Life has been incredibly busy, Jacob continues to keep us on our toes, he is doing good with IVIG except for having line access issues, the last 2 months the IV team has had to be called to get his line started and after discussing this with his team last week it sounds like we will be seeing a surgeron in August to get a port scheduled. Last week Jacob underwent procedure #22 for a new set of PE tubes that should hopefully last 18 months instead of 6 months. Jacob also is going to require major dental work in October he is having several cavaties filled, plus getting caps on some of his teeth and they are fixing his front teeth which are smaller than normal and are getting calcified, he is having all this done under sedation which is easier on him, they plan to most likely keep him overnight. Jacob just had an EDG done in April which came out good except for some flaring down in his main tummy and so we added another med to help that. Jacob also has some major bone density issues in multiple areas of his bones and so because we can't take him off of steroids for his lungs we have had to start another infusion which we started this past week. He continues to do well with his therapies. We are also switching to a new pulmonolgist as our's has retired. We are excited about this change, he's very familiar with Jacob and his history.
Joe continues to keep me busy, he's almost potty trained and doing well with it. He loves hanging out with Jacob at his multiple medical appts. We have also switched his pulmonologist to the same one that Jacob will see. It makes it easier on me for scheduling purposes. Joe hasn't had any ear infections since last August which is amazing.
Bobby and I are doing well and keeping incredibly busy, we have added a new vehicle to our family and I absolutely love driving her to LR. It's an 2006 envoy denali and she is fully loaded. We also have our amazing garden going and are already starting to get amazing fresh veggies. We also have taken our boat out several times. We have gotten to spend some amazing time with my older sister and we plan to visit her in Florida this fall, we also got to see my Aunt who came here.
Here's just a few pics for you guys to enjoy.
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