Thank you, thank you very much...

Most of you who know me, know that I (Kelly) am an Elvis fan. I'm not the crazy, addicted kind. I really only have a few of his CDs, don't care for any of his movies (who does?), but I do have some Elvis memorbilia that I've collected and that others have given me over the years. I still love his music and love to see any movies about his life (not the ones he acted in). So, my dear friend Marianne made this adorable shirt for Micah!! She surprised me with it when some of my dear friends from seminary days and I met up in Boston back in September. Isn't it precious!! I've had so many people comment about it and wonder if they could get one too. Then to their disappointment, I have to tell them my friend MADE it. Then, they look at me in utter disbelief as if they can't believe anyone actually hand sews clothing anymore! So, I asked her to please make my some PJ bottoms from the same material and she did!

It has been too long since I posted, I know. I started a part-time job a few weeks ago at The Container Store and it has taken up a lot of my time. I only work two evenings a week and Saturdays, which is enough. I had lots of crazy training times before I settled into a regular schedule and even one over night shift to do. That was only a one time thing, setting up for the "Gift Wrap Wonderland." If you live near one of the stores, you should see it. It's every kind of paper, bow, bag, tag, ribbon, trinket, sticker, etc you can imagine to possibly wrap a gift and so much more. I like the job, but don't plan to do it forever. In fact, I was hired as seasonal, which is now through February and then they evaluate if they still need me, if I still want to work, etc. It's a fun place to work and I'm learning lots of stuff and uses for containers I never would have imagined!

Micah is doing well. Since the last post he is tolerating the horseriding therapy so much better. He actually likes it now. He giggles, makes his happy noises, and even reaches down to pet Poppy's hair.

Oh, and the title "thank you, thank you very much" is what Elvis often closed his shows with, just in case you didn't know.

Micah tolerates Poppy

This is Micah’s newest form of therapy, therapeutic riding. We have been going out to this place called Halleck Creek ranch. It’s a non-profit organization that provides horseback riding for mentally and/or physically disabled people. They allow people from ages 2 to 62 and they offer trail rides on Saturdays which is the day most people go, and then they have individual sessions for others on other days of the week. The trail rides are an hour and a half long, which would be way too long for Micah. So, we go on Wednesday afternoons for half an hour. It’s out in West Marin in a town called Nicasio. It’s a beautiful drive out there and the ranch is literally out in the boonies. Micah rides Poppy, a 6 year old Shetland pony. She was too big to be a show horse, so her owners donated her to Halleck Creek ranch. Micah is getting used to the riding. He probably tolerates it at best. He is annoyed by the helmet and usually doesn’t want to get on the pony. Once Poppy starts moving, things are better. Micah generally loves being outside and loves movement, so eventually I think he will enjoy it more.

As for other news, Micah had an EEG on Tuesday. It revealed no seizure activity, which is great news! The last one he had in June had shown 2 seizures. We haven’t noticed any physical manifestations of seizures either. Micah is not yet saying any words, but is making a lot of different sounds, consonants and vowel sounds and putting some of those together. He now has some type of appointment every day with Speech, Physical Therapy, Occupational Therapy, his weekly program for developmentally delayed kids, and one appt. with a man who comes from Easter Seals every week to do interactive play. Micah deals with some of those appointments better than others. I think he realizes when he gets to Speech and OT that they are going to make him work and then he gets upset. He cries and reaches toward me. His Occ. Therapist said to me about 2 months ago, “I’m going to politely kick you out…go get a coffee or something.” To which I replied, “Hey, no problem. I’d love to do that.” So, now I go run errands or sit and read while Micah has OT. It is much more successful when I am not in there.

I’ll attempt to post the link about Halleck Creek in case any of you want to read more about it.

Childlike Praise

This photo was taken by a friend at church. It's actually old, from back in December, but I think it's a beautiful picture of Micah. I saw it for the first time a couple of months ago during our worship service. It was a Sunday in which there was a focus on the children of our church. There were several photos of kids posted on the large screen as we sang. Micah's picture was behind the words to the song "Let My Words Be Few" by Matt Redman. The first verse goes like this:

You are God in heaven
And here am I on earth
So I'll let my words be few
Jesus, I am so in love with you

Chorus:
And I'll stand in awe of you
Yes, I'll stand in awe of you
And I'll let my words be few
Jesus, I am so in love with you

It was a sweet surprise to see this photo as we were worshipping. Micah looks like he is in a posture of praise to me. We pray that Micah will understand and know who Jesus is in this lifetime; we will do our best to teach him how wonderful He is. In the meantime, he already praises him with his sweet little life, the way he explores the world, his laughter, and his precious smile.

