I signed up for auxillary pioneering for the next 3 months. I have made it a goal to do it every year so this year was no different. Except I got sick and was down for 2 weeks and then Little Mark got ill with a similar virus and was down for a week or so and then of course the weather was freezing and snowy so that didn't help either. I am very happy to say I made my 30 hours well 31 actually. Thank you to all my friends and husband for making this possible. If you rely on Jehovah things really work out. Hopefully the next 2 months there will be much less sickness and warmer weather. We have the Memorial campaign to look forward to as well. So exciting!!
We are very grateful for the happy news we got about Brocs leg but after reading the actual report from the radiologist there is still a little hesitation and blockage. Not sure why the Dr felt she had to paint such a rosy picture for us. We hope that Dr E will be back when we have our next check up in September.
The boys got wonderful report cards and are doing really well. Mark seems to be our whiz with all A's and Broc is doing great too.
We have bought special pencils for the boys to use at school. They are called PenAgain. They have a special loop where your finger goes through and there is little to no strain on your index finger. We are hoping this will make cursive writing much easier for Mark and also for Broc when he starts next year. They also make pens like that too.
Little Mark had an MRI done this past week. He did very well with the anesthesia and were home about an hour after he came back to the room. His MRI had the same findings as we found at CHOP when he had his MRI there. I had the same findings on my MRI too which I had done at CHOP. Our next step is for Mark to see a neurosurgeon and make sure that the spinal fluid is flowing properly around his brain and there are no narrowings. Since I have the same dx we have decided that I will go through all the necessary testing and if there are any solutions to the findings then Mark will be seeing the neurosurgeon too. He gets very anxious when he has to undergo anything like this so to not stress him anymore we will give him a break until all my testing is done with.
This appears to be a lengthy process as I first need a referal from my pcp which seems to be a process in itself. Hopefully she will be willing to do this for me.
Mark also got his sibling beads from the Beads of Courage Program. He is so happy to have a string of beads just like his brother.
This is Brocs string of beads from his Leg Bypass surgery in 2012. Every bead represents an IV,lab draw,procedure,NG tube etc. Basically anything he had done to him he got a bead for. We have signed him up for the catch up program too so in a couple months when Brocs name comes off the waiting list he will receive a bead for everything he has ever had done to him since he was born. It really is amazing to see everything in beads.
Thank you to everyone for all your love,prayers and support.