Bad News, Calling out Arvil's Angels

I haven't written in Arvil's blog in quite some time. I suppose that is because I have not felt like there has been much to say. The last several months have been relatively uneventful. Arvil has been making progress. He has been learning to use his body little by little. He has some use of his hands and can move around a little on the floor. He is excited for life and pays attention to what we say, he is learning to communicate, though it is very simple communication, a few words and gestures, but he communicates. He seems to understand most of what goes on around him. In short, I have been very optimistic about Arvil's progress. This last week, however, I was given new cause for worry.

Last Tuesday we made a visit to Primary Children's Medical Center for an MRI and a visit with the stroke specialist. The day was something of an ordeal. It began with an EEG which Arvil was way too wiggly for. He did not like having electrodes glued to his scalp. Next, we waited for a couple hours to get bloodwork results before the hospital would sedate him for his MRI. this wait wasn't too bad, because Arvil finally fell asleep.

The bad news came when the MRI was complete. The Neuro-Radiologist explained the images and my heart sank. Arvil's brain was not healthy when he had his last MRI, but we have put off having another for nearly eighteen months. Things have gotten much worse, "progressed" in the medical jargon, but I personally cannot use that word in the place of "worsened."

It would be nice to have some imaging from after the stroke last June, but we never had it done, we wanted to do it at the first of the year, but it did not happen then either, so we don't know what damage existed after that major stroke, or what changes happened in between, but we do know that the health of his brain has worsened and that he has continued to lose vasculature and blood flow to many portions of his brain. The most troubling part of all of this is that PCMC is supposed to have all these amazing specialists in Neurology, but nobody seems to know anything about what is going on in my son's head. It is new territory.

Here is the long and short of it. If your brain, a healthy brain, is a grape, Arvil's is a raisin. because it has been gradually losing blood vessels, the tissue has shrunken and atrophied. Two doctors told me that if they had just seen the imaging and been asked to tell you what the child with that brain was like, they would say that he was probably unaware of his surroundings and unable to communicate, play, or possibly even eat by mouth. This is obviously not Arvil's case, which is encouraging, but gives an idea how sever the brain damage is.

We still have no idea why the brain is closing off blood vessels, nor why both of the main hemispheres of the brain are involved, but the brain stem, cerebellum, and spinal cord look perfectly normal. There are still theories about autoimmune disorders, or some sort of viral infection, but nothing has been proven. There may be recommendations for biopsy of brain or venous tissue, or possibly some sort of brain surgery, but we don't know yet what to operate on.

This is a very frustrating thing for us as Arvil's parents. I did not receive this news well. I think part of my difficulty in receiving this news was my optimism about Arvil's health. Callie did better, she knew something was wrong. He has been having very small seizures quite frequently, and is sometimes uncomfortable. Just this Saturday, he started crying in pain, and when I asked him what hurt, he patted his head and whimpered. He then had a little, but by far the most major I have seen in over a year, seizure. He then relaxed and fell asleep in my arms. We have reason to worry. I am terrified at the thought of watching my happy little boy fade away as his brain slowly dies.

I am calling out Arvil's Angels again. Please pray for Arvil. Please pray for the doctors, that they will be guided to answers. Please pray that if there are other solutions, through alternative medicine, or nutrition, or anything else, that we will find it. I love my son . Thank you for your love and support.

Needing to Step Things Up

I don't know if anyone is still following this blog and it has been a while since I posted much on it, but I want to put this information out there for everyone.

Arvil has been progressing, as I have noted before, but his progress has slowed. Callie met this week with the developmental specialist who has been following Arvil, and she expressed her concern that Arvil was not progressing as he needed to be. We need to start a more intensive program of therapy. We will soon start going to physical therapy several times a week in Logan or Pocatello.

We are concerned about Arvil's recent lack of progress and hope that with more therapies it can pick up. Please pray with us for Arvil to be able to recover more quickly and to continue to gain the use of his muscles.

Step by Step

Arvil is making progress little by little. He continues to have regular physical and occupational therapy sessions. He is improving and is gradually regaining control over his body. We get excited over little things. He just relearned "rolling over" and is getting good at eating and drinking. he is using a crawler to help him learn to get around.



