What a start to Winter

The last 2 weeks of school the boys have had a weird virus with fevers on and off. They missed a few days of school. One day I was so sick I couldn't get out of bed so they stayed home too. Finally it seems like they are on the mend. I am still finding my voice and getting my energy back. Hopefully this not going to be a pattern of our Winter , the boys have done really well this year and we attribute that to all the Vit D they got for a whole month last year in South Africa.
I wasn't feeling the greatest over the weekend but the boys wanted to see the dinosaur movie so badly. It was a cute movie and the boys we glued from beginning to end. It was also a perfect length for little boys who cannot sit still for very long.

We are still dealing with Brocs reflux so Dr Turk is having us see his colleague who has studied these issue with kids at Cincinatti Children's. We will have a fresh set of eyes on Broc and hopefully we can figure out a solution for him.

We are still trying to get him to drink the soy formula to get more calories in him. I tried to have him go gluten free but he was so frustrated with not being able to eat things he liked that he just refused to eat at all. Mark,myself and his dr decided that was not the best option for him so we will just limit gluten intake. It also never took the tummy pain away either. Not sure if we will ever find a solution for his tummy pain.

On a happy note we have a snow party planned for the boys on Friday. A pity the rain came and melted all the snow. Oh well I think they will have fun with their friends whatever they do. I have lots of yummy treats planned and we are also setting up the jumping castle in the basement. We are hoping for a little snow for the kids to play in otherwise we will stay inside and drink hot chocolate while watching movies and playing games.

Hopefully my next post will be full of pics of our fun day.

A brave boy

We thought we had Brocs reflux under control, it seems not yet. This past week he has been refluxing a lot and clearing his throat all the time.
He is also running fevers on and off too with stomach pain. It seems like de ja vue all over again.
I will be calling Dr Zaidi tom to ask what else we can do for him. We are re testing his stool again to see if maybe the campylobacter is back or another bug.

His right ear has been bothering him for sometime now. I have spoken about the wax buildup in his right ear in previous posts. Dr Turk kept saying that he would only take it out under anesthesia as it would be too traumatic and painful for him.
Well today I spoke to Dr Moustafa's nurse about he ear situation and the fact that his balance has been off for quite a while now. She said she will speak to Dr Moustafa and get back with me. We were already there as Broc had OT and PT there today. She came out and said the the wants to try and take it out. Broc was so stressed by the time he knew what was happening. I had to lay on him and Amber held his head. It was not a pretty sight at all. Everyone in the whole clinic could hear him screaming. It breaks my heart to see him in pain and crying out when I know we are doing something to help him. Dr Moustafa finally got it all out. His poor ear is so swollen and inflamed inside due to the wax buildup. I am really happy that we got it out without anesthesia as that in itself is dangerous for him. We are hoping the buildup has not caused any damaged to his ear canal besides the inflammation.

Broc is still not eating a whole lot. He has days where he eats a good amount and then other days where all he eats is one meal.  We will wait to see what the cultures say and what else Dr Zaidi has to offer him for us reflux.

Here are some pics from the Assembly this past weekend.

GI update

Broc saw Dr Zaidi yesterday. He was not happy with the weight he has lost. I was expecting to talk about his reflux or the fact that we finally treated his campylobacter. But no he comes in and says what are we doing to put weight on this boy?

I was really shocked and thought that him loosing weight was not such an issue. He is lighter for me to carry when I still have to pick him up. Anyway I explained that I thought he lost weight due to having this bug living in him for so long. Dr Moustafa thinks it's because of the ADHD meds.

I know ADHD meds can decrease your appetite but Brocs appetite was going long before he started them. He used to be a big eater and at one stage they were thinking of cutting down on what he ate. He finished the course of Cipro on Sunday and seems to be much better. He has complained of very little stomach pain and seems to be eating. He is still not eating lunch at school only drinking. I am not sure why this is.

