Today is Tuberous Sclerosis Complex Global Awareness Day so I thought it would be a good day to tune back in to writing on this blog.  I didn't intend to take that long of a break; I just fell out of any routine of posting and found it hard to get back into it.  At first I wondered if I should continue it because I do a short little blurb about what's going on in our world on facebook every now and then and sometimes post photos there.  Yet, I realize some people I know and love don't do facebook and never will.  I am not crafty and scrapbooking is just not my thing, so having records of anything my kids do or say is just not going to happen that way. I actually enjoy writing and don't mind using this as the format and I hope for this to be something meaningful to pass on to our kids.

I started this blog not long after Micah was diagnosed with TSC mainly as a way to keep people updated on his progress and ways that they could pray for him. These last 8 years have gone by very fast in some ways.  It has been a tough road for many of those years but we have seen many blessings as well.  There is disappointment with milestones not being met, frustration with not knowing how to communicate with Micah at times, and general weariness of  the realities of him being globally delayed.  There are also lots of joys at seeing signs of progress and development.  There are a lot of smiles and laughter at watching him when he is thrilled at playing in the water or laughing hysterically because he is enjoying riding a horse.  Sometimes it doesn't take much at all to make him laugh and I love that.  When Micah was diagnosed at 5 months old, Dr. Raja (our wonderful pediatric neurologist in San Francisco) asked how we were taking the news of him being diagnosed with TSC, I remember saying through tears "He is still a gift, no matter what the diagnosis."  I still believe that and always will.

Attitude check...

I don't know why I thought of this earlier this morning, well, maybe I do.  I feel like I am in need of an attitude change.  I thought about when I was playing basketball in high school and when we had out of town games.  As we were coming down the street getting close to our home gym, someone on on the bus would shout "Attitude check!"  and everyone would respond "1,2,3, Praise the LORD!" whether we had won or lost.  The funny thing is, I'm not sure how many of us on that bus were actually praising the LORD on a daily basis with our lives.  But, that's beside the point. 

Right now, the summer days are long!  Micah is home every day and there is little for us to do outside the house.  It's too hot to go many places.  Even if we go to the pool or the spray park, we have to go in the mornings because it's too hot in the afternoons.  I can't go to too many indoor places just for the sake of trying to keep up with both boys.  We do have Micah's therapy twice a week which helps break up those days. I think Micah is totally done with this staying home all day thing.  And he has 5 weeks to go!  He just thrives on routine so it's hard on him.  I have to remember that.  It's not just hard on me, it's hard on him too.  If you read my facebook post yesterday, this will be a repeat.  He was on a roll yesterday: dumped popcorn on the floor because he didn't want it, dumped smoothie out on the table purposely, he has discovered the water button on the freezer door, so he likes to push that and if I'm back in the bedroom putting away laundry or in the bathroom for even a couple of minutes, he will push that.  So there was about a half gallon of water to clean up.  He will turn on the water faucet in the bathroom or kitchen sink full blast and until I can get there he is filling a cup with water and dumping it on his head.  He also had a bath at 8:30 am because he had been outside dumping dirt all over his head and clothes.  He will knock things off of any surface if he is irritated or not getting attention.  I try to find ways to interact with him and can some, but he is just restless.

It's just tiring, and especially tiring when these boys wake up daily at 5:15 or 5:30, and Micah wakes earlier than that sometimes and does not go back to sleep.  I feel kind of weary by late afternoon, and then Wayne comes home and brightens my day with his hug and kiss and we deal with these things together. 

So back to the attitude...Beth Moore says that sometimes we need to praise first and feel it later.  Somtimes you don't feel like praising, but you do it anyway.  Or as David said in Psalm 43:5 "Why am I so depressed? Why this turmoil within me? Put your hope in God, for I will still praise him, my Savior and my God."

