Thyroid and Therapy

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We recently began the journey to improve Eli’s thyroid. This was a difficult decision to make because, like supplements, it’s a slippery slope to more supplements, pills to remember, research research research (that I don’t have time for!) and one more thing that makes Eli different.
It also required blood work and a doctor who would support us.
Eli has had his annual labs every year with no glaring issues and concerns. His thyroid at age 2 showed subclinical hypothyroidism but no one we spoke to would treat it. Eli has many symptoms of thyroid problems but we were continually told that it was just Down syndrome and not thyroid.

So we waited and researched what we could.
Eventually I found Dr. P who, upon looking at Eli’s labs, felt we needed more bloodwork and thyroid treatment.
After more waiting and saving money to afford Dr. P and her consultation, we are finally on a good path.
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Eli began Naturthryoid 8 weeks ago. His initial labs were within normal ranges despite presenting many symptoms of hypo. We are striving instead for optimal numbers and already seeing the benefits.

Since beginning treatment, Eli’s attention to detail, his attention span and his processing has all improved.
He’s grown 1/2 and inch and gotten a new tooth. His health has been good and we feel like he has been able to get over illness that he wasn’t able to before (instead of a minor cold turning into a sinus infection every time).

We just had our follow up blood draw last Monday, which was part of my fear. I was worried they would find something wrong, that we would then be forced into looking at more supplements (because while A works well, A works better when combined with B but A and B can’t be taken at the same time and really it’s even better if you add C but B and C can cause a risk for seizures so we need to run MORE labs to check levels…blah blah blah…it gets crazy).
But to my surprise the dosage the doctor recommended is perfect, and we will actually be adding a new med for T3 support. (So Liothyronine in the AM and Naturethroid in the PM).
Even better? This blood draw was by far the best one we have ever had.
Typically they stick Eli in the arm they think is the best, and nothing comes out. They dig around for what feels like forever before giving up. Then we stick him in the other arm which gives blood drop by precious drop and we can never have all the labs we want because he never fills a tube.
This was huge.

So right now, in the moment, I couldn’t be more thrilled with the results we have seen. I wish we could have done it sooner and I would urge all parents to strive for optimal levels and fight or a doctor who will support you.
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On the therapy front, I feel like we are winding down and gearing up all at the same time. Our therapists are preparing us to age out in THREE MONTHS, trying to update new goals, and pushing Eli even harder than before. I don’t know what we will do without them.

We are currently working on self help skills like dressing, and potty training.
Apps we are using:
http://www.pull-ups.com/potty-training/time-to-potty-app-page/1226
https://itunes.apple.com/us/app/potty-time-with-elmo/id525507410?mt=8
https://itunes.apple.com/us/app/potty-training-time/id473203652?mt=8
DVD:
http://store.signingtime.com/potty-time
Potty training accessories-
http://www.amazon.com/3–Toilet-Trainer-Potty-Seat/dp/B000VY1WPC/ref=sr_1_1?s=baby-products&ie=UTF8&qid=1422894463&sr=1-1&keywords=3-in-1+Toilet+Trainer+Potty+Toilet+Seat
Self help-
http://www.amazon.com/dp/B00168CPQM/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=IBHFC55867TIS

We are looking at iPad apps to help with communication.
Apps-
http://www.nikitalk.com/
http://www.assistiveware.com/product/proloquo2go
http://www.speech-ez.com/
http://www.geminii.com
https://itunes.apple.com/us/app/i-hear-ewe-animal-sounds-for/id304093970?mt=8
https://itunes.apple.com/us/app/articulation-station/id467415882?mt=8
https://itunes.apple.com/us/app/smalltalk-phonemes/id384170714?mt=8
DVD-
http://www.amazon.com/dp/B006G18XN8/ref=wl_it_dp_o_pd_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=IKOUPJ72CJBP0
http://www.amazon.com/dp/B000Y1NNH2/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=I1LRF5GW126UR4

Eli has gone down to two PT visits a month and we are working on some of the same skills (clearing stairs and thresholds without sitting down, climbing play equipment independently, and keeping his knee from popping back), but we have also added riding a trike to the list.

In OT we are focused on opening closures, comparing and sorting, and fine motor activities including play doh and theraputty.
http://www.discountrehabsupplies.com/s.nl/it.A/id.2864/.f

SLP is working on following directions and some of the same stuff that OT is working on.
Balance Board- http://www.amazon.com/dp/B000N40SDC/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=I1VQGPD35HCDPY
and more walking for breath support.
We are also working on blowing- so blowing a kazoo, blowing tissues and cotton balls across the table, blowing a pinwheel…he’s recently learned to blow his nose, but only when he wants to 😉

SLP has been the biggest challenge and it feels like the area we have made the biggest strides in and yet made no progress at all…if that makes sense.
Since beginning the Gemiini program, Eli has started to pay attention to our mouths when we speak, began babbling again, he has better lip closure, is copying “fish lips” and doing tongue play. He is making a roaring bear sound, and he’s saying “mmmmm” for “more”.
He has also said “mama” and “dada” a handful of times and is a bit more social around new people (waving, showing people with his fingers how old he is, and generally being more loving and comfortable around others). This is big! It’s not words, it’s not talking. But it’s HUGE in our world.
http://dsdaytoday.blogspot.com/2014/03/treating-apraxia-in-children-with-down.html
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Eli has his first assessment with the district tomorrow, so I am sure I will be updating on how that goes. I’m nervous and excited at the same time.
Happy Monday, friends! 🙂

Officially a Walker!

Eli has been officially declared a walker by his PT today! We are so thrilled! Like, over the moon proud of this boy! He met our goal of walking by the age of 2 and while he’s still exploring his new found freedom, he’s getting more confident and his world is about to change completely!

Ruby- 6.5 Months Old

I am like 6 months behind but I love this update format, so I borrowed it 😉 Thanks to my friend over at Blessed by Beau
Age: 6.5 months
Weight: Last it was checked she was 14lb 5oz
Length: 2ft 2in
Head: 16.1in
Size: Size 3 diapers and in 6-9 month clothes
Eyes: Blue
Hair: We can’t tell if it’s going to be curly or straight- some times it’s got waves or curls when wet. It’s starting to fill back in and it currently a dark brown.
Sleeping: She is sleeping through the night- 8:30pm to 7:00am. Parenting win!
Eating: Not a fan of solids- she just pushes them around in her mouth and then spits them out. We are working on it.
Milestones: Sits pretty well alone but still wobbly. Trying to push up into four-point on her own now. Rolls every where!
Teeth: One little bottom tooth popped up last week!
Favorite toys/activities: Loves her daddy so so much, loves to chew on her toy rings and loves to watch her brother.
Words/sounds: squealing, screaming, and cooing lots of “a” and “o” sounds.
Nicknames: Ruby-roo, roo-roo, Queen Ruby, Rubels
Looking forward to: Her beginning to crawl- I can’t wait to see her explore and begin to play side by side with her brother.


The best I could get of Ruby trying to push up, but she was literally IN 4-point moments before. lol Little turkey!! I also got her special squeal on camera 😉