Micah Mauldin Hospital Update

Dear friends,

Wanted to send out an update on my situation. Many of you received the first prayer request on Thursday about my worsening condition. Some of you didn't, so I'll try to bring you up to speed.

Over the last month, I've been really struggling with intense pain and worsening muscle weakness, especially in the upper legs / hips and upper arms / chest muscles. On Wednesday my doctor saw me and quickly came up with an idea of what might be happening, a condition known as polymyositis, a degenerative muscle waisting disease, which in some cases can be fatal. She started me on an intense regimen of steroids to try to beat it back, but my condition continued to plummet overnight. By the second morning, I was no longer able to stand unassisted and without great pain and difficulty. I must have help from at least two people. I cannot lift my hands over my head, carry anything, lift anything, not even a gallon of milk. Not to mention my baby. Walking is extraordinarily difficult, being only able to shuffle along and for very short distances. I have no strength in these muscles and the pain is unbearable. Breathing is labored and difficult at times.

Friday my doctor sent me into the hospital. I am in Baylor, downtown Dallas. Over the last 24 hours the condition has continued to worsen. I am completely unable to get out of bed without help, cannot care for myself in anyway. Fortunately the fingers still work, so I am able to type this, though it hurts greatly. My arms are giving out quickly. They are running untold numbers of tests. There is much uncertainty right now, at least from our eyes, not the Lord's of course. Some of the things this can be can be fatal, some are life changing and permanent. We just don't know yet. If the condition keeps worsening, I'll no longer be able to walk very soon. I'll be in a wheel chair. Carrie is staying with me, our boys are with a friend. Pray for Carrie, she is trying to stay strong, we all are, but it is very scary and very hard to take. To be 36 years old and this close to complete helplessness is hard to bear. We trust fully in the Lord's care and provision, but of course it doesn't mean the road ahead is not long and a dark journey. Your prayers, love, and friendship continue to be greatly appreciated. May the Lord bless you all and to Him be the glory.

Thank you,

Micah

If you have not seen our family blog, go to www.micahmauldin.blogspot.com for more updates and detailed information about what is happening. We thank you all for your many prayers, calls, and emails. They really serve to lift our spirits. Thanks again.

First Day of Treatment

"Hey Dad, you have to get better, because who will I annoy the heck out of when I get to be a teenager?" or "Hey Dad I'm getting really rolly polly and fat, so you have to get those arms fixed so you can tote me around without getting a hernia!" or "Aw heck, I'm just cute so look at the picture, will ya?!"

Hello again everyone,

Today was the first day of treatment for my possible new condition. Though we don't know for sure just yet, the doctor feels very certain that I have Polymyositis, so certain in fact, that she didn't want to wait to start the treatment.

Today, I took my first big round of steroids. If you've never been on steroids, especially large doses, you don't know what you are missing! :-) They are terrible bitter pills that make you ill the instant they hit the tongue. The taste stays with you about an hour or two. When they hit the stomach, they are like acid. They tear your stomach up so bad. It makes your stomach hurt, you feel very sick. Then the real symptoms hit. It is tough to describe how they really make you feel. Let's just say it is a strong feeling of being uneasy and sick. Basically, they make you feel absolutely awful. I hate them, but I have to take them. Tomorrow is an equally strong dose, so it ought to be a hoot. :-)

Tonight, my best friend Tony Burns came up to see us. We went out to eat. I was really sick, but I needed to get out of the house so I wanted to go. I was really suffering towards the end of the dinner and when it came time to get up and leave, I could not get up. No matter how I tried, the legs just wouldn't listen. It was so painful. If Carrie wouldn't have been there, I would still be sitting there. As you can imagine, it is much the same way with day to day activities like going to the restroom or getting a bath.

Typing this letter kills me, but I don't mind because it is both therapeutic to write it and a much easier way to keep people well informed like so many of you who have written me back. I intend to send out one more "all call" email tomorrow or this weekend, giving those who don't have it this web address. Then I will only answer the emails that need / warrant a personal reply. Typing is so hard right now, I may have to get Carrie to do some of it for me. I don't mind, all of the prayers, words of encouragement, and responses really serve to lift my spirits. If it is not too selfish to ask, keep them coming. There will be hard days ahead.

One last thought, I have been so richly blessed. I have a great family with a loving wife, two beautiful sons, great parents, and on and on. I have friends all over the country, and four churches whom we love and who loved us back. Suffice it to say, while I or no one else knows the future, God does. As for me, my job is to fight and keep on serving God while I do. I intend to do just that.

For those who are new to this blog, as always here are some of my little joys and reasons to keep on fighting:

My wonderful family. My loving wife of 17 years, Carrie, and my two incredible sons, Zachary, who is 13 and Samuel, who is now over 4 months old. (This was our anniversary night out in July, as we were dropping off the kids at my brother's house)

SOME of my brothers and sisters and my mother after my Grandmother's funeral in 2005. Left to right is my little sister Tiffany, yours truly, the "Heavy Revy", my wonderful mother, my baby brother J.R., my baby sister D.D., and my oldest brother Keith.

