Wednesday, February 12, 2014

Another Great Day!!

Monday was Brocs Day at Mott Children's Hospital. It was a long drive with some snow but we finally made it.

First Broc had bone x rays done to measure the length of his bones. Great news there his right tibia has grown 2mm so his LLD is only 8mm now and not 1cm as before.

Next we went to have to ABI's done and the ultra sound of his graft. More great news there the blood flow is looking great.There is still the minor blockage but nothing to worry about for now. His ABI's were very close to normal looking so more great news there.

Lastly we went to see Dr Coleman as Dr E was out ill for the day. She gave us the best news ever. BROC DOES NOT NEED TO HAVE LEG SURGERY NOW!!!.
We were all so happy to hear this news. That means he can hopefully learn to ride his bike without training wheels this Summer and we can go to the beach and pretty much do whatever we want this Summer with no restrictions.

We do still however need to monitor his activity and not let him over do it even though he says he is fine. He likes to push himself so he doesn't miss out on anything. We still need to go back in 6 months to have everything checked again. Our hope is that his right tibia will continue to grow and his LLD will deminish. Also that his graft will continue to stay open and he will not need to have another bypass repair.





Some more great news. Remember I mentioned in an earlier post about Broc going to Cincy Children's Hospital. Well we got the call and he has been accepted in the Aero Digestive Clinic. All the tests have been ordered and we are in the process of getting approval from the ins and then scheduling all of them. We have been told the wait list is about 3-4 months. All the testing and procedures will happen within a week. In that week we also get to see Cardio,GI, ENT and Pulm specialists. Broc will also have a sleep study done, a double probe study,a triple scope and some GI testing too.

We are very hopeful that this will give us a clue as to why he is still having many issues. As soon as we know more details we will let you know.


Thank you all for your continued support and prayers.

Marks first book report.

This was Marks first book report.We are so proud of him and his teacher said that he did a great job too.
Well done Buddy!!








Congenital Heart Disease Awareness Week

CHD Week is almost over. I joined the Roar to Run Virtual run and wanted to run/walk 13.1 miles. Unfortunately I came down with pneumonia on Thursday. Unbeknown to me so I started the journey anyway on Friday. I was able to walk 2.29 miles which I was very proud of.




Here the boys are wearing RED for CHD Week.


This is Brocs pic from the Midwestern Heart Calender.



Thank you to everyone who has,and continues to support us through his journey.


Swim Therapy

Since the boys both have an Ehlers-Danlos dx now it was recommened that they do swim therapy like I do to help strengthen my joints and muscles. For the boys it is helping them with their fear of water and getting more used to being in the water.
Baths for them are still a nightmare.We still have not figured it out yet,but are hoping that the swimming will lessen their fear.

Hear are some pics of the boys in the water and some of the things they do.






Here they are walking on the treadmill in the water. They love running on it though.

Monster Jam

A few weeks ago we headed to Indy to see the Monster Jam with Paige and Efrin. We all had a blast. The truck were great and atmosphere was wonderful. Loads of people,lots of cotton candy and souvenirs to be bought.

I have lots of pics to share. Some of them may be blurry, that's because the trucks never stopped and I tried to get a lot of action shots. Hope you enjoy them all.



























That was our day in a nutshell. Lots of trucks smashing things and loosing tires and things.