Really? Again?

We did have another trip to Children's Hospital, but fear not, it was only for his appointment with the Geneticist. I would love to say that it was a fantastic appointment where we were given heaps of hope and inspiration that yes, things will start turning around. Well, if they are turning around, it seems as though it may be the wrong way. She talked to us for a bit, once again we told the whole story, (which she already knew, but needed to hear it in our words.) It is confusing, first we met with the genetic counselor (December) where she asked about every single family member that we can remember, moms, dads, siblings, aunts, uncles, cousins, grandparents, even into the greats. We had to tell her of any illnesses, complications, last bowel movement, you get the jist. Then we came back today to meet with the Geneticists, she was most likely one of the most intelligent people I have even had a conversation with, and had great bed side manner. Anyway, the results of the day.....

Oliver has two funny chromosomes, I too have these same abnormal chromosomes. We are chromosomally defunct. Since I am normal (yes feel free to laugh, but they did say I was normal =) his condition is not related to this.

She said that she is almost positive that there is much more to the picture. Oliver is displaying way too many signs and symptoms for it to just be Agen. of Corp. Coll. (ACC) As if dealing with "just" that isn't enough. Here are the options we are now facing.
#1-- She thinks that there is more missing or way underdeveloped in Oliver's brain. The fact that his head stopped growing 5 months ago is a bad bad sign, especially with the fact that he is not really reaching milestones. It could be many many things with the brain, just more malformations, or something associated with a syndrome/ illness/ disease/ who knows. Some are very serious, some not, just major developmental issues, which we face already. (Please "just" let it be that)- our prayers
#2 Something is very wrong with the rest of Oliver's body. She noticed that he seems very stiff and rigid, head isn't growing, etc. If there are not other major abnormalities with his brain, there are abnormalities somewhere else and this could have caused his brain to stop growing. She was very professional, but honest. There will be many labs in our future and more testing and she did prepare us that this could be something life threatening (and it could not).

Next step- She said that Oliver is a very complex case and this is going to take time. She said we need to have the MRI re-evaluated. It is going to be done by, in her words, the best Pediatric Radiology Specialist in Minnesota. Cha-Ching$$
Sometimes I wonder if someone up there is subtly trying to whisper something into my head to prepare me. We were at urgent care with Oliver a week ago and the doctor heard about Oliver's ACC and broke down in tears. Her son passed away of something that we found out today Oliver may have, she said Oliver looked just like her son. There have been other strange things too (I could write all night). Don't get me wrong, I am not sitting here expecting the worst, but right now we know it is out there floating around. I am going to continue to wear my mom goggles and think that he is fine, perhaps this is all a big mistake. OT is still going great and we are making progress baby! I think sometimes it is okay to live in Lala land. We enjoy our trips there. And yes John proof reads these and as mentioned in an earlier post, I am crazy, you don't have to call to ask.
So now guess what, famous words, we WAIT! See what the radiology specialist says and go from there.
We are pooped. Just when things are looking up we get hit again. Pooped!

**If this was confusing, I agree, we are still sorting it all out in our heads too.**

Calm Down

Almost three weeks after the surgery and it is finally getting back to normal around here, at least our normal. We haven't made an emergency room visit for one week (tomorrow). Oliver came down with a very nasty resp. infection, but we are over the worst and now own a nebulizer (Oliver was our little Darth Vader for a few days with the mask). Oliver started vision therapy and he responded very well, we will now address the issue of getting glasses at our next opth. appt. We see the geneticist this week again, which we are excited (or at least anticipating) about. He will tell us if Oliver could possibly have any other issues/syndromes. That, in a nutshell is how we are doing. I will get some pics up soon. Adina and Oliver are both changing so much!
To those of you who thought I was going crazy in my last post, calm down, I probably was. I do everyday, but doesn't every mom(if you say no I don't believe you!)? I am not perfect that is for sure. Perhaps I also have a strange sense of humor, my way of getting through.
!!!Bedtime!!!!

Post-Op, Problems, and the First "What's Wrong With Him?"