Last week the boys and I went to Fort Worth to visit Wayne's sister Janel and then his other sister Paula and parents were coming the next day.  We didn't leave until 3 in the afternoon after his therapy.  That was a mistake.  We didn't arrive until 9 that night and I didn't get the boys in bed until 11.  Well, I didn't know it until 4:30 am but Micah did not sleep the whole night.  He had been in Janel's room so she just stayed up with him.  So, at 9:30 we went to a playground near her apartment, well, kind of near.  When he started swinging he got really sleepy and then did not want to walk back.  At that point, he went into full meltdown, breakdown mode.  When he gets upset, sometimes he just starts grabbing for things. In this case, he ran toward a wooded area near the playground and just started pulling at weeds for all he had.  He is so strong and nearly impossible to handle when he gets to this point.  It was a real physical struggle just to get him back to her apt.  I would carry him some, he would collapse, and roll around in the grass some, I'd pick him up again, he'd collapse again, etc.  He was crying, I was crying, people were passing by not offering at all to help.  Meanwhile, Janel had taken Gabriel back and went to get her car to meet me part of the way back. 
After a bath, he collapsed and slept for 4 hours.  Whew.  All I could figure out was that he had gotten overstimulated from the trip and just could not settle himself down. 

The next day he had broken out in poison ivy and it was nearly everywhere on his body.  It was awful!  He was swollen and itchy and was that way for the next few days.  He was really not very happy for a lot of the week and took all of us to deal with him, but he was happy when we went to the pool. 

I often question making a trip with the boys by myself or doing a lot of things that may involve Wayne not being with us.  Then I have to remind myself that you have to take the good with the bad, realize that sometimes sacrifices are necessary to get to see people that I want to see or do some things that are important to me.  I never know how Micah will respond in a situation, but it is worth it, usually. Even if there are frustrating circumstances along the way.

Strawberry Picking!

A few weeks ago we went to the Wild Things Farm with our MOPS group.  We have been a few times before so we decided this time to just go and pick berries rather than do the tractor ride, etc.  It was fun...and it was fun for Gabriel for about 10 minutes.  Then he was asking when we were going to eat lunch.  So, I was the one who picked most of the strawberries, and we ended up with about 2 pounds.  They were so delicious!  They didn't even compare to the ones you buy at the grocery store.  I made a strawberry pie with a recipe from my "Aunt Bee's Mayberry cookbook".  It was a decent pie, but I think next time I will use less sugar.

I have gotten in a non-posting slump and I have so many pictures that I've taken in the past few months!  We went to Circle of Friends camp this past weekend and I have some great photos so I hope to post those with details of the weekend soon.  We had a great time!

Micah's 7th!

Wow, I have really gotten in a non posting slump!  I think I've just gotten so far behind that it's hard to get started, but here goes!

So, these are just a few of the pictures from Micah's birthday and some of these are a week after his birthday.  I have more on my phone, but will add those later when I can figure it out! 

Micah's birthday started out to be hard day for him.  We took him to this place called the monkey house which has multiple inflatable bounce around kind of things.  He started out well, then something upset him and he never recovered.  Wayne had to take him to the car and I stayed in with Gabriel so he could enjoy it, then we switched duties and stayed for just a little while longer.  He had woken up really early, about 3 am and had not gone back to sleep.  This has been something we have been dealing with quite a bit for the last 2 months.  Anyway, when we got home he slept for about 3 hours and was in a much better mood later.  We had the giant cookie and gave him gifts.  One of the things we gave him was a big bubble machine, which is what Gabriel is enjoying.  Micah went through this phase of not wanting to be outside (which thankfully has passed now), so Gabriel had fun with the bubbles. 

The thing he enjoyed most was the silly string.  In the picture with his big smile I had just sprayed him and he thought it was the funniest thing.  He laughed so hard for as long as the stuff lasted.  As you can see, it's all over the floor.  I did not think about how much of a mess it would be.  I decided next time that we should do it outside, but the clean up was worth five minutes of belly laughter from Micah!

Wayne's family came a few days after his birthday and we celebrated at Chuck E. Cheese's because that has been a favorite of Micah's in the last few years.  He didn't seem as enamored by it this time, but he really wanted to be a part of the band.  He kept going up to the stage, walking around and chuckling.