Back from the blog break

Well, I guess I’ve taken a little vacation, or rather, long vacation from blogging. It wasn’t intentional, I suppose we had a lot going on. The last time I posted on the 14th we left that day for a visit to our families. We went to Arkansas to see my family for a week and then down to Mississippi for a Womack family reunion. It was good to see every one although a bit strange in Arkansas because two of my aunts whom I loved dearly had passed away in the two months before. They had always been a part of my visits to Arkansas and for them to not be there was so strange. We enjoyed seeing Mom and Dad and my brother Gary and having some of Mom’s great cooking as always.

The weekend in MS was fun. We were glad that Wayne's Mom and Dad and sister Janel were there. We stayed with Aunt Nora and Uncle Taylor and had lots of good ol’ southern cooking and plenty of vegetables from Aunt Nora’s garden. I had only met a few of Wayne’s aunts and uncles at our wedding 6 years ago, and you can’t get to know people at a wedding. So, it was good to get acquainted with some of the Womack family. I absolutely love Aunt Nora! She has a similar personality of my Mom Johnson (my grandmother who passed away 17 years ago); so funny, says whatever is on her mind, and loves people. I felt so welcomed by the Womack side of the family. Many of them I had never met and some of them acted as if they had known me all my life! I think it was especially good for many of those folks to meet Micah since they have been praying for him for so long and had only seen pictures. Of course, he was still fairly new at walking, but he had a great time walking around outside in the grass. We were in TX for a very short few days. I had the shortest visit ever with my sister, later in the week spent the night at Janel’s house and surprised Paula (she didn’t know Micah and I would be there), and lastly, I spent one day with my dear friend Betty.

Changing the subject, but to keep folks updated on our quest to move to TX, OK, AR or somewhere closer to family and those of y’all who are like family…we’re still no closer! We found out that UT Tyler hired someone else. So, we continue searching.

Micah is doing well; still no seizures as far as we can tell. He has started a new seizure med and we’ll be slowly weaning him off of Vigabatrin in about a month. He’s walking really well and even trying to jog/run with a few quick steps here and there. He’s mastered climbing on the couch and is especially good at this whenever Wayne or I have some food. He used to stand in front of us and lean in. Now he’s usually sitting next to us on the couch with his face about half an inch away from our plate, as if we don’t know he wants whatever it is that we have!

I took the last picture of Micah because he just decided to crawl in the laundry basket one day!
For some reason, I guess he thinks it's fun to hang out in there! He also enjoys taking things out and throwing them on the floor one by one, dirty or clean!

I’ll write again soon…gotta tell you about his new therapy on Wednesdays, but I need a good picture first!

Juarez stories

One of the first kids I saw in Juarez was Abi. It was our first full day. She was walking down the street in her jeans, turquoise blue t-shirt and flip flops. She stared at us as our two vans drove toward the building that will be the community center. As soon as we pulled in she was there to greet us, smiling and quick to grab on to anyone’s hand. In the first hour, she attached herself to me, wanting to sit in my lap, and hug and kiss me. Though some of us could communicate little with words, our team wanted to reach out to the kids as much as possible. We soon learned that Abi had a brother named Kevin. He was a fun kid with a great personality. Those who could speak Spanish said he was quite funny and smart. He had a great time playing games with the assistance of others. We learned that Kevin is blind, and I was astonished because I had seen him wandering the streets with absolutely no one with him. Later that evening, Steve, the facilitator of our trip had told us that Kevin and Abi have parents but that they aren’t very involved in their lives. Their father is an alcoholic who isn’t around much and their mother doesn’t pay much attention to them. So, they are left to fend for themselves and pretty much roam the neighborhood. Steve also told us that the community around there had sort of adopted them and allows them to eat with them and hang out in their homes. I was glad to hear this, but hurt for them just the same. I then understood why Abi was so eager for the affection of total strangers; anyone who was willing to love her became a new friend.