Three rather good looking generations of Mauldins. :-) My Dad , Zachary who makes me so proud and myself at our "annual" Rangers game with the family. This is something I look forward to every year. I get to see a game with my Dad who has always been my hero, my family, my uncles, and this year, a cousin and his kids. It was awesome. Of course, the Rangers trashed the Astros which made it even better! :-)

And last, but not least, my little Samuel. Not sure what he was looking at here, but the picture is kind of neat. He must have been thinking "How did my Dad get so darn handsome?" (more likely, how did my Dad get so darn fat?!" :-)

Love you all. Thank you from the bottom of my heart for your love and prayers. To God be the Glory.

In His Service,

Micah

Prayer Request for Micah Mauldin and Family

Hello Everyone,

I know many of you have been praying for me lately, and I can't begin to say how much that means to me. These last few weeks have been the most terrible (physically) of my life. I have seen my quality of life disintegrate before my eyes. What has been a difficult and terrible condition to live with has become an unbearable, worsening nightmare overnight. Symptoms I've had for so long have exploded in severity. The pain, weakness, and loss of mobility have been incredibly bad. Simple daily tasks like going to the restroom, taking a bath, getting in and out of bed, rising from a seated position, even trying to turn over in bed at night have become almost impossible. Pain like I've never known has taken over my life. I've never been weaker. Just picking up anything, even 5 lbs. is painful and nearly impossible. Holding little Samuel is so painful. I've fallen more times than I can count. I have had to rely on Carrie and Zachary just to help me get around the house. My life has become, for lack of a better term, at least physically, a living hell.

I called my doctor yesterday, August 26th and they got me in right away. I spent the better part of the afternoon at the office, seeing my doctor, getting blood work, and therapeutic IVs. Most of you have known that I have known I've had fibromyalgia for several years now. I recently had chronic fatigue syndrome added to the list as well. I still have all of the underlying conditions as well, severe sleep apnea, diverticulosis, etc. Of all that I've learned about my conditions, in trying to understand and combat it, there has always been a missing link in all of it. None of the things that I've been told I've had could explain the severe flair ups I have causing profound weakness and pain in my upper arms /chest and upper legs / hips. My flareups have always been really bad and really unexplained. Fibromyalgia really doesn't account for it. This last flare up has been off of the charts and so severe I've cried, a lot.

Back to the doctor. Today, I was diagnosed (tentatively, but almost to a certainty) with Polymyositis (while still having all of the other little joys of my life) :-). This condition is a progressive muscle waisting disease caused by the bodies' own immune system. There is no cure and no known cause. Sufferers just develop it, they don't know why. About 20 % of sufferers will die within 5 years, but many are able to be treated and avoid the complications that lead to death. The major treatment used is huge doses of steroids that will attack the bodies immune system and stop it from destroying your muscles. The steroids have lots of complications and side effects of course, but it is the first mode of attack. There are other courses of attack for those for whom the steroids don't work.

My doctor feels very optimistic that we have a very good opportunity to slow/stop the disease' progression. In fact, since she has been treating this condition (2 years), all of her patients with polymyositis are holding there own and or improving. None have failed to respond to the therapies she uses. (medicinal and nutritional / natural).

As difficult as this condition is to face and as uncertain as the future appears, just knowing what I'm fighting brings a certain comfort. In fact, I am certain that I won't leave this earth a minute before my appointed time. God is truly on His throne, and if this disease is a part of His purpose for my life, I freely accept that. Not to say I wouldn't take a pass if I could, but it will be what it will be. At least now, I can educate myself, fight the good fight, learn to live with / around the disease and do the best I can to regain a level of comfort and a certain quality of life. Simple goals, baby steps, and lots of patience. All things that I and my family will covet your prayers on. The road will be long, the destination uncertain, the results unclear for some time to come. I am confident of this, God loves me, has a perfect plan, and no bad thing will befall me that He does not allow. I can live with that. I can die with that too, if that is the eventual destination. I'll fight the good fight, live the best I can, and enjoy the time I have, hopefully and I believe confidently that there will be many years ahead. I intend to see my boys become men and someday play with my grandchildren. Hopefully, I'll see them standing up, not just sitting down! :-)

As for prayer, I ask the following:

1. Relief from the disease' terrible symptoms and disabilities.

2. Patience and grace for the whole family, long hard days ahead.

3. Wisdom for the doctor as she works to help me.

4. Protection from the disease' more difficult and permanent ravages and the harsh side effects of the treatments.

5. Wisdom and an open heart to use this experience for God's glory.

6. Strength for my family as they struggle with watching me suffer and worry about what the future holds.

7. Financial grace to bear the incredible costs associated with fighting this disease.

I know this is a lot to ask you to pray for, but I am selfish in this, I covet your prayers and I'm not hesitant to ask you for them!

I'm not afraid. That isn't bragging, it is faith. The scripture says "There is no fear in love; but perfect love casteth out fear:"1 John 4:18a Christ is perfect, His love is perfect. This much I know, as Paul said about his sufferings for the gospel, "For the which cause I also suffer these things: nevertheless I am not ashamed: for I know whom I have believed, and am persuaded that he is able to keep that which I have committed unto him against that day." 2 Timothy 1:12. Now certainly my sufferings are nothing compared to his, nothing compared to what others endure, but they are what they are and I trust my Lord completely. I am fully persuaded that He truly is able, of that I am certain! To God be the glory.

