Whew, That Was Hard!

Tonight at church I read a letter that I had written for Adina and Oliver about my faith and how they have helped me over the last few months. I practiced and practiced but sure enough I started reading it in front our congregation and totally lost it! It was the hardest thing I think I have ever done. Luckily, Kara, my sister came up and stood with me; I made it through with many sobs and a few snorts too! =)
We are so blessed to be members at our church. They are SO supportive and love Oliver so much. They are the best.
Our Doctor Strike has been wonderful--don't get me wrong, doctors are great, but not seeing doctors is better! Oliver has his mini-surgery on Tuesday to change his feeding tube, and then we will go back on vacation.
Therapy has been going really well! Oliver focused on a toy and followed it from side to side! We were all cheering for him. It does come and go, some days the eyes work and others not. We take the good days and throw out the bad.
Bedtime! Adina got the new book, "Llama, Llama, Mad at Mama." We finally get to read it.
Night

New

Oliver is starting to get big big big.. He is a little over 20 lbs now, which is normal for his age. Only problem is, he has outgrown his infant car seat, but not the need for it. He still does not have enough head and neck strength to be in a big boy car seat--so, what to do? One of our bigger car seats reclines but we are not sure if there is enough support, have to see what our OT says. Anyway... since we will soon be rid of the infant seat, Oliver is going to have to get used to sitting in the stroller for times we cannot carry him to the car with everything else in tow. Until now, Oliver has hated (HATED) the stroller, but we tried yesterday and he made it, and was happy for 5 minutes!! This was HUGE for Oliver!!!
Also new, Oliver and I have decided to go on "Doctor Strike." I am not going to go into explanation because I am tired and it has already been a long week. Of course we will only be on strike until, well, until we need a doctor I guess! Sometimes John and I really think that some doctors only pretend to know what they are talking about to maintain their gigantic egos, but really don't know the difference between their head and bum!
Yes... we are okay.... Just a little comic relief to get through the day..

Adina Darling

Three nights ago we put Adina down to bed and a few minutes later she knocked at her door (this is code for I don't want to go to bed) saying her head hurt. She said she hit it on her bed. Thinking not much of this we kissed her head and put her back to bed. The next night again came the knock and the same story of hitting her head. This time John felt he needed to do some investigation about this head hitting episode. He asked her what she hit her head on, "The toy box." John says, "Well, what were you doing before you hit your head on the toy box?" Adina gets a brave smile on her face, stands boldly on the bed with her two arms up in the air and bursts into song, "I CAN FLY, I CAN FLY, I CAN FLY!!!!"

John reminded her that before she flies, next time she needs to remember that she can only fly if she has some pixie dust! We have also put Peter Pan away for a little while.
Good Night

Yay! A Mother Load of Pictures!

Bath time fun!! Mom, really, do you always have to give me this hair style!!



Sitting with aunty Kara and cousin Kali Rose, she is getting so big!

I'm makig a cake with mommy!

Ahh man, there is that crazy hair style again =)

Hanging out with cousin Charlie a few weeks ago, he really liked wearing my backpack!



Adina loves to sit with Oliver. She will always ask to hold him and then will say, "Go mommy, get the camera!" She loves him so much, and he loves the sound of her voice!







Oliver had a great day! He does bring his hand to his mouth a lot, but has never brought a toy to his mouth like this! Go Oliver Eugene! (The video cuts off quickly from my camera battery dying)

Many of you have been worried about us and we appreciate the many calls and prayers sent our way. Thanks! We are doing fine, just had to deal with the news thats all. We were expecting something like that, like maybe he would just be delayed more than they thought. We were not expecting the doc to say that he probably won't walk and probably will start displaying more autistic characteristics. No, this was not something that we knew all along. So, yes, it was hard and we were very sad about it. But, as Sheryl Crow says, "If it makes you happy, it can't be that bad, if it makes you happy then why the H are you so sad?" Plus, I am pretty sure that Oliver is going to surprise everybody and we are going to be right there to say way to go little man. Back to the process of "normalization." One of the mom's from our online support group said something that made me laugh, "Taryn, normal is just a setting on a washing machine."
We will constantly have the rush of feelings arise at rare no good times at all, we are human. But we are happy, stressed at times yes, but happy. Nite everybody

Need a Break...

Nothing is ever Nothing...We had our "expectation" chat with the doctor today. He gets all of the reports from the other doctors, they all kind of work together. He just wanted to check in to see what our expectations were of Oliver. I told him that right now we are so confused that we don't know what to think. I was honest with him and told him we are getting really tired of the doctors telling us we need to see this doctor now and have this test done and he may have this certain disease that is life threatening. He said that we needed to have an honest discussion about what he thinks. I told him to give it to me straight, knowing deep down what was coming. In his expert opinion (he has been doing this for 25 years) Oliver most likely will NOT walk, will be more on the severe side of mental retardation, and most likely will display some form of Autism. (Knife through the heart, didn't think it would be that much). He said many kids with ACC don't starting walking until 3-5 years of age(these kids don't have other brain anomalies like Oliver). He did say he has been wrong and LOVES to be wrong in these cases. Considering all of Oliver's brain anomalies the chance of him walking is not much at all. As far as the other milestones, sitting, crawling, rolling, etc. we really don't know. He did say there was a small chance Oliver could have some of those life threatening diseases but did not think that right now we should put Oliver through any more tests unless we wanted to. He said they are painful and there wouldn't be much we could do. I agreed with him, we "Need a Break" from all of "this is what is wrong with Oliver" and need to focus on therapy where the outlook is, "Wow, look what Oliver can do." This was really hard to hear but it was needed and I really admire him for telling us. So, he might walk and talk, he might talk and not walk, might sit or not, we don't know. We just are going to do the best with this. Now the thoughts will be when he does get bigger, when is it time for a wheel chair, and finding places to live that are accessible. I know many of you are thinking that we are giving up hope, don't say this to us please. We are not giving up, just being hopefully realistic and thinking ahead.

