This has been a little while coming, but things have been so crazy here that I have not mentally been together enough to sit and write out what has been generally going on. I wanted to make sure I put out some information since I have a minute now. Thank you every one for your prayers and offers of help.All in all, our family is doing well, but we are in the midst of the biggest trial we have yet to face as a family. About 2 months ago, our fourth child, first and only son thus far, who just turned 2 the end of May, began to show noticeable signs that something was not quite right in his body. I noticed his hands would shake when he would hold out his arms to be picked up. When I first noticed it I thought it strange, but then just kind of blew it off and did not think much of it. Then I noticed he would shake when in the shopping cart, like he was cold or something. I would ask if he was cold but he was not. Then he began to shake while sitting in his high chair, and then when standing.
I noticed he began to have issues walking and even when standing would continue to shake about slightly, but enough that he would reach out to hold onto something to steady himself. The fay after I noticed this instability while standing, he almost fell right down the stairs when he ran over to the gate while goofing off but missed the rail. Thank God I was standing right there and caught him. That evening when hubby got home from work I told him that I was concerned about Zack, and when Zack woke up from his nap he saw that he had deteriorated even further since church the day before, so we headed to the ER (this is about 7-10 days after I first noticed the symptoms). We were admitted in the hospital through Friday, during which time they did a series of tests, ruling out brain tumors, and one test for Lyme's disease. During the stay in the hospital, his symptoms progressed even further, going from having a very staggered walk to not being able to walk at all, and then started a new symptom with his eyes being unable to focus very well and shifting all over the place. By the end of the week (about 2 weeks from the time when his symptoms began) he was diagnosed as having post-infectious cerebellitis, which is a self-limiting illness that typically begins to get better from 1-4 weeks. This diagnosis was actually very benign, so we left the hospital hopeful that any day we would begin to see an improvement in our son, but that is not what has happened.
We've been discharged for about 7 weeks now, and Zack is no better, so we are seeking a second opinion. We will be re-entering the medical community to seek out an MRI for his head and thoracic cavity, because we believe that he is suffering from something called Opsoclonus Myoclonus Syndrome (find more information here). His information is right in line with this (less than 2 years old, presents quickly, follows flu-like symptoms...he had a cough for over a month, but never any fever or really much else) so we are seeking out testing to rule out or confirm a neuroblastoma (which is highly common in such a situation), or any other tumors in his body. If this is ruled out, we will move onto Lyme's disease and the strains of bacteria and their mutations that can cause it. We desire prayers for being guided to the right doctors to help us properly diagnose what is going on, protection from any negative butting of heads between us and the conventional medicine community, and respect from the medical staff for our parental rights to make medical decisions for treatment of our son, whether it be to seek out alternative care or pursue conventional treatments. Then there is also the financial burden, as we have had to pay out of pocket for some of this, but especially his homeopathic treatment. Any other care we pursue that it outside of insurance provision will also be out of pocket.We know this is going to be a journey for our family and we are prepared for a season of testing. In all of this we know that we are being refined. The scripture I have been given over and over is James 1:2-4, "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything." I have been finding relation to Job from the Bible throughout this time, and am determined to continue to give praise and glory to our good Father in Heaven, who loves unabashedly and mourns with us when we suffer trials in this life. But, we rest secure in the promise of Jeremiah 29:11-13, "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." Well, we are seeking our Lord =0) There are beautiful things that have already begun to emerge out of this miry pit. Hubby's grandma has come to stay with us for some time to help out. The girls are really stepping into their roles as helpers and servants of the Lord in this family. I have absolutely relaxed on expectations in the household and on myself, and we have been repeatedly blessed by the help offered to us by others. Asking for help is just one area where I previously was not comfortable, but am truly seeing the blessing of reaching out in such times of distress and need.
In addition, enjoying the simple pleasures and joys of life comes easily for me now. Things that previously would have likely been overlooked amongst the million other things on my plate are now being enjoyed and cherished (a laugh here, a smile or tickle there, a cuddle and hug, etc.) There is nothing as refreshing as a renewed perspective on the significant blessings that God has allowed into our lives. I am beyond thankful for everything we have. Even seeing where my son is right now, I can rejoice in God's love because I am still so blessed. I still have my son, I still get to hear him laugh, I still get to see his smile. Life could be so much worse. We have a potentially long road ahead of us, but God is Sovereign and continues to make Himself manifest. Your prayers are more than desired and any practical way you feel you could help, we would absolutely appreciate it. I will be posting on this, and the loads of other things God has been teaching me since before this latest season, so I hope you will stay connected on here. The more readers I can get on here, the better my chances of turning it into something of a financial blessing for our family too. Thanks again and as always, please feel free to share comments, thoughts, and encouragements below! God bless!
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