Carmen and Juan are a couple who work for Amigos Ministries and have a huge heart for the people in their community. Several years ago Carmen began to notice the poor kids in her community who were thin and hungry. She felt God speaking to her “You aren’t so poor that you can’t help others who are poor.” She also new that many of the kids only had dinner and that children always perform better in school and socially if they have breakfast. So with this she began to talk to her husband about feeding the kids in their community. He was a corn truck driver at the time and made $10 a day. For two months, Carmen bugged him about it and finally he agreed to give her his salary for one day out of the week. So, Carmen started feeding kids breakfast in their home. Eventually, she began cooking and taking food to the school. People outside the community began to find out and wanted their kids to come to this school so they could have a free breakfast. The school officials began to get involved, started cleaning up and improving the school and helping Carmen financially with the meals. Others have donated funds to help out as well. In just the last couple of years, a group who came from Colorado built Carmen a kitchen. They brought kitchen and cooking equipment, and booths from a restaurant that had gone out of business. Now Carmen, Juan, and Juan’s sister Betty all help with the breakfast. Carmen now feeds 300-400 kids every day of the school year a free breakfast when they would otherwise only have their dinner meal. I was so touched at Carmen’s story. What an example of how God can take someone’s obedience and do great and mighty things.

Recent photos of Micah

I just wanted to show off his curly hair



Father's Day with Daddy...Micah picked out a book Daddy has been wanting

Results of tests last week and Kelly to Juarez!

Hola (Hello in Spanish) to everybody!


Why am I saying Hello in Spanish? Because I am going to Mexico tomorrow! I’ll get to that in a little bit. First I want to give a brief update on Micah.


We had good news and disappointing news last week.
He had an eye test last Thursday to determine if there was any loss of peripheral vision (a potential side effect of his medication) and also to check for abnormalities on or around his eyes and nerves. Everything looked great- again a praise to the Lord because we have been concerned, as he has been digging in his eyes a lot lately and has been on the med for a year and a half. So, we breathed a big sigh of relief!


The disappointing news is that he is not seizure free. Immediately following the eye test, he had an EEG. During that test, he had two seizures. We were with him and did not see them. Dr. Raja said it looked like the seizure activity was coming from the back left side of the brain, which means there is possibly one or more tubers that have developed back there. Micah will have a MRI in early August and we’ll know more then. So, these past two months that we had thought he wasn’t having seizures, but that isn’t the case it seems. However, he has improved leaps and bounds in the past 6 months-year!


I am going on a mission trip with my church (FBC of San Francisco) tomorrow. Some of you know about it and if you don’t, I apologize for not telling you before now. But now you know and can be praying for us this week! We are going to Juarez, Mexico. Actually, we are flying into El Paso, staying there and driving into Juarez every day. We come back on Saturday. We will be doing a Vacation Bible School Wednesday through Friday. It’s a short trip because we are taking 7 kids with us. This is the first family mission trip our church has taken, meaning we have some entire families going, some taking one of their children, one young couple without kids, a couple of single moms, a couple of single gals, and myself. I am not taking Micah since he is too young. Two of my dear friends are taking care of him tomorrow and part of Wednesday. Wayne will have the rest of the week off with him.


Well, the day is slipping away and I still have much to do to get ready.
A few quick requests to pray for concerning the trip:
-safety traveling there and as we go in and out of Mexico every day
-God to prepare the hearts of those we will encounter
-that our team will serve Amigos Ministries (the main organization we will work
With)
-for God to use this trip in the lives of all our team, and our children in particular

I include that last part because I know my first trip to Mexico in 1995 was what sparked my interest in missions, and ok, I wasn’t a child (24), but I was really effected.

Thanks for your prayers!
Much love,
Kelly

Lookout world, Micah's walking!

Yes, Micah is taking steps these days! He is getting bolder and taking more steps all the time. As recent as two weeks ago, he would only lunge toward the recliner from the couch (which was about 3 steps). Now, he’s taking as many as 10 to 12 before he collapses on the floor. He can’t yet stand up from the floor, he still has to pull up to something, but once he’s up he is eager to try and walk. He is still quite unstable and without a lot of balance, but we are so thrilled to see him walking!! I see a day coming in which I will not be carrying around a 33 pound child and this makes me glad! He has had NO seizures in about 7 weeks! Can somebody say Hallelujah?

We took Micah to have an EEG today; you may remember that the last one was in April and was completely normal. The goal was to have another one to see if his brain waves are still normal and he isn’t having any seizure activity. Although we aren’t seeing any seizures, it’s possible that he could still be having mild ones that we don’t see. Unfortunately, this EEG wasn’t successful because Micah was screaming and crying and eventually pulled off two of the electrodes and then the test had to be over. Even the EEG tech’s singing couldn’t calm Micah. He sings and hums from start to finish, usually unintelligible words like “Didle dee diddle dum, di-dee dee do diddle dum scee,” over and over he sings this. Wayne thinks he is a little too quirky to make a person comfortable. I actually think he’s quite entertaining, but then if you know me, you know that I am easily amused! And then he tells Micah “Oh, you’re beeeeuuutifull!”

