Lots of news!!!

Last week Broc went to see the Rehab Dr for his Ehlers - Danlos Type 3 dx. Dr Collins was amazing and took her time talking to me. She knew a little about our family history as I had been there before so we could focus completely on Broc and what is best for him.

We spoke mainly about his G.I. issues and then the new issue being his lack of physical strength in his core and endurance over all. He is finally gaining weight again. I think drinking the soy drinks have helped him with that and also the fact that he doesn't have a weird bacteria living in his gut anymore.

His eating is still not doing well. He skips meals or just does not eat at all. He says he doesn't feel well and if we force him to eat then he is in such pain and has terrible nausea so for him he would rather not eat at all.

Dr Collins was very impressed with how flexible he is in some places. She said that the gut, immune system and  dysautanomia  are the 3 main systems affected by EDS Type 3. We know Broc has issues with all 3. She thinks the reason Broc is regressing physically is that his muscles and nerves are not absorbing all the nutrients that his body is taking in.

It does make perfect sense cause when ever he gets a virus which is about 2-3 times a month his gut shuts down, his sensory system goes crazy, he never stops talking, like he is on overdrive, he also falls all over the place is balance is totally off. We call him the drunk tazmanian devil.

Dr Collins recommended a lot of GI testing that she wants him to go through to make sure his body is absorbing the nutrients it needs to function properly. We know he is getting the calories but they could be empty calories if his body is not absorbing them.

We also discussed the issue about the regression of his core and overall physical strength. We have intensified his PT and OT and have homework to do at home too. I have also signed the boys up for swimming therapy too to help strengthen their muscles and joints. If his strength is not improving over 6 months then we will look at doing a brain MRI to see if there have been any changes since his last one when he was 3 years old.

Yesterday Broc also saw a new ENT Dr. He studied at Cincinatti Children's for 2 years. Wow!!! what an amazing Dr. I really hope that his willing spirit never leaves like all the other Drs. Once Broc becomes too complicated for them they bail on him. Dr P is referring Broc to the Aero digestive clinic. It is a wonderful system where you will see all the different Drs at the same time. When Broc is in the O.R. having the necessary tests done all the Drs are there to look at him and can all formulate their plans at the same time. We are really hoping to get into their G.I. clinic too. Dr Zaidi who is Brocs current G.I. is a wonderful Dr but at the moment he is at a loss for Brocs treatment as Broc is maxed out at the moment on everything but still has many symptoms. Broc has never been seen by a whole team before so we hope this approach will be really helpful for finding some solutions for him.
We also heard they have a wonderful EDS Clinic too so that is a bonus.

Dr P is making lots of phone calls and sending emails and we will wait patiently for the Nurse Practitioner to call us to organize this trip for Broc and I.

In a little over 2 weeks Broc will be having another big appointment. We will be heading to MOTT for our 6 month check up on his femoral bypass surgery. If you remember from the last time we were there they found a blockage in his graft.

Thank you for all your love and prayers and support. A big thank you to all the friends and family that supported us through our difficult time of Marks mom passing. She was an amazing Mom and Granma to us. She will be missed until we get to see her again soon. We love you Granma.

   

Snow Party and another party

We had a snow party for the boys without any snow.We had a bunch of it and then the rains came and washed it all away. Oh well...... you all know we cannot control the weather or anything else for that matter. Due to the weather and Old Man Winter so many of the boys friends were ill too.

Never the less we had a good time. Lots of food to eat and movies to watch. The kids also frosted and decorated their own cup cakes. I made gluten free cup cakes were were so yummy and enjoyed by all.

Here are some pics of our fun day.

Broc wanted everyone to know what movie we watched.

This week we went to another fun afternoon at a gym.There were organised games like dodge- ball, bingo,soccer,play dough and painting for the little ones.We all had a blast.

School starts next week and then the fun ends. Next week is a busy week with Drs app for Broc and Me.