It has been a little over a week now since Oliver's surgery and we have had a lot of problems. Saturday our home health nurse came over, took one look at Oliver, called the doctor and sent us back to the hospital. I knew it was coming, Oliver's site was very infected and he was running a high temp. Got antibiotics (which only make his reflux worse) and came home. Next day, Sunday, Oliver's site started leaking formula profusly. Called GI doctor and it was back to the ER again. That night we were party animals and hung around Children's Hospital until 3AM. He was a little dehydrated so they have to give him fluids, took 4 tries until they finally were able to get the IV started, poor little man. Monday we were back at the clinic to have the tube readjusted. Our new goal in life is to make it one day with no ER, doctors, or calls. We have yet to make it there. We are fortunate however, our family practice doctor, (the doctor who delivered Adina and Oliver, and also noticed something was wrong with Oliver very early) called today to check up on Oliver and us. We really hit the jackpot when we found her as a doctor a few years ago!
The up side is Oliver is sleeping a bit better since we have gotten home. I think it is because he is getting continuous feeds through his feeding tube throughout the night, which sadly also make him throw up more. So I have to try and change him without waking him up. We are getting used to the many nightly beeps of the feeding pump or the many vomit sessions which activates the song in his mobile that also helps calm him.
Now to the questions. While we were in the waiting room at the ER there was a group of parents just chatting about their sick babies, how old they were, what they were doing, and on and on. I now avoid these interactions as often as possible not because I am embarrassed, but it is hard to constantly explain things. One family asked why we were there and I just said a problem with his stomach. Whew, avoided that one. Then another mom asked how old Oliver was. "8 months." .... "Really?? My boy is 7 months." ....Oh crap, here it comes. My stomach drops, "What's wrong with him? He acts so much younger.." ... Simple answer, "he was born without part of his brain so he will develop differently than some, this is Oliver, and he is fantastic!" She just said, "Okay, he is a cute little guy." Did I mention she was also drunk and angry at the nurses? This story has many more pieces.
So, there it is, the first. I thought that would have been really hard, but I think that I appreciate her bluntness (most likely alcohol induced) more than the pity looks. It will always be hard but I think we will develop a tolerance. Some people are just curious and some are just ignorant buttholes(or insert own word). Sorry for my bluntness (NOT alcohol induced, just life induced), I just need to vent sometimes and this, and you, are my source. Good Night, at least until the next beep.

Hospital Stay

I know I said I would post while we were at the hospital, but they did not allow that website to be opened from their network so I will fill you in now. Oliver had the surgery Tuesday and it went very quickly and he did great. There was no damage from all of the throwing up he has been doing and that was an added bonus. It was hard to sit and watch all of the parents coming and going, many in tears, the rest were either very nervous looking, parents that go through this often and it is just another surgery, and some that have probably been crying for days and are now lost in the fog of emotions. On the other hand, it was nice to be around parents who were going through something similiar.
The first night post-op was not good at all. We shared a room with another baby, 5 months old. Oliver and this young boy, throughout the entire stay would either have coo-offs, cry-offs, sympathy beep time (taking turns setting off the alarms), or the dreaded beep war (If you beep I will beep too!). We did not sleep the first night at all. The morphine was not working for Oliver and he was totally on sensory over load. The next day we tried feedings, but Oliver could not tolerate them. He had a spike in heart rate and his oxygen saturation level was dropping until finally they had to put a tube down his throat momentarily. Not fun to watch. We made it through. We were at the hospital one day longer than anticipated, which was best for little man. Our new GI doc is great and very experienced with special needs children.
We are home now, and slowly taking the feedings. I have to go and set up our first night tube feeding! Wish us luck! Oliver continues to amaze us, he is so strong. Adina was also relieved to have us home, although she did enjoy the many toys at the Children's hospital.

A New Skill and Some Nerves

Oliver has his surgery this week on Tuesday at 1:30. It is very quick, less than an hour if all goes well. They will also be doing a bit of investigation to make sure there has been no damage to his esophagus from all of the reflux Oliver has had. We are excited to have this over with and hope that it will make feeding a less time consuming / frustrating event. Tonight the wave of emotions once again returned thinking about yet another medical procedure Oliver has to go through. Soon it will just be a memory and we will be thankful I am sure.
Christmas was great and we were able to see family and get a little rest here and there. I have some great pictures and will add them at some point. We have been having some computer problems, every time I try and download pictures our computer just poops out.
The big news in the Klawiter house is that Oliver figured out how to put his fist in his mouth!!!!! A small but extremely large milestone that I am sure we took for granted when Adina did the same thing. We cheer every time he does it! A few more... We took a car ride to the doctor in which Oliver was awake for the entire ride and did not scream! He is usually either asleep or awake and screaming. He was also awake on the way to church today and was just talking. When the music would play at church today, Oliver cooed along when the music would start, and last but certainly not least, he had tummy time today and yesterday for five minutes with out screaming. These may seem like non events but in our world we celebrate these moments!! After our celebration and sometimes tears of joy we say "I can't wait to tell Susan." She is Oliver's Occupational Therapist and is the best of the best.
I will update as I can during the hospital stay. Have a great week getting back in the swing of things after the busy holiday!
Peace