Dr Zaidi said that we need to give him supplements and extra calories. He gave me some samples of bright beginnings which is a soy based pediasure and Broc told him flat out " I hope you don't expect me to drink that , it looks gross!"
So I asked if we could try cyprohetadine which is an appetite stimulant. Marks takes it and now proudly weighs more than his brother. He has longed to weigh more than Broc as he thinks if you are older then you should be taller and weigh more too. It has really helped Mark gain some weight so we are hoping it does the same for Broc. Although  Broc does burn more calories due to his heart working harder.

The only down side to cyprohetadine is that it can make you drowsy. Broc has just been prescribed clonodine to help him sleep as the melatonin was no longer helping him. So now we have to play the see saw game and find a happy medium between the amount of clonodine and cyprohetadine. We are hoping that maybe he won't need the clonodine and the cyprohetadine will do the job of both of them.

Dr Zaidi is also very eager to see what Dr Collins has to say about Broc possibly having EDS Type 3 as it effects all organs in the body.

So far Broc has not had any bad effects from the Cipro but as we know C diff can spring its ugly head at anytime.

It seems as though we have found the right recipe of meds for his reflux for now as we are trying desperately to avoid the Nissen surgery at all costs.

His anxiety seems to be getting better too. This new med really seems to be helping him. He was actually able to sit through Cloudy with a Chance of Meatballs 2 without screaming or leaving. We did have ear plugs and sunglasses on him which helped too. It's really crazy to think that our kids would need to have all these things just to watch a kids movie. We don't take anything for granted any more.

Trip to see Ortho

Broc and I took a trip to MOTT to see Ortho about Brocs knee that keeps giving out. We had X-rays to make sure nothing was broken or there was a bone spur causing him pain. His knee has been giving out and now his ankle has started too. Ortho recommended lots of PT for strengthening. Broc already does PT once a week so we will just include that in his PT schedule. They think he has the beginnings of Ehlers Danlos Type 3. The same disease I have. Both boys will be evaluated for this next year as the Dr is very full.

On another note we are finally treating Broc for campylobacter. He has been dealing with this bacteria since Feb. We have already tried one antibiotic for it and it never worked so we are trying one that is very strong. He could get c diff from this but we are keeping up with his pro biotics to help with this. This ABX does make him feel sick but only for a short while. We are really hoping this cures his campylobacter as it does cause him a lot of pain and discomfort. He has also lost 3 pounds due to not eating. Both boys are dealing with a cold virus too so he has a lot going on right now. Spending the weekend lying in the couch watching movies with his brother.

Thank you everyone for your kind words, love and support.

First time at the Apple Orchard

The boys and I were invited to visit an apple orchard with some new friends we made.The boys were very excited and hesitant at the same time. The last hayride we did was very scary as there were no rails on the trailer and hay everywhere. Hay and sensory children do not go well together.It was scratchy and stuck to everything.

I was so hoping there was no hay on the ride and I was right.It was a great trailer with lots of wooden benches to sit on and no hay!

It was also a little chilly so we were all bundled up.

That's our new friend Mathew!

Picking apples was very funny.The boys didn't know how to pick them and were scared to even touch them.I guess a new concept for them. It's really amazing how many things you just take for granted.I really assumed they knew how to pick them off the tree.

Once I showed them how they were very eager. We had a few bugs to contend with too which Mark was not loving at all.

There was a small petting zoo as well as a few things for the kids to climb on. They had lots of fun and Mathews little sister was right along behind the boys.

Never too old for these rides.

We tried the maze but it was really soggy and made a quick exit. Thanks friends for a great day.

What a great day.

With daddy working different shifts for a while we decided to spend a little quality time with the boys. We took them to the movies today. Broc actually made it through the whole movie with the help of ear plugs and sitting on my lap and my coat to hide into when things got a little scary.

It was a great movie. Cloudy with a Chance of Meatballs 2. If you haven't seen it,its a great movie.So seldom nowadays do you find a movie that is clean with no violence. Well maybe a little when the bad robot get zapped with ice.

Once we came home daddy went to work and I went to school for Parent Teacher Conference. Both the boys did so well.Their report cards were wonderful to read. Their teachers are really impressed with their grades and so are we. Mark got all A's and Broc got A's and 1 B. Sorry to brag but these boys have a lot against them. Despite that they are excelling in school.