We happened to run into Dr. Raja after it was over, told him it wasn’t successful, etc. We were glad to see him because we showed him how Micah could walk and he was so thrilled! He commented on how big he is getting as well. At a Dr. appointment a few days ago, the nurse tried to measure him using a 40 inch chart that he could lie flat on and he was off the chart! So, we know he’s over 40 inches tall. What a surprise, right?

Micah will be having an eye test a week from tomorrow. Please pray that we actually get to keep the appointment; we’ve had to cancel the appt. twice in the last two months because Micah was sick. They will be giving him general anesthesia, so he has to be well. Dr. Raja said he is going to try and coordinate an EEG at that time as well. The purpose of the eye test is to see if he has lost any vision. You may or may not remember that one of the potential side effects of his medication is loss of peripheral vision. He has been on this since February ‘06 and we haven’t been too concerned. Recently, he has been digging in his eyes a lot. We’ve already been to an ophthalmologist last week (yes, we visit doctors frequently) who said that his eyes and nerves look great. That was a relief, but I’ll be glad for him to have this eye test which should be a little more revealing.

Well, for you Texas folks, or even if you aren’t, you should know Wayne has applied for a job at UT Tyler for the registrar position! He sent in his application two weeks ago, so now we are hoping they will call him for an interview. It would be a great location, as it’s only 40 miles from my sister and her family!
I’m trying not to get my hopes up too much, since we had a similar situation last year really close to Kim and Thomas and it didn’t work out. God knows though, and we are just praying for his direction and will.

Why, oh why, do I blog?

I’m participating in a fun little survey among some internet/blogger friends today, so if you came looking for an update on Micah…look tomorrow. A friend took an incredible picture of him and I'll be posting that once I get it! I do intend to give an update!

How did you start blogging?

My husband and I decided to start a blog to keep friends and family updated on our son Micah. He was diagnosed with a serious neurological disorder when he was five months old. He’s now 2 years old.

Did you intend to have a blog with a following? If so, how did you go about it?

Well, I expected that some family and friends would read it, beyond that, I never expected that total strangers would be interested in reading it. At first, we sent an email to folks letting them know we had a blog and every now and then we remind people.

What do you hope to achieve or accomplish with your blog? Have you been successful? If not, do you have a plan to achieve those goals?

Refer to the answer in question one. I believe we have been successful in keeping people updated about Micah. I could be a little more consistent in posting though. My plan to do better is to get off my lazy duff and post once in a while. OK, I’m really not lazy; I just go through blog slumps, I suppose.

Has the focus of your blog changed since you started blogging? How?

Not a whole lot, really. Since I have been reading other people’s blogs and have been inspired AND entertained, sometimes I think about posting my thoughts on something and then it usually doesn’t happen.

I don’t think it has changed that much because I will always write about Micah since it is my main job to take care of him. And SO many people have been and are praying him. Yet, I think I need to free myself to write about other things too, because there really aren’t any blog police coming to get me. At least, I don’t think so.

What do you know now that you wish you’d known when you started?

I can’t think of anything; I’ve just been learning as I go. I have just had fun reading some of my friends’ blogs and new internet friends’ blogs. There is such a wealth of information (like great recipes), inspiring stories, and entertaining posts that make me howl with laughter.

Do you make money with your blog?

No, but I’m open to suggestions. : )

Does your immediate and extended family know about your blog? If so, do they read it? If not, why?

My immediate family (on both sides) does know about it. I know that at least a few of them read it. Extended family, I really have no idea.

What two pieces of advice would you give to a new blogger?

Enjoy it. Be encouraged by reading some of these other folks’ blogs.

Laughing with Grandpa

Good days for Micah

Since the last post in April, things have gone really well with Micah. He has had very minimal seizures in the last five weeks since we discontinued the diet. The few seizures that he has had have been almost unnoticeable, only slight movements of his mouth. He also had a NORMAL EEG a few weeks ago. I capitalized normal because he has never had a normal EEG! Dr. Raja was so excited about it that he almost called us late at night, but then thought he should wait until the next morning and review the EEG results again. It's really a blessing to have a neurologist who really cares so much about Micah. We will do another EEG in a few weeks to compare. Dr. Raja is not sure that the positive results are from the diet, because it's usually an all or nothing deal, however, we have talked to some who've said that sometimes when kids are on it even for a brief amount of time it makes a difference. We're thankful to God for his improvement!

