February - what a month!

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.

Rollercoasters

There is a reason why I hate rollercoasters.They make you sick to your stomach.Broc had another CBC done today and yet another blood culture. His Immuno Dr was concerned that he may be having a reaction to the mesh but the surgeon said otherwise.As long as he has been doing these vascular surgeries since 1995 they have never had anyone react to the mesh, but I guess there can always be a first time.

So we were instructed to have another CBC done today.His eosinaphil count was up to 31.4% today.It was 27.9% on Friday evening.Last night everyone was concerned about the mesh and saying possibly that he may need surgery again and now the Immuno Dr feels that his fever and eos.levels have nothing to do with surgery and that maybe with Brocs immune system being low from surgery he has caught another virus that is causing havock with his levels. So once again we are on the virus train again.

If Broc still has a fever tom the Immuno Dr will put him on a course of steroids to see if it helps.He will also call the surgeon on Thursday to discuss if anymore needs to be done. So from having possible surgery again to now him having a virus.OH MY ..... what a ride it has been for us. Now we are in wait and watch mode. Wait to see if he developes any other symptoms or if his fever goes any higher.

Two of his stitches are sore to the touch so we are keeping a close eye on those too. Everyone is on high alert for Broc developing an infection somewhere. With it being a holiday tom all the Drs are away.So all we have left is the ER. We are going to try our hardest to avoid it at all costs.

We were really hoping to have a break from lab draws, Dr visits and hospitals after his surgery but I guess with Broc you never can tell.