Surviving a Party

Yesterday was Jason's birthday party. All day as we were getting ready for the friends to start showing up I was worried that Matthew's fever would start creeping up and he would miss out on the fun. Thankfully Matthew took a nice long nap, and although he woke up with an arm that was really aching, he felt very good otherwise and really enjoyed the party. Jason had a great time, which is even more important, since it was his birthday after all. This week we made a pinata and Jason decided that he wanted it to look like Spiderman's arch-nemesis Venom (the dark colored Spiderman looking enemy.) We found out a thing or two about makeing a pinata for the next time we try, if we try, but a few kids got to hit at it before it finally fell apart.

Matthew woke up with a little bit of a fever this morning, but so far it hasn't gotten up too high. The last time he had a high fever was in the middle of the night Thursday to Friday, when it got up to 105. The good news is that besides that his fever didn't rise above 103 last week. I'm attaching the most recent chart update. Thanks for all the continued prayers!

Checking in...

It's been hard to post anything over the past couple of days. We've been really busy and it just seems hard to find anything to say when everything just seems to be the same. Matthew has still been having fevers, but it seems that recently they have not been as high. Last night he ran one all night at 101-102. It does seem weird saying that a 102 fever is not so high, but it really isn't for Matthew and he seems to just keep on going. Tonight he went to bed feeling achy all over the place but his fevers were gone. We'll see how tonight goes. We're hoping that he will feel well enough on Friday morning to join his Kindergarten class for picture day. His Kindergarten teacher lives nearby and she was kind enough to stop by the other day on her way home to spend some time with Matthew. She tested him on a few things and made sure that he is caught up on some key things.

Also, Matthew read his first book today, mostly by himself. It was a book called "I Like Bugs." We've spent a lot of time reading to him over the past couple of weeks. Lots of Spiderman, Star Wars and Transformers- surprise, surprise! He also likes a book called "Goodnight Gorilla." With that, I'll say, "Goodnight..."

metamorphosis part 2

The butterflies hatched. We won't have to hear the question "When will the butterflies hatch?" anytime again soon. The butterflies were beautiful and the process of the change is amazing.

This past week has been good. Matthew has only had the fever three times since last Saturday. His muscles are much less achy and his energy seems to be returning. We still are prone to wonder when the next fever will come, but we take it one day at a time, thankful for all the prayers of our family and friends and grateful for every day that the fever stays away.

One of the new things over the past few days is the itchiness that Matthew has been experiencing. We're not sure exactly what is causing it, but some web sites that we have seen dealing with the tricanella spiralus have said that itchy skin is often one of the symptoms. I for one hope that the itchy skin is due to the healing process, kind of like the itch that comes when a burn or scab heals. I twisted my ankle a couple of weeks ago and noticed the other night that my ankle was itchy. I hope that the itch Matthew has is due to healing going on in his muscles.

September Temperatures

I am posting the most up to date picture of Matthews Temperatures in the month of September. Since September 1st Matthew has had only four temperature spikes. We have reason to believe that the past two months bout with mysoitis and fevers may be related to the parasite Trichonella Spiralus. This parasitic worm essentially comes through ingesting food containing the larvae- usually undercooked pork. The larvae permeate the intestinal walls and lay eggs in skeletal muscle tissue. The eggs encyst in the muscles, feeding on the blood suppply there, and then hatch, mate grow and die, beginning the process over again. From much of hat we have read on this it seems many of Matthew's symptoms closely line up with this.

There is no way to prove this diagnosis once the parasite has made it through the intestinal walls without a muscle biopsy, and even then the biopsy would have to sample muscle tissue that actally has the eggs present. There are a couple of medications that can be taken that actually starve the parasite by inhibiting its ability to uptake glucose causing the worms to die, but this is a later course of action. Currently we are having Matthew take natural anthelmintics such as clove and wormwood.

Matthew's progress over the past few days has us very encouraged, but we know we're not out of the woods yet. If he continues to improve we will probably not pursue positive diagnosis through muscle biopsy. We will continue praying for our little guy. Whether this is what is going on or not w may never be positive, but over the past few days of rest and not having the fevers, his myositis has also diminished. His muscles have not been aching the way they had been every day for the past 7 weeks before.

Thank you all for the prayers and support over the past couple of months! Keep the prayers coming. We are so encouraged, yet we also are trying not to get our hopes up too much yet.

