First Screening- PPCD

No pictures for this post. I haven’t had a chance to take any between posts and today has been all about running.

Eli had his first district screening today. It felt a bit overwhelming. I feel like if I had been in the position of the educator I would have been comfortable but as the parent I felt bewildered and unprepared.
Maybe it was nerves or maybe it’s just me trying to get my bearings on the situation.
I know we were covered in prayer but my heart was fluttering with doubt and fear.

They signed us in and we had a short wait. Which meant I spent that time chasing Eli as he happily explored the building and waved at everyone who would make eye contact with him.

They brought us into a classroom and after asking a few questions they presented Eli with a simple task.
She placed two blocks before him and ask him to pick the orange block.
This request was met with complete silence and a diverted gaze. Followed by a slight head tilt.
The team consisted of an ASL certified aid who translated Eli’s signs and signed to him as well.
She asked him a few times and signed the question. He finally responded.

The next color question, blocks went all over the floor and the “screening” was done.
The evaluator scored Eli as “failed” in all areas and said that as a formality the OT would visit with him.

We were then moved to the waiting area where Eli was happy to answer all my questions about animals and color and shapes. -_-
After a while we were brought to another room where the OT asked a few questions and tried to get Eli to stack blocks. Which got thrown on the floor.
After a few more times prompting, he began to ask for a book near where we were sitting. It’s a book we don’t have and he was excited to read it.
Each page had a picture of one animal or object and a matching sound button on a panel to the right.
Eli has never really connected the sound buttons with the images, instead just pressing the buttons randomly.
Today he signed animals and objects he saw and then pushed the corresponding button! I was so excited to see this click for him!

While we watched him give a small preview of what he is capable of, another child Eli’s age approached us. It’s always so hard to see a child Eli’s age (who’s being evaluated for the same program!) walk right over and start talking to him, only for him to shy away and not be able to respond. He’s still such a baby in so many ways.
It’s a reminder of where we still need to be for Eli to be as successful as he can.

The screening was short. They want all therapists to be at his evaluation in March.
That eval is supposed to last two hours and I pray that Eli will open up during that time and show them what he’s capable of. He’s so clever and resourceful. A 15/20 minute visit with him doesn’t show much especially when he’s so shy.

School is going to be a huge help for him in this respect. I’m hoping for more independence, maturity, better social skills and to coax my shy boy out of his shell a little bit.

I didn’t feel like the questions I have were going to be directed at the right people so I’m waiting until our evaluation….but I may contact the school directly or at least the therapist I know will be at his school.
Any questions you can think of?

I’m interested in what speech accommodations (besides the ASL aid) will be made for Eli that aren’t “therapy”. And some of my other questions are about therapies we don’t even know if he will qualify for or not.

And now for Medicaid and insurance therapy verifications…. Ugh!! So much to do in such a short amount of time.
Life is about to get crazy ;)

Thanks to everyone who has contacted us to send positive vibes and prayers. This next phase is huge.

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-

Self help-

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-

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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