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.

Good news and IVIG

On Monday we took a trip to Michigan to see Brocs vascular team. Thankfully the weather was fairly decent. It only started snowing when we were about 1/2 hour from Michigan. 

We had our mandatory pic in front of big Bird and Brocs frog as he calls it.

We then went onto to find out all the results of his testing for the morning. We got the amazing news that Brocs legs are only 1mm different. He has grown 4" in 6 months. It's wonderful to think that Broc will not need another vascular surgery unless his arteries do not grow with him. As far as we know they are doing just fine. We have moved from 6 month follow ups to 1 year follow ups.

Char has been amazing and helped us so many times over the years. 

Dr Elisaon has saved Brocs leg twice. An amazing Dr with a heart of gold.  He has stayed longer at tbe hospital after he was supposed to be home just to come and talk to us. He came in late at night when Broc became really ill in 2015. A truly loving team that really cares about their patients.

Our drive home wasn't too bad , a little snowy but not bad.  We will be heading back in October for our follow up.

The boys and I went to La Porte hospital on Tuesday for Brocs IVIG infusion. Broc became very ill during the first 30 min - 1hour. He became very nauseas and his blood pressure dropped very low. They increased his iv fluids to see if that would help and his Dr ordered a cbc just to make sure everything was ok. All his labs pointed to a viral illness and severe dehydration. It took his BP a while to come back up. Anyone that came into his room noticed how bad he was feeling.

His team have decided to give him half his IV fluids before his infusion starts and then to increase his rate every hour instead of every 30 min. If he tolerates that well then we can leave it at that otherwise we will increase his rate even slower. The tricky thing with IVIG is you never know when the kids will react to it or not.

Broc will be seeing GI on Monday and then our next big trip is Cincinnati Children's the first week of January.

Thank you for all your love,prayers and support.