January update

So much is happening. I may just do monthly updates unless something urgent comes up.
I'm having lots of issues myself medically and seeing various specialists so I can get myself fixed up soon. Unfortunately EDS is a nasty connective tissue disease that  causes many issues with various parts of your body such a joints, ligaments and tendons .

Broc likes to keep us on our toes and needed a new central line too. Unfortunately with wear and tear sometimes these lines breakdown. Thankfully his Riley team was able to get us in the next day and get it replaced. Brocs body doesn't like any trauma and responds with elevated counts and fevers after any procedure which takes him for a couple days. We met our wonderful friends while waiting for Broc. Always a lovely surprise to do  into these 2 cuties .

We have had feet of snow upon feet of snow. The boys had a great time outside last week. 

Broc is only line free for an hour each day. He loves that hour. Tearing around the house like a regular kid.  Thankfully his health has been pretty good and we have still managed to avoid the flu. I'm hoping to get much needed answers this week for myself .

Thank you for everyone's support, love and prayers.

Hope and Brocs Cincy trip.

December was a rough month for us. I lost 2 very special people to me. I lost my grandad and my Ouma. People wonder how I have so many Grandparents. Both my parents parents divorced and remarried so I had 4 Grandparents all together.  I only have 1 granny left.
Grandad who we loved going on walks with through the forest in Newlands and then later when the moved to Stellenbosch. Loved showing us everything nature. We miss you and look forward to seeing you soon.

Ouma I loved cooking with you and also taking walks. I know a lot of the time we lived far away from each other my boys were able to meet you. I love how you always brought Jehovah and his creation into every conversation we had. We will miss you and look forward to seeing you soon too. Thankful for the wonderful hope we have.

Now onto Brocs Cincy trip. Well he didn't need injections into his laryngeal cleft. We were very happy to hear that his cleft repair is holding well. We did however not find the exact reason why he is choking. We did unfortunately find out that he has one side of his epiglotis is floppy and that could be causing the problem.  He also has a large tongue base and uvula that hangs really low down which is causing him to snore at night. Sometimes he is not handling his secretions well and that could also be a reason for choking. They are thinking of doing a swallow study but nothing is final until the Aero Digestive Team have their meeting on Wednesday to discuss his case. We are still waiting on some more test results too.

Thank you for everyone's thoughts and prayers.