Thank you in advance for your prayers,

Micah

Samuel's First Movie

Hey Everyone,

Had a pretty funny story to tell, so here it is. The other night, we went out to a fairly late dinner at a local restaurant. As we finished dinner at about 8:45 pm, Zachary mentioned he would like to go to a movie. He wanted to see the Iron Man movie. It was still playing at the $2 theater (our favorite). I looked it up on my cell phone, and the movie started at 9:15.

Carrie and I talked about it, it isn't often that we would say yes to taking a 4 month old to the movies. We both agreed that Samuel had just eaten and it was his normal bed time. We were both sure he would go right to sleep. We decided to take a gamble so off to the theater we went. For $6 we didn't have much to lose.

When we first arrived, everything was going just as planned. The baby was getting kind of sleepy, until he pooped his pants. Carrie took him out to change him and slipped back in the theater in record time. She is better than a Nascar pit crew!

When she came back in Samuel had developed a different plan. Did he start crying and fussing? Nope, not a bit. He was awake and had no plans to go to sleep! That little 4 month old sat on his mother's knee and later mine for nearly 2 and 1/2 hours and never took his eyes off of that movie! He never cried or whimpered. He was mesmerized. We couldn't believe his stamina and his attention span. He just sat there transfixed! We all thought it was hilarious. I, of course, added commentary to what Samuel was thinking throughout. He thought that was the coolest big TV he had ever seen!

We left the theater at about 11:30 pm and he was still awake. He didn't finally give up the fight till about midnight. We all had fun and I think Samuel did too! :-)

One More Thing

Today Samuel turned over for the first time! We had him in the floor on a blanket. He was laying on his tummy with some of his toys. Without warning, he flipped his little fat butt right over! He has never even come close before. Mauldin babies don't usually do that sort of thing very early, they are generally a little too rotund. :-) Fluffiness has a "weigh" of weighing you down! Another milestone reached so fast we almost missed it.

Love you all.

Four Month Check Up

Boy am I beat after a busy day at the doctor!

Hello Everyone,

Samuel had his four month check up today. The best way to sum up the doctor's staff's response was "Holy Mackerel!" In the two months since his last check up he has made the following leaps and bounds:

2 Month Length: 23 3/4 inches
4 Month Length: 26 3/4 inches

2 Month Weight: 11 lbs. 8 oz
4 Month Weight: 18 lbs. 5 oz

Needless to say his pediatrician was quite impressed. When Samuel was a newborn, everyone would say "OH, he's so little!" Lets just say we haven't heard that in a LONG time!

The funny thing was at his two month checkup, he was way behind compared to his peers. Today, he was in the 93rd percentile in length and the 95th percentile in his weight. That means he is taller than 93 out of 100 4 month olds, and heavier than 95 out of 100 4 month olds.

THAT'S MY BOY!!!!!!!!!!!!! Honestly, I don't know where he would get that from? :-)

Here are some recent pictures:

Yes I am quite comfortable thank you!

Yep, I'm even gorgeous when I sleep!

Getting a little play time with my FAVORITE cousin Jaden!

Just trying to make it through the summer heat!

Hello all,

The heat has let up a little here in Denton, but it is still very hot. Health is continuing to struggle, hopefully I'll get a break soon.

Carrie took the boys this past weekend to Pine Bluff, Arkansas. Her uncle passed away. While the funeral was hard, it was a good time for her, getting to see her family for the first time in a while.

The boys continue to grow, both the big one and the less big one. We get the funniest looks when we go out, people think it is funny to see a tall lanky teenager and an infant. Well, I guess it is pretty darn funny! :-)

Here are some cute pictures of the little big one and the big one and even one of the really big one.

Our Handsome Little Men

Daddy, I know I'm cute when I sleep, but would you please stop taking my picture when I try to sleep!

Hey Mom, I love you!

The Mauldin Men of Denton

Super Baby!

Hello All,

Have a few cute pictures of Zachary and Samuel. Zachary picks up Samuel and flies him around like Superman, thus "Super Baby" as the title. Samuel loves it and just grins ear to ear. We think it is pretty darn cute ourselves!

Hey Mom, watch this!

My best Superman pose.

Look out bad guys, Super Baby is coming at you!

First Spoon Feeding

Hey all,

Sorry for the lack of posts recently. As I said the other day, I really suffer when it gets hot. This is the 12th straight day of triple digits in Denton. It has been merciless, the suffering has been intense. Unfortunately the break in the heat tomorrow will also bring a rain front, which only means more pain. Oh well, it is what it is!

As or munchkin boy, we had his first feeding by spoon the other day. It was hilarious! I've put together a little collection. I hope you enjoy them!

Hey, that is a strange bottle, where is the nipple?


This ain't half bad!


What? What? Do I have food on my chin?


Oh Yeah! I'm loving this eating thing!


What do you mean you don't want a kiss from me right now?