I know that everybody means well and we really appreciate everybodies love and prayers. It is hard not to say, "Can Oliver sit yet? Can he roll?" Trust me, if and when he can do these things, you will hear us screaming it from our window! Oliver is also at times starting to develop some strange breathing patterns, also normal in children with neuro issues. The doctor said to get him in as much therapy as possible and to just enjoy him. That's our plan, Monday I will start looking for additional therapy besides our fantastic team and hopefully we will have less bad news on here and more of, "Guess what Oliver did today in therapy."

Adina update: She is talking a lot, lately she has been fighting bedtime and nap time and just wants me to snuggle with her. Today, daddy put her down for a nap and she did not want to go. She screamed and screamed until I finally went in. Adina said, "Mommy I am so sad and I am crying." "Why are you crying and sad Adina." Tears...."Because daddy is really really naughty (insert more tears here)!!

3D CT

Oliver had his CT yesterday. I had to laugh a little (only a little though). I got there and the nurse said, "You know this is really quick, he shouldn't have to be sedated if you can only get him to lay still, lets give it a try." Seriously!! She must have read my body language, she asked, "What do you think mom, be honest." Being honest is not something I have a problem with. "I just said, No. I think No. We tried it before, Oliver has sensory issues, doesn't like to lay flat and have straps across his body and head. Okay?" She said okay and went to talk to the doctor. She quickly came back and said that the anesthesia doc. wanted to try first without sedation, but if he cries at all we will stop and sedate. I think she was a little apprehensive to tell me and I don't think I would have wanted to tell me either. So, we played the game, put him down, he screamed. Again, the question, "Well, what do you think mom?" "Ahh, well I think it's time to sedate him." I understand they have to try everything before sedating, I get it, but we had tried already. I don't enjoy watching Oliver get an IV to be sedated, but it is just how it has to be with him. So, sometimes I guess we just play the game, it gets old trying to fight but I later kicked myself for not being a better advocate for Oliver. Still kicking.
At least after all of that we had good results! Our neurologists secretary called and said the soft spots are still open (YAY), but he still wants you to come in tomorrow. (Crap) I asked why and she said to talk about expectations for Oliver. I have no clue what this means, but I know that doctors never want you to come in for just a friendly little chat. We weren't scheduled to have another follow-up with him for two more months. Cross your fingers that it is nothing, but nothing is ever just nothing.
Since I am rambling, another eye update. I think we have the best doctors if I have not already said so. (The anesthesia doc in the story above is not our regular doc) The eye doc. does not seem to understand what is going on with Oliver's eyes nor do all the rest of the docs. She wants Oliver to see some sort of opthal. specialist that focuses on genetics. There are apparently only a handful in the country, one being at the U of M. She is personally calling to get us in, but has had no luck thus far. SO... she tried another who works in Cleveland and he said that Oliver fits some sort of description of kids that they can give more answers and would love to see Oliver. I laughed at first until I realized she was serious. I said that we should keep trying the U and if we have no luck in a few months we will explore that option then. If I knew it was going to really help then sure I would do it. We will just wait and see.
So, until tomorrow I guess.

Eye Doc.

Two hour appointment at the eye doctor felt more like 24 hours. They had to dilate him and he, like most people, did not like that. He is so SO sensitive to light that every time she would try and look in his eyes he would close them so tight. So they had to tie him down and force his eyes open. Having to watch the poor little guy get strapped down twice in one day can be really hard, but I know they have to do it.

Anyway, not much new at the eye doc. He is fixating a little bit more than last time, but she said it is nothing that glasses would fix. She is sending us to the U of M to a Ped. Opthamologist that specializes in genetic disorders--yes, another genetic doctor. She is thinking since he is so light sensitive that he might have issues with his rods and cones in his eyes, again, much more testing to come. Today was, I think one of my hardest days, our hardest. We have been through so many tests and I feel like there are still no answers. Just, "go to the next doctor."

I wanted to give up on all of the appointments more than ever today. Then his eye doctor called at 8:30 tonight, (yes, 8:30 PM) and said she finally got ahold of the U and hopefully we will get in by March. When I see how much our doctors want to figure this out and realize how committed they are, it helps. So, like the many posts before, nothing new. Every doctor right now is waiting on the results from the re-eval of the MRI by the ped. neuro. radiology specialist. (Say that five times fast!) Maybe then we will get some answers? I better not hold my breath! So today was a junk day that I am going to repress and throw away, give it to God, or anyone else who is willing to take it!