We hope he will soon learn some independence as he is still very clingy, which becomes burdensome to his mother. We appreciate all the love, prayers, and help that has come our way.

Long Road Back

Arvil is definitely progressing. It seems slow, but positive. His therapists are very encouraging. He is getting stronger. It still seems hard for him to hold himself up well, and his movements are very uncoordinated. He is saying "Hi" again, and has attempted a few other words. He has a ready smile. We continue to pray that his progress will not be set back again. Thank you for all your prayers and support. We love you.

Gratitude

We are humbled by the outpouring of love and support that we have felt recently. I struggle to find words even close to appropriate to express our thanks. We have beautiful, loving people around us who have taken such good care of us. We thanks you and we love you. We pray for you. I am so comforted by the love that so many have shown and for the reflection that it shows of the love that our Savior has for us as well.

A Little Clarification on Arvil's Status, and a Bit of a Cry for Help

As most of you know, our youngest, Arvil Jedediah has suffered a series of seizures and strokes since last August. Beginning with a couple of strokes in January, these have caused some serious developmental setbacks for him. at that point in time, he was beginning to crawl all over the house and was developing very normally. Since that time he has lost many of his motor skills including control of limbs and digits, the ability to stand or crawl or grab, and recently his speech. he never has fully recovered his fine motor skills, and recently was crawling again but his most recent stroke has hit hard and he is now being carried like a sack of flour.
Arvil is regularly visited by developmental specialists, speech therapists, physical therapists and occupational therapists. We have been seeing doctors and other practicioners both of conventional and alterative medicinal disciplines.
Arvil is a wonderful and important part of our family and we love him so much we cannot express it. we pray for him continually and thank our family and friends for their prayers as well. Arvils trials are trying to all of us as well and sometimes we could use more material help. Callie could use help witht he other kids and with the baby as he eats up so much of her time and energy sometimes it is hard to tke care of the other kids and the house. The occaisional meal would even be a boon. As I mentioned in my last post, this extra care can get costly for us and I am recovering from a recent layoff. Any financial or other material help or support would be appreciated. It is hard to humbly ask for help, but this is a time we can definitely use it.
We thank you all so much for everything you have already done for us and for your prayers in our behalf.

Arvil Update

At my last post, which was some time ago, I told you about Dr. Klassen. We have been taking his advice now for nearly two months and have been feeling a great deal of hope about Arvil's condition. However, we do have bad news to report as well, Arvil suffered another stroke while fighting a cold and has had another major developmental setback because of it. All the doctors seem to agree that the root of the stroke problem is in a genetic defect that is connected to a few inflammatory response related autoimmune disorders such as Krohn's disease and Blau syndrome. While Arvil doesn't appear to have symptoms of either of these specific disorders, he does have the genetic mutation and an inflammation of the blood vessels aroud the brain.

The major difference in Arvil's case between the naturopathic community and the allopathic community is the appoach to treatment. The mainstream establishment says that he has an auto-immune disorder and therefore his immune system must be chemically supressed. The Naturopathic approach is that it is a hyperimmune reaction to some root cause such as a microvirus, parasites, or a fungal infection. In their view, we must treat for this while supporting, but not stimulating the immune system. Callie and I prefer the Naturopathic approach for several reasons.

We believe that the auto-immune problems are a response to something, a symptom, rather than the root cause. While there may be a genetic defect, there must be better ways to control his symptoms than to expose him to heavy doses of powerful steroids such as prednisone and to suppress his immune system and open him up to other infections. All the doctors have warned us that prednisone could be dangerous to Arvil, but some seem to think that the potential benefits outweigh the risks and the side effects. Callie and I also feel that the spirit has cautioned us against using steroids.

We wish to continue seeking alternative medicine solutions to Arvil's problems. We aslo want to continue to see Drs. Klassen and Mahoney. These things cost money and most alternative health care providers do not work with insurance or medicaid. To further complicate everything, I was recently laid off from my job. I have been working some construction and other odd jobs, but our income is greatly reduced.

That being said, it is hard for me to ask for financial help, but anything you can do for Arvil's sake at this time would be most appreciated.

We thank you for your love, support and prayers.