? worse, what happens if I die?" that as I continued to pray and repeat "God has not given me the spirit of fear, but of love, power, and a sound mind.." once I relaxed and completed the task it didn't seem so frightening. People always say the fear of the unknown is the worst. Once you have experienced something it doesn't seem so bad.

So, what is the point of all this? I guess it is a reminder for me, life was scary when we learned of Parker's dx and of course his heart surgery. Today while lots of things are unknown and still scary, I have learned that God's grace gets us through.

The fact that I posted pictures of me in a swimsuit is terrifying too, hoping everyone can see past that and the beauty of God's creation! XO

"Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won't lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.” Matthew 11:29-30 (MSG)

CHASE!

Our favorite game...Parker LOVES to play "chase" with anyone whose up for the challenge. It can be pets or people, Parker isn't picky.. It started as crawling (round and round in circles all over the house) and has moved to push toys. The speed with which he goes is so fun to watch although radical on the hard woods, but we figure it helps with balance if nothing else. The pure joy and belly laughing that takes place during this time will cure any and all "ills." His therapist let us borrow one of her "walkers" she uses with him to practice at home. It is made so they don't have anything in front of them when walking, supposed to have arms resting on the siderails although you can see Parker uses it all different ways. I am sure I am violating one of the biggest ND "no-no's" here by using the walker some, but encouraging those feet to make steps has to count for something.

Mike and I just returned from a fantastic adult only trip to Grand Cayman. Snorkeling, swimming with stingrays, sun and fun. The last few months have had so many trips for us and we feel so blessed. This rest of this year may be long, we have gotten used to a few trips a month!

I signed Parker up for preschool last week, we are thinking 2 days a week at the church preschool starting in the fall might do everyone some good. I had to swallow my pride, they want to put him in a class with kids about 6months or so younger. My initial reaction to this is always "NO," but he is so small everyone worries about him getting hurt. So, for now, I will pray for peace about it and pray that over the summer he has some kind of amazing growth spurt. HA! For some reason this seems like admitting "failure" if that makes sense? Clearly he's behind (he's not walking for goodness sake and he's 20months!), but it just seems more "real" if that makes sense when school starts coming. I know we have years to fight this fight, but I was hoping it wouldn't start this soon. But, I know God has a plan and I have to trust in him!

XO

M-I-C-K-E-Y MOUSE!

seriously overdue update coming..life is on fast forward (what else is new?) most importantly we just returned from Disneyworld!! Parker was a magnet to any and all people and Disney characters. He enjoyed the trip so much and was so taken with the characters! We took 1200 pictures, we will spare you most of them, LOL. He's been to WDW 2x's in his less than 2 years of life. WOW!!!

Now, the medical updates..

Chicago Endo visit was good, got snow even although this last few days in TX have felt like Chicago! results are back..Parker's thyroid meds were too high, suppressed his thyroid, so we have cut the dosage and are retesting in 6 weeks. These kiddos are really delicate, we had no idea the dose was too high. Best advice, lesson learned here..ask around 50mcg is too high for a baby..when the PA took the history at the endo's office she was taken back by high the dose was. She assumed we were on 37.5mcg or 25mcg, said 50 seemed very high, didn't want to throw him into hyperthyroid..gee, she was right. Praise God we had that appointment, we shudder to think how long we would have gone if we didn't have that appt. At least we had only had too much meds for 8 weeks.

He is dx as FTT (failure to thrive), but the Dr. said he really looks great. Not emaciated and his skin "ripples" so the lack of weight gain in 6 months while annoying didn't concern the endo too much. He has grown in height and head circumference, so that was good. He's fallen to the 5-6% though on the growth curve and has fallen off in weight totally. So, what does this mean? Well, we had a bone scan done to determine his bone age too. His is 12m (and he's 20m) so it is an indicator of growth hormone deficiency. We did the IGF1 test as well and he's very low normal. We will give this another 5 months to follow growth and then go back. From there we may do the 4 hour growth test which is very difficult on the little ones. Ultimately we aren't worried about how tall he will be, but we do worry about internal organ growth and function if he is deficient.

Cardiologist visit - 6months post surgery - fantastic report! Repair is perfect, no leakage to speak of and we get a reprieve until next FEBRUARY!!! Can we get a HOORAY!! One less Dr. visit is always a bonus. She really was amazed at how well he was doing, wanted to know what we were doing differently. I told her she was just saying that and she said, "no, you don't see what I see." Reminds me how blessed we truly are with Parker!

Still working on walking, no more big steps, but we've been in a stroller at WDW so I'm going to say that was a bit of a hindrance for practice!

New words: eat, open, even a "hi grandpa" Parker is now saying MOOO for the cow, quack quack for the duck and will sing "row row" when we sing row row the boat.

All for now, homework to catch up on since we had snow day Friday and time to prepare for Mallory's big birthday tomorrow (she's 9)! We celebrated at WDW, we had cupcakes and singing at every meal, LOL

Blessings to all!