Therapy, Vacation, and Don't Mess With Oli!

We went on our first official family vacation since Oliver has been in the world. We were very nervous as to how it was going to work since Oliver seems to have seizures everytime we leave the house. We made it and actually had such a great time we stayed an extra night! The first night Oliver only slept for two hours, which means we all only slept for two hours. The next few nights went really well and I made it through the half marathon. While I was packing to leave on the trip, the kids were a little too quiet for comfort. I went out to see what trouble was occuring and Adina was acting as Oliver's little therapy helper! It was so cute! She loves her brother so much. I added some pictures of her showing Oliver his vision cards.
While we were in Duluth we went to Canal Park, the Great Lakes Aquarium, Watched/ran the half marathon, and saw friends and family. Adina's favorite sayings while we were in Duluth were 1) Birdie Poop!! (there is a lot of that in Duluth) 2) When I was a kid, I would (she would fill it in with random stories 3) Mommy, I don't want to grow up...
Oliver started new therapy at Gillette last week. We discovered that Oliver really has strong feelings about certain things. He has just been very angry with his new physical therapist. She is great, he just is putting her through Oliver training I guess. He has yelled at her both times, and when she left the room he chuckled a little bit. I wonder if he knows what he is doing, as soon as she came back in the room he started to yell again. Little stinker. Don't mess with Oli!! =) Oliver has temporarily graduated from the feeding clinic. They want him to become more centered before we really push on to the next step in foods. He gets sensory overloaded very easily. They decided that Oliver has such major sensory issues that we need to take a little step back and get him into the Therapy pool. I guess it is the best way to start acclimating him to the world. I guess if you think about it and try and close your eyes for a day, you would become very sensitive to everything.
He does have triggers for seizures we are learning. Loud overcrowded environments and overstimulation. So, if you are ever holding Oliver and he starts to cry and fuss (it is not you, it is Oliver) please don't be offended if John or I take him. It is the best thing for him to stay calm, he just gets over stimulated easily and knows different hands. Again, it is nothing anybody else does, it is just simply Oliver. That is what we have been told and we need to do what is best for the little dude. We still want everybody to hold and love Oliver, and talk and sing to Oliver, and snuggle and touch Oliver, and not be afraid of him. Everything in moderation.
Enjoy the pictures =) More to come soon I am sure..

Who is driving this ship!


This is so boring!


I've got the whole world, in my hands?


Look at that Oliver!


Stop Daddy! Birdie Poop!


Family Picture Time


On the Rocks


Look at this vision card Oliver..


Now this one


Smile Little Man


Cheese!!


Time to paint...everything!

Summer Time!

Hello Everybody! Summer is finally here in Minnesota and it is fantastic! Here is an update to the last blog. We were trying to figure out his barfing (vomit if you prefer the less crude terminology.) I was sure they were going to jump the gun and go right to changing his G-tube, which goes right into his tummy, to a GJ tube which would go a bit past the stomach. The GJ tube often prevents the barfing, which would assure us that he would not suck fluid into his little lungs. Only problem with the GJ is that fluid has to be dripped in very slowly with the feeding pump because the jejunum (part of the intestine where the GJ tube enters) is not big enough to handle a large amount of fluid. I REALLY do not want to go here because Oliver will always have the machine attatched with few breaks. I also know a surgery would have been another option. Luckily for us, we have a great family practice doctor who knows us well (we talk weekly on the phone) and was a strong advocate. We are trying a med to empty his belly quicker and knock on wood it is working okay. Since he started it we have not had to sleep on edge as much. There are times where we hear him start to vomit and gasp for air and we run to roll him over in his crib to help him clear out the vomit before he sucks it in. Graphic I know, but life. That is that issue.
We went to the neuro. today. We knew our regular was out doing research and would not be there today and then found out he has left for good. When you have a special needs child you develop a very close relationship with doctors so I was pretty bummed. Life goes on and luckily I asked around during clinicals (a few months ago) and our new guy is great (we saw him today.) Oliver still has seizures at times so we are trying to get that figured out. The neurologist told us that life with a special needs child is sort of like being the road runner. When you run off the cliff, you are just fine until you look down. When you look down, that is when "s*** hits the fan." His words not mine, but I do like that, and get it!
We also started a new therapy today at Gillette Children's Specialty Hosp. For now physical ther. and in a month he will see a special rehab doctor. Oliver is getting to the age and size where the stroller is getting hard, he can't support himself. Most likely we will be getting fitted for a wheelchair in the next year. I am actually relieved at this, I think it will make life easier. Also, they will assess if he needs other equipment and do lots of therapy. It was funny, the therapist was rolling a ball that made a funny noise. Oliver was apparantly not a fan. He bobbed his head up and shouted! I was in shock, he never has done this. She rolled the ball again and he was mad, mad, mad, and just screamed like he was yelling, NO!! I laughed so hard I was crying at the same time. It is little moments like that where I give him a hug and a kiss and think I am by far the luckiest mom ever! It is easy to lose sight of what is really important in life. Oliver always pulls me right back in, whenever I get frazzled by lifes little bumps that I can so easily make a mountain, he smiles, or coos, or screams. He just knows how to grab me and say WAKE UP to the good stuff mom!!
I cleaned out the camera and found some hidden cute pics. Here are some good ones!

