Wednesday, April 21, 2010

It's April vacation and we have almost finished our annual April doctor visits. Michael is doing fine. During the winter Michael was getting tired and sick. He often had to rest after school and miss evening activities or other weekend things. It turns out that Michael's asthma was out of control and he was anemic again. We changed his asthma medication and regular routine, as well as his spacer. This helped. Michael was also started on mega-doses of iron to help. As of 4/21/10 we are reducing the amount of iron by half. Good news for Michael.

We continue to do weekly Sub-Q treatments at home. These aren't a favorite weekend activity but Michael does understand they are needed. We are grateful for all the blood donations that help make IgG treatments possible. It is with these treatments that Michael is healthy enough to be a five year old.

Last June Michael started taking Tae Kwon Do to help with his endurance issues. Although he misses many classes due to health, he has continued and has earned his yellow belt. Michael can't wait to earn his next stripe. He recently finished a 50 minute class that was very challenging. Michael was very proud of himself for finishing.

During the winter we added to our family. We now have a lovely Labrador puppy named Seamus. He currently weighs more than Michael and will for the next many years. Seamus is a great dog. He has learned many things and will continue with training. Michael loves having a dog. We are looking forward to many happy times with Seamus.

Michael will turn 6 next month. He has been on IgG treatments now for more than half his life. Michael's treatments will continue for several more months. At some point he will be taken off to better assess his own immune system. We are working with more doctors to gain insight into Michael's knee and leg pain, as well as his endurance and heat issues. There are no quick answers. Michael mouth sores seems to have lessened although his skin rashes have increased. All these things are charted so patterns can be studied. We hope for some solid answers this year.

Thanks for caring and keeping Michael in your thoughts!

Tuesday, September 29, 2009

Summer/Fall 2009

Hello -
This was a restful and rainy summer. Michael was not well for most of the days. He had his vaccines and then ran fevers for most of the rest of summer. Instead of taking bigger trips we took short day trips and then stayed home for the next few days. Michael and Sean were able to see a few neat things despite having health issues.

We ended the summer with a check-in day at MGH. Things looked "interesting" and patterns had clearly developed in terms of Michael's fevers and mouth blisters. The Drs are still thinking about more testing but needed to wait due to other issues. During this trip Michael was diagnosed with a sinus infection - he probably had it most of the summer. At least he would start treatment before school started.

Michael started kindergarten and loves it - the kids, the teachers, the lessons! The days took a lot out of him and he got sick. I think he actually was getting sick before school even started - but who knows. School has been great and very supportive of Michael's situation. We've almost finished the six weeks of antibiotics - yeah! We will return to MGH for a few visits all in one day and then do all testing at one time which should put less stress on Michael.

Michael continues to do weekly Sub-Q treatments at home. These take about 2 1/2 hours total time but have made a huge difference in our lives. Michael doesn't really like the "pokey tubes" but knows that with this medicine he is healthier.

In order to build endurance and strength Michael started Tae Kwon Do this June. He takes class - sometimes the whole class and sometimes he drops out. Lately he has been completing the entire class which is 60 minutes. Michael earned his very first, blue stripe for his white belt and was thrilled! He has his own techniques but seems to be doing just fine.

Thursday, May 7, 2009

May check in

Hello -
Michael and I went to MGH for the day on Monday May 4. We spent the morning with his immunologist and after a brief lunch (chocolate milk and an apple) we met with another specialist. The appointments went well. Michael has grown in height and weight. The weight gain was big, as last year at this time we were looking at an 8 pound loss.

Michael has been on IVIG or SUBQ treatments for a year and he has shown gains in living more "normally". The IgG replacement treatments have helped him stay a bit healthier.

The MGH day ended with blood work - Michael hates this! We found a new gift shop in Yawkey and Michael picked up some Cheetos. This took his attention away from the bool test for a bit. During the blood drawing Michael was less than happy, but the MGH staff was great with him. We will get the results soon. We will see if Michael needs a larger dose of IgG and/or more iron supplements.

Other than that we are getting ready for him to go to school next fall.
Take care and thanks for reading!

Tuesday, April 28, 2009


April 28, 2009

We took the boys into Boston for their eye exams. Boston is getting a bad rep. for Mikey - all he thinks about are tests, doctors, and "blood" (anything with a tube attached). We decided to go ahead and act like a tourist for a brief moment. Charlie, Sean , Michael and I took a Duck Boat Tour. It was great. Sean soaked up all the facts and remembered many lessons from school. Michael commented the entire time on the people, our super-big boat, and anything he could think of. As soon as that was over we headed off to the doctor. Michael announced loudly he doesn't like this doctor - he remembers the eye drops! We managed through the events and after about 3 hours we were set to leave. One note: Michael has been complaining about his eyes feeling like sandpaper when he is thirsty. He has the same bumpy skin on his eyeballs and on the tissues around his eyes that he has on his knees and's bumpy and dry! We have new eye drops for this. It will be interesting to see if any drops get into his eyes. Sean will get new glasses and we will see if Michael needs any in October. Next trip to Boston will be less tourist-y. We head in next Monday for a morning and afternoon appointment, after that off to Waltham for gastro..