μεταμόρφωσις

Matthew has been kept busy during the past few days with his caterpillars. A little boy that comes to The Little Gym named Raymond brought the caterpillars from his yard. They eat passion vine leaves. Our jar currently has two caterpillars and three chrysalises. After a few more days in the chrysalis stage these three should emerge as butterflies. Matthew has enjoyed keeping track of how much the caterpillars have eaten and is always asking when they will finally pop out as butterflies. At some point when all we had were five caterpillars Matthew would constantly ask, "When are they going to change to 'chrythalith?'" I can remember several times that I would be in his room in the middle of the night, he would have a 104 degree fever and ice packed around him, and the main question on his mind would have to do with these little creatures in the jar next to his bed. We've been thankful for little things like this that keep him curious and allow him to focus on something besides how he is feeling.

Since noon last Sunday Matthew has had five periods of fever. The fever periods generally last about eight hours, starting with a long, gradual rise in temperature, an hour or two at the peak and then a fairly rapid descent back to normal. Two of the fevers peaked above 105 this week. Encouagingly, though, when he hasn't had the fevers his temperatures have been very normal and the periods of him not having fever seem to be lasting longer and longer.

Thanks for Books!

When we posted a link to Matthew's wish list for some books we hoped to get a couple of them but the response was overwhelming! Thanks everyone! Some of the boxes came with packing lists that named who gave the books and some did not. We will be trying to personally thank those of you whom we know to thank, but if you don't hear from us, it might just be that we can't because we don't know. Perhaps one of the best surprises this week is getting books from people we haven't had contact with in a very long time, and in a couple of cases even from people we don't know (friends of family members and friends of friends!) What an encouragement knowing that so many people care for Matthew who have never even met him! Thanks so much!

At any rate the books are keeping Matthew occupied. He is looking at all the pictures, placing lots of stickers and really likes the stories. Jason is also enjoying the benefit of having new books around, especially the book about drawing Star Wars. He's already spent multiple hours with that book.

As for an update on Matthew... he has had some really good days this week, but with the ups have certainly come some downs. He had a period of about 36 hours with absolutely no fever, not even low grade. But then the past two nights it has spiked during the night. Last night his fever reached 105.3 degrees for a couple of hours, which is the highest it has been for a couple of weeks. It was right back down to 97.5 this morning when he woke up though and he has had a fever free day all day. Recently he has been experiencing regulay stomach aches, perhaps due to all the ibuprofen he has been taking over the past 7+ weeks, but we're not sure. Continue to keep him in your prayers.

Matthew's Temperature Map August- updated

The other night I took time to chart Matthew's temperature for the month of August. I took a blank calendar and drew lines from the top of the bottom of the calendar right through the middle of each day to mark noon and the already existing lines marking the change of days represents midnight. Then I drew horizontal lines across the days representing degree marks from 97 to 105, 97 being at the bottom and 105 being the line just below the bottom line of the row of days above it. Then I just plotted all the temperatures that we have recorded at their respective times and it shows the undulations in his body temperature over time. I think that if I were to graph my own body temperatures over the same time there might be at most 2 to 2.5 degree variance and the line would be relatively flat. When I see the line that Matthew's temperature has taken I see just how unstable his body has been. It's kind of strange to look at it that way.

Ahhh. There is peace at this moment with Jason and Matthew in bed and Dave and Trevor not yet home from Trev's football practice. I find a lot of comfort knowing that those of you reading this blog are praying for Matthew and our family. Thank you and please continue. Matthew has had good days the last few days. Good meaning close to normal temperatures all day. He does have some aches that he complains a bit about during the day though. It is the nights that are hard with him hitting some high temperatures around the middle of the night. There are a lot of things to decide for Matthew and we don't know what the right decision is. How long can his little body keep this up without lasting effects? Do we need to try other stronger medications? Will those even work? I wish I knew the right answers. Right now life feels like a rollercoaster as I get excited for him during his good days and then can hardly contain my tears during his hard nights. I think I am just so tired right now too so I will say good bye for tonight. Please continue to lift Matthew up in prayer.

Little Serendipities

For some reason it hit me last night that it is such a great thing that the fridge we have has a crushed ice feature. We've filled up the icebags what seems to be hundreds of times over the past few weeks. Crushed ice is almost essential for this. Standing out in the kitchen at 12:30 in the morning I was glad that I didn't have to figure out how to manually crush up the ice. When we first moved into this house Christina really didn't like the crushed ice feature on the fridge because she was always stepping in the little wet spots where some ice would hit the floor and melt.

Matthew's fever hit 104.1 last night and I was packing the ice bags around him, but just about a half hour later it was down to 102.4 and he was up again just talking and talking, almost as if he didn't have a fever at all. He asked why his leg hurt so bad and I told him it was his myositis. He pointed to his leg and with a big smile on his face, "That thing that's making my leg hurt is a very bad boy! A very, very bad boy!" He kind of thought it was funny. I am glad he is dealing with it better than me.

A Minor Detail

Matthew's Shipping address is 3349 N Camino Esplanade, Tucson, AZ 85750. I guess it will be hard for the UPS guys to find Matthew's house without this.