Jeremy had such an amazing summer but I have to say this has been a crazy fall season. We have enjoyed unseasonably warm temperatures (which I’m not going to complain). We hit the floor running one awesome fall morning, a leisurely trip to our Neurologist for Botox injections ended with a visit to Dr. Cyrus. We knew he had an UTI but that didn’t explain the pulling of his ear or rubbing his eye almost raw and I was frustrated because he was hurting but couldn’t figure it out. Well come to find out he had a really bad ear infection, so with antibiotics he was better and on the mend. We went to see our dentist for a 6 month check-up on Oct 1, found Jeremy an abscessed tooth, decision was made to remove it and surgery scheduled on October 13. He did great through surgery and recovered so I thought wow that should take care of everything going on with his head. He started back with putting his hand in his mouth and I couldn’t imagine that he had a bad tooth, or ear infection but that turned into increased crankiness, agitation and a visit to Pediatrician on Dec 11, nothing notable so a CT scan & shunt series was ordered, a 3:30pm phone call to go to the ER to possibly be admitted and his shunt tubing has dis-lodged. Jeremy had surgery on Saturday, and recovered unbelievably quickly and we were discharged on that Sunday. Jeremy has really been a different boy, it’s sad that sometimes I forget how bad he feels until I see how good he is feeling, this is absolutely hands down the very worst part of having a non-verbal child. The results of the Whole Exome Sequencing test didn’t produce any answers. I was disappointed as I just knew that something would surface. They will re-run the data in a year and see if anything new is present with science or Jeremy. We may someday receive an answer.
I started in spring on an advocate work group for the Heartland Genetic Collaborative. Our Heartland group covers 8 states, Iowa, Oklahoma, Arkansas, Missouri, Nebraska, Kansas, and South Dakota & North Dakota. It was fun to attend the conference in Kansas City, and meet face to face the group in which we have a monthly conference call. It was very informative and I learned from so many. I then got to attend the National Parent to Parent conference in Phoenix, AZ at the end of October with my Oklahoma Family Network co-workers, a fun time as well as obtaining new information, and meeting new families. Then in November we moved into a new facility at OG&E, it’s been in the works for several years and was completed, so I have had a busy time as well. I started on Monday evenings with my Pastor and his wife, Karen, going through some biblical counseling lessons and that has been an awesome study time to learn and dig even deeper into the word of GOD and even learn more and more about him. These are biblical principles I can apply to my life, as well as families I serve or people I run into on a daily basis. I can say I’ve got to slow down, and quit being so busy the month of November & December were crazy busy and when I’m so busy I don’t listen for God’s voice.
Mollie, the cat is still around and with us, such a crazy cat, but fun, keeps us entertained and tolerates Jeremy so well.
I close this with God is good all the time, absolutely sovereign & merciful. Proverbs 3:5-9, tells me to, “trust in the Lord with all your heart, and don’t lean on my own understanding. In all ways acknowledge him, and he will make my path straight. Do not be wise in my own eyes. Fear the Lord and turn from evil. It will be healing to your body and refreshment to your bones. Honor the Lord from your wealth and from the first of all your produce”. I don’t understand the why most the times and I can say one thing I have learned through this year, a lesson of hard knocks is to no longer ask why, but just trust God, his will & way is always better than mine and I will never be able to reason it out enough, my understanding is so limited. My hope is found in faith alone, in Christ alone, in grace alone.