Hop on the bus, Gus

Hello and Merry Christmas or Happy Easter. Whatever holiday we happen to be closest to on the calendar by now. We have had a busy year as usual and are behind on our well wishes and December greetings.

We will start with our fearless leader, Christi. Christi is doing well. She had a good recruiting year and we are thankful for her continued employment and great working environment. This year marks her 11th year at Santa Rosa. Although Christi is blessed with a good job most of the domestic responsibilities fall on her shoulders. We are currently trying to figure out a plan to remodel our current house or find another that can be remodeled easier for more cheaply than our current home. This is not an easy choice as we love our current home, neighborhood, school and neighbors. Our son, Gus has grown to a point that our bathroom, hallways and bedroom can not accommodate him for much longer with out some serious adjustments or with out possible injury to Christi. As many of you are aware of our current situation, we would like to acknowledge all the help, financial, emotional, brain storming and good old sweat equity that has been provided. You will never know how eternally grateful we are to all of you. 

Gus. Gus is a rock star. He is doing very well. He is in first grade. He is in the highest Reading and Math group at school. He is thriving and has lots of friends. He still works very hard in therapy and attends the Greater Cincinnati Conductive Education school during the summer and Evendale school breaks. He is a tiger Cub Scout. He got to participate in his first Pinewood Derby this year and loved it. His Uncle Jimmy and cousin Jacob helped him build and paint his car. I think he enjoyed that as much as racing the car. We are looking forward to doing lots more with the scouts. Gus finished playing his third year of baseball in the Miracle League in Fairfield. He will play again this year starting in the spring. Grant Mefford has been his buddy and made his experience in baseball a fantastic one. Grant is like having a big brother and Gus just loves it. Starting in the Spring also he will go to the Winton Woods Riding Center and start taking horseback riding lessons. This was made possible by lots of folks giving Gus certificates for the Hamilton Park District for his birthday. Gus loves the horses. I better stock up on carrots and apples as he likes to give them treats. 

Ugh, me (Maria). Well, my health has not gone so well. I have been on dialysis for over two years now and and had some other health issues. I was on hemo-dialysis - A process by which two very large needles are inserted and one tube carries out your blood to a machine to be cleaned and the other returns your blood back to your body. This is done 3 times a week over a four hour period. It is not fun and ruins any day you have to do it. I originally chose this method because all I had to do was lose some weight to be  considered for another transplant. It is easier to lose weight on hemo-dialysis or at least they say it is. With being depressed with the treatment and feeling physically too awful to exercise I chose to change to peritoneal dialysis. This is where a port is place in your peritoneal cavity and every day for 10 hours a day a special fluid is placed in the cavity, is allowed to dwell so that it can pull out some of the toxins, then drained. This is done while hooked up to a machine that fills and drains the fluid continuously over that 10 hour period. Optimally, this happens while you sleep but sometimes can be quite uncomfortable  or doesn’t go well and the machine alarms. It is easier on the body, however, and I thought that I would feel better and be able to exercise and lose weight for a transplant. That, unfortunately, has not happened. In addition to my auto-immune disease of IGA Nephropathy that killed my native kidneys, I have Addison’s Disease and Grave’s disease. They had taken out my thyroid for the Graves but the treatment for Addison’s is prednisone. Both of which makes you gain weight. Well to be fair, it doesn’t MAKE you gain weight but makes it very easy to gain weight and almost impossible to lose it. Some days I am so nauseated or fatigued I can hardly move at all. I hate the burden this places on my family but have little recourse. There is one more plan I have not acted upon yet  and will share with you in the coming months. I do not like the choices I am faced with but my choices are very limited at this point. I am missing a big chunk of my son’s life and have not been a very equal partner for my spouse. Pray for us all. These changes will not be easy. My biggest need will be patience and emotional control. God help us all.