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.

Living in a Bubble

21 weeks and 3 days! I can hardly believe it! I don’t know how I can get any bigger!! Little man is making tons of room but only occupying the space in my pelvis! Turd…lol

Speaking of our little man, we decided on his name!

Eli Walker

It feels good to have a name for him. I’ve been “test-driving” it for a little less than a week and it just feels right. So there it is!!

Also, I’m testing out a new look for our blog. I don’t want it to look cookie-cutter but I have no idea how to really make the blog more unique. I think once Eli is here, I will have fun pictures to use that will make decorating it easier. For now, I like it.

Down to business. Needing to sort through these feelings.
The last few days I have been at home, safe in my bubble. We had friends over and we just laughed and laughed all night! I needed it! Then its been beautiful weather and bright sunny days, tickle fights with my husband, lounging in bed and talking to our son, snuggles from our dogs, shopping for cloth diapers, and reading Ds blogs/books. I’ve been safe and happy in my bubble.
And then I stepped out into the real world to spend time with my family.

The love is there. Clearly and truly. Our family loves him already. But love for this child isn’t knowledge and education about him and I feel as if some family members are either ignoring the diagnosis or scared of what it actually means. And who could blame them? I didn’t know a thing about Ds until I had to know! What I do know? That Eli, like any other child, can’t be placed in a box with limitations. No one can define what he is capable of or say what he will be like. He isn’t retarded. He isn’t “special”. His extra chromosome cannot be ignored or wished away. He’s just Eli! He’s just our child! He will have struggles like any other. Some things will come naturally, while others will take time.

Our son is perfect. I see him on the screen wiggling around, his perfect little nose, his tiny perfect hands waving at us, feel his perfect little punches. He is perfect exactly the way he is.
Sure, we could ignore the FISH results. We could pray and hope every day for the son we had envisioned. But that would be foolish because we would be that much less prepared when he got here.
Its been 10 days since we were given the official diagnosis. 3 tests all confirming Down syndrome.
I would say that considering the situation, I have not only handled it in a healthy way, but that I have worked to become as educated as possible.
And in a sense I feel lucky. Our story isn’t unique. Many women decline testing because their baby looks as perfect as ours does, only to be surprised at birth with a Ds diagnosis! We would have the same situation if the lab had not made a mistake.
So, yeah, we are doing pretty darn good, thankyouverymuch!
Its not an obsession. I’m not over-researching (unless reaching out to others and reading real life birthing stories is over the top…). I’m not throwing a pity-party. I don’t expect everyone to embrace the situation. But I am realistic. And it would be foolish to be unprepared for our son when he gets here. It would be foolish for our family to be uneducated when he gets here.

I have good and bad days. The bad days seem to carry a theme: ignorance and fear of the unknown…whether by myself or someone else.

DISCLAIMER: I am not angry or trying to call anyone out or embarrass anyone. I am trying to sort through this as best I can and decide how best to educate everyone who will be involved in my son’s life.
So what now? How do I break the cycle? I want his birth to be a celebration, not a time of sorrow or fear or pity. I want my family to greedily scoop him up and just love him. He will need all the same things any newborn will need.

*sigh* I don’t know. Like I said, I’ve been in a bubble. When I’m in my bubble, I can see my life with my son. Its everyone else that scares me because they are scared.

This week begins a slew of appointments. Tuesday is the big one- fetal echo! Please pray that Eli gets a clean bill of health and that his heart looks/works the way it should.

Waiting Some More

I’m feeling less sorry for myself today and more concerned for my son at this point.
The devil has been on my back for 2 days now and I can’t shake him.
I literally go from embracing and accepting the situation to extreme fear, worry and guilt. It flips like a light switch and I can feel the sour taste of anxiety rise in my throat.

Not to mention the lingering hope that floats around, popping up to reassure me with little whispers like: “Your doctors even said they would have never done a second tri-screen…if you hadn’t done the test you wouldn’t be in this situation.”, “He doesn’t show any physical markers on ultrasound…he’s perfect and healthy.”, “The MaterniT21 test is still considered strictly a screening test by many since it is so new…it has a very low false positive rate but it could be wrong.”, or this little gem…”Keep looking up false positives for MaterniT21 and amnio, because they do exist and somehow they are comforting.”

I spent most of yesterday crying or sleeping. But when I wasn’t doing that I was searching other DS blogs for information and inspiration. Powerful stuff and all I can say right now is I am blown away by how strong these families are. I hope that if our diagnosis is DS I can be that strong. I don’t feel so strong right now.

The good news? My family is amazing and already so in love with him that he is a part of this family already.

The sucky news? Tomorrow we will know pretty definitively which is utterly terrifying. Also, I had some light spotting after work today. So that means another visit to the OB for yet another cervical exam and u/s. I’m resting right now, lots of fluids with my feet up. I feel fine and everything I’ve read said some spotting is not uncommon (and if it’s going to happen, it’s going to happen to me!!)

What I have learned? That you don’t realize the expectations you place on something until someone tells you if will be different.
Also, that I need to write a book of things NOT to say to someone who is grieving. Seriously, people! lol I know that they want to say something to make it better…to disprove the science and doctors or just to make me happy, but they don’t have the words. A hug and a prayer are all I need right now 🙂

What’s next? Well, besides waiting some more, I’m now taking applications from friends for sperm and egg donors. Anyone? Anyone? Give me your sperm and your eggs?? Is that crazy? I wanna do this again!!!