Jared has been doing pretty well this past month! School has ended until July so he is catching a little break for now. The weather had been terrible here. So much rain. We put Jared's swing on the back porch so he can try and enjoy some time outside though he really can't stand it for too long. The pic is him enjoying time on the porch.
One really awesome thing that has happened is that the nurse who will be providing Jared's care when he starts school is a nurse with a ton of experience with MLD. She actually took care of a boy in Cape May who also had MLD. We were connected through some wonderful people in the MLD community and I met with her a few weeks back. She will be a good fit for Jared.

One thing that had me a little bit alarmed with Jared was that last week after I took the AFO's (ankle braces) off of Jared I noticed a few spots of petechiae on his legs. The next morning he had some bruising on his eyelid, legs and elbows.  He thrashes about alot so that is how it happened but it just seemed to me like he was bruising really easy. Way more than normal. I talked to Dr. Raab at DuPont and he sent us for labs. I decided to do them at the local hospital. Big mistake. We finally got the labs back today (we had them drawn last Weds.) and the labs show that he has a slightly higher PT time. PT is short for Prothrombin Time. Basically that is your coagulation time or how your blood clots. It is not much higher than normal and the PTT (partial thromboplastin time) was completely normal. He also ordered a CBC but they did not do that test so we have no results on the platelet level. So Dr. Raab just wants to keep an eye on things and we will repeat those labs again in about 2 weeks.  We will have them done at DuPont. I don't think he is worried or we would have been asked to come in sooner than that.
Otherwise everything here is good. Robbie will start 6th grade in the fall and Shane will move on to 2nd grade. They both did outstanding on their report cards! They both were in the playoffs for baseball and both of their teams won the Championship games! They are getting so big!
We go back to Duke the last week in July for 2 year studies. Can't wait to see the MRI. Hoping to see some improvements in the white matter of the brain!
Thanks for checking in on Jared!