Several of you have reached out to me personally over the past couple of weeks for an update as I have not had much time to update my blog. Typically that means there isn't any bad news to share but I appreciate the personal inquiries. At least I know I’m not writing into outer space. We had a quite Christmas with just the 4 of us at home in Phoenix. We typically travel to Michigan to spend Christmas with my family but obviously were unable to do so this year. It turned out to be a good year to skip the Michigan trip as we were swimming in our pool while my family had single digit temperatures and no electricity for several days. My parents were hoping to make it here for a visit but with the bad weather, kept pushing their trip back and now will not make it at all. Christmas Eve we had to make a quick trip to the emergency room much to my dismay as Monday night Coleson’s G-Tube managed to come out and the balloon that keeps it in had burst. So while I was able to get it back in and secure it for the night, I did not have an extra G-Tube on hand and since it was Christmas Eve, it was unlikely to get a quick insurance approval for home health care to provide me with one. So instead they will get an Emergency room bill! Oh, and I got a Christmas gift from the Insurance company in the form of a 3 inch high stack of insurance claims. I guess the hospital in Minnesota submitted them all at once. That stack only covers July – October. Trust me, if you stack all of the claims for this year, I’m sure it is closer to an 8-10 inch stack.
In good news, the fluid around Coleson’s heart is decreasing weekly and he has come of the lasix completely and is only on his morning does of Steroid. However, he is starting to get the steroid puffiness, weight gain and just recently the steroid temper. He is close to 30lbs now which is getting hard for me to carry. He can walk – though typically runs – but quite often I have to hold him or carry him for various reasons. I’m not sure if the temper is just a 2 year old temper or steroid induced but he has gotten into the “Mine, Mine, Mine” stage and “No, No, No” stage. This is still on an exception basis and most of the time he is still very well behaved and loving. Many mom’s may be frustrated with this but I rejoice in the fact that he is acting like a “normal” 2 year old. “Normal” is not a word that I often hear for Coleson… in fact since he was born the most common words I heard was, “it’s not abnormal” which trust me is not the same as “it’s normal”. It is very wearing to constantly hear/be reminded how different your child is. At least if I am going to have an abnormal child, it would be nice for him to be a perfectly abnormal child. What I mean by this is that he obviously has had some complications with his BMT. First the pneumonia scare, then the periocardial effusion and then the periocardial effusion again in additional throughout this he has had Cytopenia. Cytopenia basically is the bone marrow not producing the right mix of blood cells. Another way to say it is a deficiency of one of the blood cell types, either the white, the red or the platelets. His oscillate so when one goes up, another goes down and when that type comes up, another goes down. So we keep getting infusions to try to level them all out and hope that they all learn to play nice with each other inside Coleson’s body.
The bad news is that we have to face the bitter cold in Minnesota in 2 weeks for his 6 month check up. I would try to postpone this until the weather is nicer but it is important to get his last intrathecal injection (spinal injection of the enzyme) on time. I am not looking forward to traveling into sub-zero temperatures and going back and forth to the hospital during cold/flu and RSV season. Makes me especially nervous as steroids further suppress his immune system which is already suppressed by the BMT and other medications. I had hoped he would be off the steroids by the time we left but due to the cytopenia he won’t be. We will get to see some of our friends who are still at the RMH even though we most likely will not be able to stay there this time. The U of Minn Hospital and the RMH is getting to be a pretty popular place and as large as it is, they waiting list is typically double digit long. I am hoping that perhaps one day they will be able to expand by another 15 or so rooms so again, if you’re looking to donate anywhere, please consider RMH Upper Midwest. We will have to make the trip on an annual basis and trust me, the costs add up. Even though Paul and I have good jobs, it is expensive to make these trips. It’s not like these are vacations for us but they are just as expensive or more so. To not have to pay hotel costs is such a blessing in addition to all the other benefits the RMH has to offer. And for all the other MPS families that have to travel there annually as well who might not have the jobs we have.
Also anyone who has been collecting soda/pop/beer tabs, please bring them by my house in the next week and I will take them with us. You would be amazed at how much money they make from these! I have the facts somewhere in my office, maybe someday I will find them and send it out.
I hope all of you had a good new years. Again ours was quite but my Uncle and Aunt did make it out of Michigan for a visit so we spent it with them and watching my Alma matter Michigan State beat Stanford in the Rose Bowl! My brother in law and oldest niece went to the Rose Bowl and flew into Phoenix to make the drive so we were also able to spend a day with them. We would have loved to have gone with them but it was not in our cards this year. I’m hoping it doesn’t take them another ~30 years to make it back there again!
I’ll try to get more frequent updates out. I have so much more to say but find very little time to do so.