Micah has been very active and even seems to understand a little more what we say to him. It's hard to tell, since he can't talk to us yet, but he responds to "No" a little more quickly and he definitely understands when we ask if he's hungry. He's still pulling up to everything and is getting a little bolder about taking a few steps. He is eager to walk if we are holding his hands. So, thank you so much for praying, and I know you will continue to.

Wayne's parents were here this last week for a visit. We all enjoyed them being here and know it was great for them to be with Micah and vice versa. We went to Napa Valley and enjoyed the beauty there one day. We also went to China Camp State Park for a picnic, which was the place Wayne took me for our first date. It's a beautiful park on the bay with hiking trails in one area and small beaches in other areas. We were sad to see them go; we keep praying that we will be able to live closer to our families someday soon.

On another note, if you happen to look at this post before tomorrow or anytime tomorrow, would you please pray for a sister in Christ named Heather. She has been at the Mayo clinic for a little while and tomorrow will have brain surgery. A few weeks ago she was diagnosed with a malignant brain tumor. Without surgery or radiation, she has been told she has 5-7 years and that with the surgery and radiation, she would have at least 10-15 more. She is 32 years old and has three children, the youngest of whom has a terminal illness (5 years old) and is developmentally delayed. Lots of people are praying for her, but a few more can't hurt!

Done with the diet

After several days of tossing pros and cons back and forth, feeling frustration, crying, praying, etc. we decided to stop the diet on Friday. I have meant to let everyone know sooner, but the weekend has been busy. In the wee hours of the morning Friday, Micah was awake for nearly three hours crying and screaming for food, we believe. So, we were all awake and after a couple of hours decided “Let’s give the boy some food!” He was much more content and has been since we have been back to our old, normal ways of feeding him.

As you saw in the last posting, it was just too difficult and the drinking was not getting better. We had visions of a continuing pattern of blood draws to see if he was close to dehydration followed by hospital visits for IV fluids...not our idea of a fun way to spend time. We also felt Micah was just miserable because he wasn’t getting enough to eat. After talking with one of Dr. Raja’s nurses on Friday to let them know we were ending the diet she said she felt like we had gone above and beyond, tried as long as we could to stick with it, and that we deserve a reward! She also has suspicions that maybe the diet was not calculated correctly for our little tall boy. She said he should have been hungry, but not hysterical.

Micah has been much happier and energetic since Friday, so it’s good to see him smiling, laughing, and moving around again. He's also drinking just fine now! One thing that’s happening that we feel like is a repercussion of the diet is that he is still getting upset after meal times, even when we KNOW he’s had enough. I think he was getting used to little food and getting upset and so we hope it is a pattern that will soon fade. He has had a huge appetite! I think he’s trying to say “you people starved me for two weeks and now I’m going to eat you out of house and home.” Not really, it’s just amusing how he can’t seem to get enough food!

Another weird thing is that he is starting to throw major temper tantrums at nap and bed time or if he wakes up in the night and we try and lay him back down. He can literally scream for half an hour before he will settle down. When he used to wake up he was just wide awake and ready to play, but not fussy. Anyway, kids are a mystery sometimes!

Thanks so much for your encouragement, prayers, phone calls, emails, etc. We love it. We’ll continue to keep you updated!

Hard days

Since my last posting, the days have been long and not easy! I know people are praying because people have told me, but I also sense it and am so thankful for it. God is using your prayers to sustain me in these days! Micah is still not drinking well and as a result we have had to take him to the hospital twice to get re-hydrated. We went last Friday and again late yesterday afternoon. Micah has blood taken every few days, they check it out in the lab and then let us know what his levels are (if he’s too dehydrated, how his blood sugar is, etc.) and then have us bring him in for an IV. It’s such a mystery to most of the drs. and nurses as to why he isn’t drinking. It has been six days since the Topomax was stopped (refer to the last post) and he still isn’t drinking much better. Wayne and I think it’s because he wants food. The portions are very small because of the high fat content, you would be shocked if you saw them (even for a two year old). So, when a meal is coming to an end, he knows it and starts getting upset. He starts peering into the container and realizes there isn’t much left. It’s very hard to take; he cries before ( because he’s hungry) and after every meal (because he is still hungry) and sometimes I cry too.

