Thursday, March 29, 2007

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!

Sunday, March 25, 2007

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

Wednesday, March 21, 2007

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.

Wednesday, March 14, 2007

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!