A busy week!!

Monday was the Dairy Farm then Tuesday was a rest day to recover from all the walking.
Wednesday Broc and I drove down to Riley for his brain MRI. We had the lovely company of Travis and Kari. Thank you so much for keeping us company.You guys are great friends even if we only see each other during a hospital visit.

Waiting to go back. Broc does have a croup virus so he really was not up to anything that day.

He was so ready to get out of there.We had to slow him down with wanting to eat and drink.The nurse was hoping he would sleep a little once he came back but all he wanted was his mommy and to watch his dino movie. We were so worried about his airway with him being sick but he did so well. I was even allowed to go back with him while he was breathing in the gas to go to sleep. Man what a fighter he is. It took 3 of us to hold him down till he fell asleep. but once he started breathing it he was out in a couple seconds.

We got great news from his MRI.There has been no change since his last one in 2012. Great news but still does not explain why he is having all the regression issues. We are still waiting on Dr Boaz to let us know if there was any Chiari symptoms present.

Thursday Broc had his first evaluation with the WOW Vision Therapy Center. What a wonderful place with loving people. The testing was really interesting. All the testing that the Dr did he did on me too so that I could know what he was doing with Broc. I really like how involved the parents are even in the beginning process.

By the time we left Broc earned 3 more dx's.
1. Convergence Insufficiency (CI) is a common condition, characterized by a difficulty or inability to effectively converge or align both eyes together to perform near oriented visual tasks, like reading and computer work.
2. Oculomotor Dysfunction.Tracking is the ability to move our eyes from spot to spot while maintaining focus on the object we are looking at; it is an essential skill for reading and other everyday tasks.
3. Accommodative Dysfunction. Accommodative dysfunction simply means a focussing problem, particularly at near. This is not so much an eyesight (or clarity) difficulty as a problem in maintaining accurate, comfortable focus particularly with near work. 
Broc will have another hour of testing next week where he will be tested on his Visual Information Processing. After that the Dr will have a meeting with myself and Mark and we will decide on the best plan for Broc. He will also be sending a report to the school where they will accommodate Broc with different things that he suggests too.

Since Broc has no changes with his MRI we are really hoping that these new dx's will give us some more insight and we will better be able to help Broc at home and in the classroom. We are also hoping this will help Broc to eventually ride a bike without training wheels, falling less, and being able to stay more attentive.

Today (Friday) Broc had the last of his dental work done. He was such a champ that he didn't need any numbing meds at all. It was all done with laughing gas. So proud of him. He has been a rock star this week even though he is not feeling well.

We still have Cincinnati and Seattle ahead of us. We are hoping to have some family fun in between all the Drs and hospital visits.

Thank you for all you loving support and prayers.They are very much appreciated.
 

Fair Oaks Dairy Farm

The boys and I and lots and lots of friends went to visit the Dairy Farm. What an amazing day. Seeing all of Jehovah's creation. The birthing section of the dairy farm was the best. We actually got to see little babies been born.

It was a very long day and very tiring but well worth it. The boys asked if they could please go back the next day. Thats how much they liked it.

There are lots of pics to follow.

In the bus ready to see the cows and calves.

Having some fun jumping on the BIG balloon. It was a great sunny day too.

Off to see the piggies!!!

A little piggie only a couple minutes old.

The next few pics are of a calf being born. If they gross you out then skip these.

 We were watching 2 births at the same time.Just a couple minutes apart. What a great experience for the boys.
At the end of the day we all enjoyed a yummy ice cream cone.

Cincinnati for Mark

Before I left for Cincy Broc was playing basketball outside and hurt his fingers so I had to take care of Buddy before I left. I felt so bad for him cause he really wanted me to stay but we got him all taken care of. Thank you so much to Amber and her mommy for fixing our Buddy so early in the morning.

Mark and I took a trip to Cincinnati Children's Hospital to see the Motility Clinic. We stayed with a lovely family.The Mesmans. Thank you so much for your hospitality and generosity. Mark said thank you so much for the yummy bread sticks. He now loves bread sticks with cheese on them.

The trip to Cincy was a little hairy for me. I was really nervous driving down by myself but we made it safe and sound with our trusted Siri from the iphone and lots of prayers.
His app was very informative and we both learned a lot about the medications Mark will be taking and the ones he already takes. We also learned their different functions and how they will all work together for him.

Dr K was very friendly and to the point.Which I love.I hate nothing more when a Dr walks in the room and tries to paint me a pretty picture.I /We are not scared of anything anymore. I think we have just about heard it all. I love it when they get to the point ,the reason why we are there and then a solution if there is one.

He asked Mark to put his thumb against his forearm backwards and of course he can do that as anyone with EDS knows that is our trademark so to say. He said yip you have EDS would you like to know more about our clinic. I was so happy because he works very closely with the EDS clinic and actually deals with a lot of kids with EDS. He also explained to Mark that his body works the way it does because of having EDS. He did say that his issues are sort of fixable but will never go away totally so the best solution is to give him all the help he can get to function as regularly as possible.

We are hoping to have all the kinks worked out by the end of the Summer so that next school year everything will be running smoothly. We will have some hiccups but hoping those will be few and far between.

So Mark will be taking 2 different medications to help his stomach in 2 ways and then he will have a clean out every second weekend. He explained that with EDS our colon is like cooked spaghetti and very lax. It has very little tone to do the work its supposed to do.

This will be something that we will have to get used to but I am sure that once we have a good schedule established it will all work out well. We are thinking that Broc will probably go onto the same or a similar schedule once he is seen at Cincy so hopefully with both of them doing it, it won't be so bad.   

Mark will also be having a few test done to see how his colon is shaped,if its all stretched out like it shouldn't be and how his whole system works from top to bottom. We are hoping that one of these will be done when we go down with Broc so we wont have to make that many trips down there.

We are hoping that Dr K and his team will be able to help Mark and Broc too. We are also going to be involved with the EDS clinic there too.

It really is a beautiful city. So many trees. The drive down there was really pretty. Next time we go we are hoping to see some of the sites of the city too. Mark was so tickled that he was in 3 states in one day. Indiana,Ohio and Kentucky. He loved crossing over the bridges too.

Field Day and Playground night at School

I helped at Field Day again this year. I love being able to spend the afternoon with all the kids including our boys. They love showing me how strong they are. I was in charge of a water game and loved wetting the kids with the sponges.It was fun for everyone. Some had a little too much fun and would drench themselves in the water. It was a warm day so it was a nice cool down too.

There were different stations all around the playground and parents were in charge of each station or game.

Playground night. The boys have been talking about this giant obstacle course. I'm thinking they were expecting it to be 60 feet high and not long but either way they had lots of fun. 

This is the plant that Mark and a friend planted at the outdoor lab. There was a big garden with all different kinds of plants that the kids had planted. He was so proud of his plant.

There was Nelsons Chicken - Port a Pit for dinner too which made dinner very yummy. For those of you that don't live in the US Port a Pit Chicken is a very well known smoked kind of chicken. Once you taste it you will be hooked. It's delish!!!!