We have to get Mark to read story books as he is hooked on books about animals and dinosaurs only. Both boys have moved up a level in Accelerated Reading as well.

All round we are really really happy with them.

A rough week

Last week was a tough week for us all. Marks mom fell really ill and is still in the hospital.Grandma is very strong and is fighting so hard. The boys had the day off school so we spent a few hours with Grandma.

Some of my family members are having health issues too. Then Broc woke up a couple nights in extreme leg pain and then he was having it during the day too. We called his surgeon in MI and he asked us to have a set of duplex scans done to see if his graft has narrowed anymore.

Nothing bothers him while he has these scans as long as he has the I-pad to watch movies on.

Thankfully there is no more narrowing than there was in August. We have made some adjustments to his gym class at school. He does an activity with the class then rests.While the class is doing the next activity he is the teachers Super Helper to set up the next activity.

Broc is unfortunately still being bothered by the campylobacter bug that he had in Feb. We are thinking it must just be his body cause no-one else in the family has it. We are retesting him again in 2 weeks and then if its still there we will treat with another med. Unfortunately all the meds that treat campylobacter cause him c-diff. When that rears its ugly head then we will deal with this.Mark and I did some research on campylobacter and it can cause some really serious complications, hence our urgency to treat it. 

At meeting on Sunday the boys made a new friend. We hope to have a play date soon.

Then we ended the weekend with basketball. The boys had a ton of fun playing with another new friend.

Hope you all had a great weekend!

Weekend with Bentley

Britt was having surgery so we offered to have Bentley over for a few days. It was lots of fun as usual. He keeps Grandma on her toes and the boys full of giggles.

Boys and their drinks 

Boys and their balls

Eating breakfast before the Annual Meeting

New revised version of the Bible that was released.

Fall hayride

We were invited to a hayride and it was a load of fun. The boys had a great time with lots of friends and meeting new friends.

We ended the night with a bon fire.

Awesome News!!!!

Broc saw cardiology yesterday.

Walking down the dreaded corridor. My stomach is always in knots everytime I walk this path. Of course all Broc wants to see is his heart on the screen. He loves to see his heart and hear it beat.

Lying still like a statue for his EKG. This is always hard for him, but I distracted him with the spinning light that he loves so much.

All done and waiting for Dr C to come in and talk to us. Well as you can see the news was great. There is no new change to his heart function. The leakage or regurgitation is still in the moderate range. Dr C said that he has seen kids stay like this well into their teens. That would be awesome if Brocs heart will stay like this for that long.

Thank you all for the love,prayers and support as always.

We celebrated with a family dinner last night.YUM!!

A bundle of nerves

Tuesday will be Brocs cardiac check up. It was originally in Nov but because we thought that he was going to have vascular surgery to repair his blockage we had his heart app bumped up. Fortunately he is not having any vascular surgery soon.

I am always a bundle of nerves when the time comes for any big appointment. With Broc we just never know what his body is going to throw at us. I go into these appointments expecting the worst and then be amazingly surprised when they tell us all is well and to come back next year.

I know MANY of you will tell me that is not the way to look at things but that is how I handle things. I have gone into so many appointments being positive only to be blind sided by bad news.

He is doing really well.He has been ill with a virus but really seems to be bouncing back much faster.He is doing well in school too.A little behind but coping well.

I will update everyone tom with the news good or bad.

Thank you for all your love and support and prayers. Without my friends,family and supporting husband and Jehovah I would never get through days like these.

Philly Trip no. 2

While we were in Philly for the second time for our brain imaging, we took the last day and did something fun. This is the boys in the lobby having fun with all the mechanics.

Mark getting his stickers. Broc didn't end up getting any scans done due to his heart and ear tubes. He was not upset at all!! 

Of course we cannot leave there without a little dj ing. The boys had a blast as usual.

We went to the Franklin Institute for the morning. We did not see everything as we only had 2 hours before we had to leave for the airport but we made the most of our time while there.

Here are a few of the things we saw while we were there.

Wish we had more time to spend there. We never got to see the third floor even. But so happy with what we were able to see. A great place to visit with kids.