We’ve been told it takes the stomach a week or two to adjust, but one nurse also told us it is NOT typical the way he is behaving and getting so upset. He cries a lot and doesn’t seem to be as happy. I’ve been thinking about how since I was a small child, my mom, Mom Johnson (mom's mom), grandma Whiteside, granny Johnson, and now my mother-in law in recent years have always wanted to make sure I’ve had enough food. There are many other women in my life who’ve done the same. “Did you get enough? Are you sure? There’s more...” It’s one way of showing love and making sure your children are taken care of. So, now I understand on a small scale even though Micah is only two. It is very painful to know he is hungry. I don’t know how much more I can take. I feel like I have to decide, do I want to starve my child, or do I want him to have seizures?

So, I would ask for wisdom for Wayne and myself how much longer we should continue this diet. We have only noticed one seizure in a week, and that was yesterday. Honestly, if he doesn’t start drinking better, we won’t be able to continue because we can’t be going to the hospital twice a week for an IV, it’s hard on him and hard on us.

I know things could be much harder, our child isn’t terminally ill, or anything close to that. I know God is giving us grace and strength in these days. I read Psalm 27:14 last night “Wait for the LORD; be courageous and let your heart be strong. Wait for the LORD.” Thanks for praying for us as we wait on Him.

How it went...

Thank you all so very much for praying for Micah this week. The hospitalization went fairly well. We came home late last night. The fasting on Sunday and Monday was one of our biggest concerns and it wasn’t too bad. Well, that’s easy for me to say, probably wasn’t the greatest experience for Micah! What I mean is that he tolerated it much better than I thought he would. The most traumatic thing that happened was having his blood taken on Monday. The lab techs were having a hard time finding a vein, so it was a 20 minute ordeal! Ugh! So far, he has eaten every meal from the diet that he is supposed to eat. The only problem we have had, and are still having, is that he does not want to drink very much. With this diet, there is a certain amount of food, and certain amount of liquids that he must consume. He became pretty dehydrated on Tuesday so the Dr. decided to put him on an IV to regain fluids. Wed. morning he was better and then late yesterday he decided not to drink much again. This afternoon has been better, but the Dr. wanted to have blood taken again to see if he is dehydrated again. We will know results tomorrow. One reason he isn’t drinking could be because of the Topomax (one of his seizure meds); this med sometimes doesn’t work well with the diet. So his neurologist decided to stop it as of today. If this is the reason, we should see a difference in him drinking within a few days.

Wayne and I met with the dietician several times and feel pretty comfortable with the diet. She gave us menus for two weeks. The food is easy to prepare and Micah seems to like it. It’s a lot of butter, bacon, mayonnaise, cheese, eggs, heavy whipping cream, fruit and vegetables etc. What’s not to like? We will follow up with the dietician in two weeks and learn to do all the calculating and actually making our own menus.

We ask that you please pray that Micah will drink. It gets really stressful trying to force him to drink when he doesn’t understand that he has to drink this certain amount. It also gets to be concerning because we don’t want him to get dehydrated and end up in the ER. Also, if he doesn’t drink, this diet will not work.

Thank you all for your comments and correspondence through email. It’s very encouraging and needed!

Praying for tomorrow

I had a few questions concerning the diet for the coming week and so I spoke with a nurse practioner on Friday. The first question she asked was “Are you excited about Monday?” and my response was “Well, excited wouldn’t exactly be the word I would use because we’re sort of jumping into the unknown.” We have been praying about this for a long time and are ready to pursue it, I’m just not looking forward to tomorrow. The fasting part is what I’m not looking forward to. We had to cut down on most carbohydrates and all sugar today and so when Wayne was having some yogurt, Micah wanted some. It’s one of his favorite things and as is his habit, he starting reaching for it and crying when Wayne wouldn't give him any. I could hardly stand it.

To prepare for this diet, Micah will have to fast from tomorrow evening until the following evening. After 6pm tomorrow, he will only be able to have liquids. The purpose of this is to prepare the body’s metabolism to burn fat instead of glucose. This will be a very rigid, mathematically calculated diet.
Some ways you can pray for us:
-That the fasting time won’t be very traumatic for Micah or Wayne and myself
-That Micah will eat the food and that we won’t have to force him, it would not be fun trying to force a 2 year old to eat!
-the diet will reduce or eliminate his seizures
-understanding for us as dieticians, nurses, and doctors teach us how to administer the diet
-that we would not be anxious about this, but would hope expectantly that this is something the Lord wants to use to improve Micah’s health

Birthday Boy!

