Miracles Truly Never Cease!

Last weekend was really challenging. We are planning and preparing to moving. During all of this, the van appeared broken and was making this awful noise. I thought it was the starter or alternator or a short in the engine because all of the lights come on fine. We could not get the car to start. We let the car sit until Monday morning thinking we would have to have it towed and cancel all of our appointments for the week. I was feeling particularly desperate. We had heard nothing on Joseph's SSI application even after this being our 5th month of waiting and several inquiries. All we were ever told was that it was still in medical determination. Well, Monday morning we decided to try and jumpstart the car again. After much prayer and a plea to the father for some divine help, we hooked up the jumper cables to our other car. Scott was hoping that the heavy rain got the engine wet causing the problems. We were both praising the Lord when the car really did start after drying out over the weekend. That was miracle #1. That was a true answer to prayer because Michael had been invited to a special event and presentation by Blizzard Entertainment (who makes video games) who raised over a million dollars for his Wish foundation, which was the very next day. It was spectacular that he got to go and see how the process of making video games works and enjoy the day. The fact that Michael got to go at all (because the Lord gave us a way to get him there) is miracle #2. He was even blessed with a wonderful drawing of himself by one of the animators who made Michael a character drawn as a wizard. Among other things, he received a hat and t-shirt. Michael needed this pick me up so badly after having such a tremendous month being in the hospital and close to 30 seizures. He was really struggling with fatigue, muscle weakness, feeling like a show when he has a seizure, the doctors questioning his believability (some accused him of faking them), his ability to be independent in various tasks, his memory and balance (which are affected by his seizures), the frustration in not being able to control his own body and the fear that goes along with all of that. As far as the accusations of Michael faking seizures, we have captured them on video and know 100 percent that that is not the case. After entering tons of data into a wonderful program called www.seizuretracker.com , we knew the Topamax was giving Michael very very serious side effects. The neurology group at CHOC would not listen. I started weaning Michael off the Topamax anyway. Now that his dosing is half of what it was, we can see that the side effects are half of what they were and some of them on their way to disappearing. We also know that Topamax on rare occasions can cause seizures, and had strong evidence showing this in Michael. The trending data we were able to obtain showed a very clear increase in seizures and side effects with increases in the Topamax. Some doctors just think they know everything. Michael has not had a single seizure this week on the lower dose of Topamax, which is another small miracle. That is miracle #3. Sometimes I think nurses should make the higher income for all the babysitting they sometimes have to do with some doctors who are clearly incompetent. All they had to do was listen, and they would have helped their patient. Just stupid. Having the car fixed also allowed us to visit my parents and Aunt Diana on Wednesday to celebrate Shawna's birthday turning 4 years old. That was miracle#4. Shawna has been counting the days down to her birthday since well before Christmas and looking forward to being 4 as a big girl and sitting in a big girl booster seat in the car finally. Yeah!!!

Thursday was another day of miracles. I prayed to St. Jude and St. Rita that morning in pleas of desperation asking them to intercede on our behalf for the house, for the SSI, for Michael's wheelchair, and for God's divine intervention. Michael had physical therapy that day and was thrilled when he got to test out a wheelchair. Michael had wheelchair training in the type of electric chair that will suit him well. That was miracle #5 because we have been trying to get Michael a chair for a while. It is just not okay for a 13 year old to have to sit in a stroller because we can't find an affordable wheelchair and because he is to tired and weak to continue walking. Chronic anemia, Lupus, Rheumatoid Arthritis (among the many other diagnosis that Michael has) takes their toll after a while. At least the process to get Michael a wheelchair is underway. An electric wheelchair is miracle #6, and it sounds like we may get ramps to help load it into the car and a manual wheelchair as well for back up, which is miracle #7. Right after we got to the car (when physical therapy was done), I received a phone call from social security who told us to expect a check for Joseph for presumptive expenses. They had not received a final determination, but we so sure he would be approved that they were sending us money anyway that we would not have to pay back. That is miracle #8.

Eight miracles in one week. Thank you St. Rita, the saint of the impossible. Thank you St. Jude, the saint of hopeless causes. Thank St. Rita and St. Jude for interceding on our behalf. I honor you this week and am grateful.

PTL
Jennifer Richardson RN
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