2 Steps Forward, 4 Steps Back

Weekly update... The great news is my sister Kara and her husband Scott welcomed their beautiful little girl Kali Rose into the world yesterday (Nov. 18) and I got to see it all! My sister was a rock star and Scott was a loving supportive husband. Kali is a beautiful baby with a full head of red hair, I will post pictures soon.
Oliver's report is as stated, two steps forward and many back. That is how I am feeling tonight anyway. We started therapy and have a fantastic team that we meet with. Occupational Therapy comes every week, sometimes twice a week, and they come right to our house. We have the best therapist and Oliver was full of smiles for her on Monday. She is teaching us some methods right now on how to calm him down. Did I mention she is fabulous? Our team includes our OT, physical therapy, special educator, family service coordinator, I believe a speech therapy will be added, and a few others in the mix.
Today we were hoping for more good news, but we hit a few bumps, hill, mountains... First we saw the ophthalmologist. We kind of thought that Oliver might be seeing a little more, but after the appointment I think it was wishful thinking. She did not see any significant change in Oliver's eye sight. When all of the lights were off he would follow a flashlight, but with the lights on there was nothing. She said it will be a wait and see, yes we get this a lot. We will see her again in three months for another dilation test. I asked if there was anything that we could do right now for Oliver to help him and she said right now she does not feel he is making the connection to see much but not to give up hope. We aren't, but it is not always easy. Sometimes I try and ask God, "If you could just give me one little sign that he can see, let him grab for something today, Please?? ARE YOU THERE!!!!" I know, it is silly to try and bargain, Oliver will be what he will be.

From the eye doctor we went to the stomach doc, thinking that at least this issue we can resolve. Oliver needs some relief from this constant throwing up and gaggin. No such luck. The doctor who I am not too fond of anyway, kind of gave us the brush off. I will not explain it all, but at our last appointment he said surgery would be our last effort to help Oliver. At this point we were ready, he is clearly in pain right now. Today the doctor brought two students in and they were more interested in his neurological condition and quizzing me about it saying, "How interesting." I said, "Yes, but what can we do for Oliver's tummy?" They said try cereal and we will see you in six weeks, apologized for not being able to help and left the room. My jaw is still on the floor. I don't know how you go from he needs surgery to, try cereal. I would love it if cereal would do the trick, but he needs something more. I caught one doctor and asked why the change in plans. She said they read ONE study on how kids with these brain issues don't need the surgery like others do. They could not remember what study it was though. I guess Oliver is just too different for them. We will be calling a new doctor tomorrow. I would love to tell you some of the other things these doctors said but reliving this visit only makes me upset. Last night we listened to little Oliver sit and cough and gag for an hour before he finally stated to cry, he is hurting and there is nothing we can do to help, it is a terrible feeling.
We are starting to see that there are stigmas with special needs children and in this short time we have already had many stares and comments. Yes it looks like Oliver is "normal" but he can scream like no other, and does everywhere we go. People like to tell us everywhere what we are doing wrong. So far I have only given smiles and "hmm, thanks for the advice, I will try that." What I really want to say is a whole lot of beepity beeps, but what good would that be.
Sorry for the ranting on and on, but I just needed to have a moment. We still really appreciate everything that everybody is doing for us. Thank you a million times over. We are so lucky to have the best family and friends ever.

Update

We don't have any news this week, just a few more appointments to keep the trend going. Today we have another stomach test, a UGI. Wish us luck! More tests that I am sure will be very uncomfortable for the little man. Hopefully they give us some good answers on what is going on in that little stomach of his. Next week we go to the geneticist, eye doctor, and have his final meeting with his therapy team to set up the schedule. Hopefully we will have some news for you next week. We still continue to be amazed at how wonderful and helpful everybody has been. THANK YOU again and again. Those letters, emails, calls, and knocks at the door always seem to come right at the perfect moment. I have added a good picture of Oliver where he is actually not screaming! Also a video. Check out that skill! We were so excited to catch that right when I turned the camera on. He has only rolled a few times, but when he does we celebrate! Also, scroll down to check out the Halloween pics. In between is a poem I added. You can skip it or read it. I have read this many times since we found out about Oliver and thought some of you may also enjoy it. I still get tears when I read this.

Welcome to Holland

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

CANDY!!

Adina discovered how wonderful Halloween is, FREE CANDY! We went to our friends house (also Adina's daycare) and had a blast going from house to house. Matt's parents were also there and offered to watch Oliver so we could go out with Adina, Matt, Danielle, Brayden, and Cole. It was great to be able to have that time with Adina and not have Oliver screaming through it all, which he would have done. (Thanks Matt and Danielle!) It did not take long for Adina to figure out the magic words, "Trick or Treat!!" After filling our bucket (two times) we went in for a yummy meal Danielle made. Adina put on her pajamas and played with the boys. She thought it was pretty cool that she got to play with them at night! Here are a few pictures of the night.