Michael's Story

When we found out Michael had Evan's Syndrome, I was surprised to learn it was listed on the National Rare Diseases list. It sure is a scary thing, and then to learn to deal with it and LUPUS and everything else he's got and come to terms with the fact that our child has these lifelong conditions too. It is a lot, and I am finding it really tough too.

A Story of Comfort
The story that has given me the most comfort this week is from Matthew 14 and Mark 6 when out in the boat went the disciples. While out in the boat, the winds got worse, and a big storm came. The disciples were afraid the boat would sink. Over the wind and the waves, Jesus called. Come Peter. Peter stepped out of the boat and walked on the water to Jesus. And even when Peter's faith failed him, Jesus reached out His hand and lifted him up. Peter could not do it alone, but only with Jesus. If Peter was ok, then I believe we will make it too.

I also really like the story about how Jesus was asleep in the boat and calmed the waves. We have our own storm here Lord, and feel like we are sinking. Please come and calm our storm.

Michael takes 2 or 3 naps a day for fatigue. Before he got sick, he didn't really take any. He does get up and move around and do things during each day though now, so I am relieved that he is at least doing that. Each day, we are trying to figure out what his limits are and learning as we go.

A Scary Thing:
Michael apparently has to limit his time in the sun and limit his exposure to sunlight. He has been outside playing, and several times in a row, he had really bad reactions and feeling awful even in less than 30 minutes to 2 hours (certainly by the next day). It seems directly related to how long he is outside in the sun. The scariest was when we were running errands, and Michael felt so awful that he was yelling and crying. He was nauseous, said his whole body hurt and felt hot. He really scared us. We have a hooded windbreaker that Michael uses now to cover his head and arms, and pants for his legs, which seems to help. Another thing to adjust to and ask the rheumatologist about.

Praises Though:
Praise God, Michael does really great in the early evening (dusk) and at night, and we can see the difference in his energy. Michael is able to be up and around, and asked to get out and doing more normal things again. That is such a good sign, and is great for his spirits. Sooooo, Michael is going out with his dad tonight for some very much needed Father and Son time without his brothers and sisters (or mom) around. I am really glad to see Michael doing normal things.

Michael prefers gentle hugs now because it hurts to get squeezed, so we do more gentle hugs and kisses and caressing his face which is just about the only part of his skin which does not hurt. Anyone who really knows Michael, knows he used to love to be tickled lots and lots. Michael's skin is very sensitive now and hurts him most days. He also struggles with itchy skin, and numbness in his hands and feet. He also has some new bruises, which are always concerning because of the concern over his platelets. He still has many bruises on his legs that have been there a long long time, and run along his veins. He still has joint pain, neck, shoulders, elbows, arms, knees, ankles, and even his jaw hurts. He gets stomach aches everyday, and still gets this little pink heat rash on his face from time to time; fortunately though the rash has not been serious.

Things to praise the Lord over:
It has been 2 or 3 days since Michael has had a headache, and he has not had any nosebleeds since Sunday which is a really good sign. Yeah !!

New Problems:
Some new things that we will be asking the rheumatologist about, Michael has been having pain in his sides every day this week as well as his chest. We are watching him, and he does not have any shortness of breath though. So, it seems more skin, muscles, and bone related than anything else (we hope). He has also been having back pain every day, and Michael gets stiffness in his legs too.

More praises:
Many of Michael's bruises all over his arms, stomach, back and head have cleared up or faded a lot. Praise the Lord for platelets that work ! Michael is getting back into school work each day, and we have encouraged him to journal his feelings and all that is going on with him. His fingers hurt though, so it is for shorter periods through the day.

More praises:
Last Friday, we rushed Michael over to the doctor's office because he was having difficulty swallowing even just water and episodes of choking on his food. We learned Michael was pretty seriously dehydrated and had thrush too. So, he started on another medication (number 3) and has been pushing the fluids. It has been slow, but Michael's throat is beginning to feel better and is not so swollen. He was on just liquids for a while, and then soft easy to swallow things. Now yesterday and today, Michael has been eating soft regular food. Thank you Maura and Ellen for your donations. Michael loves the Ramen, and has been eating it again. He lost 13 pounds, down to 50 pounds and has been slowly gaining that back now that he is eating again. Michael really enjoyed the Ramen a lot now that his throat does not hurt so much. The doctor's say they may keep him on a low dose of the medication because his immune system is not able to fight off even his own natural body flora (the bacteria we all carry that our body normally just keeps under control).

Michael is pretty quiet about his pain and discomfort and puts on his best face for everyone. He is such a trooper. It was so nice to start seeing Michael's smile again through all of this, and he seems to have kept his sense of humor. There are moments when Michael is in a great deal of pain and feels like he is dying, so we help as best we can and remind him that he is not dying and will feel better soon.

Michael likes playing video games and pretending the bad guys are the lupies and the other bad things he's got, and beat them all. We are trying to find a computer based school curriculum for Michael to use that is reliable and well rated to help with his hands. Someone suggested Switched on Schoolhouse, so we are checking into that.

Thank you everyone for your much needed support.

Prayer Requests:
That the rheumatologist will see Michael tomorrow instead of next week
For All of Michael's symptoms and healing
For all the medical bills piling up
For Our Ability To Cope - all of us
For God's comfort to all parents of special needs children and the daily walk


Blessings In Christ To Each Of You,

Jennifer Richardson
www.richardsonstudios.blogspot.com