I’ve had some problems posting pictures lately, but I finally figured out the problem! The first picture was taken on Micah’s birthday, St. Patrick’s Day. The photo of Paula, Micah, and Janel was taken in Sausalito. The other photos were taken some days before Micah’s birthday. It wasn’t as exciting as we had hoped to be for his 2nd birthday. We were all sick, and it started with Micah on Thursday! I guess it was a 24 hour stomach flu or something. Needless to say, we didn’t do much except lay around like ol’ gas station dogs. Even Paula and Janel came for their nephew’s big day and the both got sick as well. By Sunday we were all on the mend, except for Paula who was sick even as she left on Monday. Though it was a bit disappointing, we were glad we all got to see each other.

In a few days, I’ll post some specific ways you can be praying for us concerning next week.

the keto-what diet? and deeper still

Some of you are aware that we are starting the ketogenic diet with Micah in less than two weeks. He will be hospitalized from the 26th-28th at least if all goes well. Some are surprised that it requires a hospital stay, so I will briefly explain. The diet requires a 24 to 36 hour fast so that the body can prepare to burn fat rather than glucose. So, Micah will be monitored closely and Wayne and I will be there with him (of course). The diet is high fat, low carb, low protein, no sugar and is a rigid, mathematically calculated therapy in which we will be weighing food to the gram. We will be learning how to administer the diet there with the help of dieticians and Drs.

We tried increasing the dosage of medicine (Vigabatrin) by 4 times, per Dr.’s instructions. That was in December and we have not seen much change at all in Micah’s seizure activity. So while we are not sure what to expect or even if this diet will help, we believe it is worth a try, especially if it will reduce or greatly lessen his seizures. Oftentimes, kids who see success with the diet start taking off and progressing rapidly in development. So, we covet your prayers for this. We will be updating you more frequently and will remind everyone before the diet starts.

Micah turns two this Saturday! Can you believe it?! He shares St. Patrick’s Day birthday with his first cousin Harrison who will be 6! Although we wish we could celebrate with all of our family, we are having a treat in that Paula and Janel (Wayne’s sisters) are coming to visit and celebrate Micah’s birthday with us.

Speaking of birthdays, I enjoyed my birthday present from Wayne this weekend. No, my birthday wasn’t this weekend, it was February 1st, you slackers who forgot. Just kidding. So, my gift was going to the Deeper Still Conference which was 3 incredible women Bible teachers Beth Moore, Kay Arthur, and Priscilla Shirer(she’s Dr. Tony Evans daughter for those who don’t know, I didn’t). And she sure is a powerful preacher, er, speaker I mean...whatever that woman preached! Actually all three did! The conference was in San Francisco, Friday night and all day Sat. There were nine thousand women there and maybe 3 men, ok there were a few more men than that, but not many. The worship team of Travis Cottrell and others was incredible. Although I live 15 minutes from the city, I went with two friends and one of them wanted to treat us to a hotel in downtown SF which was fun. So Wayne had Micah by himself Fri and all day Sat and he did fabulous, not that I expected otherwise, he’s a great Daddy!

Ok, so let me tell you what I learned, I took several pages of notes and will now quote them here. Not really. Every session was great, Priscilla was Fri night, Beth Sat morn, and Kay Sat afternoon and they all spoke from an hour and a half to 2 hours. The point that got to me most was when Beth was sharing and she said that there are times in our lives in which we need to “move past our devastation with God”. She had been sharing a story about a friend of hers who is 12, with down’s syndrome and how last year she was diagnosed with Leukemia. Well as soon as she starting sharing about her, my eyes began to fill with tears because any story about a special needs child stirs that in me lately. Beth talked about how we just want to ask God “Why?!, Why did you do that, allow that,etc?” She went on to remind us that we may never know why but need to trust that there’s a testimony to come and as crazy as it might sound, to be glad that God entrusted something hard to us.

It was one of those moments I knew God was speaking to me. I have been devastated (especially in the beginning) and frustrated with God in the past year and a half, wondering why he allowed Micah to have Tuberous Sclerosis, knowing He could have prevented it. I feel like I have allowed joy to take a “backseat” in my life, often wishing things were different. So, now I am praying for God to help me accept it (didn’t I already accept it? Ok maybe not), to have joy and to be the godly Mom Micah needs.

