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.
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.
