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.