So, if you read all that, you get the prize. Don’t know what it is, but I’ll tell ya later!

He's getting to be a big boy!

The newest thing with Micah is that he has “graduated” to both the toddler room at church and the toddler group for his class in the city (for developmentally delayed kids). He has transitioned well to both groups. We were a little apprehensive about moving him to the toddler class at church, just knowing he isn’t walking yet and wondering how the other kids would respond to him/play with him. He seems to enjoy being around the other kids and is busy exploring a new environment.

There isn’t much new in terms of seizure activity. He is still having them daily, usually at least twice a day and the level of intensity is about the same. He still isn’t sleeping well at night, though he has been on a med to help with that. We have a couple of nights here and there in which he will sleep through the night. So, we are back to pursuing the Ketogenic diet. We don’t have an appointment set up just yet, but it’s in the works. We will have a lot to do to prepare for it. We are hoping to get started with it in late March/early April.

Micah is constantly pulling up to anything that he can and walking along the couch while holding on to it. We are praying that he will be able to walk within this year...the kiddo is getting heavy!

I think some people have thought that Micah is only delayed in his physical development, just by comments or questions we have gotten. It’s hard to say, but he seems to be at the level of a one year old. He has started reaching out for us at times, he seems to understand when I say “Want to sing ‘Row, Row Your Boat’?” because he will start rocking ( we do a rocking motion while sitting on the floor). Also, recently when I put him on a plastic rocking horse at his class, he immediately grabbed on and started rocking back and forth. It’s exciting to see little improvements!

Pray for Wayne and me to have patience with and compassion for Micah. He is a sweet boy who laughs and smiles a lot and those times are easy. At times he is hard to handle physically and when I don’t know why he is having a tantrum. I’ve also been told this is a good sign of development as most kids his age learn to assert their will.

One of my closest friends told me recently that she is praying that I enter into greater amounts of the grace of the Lord. I think I need that, don’t we all? I’m not sure what it will look like; I know that grace in it’s simplest definition is unmerited favor. I pray that in receiving that grace, that I can know how to extend it to others.

Finally, an update!

Well, I’m long overdue in posting this; sorry to those who’ve been wondering what’s going on with us. We’ve had a busy month since I last posted with traveling to Oklahoma and Texas. We had a great time with both families for the holidays and enjoyed seeing everyone. I would have liked to see some of you in TX who were within a couple hours drive, but we had most of our days filled. One of our gifts from Wayne’s parents were tickets to the Cotton Bowl in Dallas on New Year’s Day. Unfortunately, Nebraska lost to Auburn, but it was a fun experience for us (my (Kelly) first Nebraska game, a cultural experience).

The first thing I need to let everyone know is that we have decided to postpone the Ketogenic diet which we had been planning for Micah. I realized most people didn’t know this when I had a friend email last week and suggest that I have prayer coverage for Micah for those days he would be hospitalized. Just before leaving for the holidays we had a conversation with Dr. Raja (Micah’s neurologist). He had been to a conference with other neurologists and spoke specifically with them about Micah. Their opinion was that Micah had not been on enough of the Vigabatrin (one of his meds) to make a difference in reducing seizures. So after some discussion and prayer, Wayne and I decided to increase the med per Dr. Raja’s suggestion. We gradually increased it over 4 weeks (we are at week 4 now) and will wait for a little while longer to see if there is much improvement. Honestly, we haven’t noticed much improvement in terms of seizure activity. He is still having them daily, sometimes 2 or 3 times, and they are just as intense at times as they had been. However, all of his therapists say he seems more alert and socially responsive to them. So, it could be that he had been having seizures we couldn’t see and possibly is not having them now.
We will watch over the next several weeks and if there still has not been a lot of improvement, we will probably look at starting the diet sometime in March or April. We will keep you updated.

We did move to a our new apartment (the next building over) thanks to some very gracious friends who gave several hours of their time to help us. They even helped us clean our old apt! We have great friends! It was the easiest move we’ve ever done thanks to them! The situation is much better; it’s great to be able to live normally without worrying about making too much noise. Micah seems to enjoy crawling all over the place. When we were in Oklahoma, he started pulled himself up to stand! He is doing this often now. He can only stand supporting himself on the couch or a chair and only for a few seconds, but it’s great that he’s trying!
We should be a little more regular about posting now that we are settled.

Curious boy

Beautiful, sweet boy.

Micah's new haircut

Micah is sporting his new haircut given to him by his Nana (Kelly's mom).