Oliver was only a few weeks old here. I love this picture.


Two cool dudes! Clearly no shortage in the chubby cheek department!



Beach Time!!

Fun with stickers..and dad!


Up north to see the greats in May (when the seizures started)


Uncle Jim and Uncle Don came from CA to visit! It was great to see them! We miss and love our CA family!

Grandpa teaches Adina to play her favorite instrument, the bassoon. Not sure why that is her favorite, but it is =)


Oliver working hard in therapy with his favorite OT, Susan.

Our niece Kali Rose in a bowl. She is seven months old already!! Such a cutie pie!

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!

What A Great Night!!

Oliver's Olive Tree

We celebrated Oliver last night at the Olive Branch Celebration and it was a blast!!! Our friends Joe and Amanda got the whole event together with great music and food and we appreciate all of their work so much!! All of the volunteers were amazing and put so much love and energy into making the night so special for our family. John and I went home last night and all we could really say was, WOW! We are so blessed to have so many people in our lives with such caring hearts. Thank You Everybody. Each and every single one of you are so special to us. Thank You for helping us celebrate Oliver. Words cannot express what having you all there last night meant to us. Oliver had an eye appointment yesterday morning before the celebration and only took an hour nap. I was worried that he was going to have a rough night. He knew that he was surrounded with love and also enjoyed the dinner music and the Peder Eide concert. We all enjoyed the fantastic music and the kids were all dancing up a storm.


Peder Eide snuggling Oliver. Oliver LOVED his music. He was calm and totally digging it. Oliver has always been calmed by music, this was the perfect night. Thank You Peder Eide.


Here is the group of people who helped us celebrate, it was packed house!


Great group of volunteers who realy worked hard!


Joe Johnson who hosted the event snuggling Oliver. Clearly, Oliver was very comfortable.


During dinner we were able to enjoy these gifted musicians.


Peder Eide performing and the kids dancing up a storm.


Grandpa Dave holding Oliver and good friends Ryan and Julie visiting with Oliver =)


Not only the young kids were dancing, the old..er kids were dancing too!


Adina REALLY enjoyed the night, especially dancing with friends and family.



Thank you Joe and Amanda for everything, you both have so many gifts and talents and we are blessed to have you as our friends. Thank You Peder for your fantastic music. Also, thank you for being so caring and loving. We were all touched by the night and it will forever impact our family.
Thank You Everybody.

Olive Branch Celebration

Just wanted to remind everybody of Oliver's big celebration on the the 28th. It is called "Olive Branch Celebration" because Oliver means Olive Branch. We cannot take credit for that clever idea. That was our friends Joe and Amanda. We continue to be amazed at how blessed we are with loving friends and family! It is the only way we have made it through this crazy year! Let us know if you need tickets.
Oliver seems to be doing okay after his seizure. We are pretty sure that he has had at least one more since the first we noticed. We are keeping our fingers crossed that there is not a lot of abnormal activity on the EEG.