Need a Smile

So I learned my lesson. Never assume that everything is getting better. Last week Oliver was super happy and even laughed a few times. John and I were marveling at how we had finally reached a new "normal" way of life. Last Monday we headed up north to my grandparents to finally celebrate Christmas. Oliver woke up in the middle of the night the first night we were there. He was frantic, throwing up, and just a mess. I don't know that I have ever seen him in so much pain. We decided to come back to the cities just in case this did not pass. The last thing we were about to do was take Oliver to some podunk hospital and try to explain what he has to them. This is why we stay close to Children's. We got home and Wednesday AM he was still miserable and was starting to do little staring spells. Called our doc and she said get into the hospital ASAP. Got to the ER and they figured he was dehydrated but other than that, special kids are hard to figure out (his tummy x-ray was normal). We were told we could go home after we made sure he tolerated food in his tube. I was lying next to Oliver and he did the staring thing right as the doctor came in. I said, "Quick!! Look at this." She said, "You are staying." Oliver was having seizures about every 45 minutes for who knows how long before we got to the hospital. They lasted for about 2-3 minutes each. He slept for about 36 hours straight, seizures make you tired. So again Saturday we were about to leave. Oliver was still not feeling well, but nobody could figure it out. Finally our neurologist came, he had been out of town so we were seeing a few different neuro docs. Our doctor knows Oliver and told us we were staying until we figured this out. So, throughout the course of our hospital stay Oliver had the following tests. 2 tummy x-rays, ultrasound of abdomen, 1 chest x-ray, EEG, EKG(his blood pressure dropped so low at one point we had 4 docs and a few nurses in our room in just a few seconds), blood and urine tests, CT scan of his pelvis, abdomen, and chest, and brain MRI. Whew.. did I mention it took 9 tries to get an IV started? Two anesthesiologists tried, finally using ultrasound to get it started. From this, we learned his brain is the same, it has not grown at all meaning his brain is so underdeveloped and not gonna change, but it has not gotten worse. Abdomen looks fine, he has some lung issues. We are not 100% but it most likely is from when Oliver was seizing and throwing up, he sucked a bunch of fluid in his lungs. It is not pneumonia yet, but we are treating it because they are worried it is headed there (the doc called it pneumonitis). Because Oliver's seizures make him aspirate, which he is already prone to do, we cannot feed him with a bottle, only through the tube. In a few days we will repeat the swallow study to see if he will be able to feed with a bottle again. We will repeat the chest X-ray in 2 weeks to see if his lung issues has resolved. Oliver did have another seizure last night. We are now playing the tricky game of figuring out the right dose of meds. He will have random seizures now and then and he has a 40% chance of developing the type of seizures where he would go into convulsions. This would be bad for Oliver because they apparently are very difficult to treat in kids like him. I got the feeling that it is just a matter of time. So that was the last five days. Oliver went from taking three meds to now being on seven. Two are only for a few weeks the rest are forever. I am physically and emotionally killed. Oliver has not smiled in almost a week and I need that again so badly. He just seems so sad and miserable and it is breaking me to see him this way. It is times like this when I feel so guilty.
We were getting his medications today at the pharmacy and I told Adina that we need to give it to Oliver so he does not have anymore seizures. She said, "Ummmmmm, mommy I looove Cheesers!!" Thank God for moments like that.
Now a busy week of follow up appointment and moving downstairs to our three bedroom apartment.
Nite all...

Oliver is One!!

Happy Birthday sleepy boy!!

This is a picture at my pinning ceremony with my favorite nursing gals! I finally finished!








On May 1st Oliver turned one!! We did not have a big birthday for him since he had the wonderful Olive Branch celebration only a few days before. My sister did buy him an ice cream cake from DQ, which we all enjoyed.
I have been thinking about Oliver and yes his real birthday is on May 1st, but for some reason I feel like his real Birthday is September 26th, the day we learned and began to better understand Oliver. I don't know if this is weird or not, but I think of that day so often. It was a very devastating day, but also, it was a day that started to make life easier, in a sense that at least we started to understand.
I think that Oliver's Birthday will be hard for me every year. Normally we celebrate everything our child has learned to do in the last year, crawling, walking, waving, laughing, etc. I guess we just celebrate the smaller things he has learned. There are days that I see other kids his age and younger reaching their milestones and their parents are so excited and proud, which is how it should be. I wonder, when Adina learned these things, did we really celebrate enough or were we rushing for her to learn the next thing. Did we enjoy it enough? Were there ever parents in the distance watching, wondering with a bit of sadness what it would be like for their child to be able to do this? It breaks my heart to see how hard Oliver has to work to just bring his hand to his mouth. But we celebrate every single silly little moment like this. Adina is always there as well to say, "Good Job Oliber!"
I hate for this to sound like such a downer, but these are the feelings that came with Oliver turning one, and most likely will come with two and three...
Yesterday Oliver was laying on the floor and I tickled his chin and he laughed!! So sweetly... Whenever I am down I am going to think of that laugh..
Medical Updates... We had a whirlwind of a appointments that came with Oliver turning One. He went to a different Ophthalmologist, she is like the eye doc that all other eye docs turn to when they don't know what the heck is going on. She's known as the "Guru." She told us that Oliver can see some light and a bit of black and white and that is all. We thought it was more but she said that people who are blind find other ways to see things. I think about this now and close my eyes in stores when I am looking for a toy. I am sure I look crazy but I want to feel what Oliver sees. Also, when we thought he was following us, he most likely felt the slight breeze on his face. Close your eyes and wave your hand in front of your face. Did you feel it? Kind if crazy huh. She said Oliver has Delayed Visual Maturation. I said.. ahhh.. so when people ask if he is blind? She said tell them yes, it may develop but not much.
Also, we are going to have another MRI on June 1st to see of there is any change of the brain, mostly bad changes. And a bunch more blood work to check for certain genes. We brought him to a feeding clinic where they did a swallow study, all this time Oliver has been sucking fluid into his airways. "Silent Aspirator" Now we thicken his bottles, problem solved! It took a week to get used to, but now Oliver likes his thicker bottles.
So that is that, I know this was a lot of info! Time to go and enjoy the warm sunny weather!! Mommy and daddy are both done with school (for now--daddy starts on June 1 with summer school). Hope all is well, we have a lot of fun stuff coming up, stay tuned for more pics!