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! 🙂

Mr. Lucky 10 Months

IMG_7308Age: 10 months
Weight: 19.6lbs
Size:18mo clothes, size 4 diapers
Eyes: light blue
Hair: thick and long dirty blonde hair that curls at the back of his head
Sleeping: 1 nap a day. waking 1-2 times at night.
Eating: nursing like a champ, and loves food! He started eating table food a few months ago when he snagged some food off his sisters plate. He eats like he has a mouthful of teeth. Still eats some baby purées but only so I can sneak in veggies. Otherwise he would rather be a big boy.
Milestones: talks all the time- says mama, dada, bye bye and hi, pulls to stand, crawling in four point and works hard to keep up with his siblings
Teeth: 1
Favorite toys/activities: likes books, being outside, being held (very clingy lately), and Elmo.
Words/sounds: seems to make most sounds at this point and says mama, dada, bye bye and hi. Signs all done and waves and claps.
Nicknames: Mr. Lucky
Looking forward to: him sleeping through the night!!! And walking so he can keep up with Ruby and Eli better.

I’ve been thinking about Wyatt’s birth a lot as we approach his first birthday. It’s beyond crazy to me to imagine that he might be my last baby. Maybe that’s why I’m holding on to our nursing relationship so hard. Or soaking up all the little baby moments and savoring them more and more.
(His sweet yet sour milky breath, his salty kisses, his milk drunk snuggles…)
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Part of me longs for another and yet, when I see another baby or hold one during one of my newborn session, I can’t imagine going backwards. We are finally in a place of more independence and interaction. All three kiddos do so well together and I have a handle on our schedules and daily lives.
Maybe it’s just the experience I long for? It’s hard to feel done when you struggled with fertility.
Perhaps I wonder if I could ever really get pregnant on my own again. Or be so blessed as to get another mild natured sweet babe?
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And yet the fear of pregnancy and complications (and having FOUR children) snaps me back into reality. Eli’s pregnancy was so difficult, and my pregnancy with Wyatt was much the same, I was just too busy with my other two to have time to worry. The stress of getting pregnant was removed since we weren’t trying, but my body is still my body…and it is difficult most times. From managing proper meds, to struggling with bleeding issues during the first trimester, I just don’t know if I would be up for all that again.
Eli’s diagnosis gave us time to let it all sink in and his birth was for sure a celebration. But Wyatt’s surprise sacral dimple sent me in a tizzy very quickly. It immediately altered my experience (rough pregnancy but redeeming birth and hospital stay). I was instantly terrified. Instantly questioning whether I was capable of raising another child with special needs. Worried and scared. It was nearly as raw a feeling as finding out that Eli has Ds. I imagine it is similar to a Ds birth diagnosis.
But lets face it, this whole parenting thing is difficult no matter how you look at it. Getting pregnant, staying pregnant and then raising children…it’s all scary, terrifying, raw, hard…and yet so amazing. I look back and wonder what I was ever afraid of. I wonder what ever held me back. Down syndrome? We got this. Adoption? We can do that. Delays? PPCD? Cool.
It’s kind of like drug free child birth, the pain is instantly forgotten and love takes over.

My unmedicated VBAC and Wyatt’s impending first birthday kind of brings it all full circle for me.
Oh, my sweet babies, I’m so thankful for the pain and so thankful for the love.
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Test test test

Fall is creeping in on Texas- slowly and surely the humidity is dropping and our nights are ever cooler. The light of autumn looks different- It has a depth and warmth to it. The trees try hard to show their fall colors (as best they can in the piney woods). And we are on the verge of something big.
After all the leaves have fallen and we finish a “winter” hibernation, we will be standing on the edge of what’s next for Eli. I’m trying to hide in this glorious place- pretending like I don’t have a huge decision to make looming overhead.
It’s a scary place to be. On some days I feel as if I am literally standing at the edge of a cliff as people behind urge me to jump off. Make a choice. Pick your path. I’m just now able to approach that edge to peek at what is before us- It won’t be easy and my heart is tender.

When Eli was diagnosed, I thought it was the hardest thing I had ever been through next to trying to have a baby in the first place). In retrospect, I think it was one of my biggest challenges and a defining moment in our family- but there is still so much more to be faced in this life and all of that feels like it happened to a different person. The truth is those things shaped our family but they don’t define us- fertility and Down syndrome aren’t things we think about every day.
Now Eli is here. My heart is living outside of my body- I thought I was raw before but mama love takes over and I’m so sick with worry. I can no longer wrap myself around him and protect him the way I did when I was pregnant. I don’t know how else to describe the feeling- it’s almost harder being so exposed.
My soul aches at this realization and often I’m brought to tears just thinking about it.

So here it is. Time to pick Eli’s educational path and set him up. I’m torn in how to handle it and I wish it were as simple as it seems on the outside.
While I’m grateful for the public school system and the PPCD program that Eli is entitled to attend, I don’t feel it’s the best fit for him currently. Mostly because he’s only three! He’s still a baby to me. Perhaps that’s naive to say but my heart just can’t see any of my children at age three in school. It’s one of the biggest reasons I decided to stay home- I want to be the one raising my children during this tender and special time.
I have no fantasies about being the only one who can provide for my children- I see and even embrace the viewpoints and knowledge of others when it comes to educating my children (it’s one reason why I love ECI so much!)…but I just don’t feel like PPCD is IT.

I could go into all the other options and the problems I see with each- financial, political, etc etc etc…but I’m not writing to do that. I think my heart and mind have already decided what we will do. While I have some researching to do and questions to ask, this just feels like the best combination of what’s available and what we can do as a family.

I’m nervous and scared…and grateful for winter. To hibernate. To hide away and snuggle my babies. When spring comes, I know I will have to emerge and face what’s before us. Until then….

Eli was recently evaluated using the Battelle Test and REEL3. I’m dang proud of him- all numbers are months.
Eli is amazing. He’s worth the fight and all these difficult decisions I’m facing. Pray I make the right choice, that God will clearly guide me and provide for Eli.

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Age Tested- 29mo
Adaptive
Self-care- 21
Personal Responsibility- 34

Personal Social
Adult Interaction- 27
Peer Interaction- 28
Self Concept and Social Role- 23

Motor
Gross Motor- 17
Fine Motor- 28
Perceptual Motor- 24

Cognitive
Attention and Memory- 24
Reasoning and Academic Skills- 29
Perception and Concepts- 26

Speech is our biggest area that we struggle in. There is currently a 13mo different between what he can say versus what he can sign. Big things coming. I can feel it. This evaluation would have brought me to tears a year ago- I would have struggled to see the positives. To celebrate where he is and what he has accomplished. In fact, this eval was supposed to be done in April but I avoided it because his 1 year eval was too hard. But I’m glad I did it. No one test can tell a whole lot about who my son is or what he’s been through to get where he is. But it is a good tool to get us where we want to go and for that I am thankful.

That test can’t tell you how sweet and sensitive Eli is, or how he learns best by initiation and visualization. How he’s shy but so warm when he knows you. How bright he is- so much trapped inside that clever mind. How his smile lights up a room- how God calls him Light Bringer.
There is no one size fits all plan for how Eli can learn best and I hope that I will be able to bring him what he needs.