September 26, 2014: Yesterday we saw Dr. Skalsky at Rady Children’s Hospital. Dr. Skalsky gave us his opinion and the news that we didn’t want to hear: although the testing for the virus number has been inconclusive, because the virus had already left his system, we feel your son does have the Polio-Like Enterovirus D68.” This rare polio-like virus caused inflammation on Will’s spinal cord, which led to the paralysis of his right arm. As far as the testing by the state we still only have a positive on Enterovirus and the number cannot be determined. We were not able to have the EMG because it is very painful and the doctor felt it was too much for Will at this time. We will be having it in the near future and Will will have to be put under to be able to withstand it. Dr. Skalsky said that the virus damaged the outer portion of the spinal cord which is known as the Anterior Horn Cells, C-5, C6 and C7. Those cells control the shoulder, elbow and wrist. The doctor also feels that C-8 to T-1 was affected but we are not clear on how much. We were told that it is very unlikely that Will will regain movement of the damaged cells. The positive side to this is that since Will is still so young if, by some miracle, the nerves repaired themselves they have a smaller area to travel/repair. We now have to do an ultrasound to see if Wills lungs were affected. As you can imagine this is not the news we were hoping for and it is going to be a long road for Will and our family. With the funds you have donated so far, we will be traveling to San Francisco to see Dr. Strober (UC San Francisco), a highly recommended specialist, that has already treated other children with this virus. Dr. Strober will play a vital role in Wills treatment moving forward. For now, Will will have extensive PT, OT and rehab at Rady. We will not be able to start other treatments or explore other options for at least 6-9 months as they want to see Will’s progress during that time. After that, we will be exploring all possible options. One of the treatment options mentioned would be nerve graph surgery. There are also other treatments that may help restore some movement. Will has been amazing throughout this process. He does not mind the doctors “as long as they dont hurt me. He tells mom “we can keep going to the doctors as long as they dont hurt me anymore.” (Heartbreaking!) We are in the process of starting his schooling which will consist of home tutoring, a minimum of 60 days, while he copes with only having the use of his left hand. He is learning to be a lefty now since he was right handed. He has to learn to dress himself, shower, use the restroom, and many, many other things. Our main goal is to seek out the top specialists who have treated cases such as Will’s to provide the best care possible. On our list of upcoming doctors to see are Dr. Becker at John Hopkins, Dr. Greenberg at University of Texas, and Dr. Van Heran at Standford. All have been highly recommended and have been studying and treating other children with this virus. You may see in the news today that there have been nine children in Colorado afflicted with this same virus. We were told yesterday that because these cases were all in the last two months Will’s case will be clustered with theirs (even though Will is one of at least 25 kids in California in the last two years afflicted with this). We are hoping to learn more and share Wills story because so many other families have been silent. We encourage you to share Wills story so we can try to find others who have also been paralyzed with this virus. Most importantly, if you know of a doctor who has treated or is in the middle of this polio-like virus, we would love the connection. Many of you know that Will was a very active young boy and LOVES baseball. He is part of the San Carlos Little League (SCLL) and also did competitive swim with Heartland Swim in the summer. Although he will not be able to play ball his coach, Mr. Hollander, has been amazing and told us he needed an “assistant coach.” So, Will will learn how to take score and help the coach with the team. We are so very grateful that they are allowing him to be a part of the team during this time. We are also very, very grateful for all the donations, prayers, and kind words we have received thus far.
Posted on: Sun, 05 Oct 2014 22:37:09 +0000
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