The last pictures are of Gabriel's "car garden" that he made with Aunt Paula.  If ever a boy loved to play with cars and dirt, it's Gabriel!

Did it snow in your kitchen last week?

...because it did in mine!  Yes, it was one of those moments when I caught sight of what had happened as I strolled down the hall from the bedroom and just gasped.  I had been back in my room just for a few minutes hanging up some clothes and putting away laundry that I had folded.  Micah found the corn starch in the pantry and had a blast with it.  My mom had a good suggestion:put things like this in a ziploc bag! 

What can you do?  I can't discipline him or scold him.  He was just having fun.
I couldn't do anything but just stare for a few minutes until I was snapped back into the reality that I needed to start cleaning it up.  It was EVERYWHERE!  On the countertops, on the refrigerator, under the dishwasher, and in various crevices and cracks. First, I got the broom and then realized I really needed to get Micah cleaned up before he scattered it further all over the house.  So, I took him to get a bath, meanwhile not even thinking about leaving the broom out.  When I came out I found Gabriel wearing my mary jane shoes and pushing the cornstarch with broom. 

Thanks for praying

I haven't blogged in a long time, it has been a hard couple of weeks.  Some of you know through others or through facebook.  I just wanted to say thank you to all who have prayed for Micah in the last couple of weeks. He is doing much better. For those that don't know what I'm talking about, he has been having a really hard time at school, really all year, but especially in the last couple of weeks. Sometimes at home he hasn't done so well either. At school he was just very unhappy, being aggressive and throwing toys and just being destructive in general. There was this weird thing where he was just going crazy if he went outside even for a few minutes. I could hardly get him from the car to the school, and in fact I couldn't a couple of days. I had to have help carrying him just to get him in the building. We also had a couple of evenings at home in which he was just very upset, crying, thrashing and hitting with Wayne trying to contain him. It seemed he was in some sort of pain, but of course we had no idea what if that was the case. He hasn't gotten upset like that anymore and he has calmed down at school. He has even gone outside a couple of times for 20-30 minutes. We thought maybe it was allergies, so we are still taking him to an allergy doctor in a couple of weeks just to be sure. The outside thing could have been just a sensory issue, who knows? He has also had a few nights of waking between 3 or 4-4:30 and not going back to sleep. It would help a ton if he would just sleep a little later!

A couple of changes that have happened are that he is now riding the school bus and loves it. We live too close for him to do that, but one of the drivers who had been helping me carry him got special permission for him to ride the bus and he has been doing so for almost a week now. What a blessing!
He has also moved to a smaller classroom in which there is one teacher, 2 para professionals, and 6 students. At first we were not sure if this change should happen, thinking maybe it would be a step backwards for him. This class focuses more on life skills and less on academics. However, they do work on individual goals and with it being a smaller class he will have more time to do this. A change was really necessary though because he was just so unhappy and causing lots of problems in the other class. We now feel like it will be a good move. He started in there on Friday. I would just ask for continued prayer for him to adjust to that new situation. They have their hands full already as 3 of the students are in wheel chairs and incapable of doing anything for themselves. Micah is all over the place, into things, and sometimes when he doesn't get attention he wants to throw things or be destructive. The teacher told me that if he could just focus for a little bit, she believes he has so much potential. I do too! I want so much for him to grow and develop and learn to communicate better. We are using the PECS (Picture Exchange Communication System) but it is going very slowly.

One praise is that we have not seen any seizures in about 3 weeks! He started a new med about 5 weeks ago and it is apparently working! This med may be causing the sleep disturbance, but we hope not.

Thanks so much for your encouragement!

Great News

Yesterday my sister had an appointment in Houston to follow up on an earlier visit from last month.  During a mammogram they had found a mass that was concerning, she had an ultrasound a week later, then they scheduled her for a biopsy for yesterday.  They sent her through the MRI machine five times attempting to look at the area.  A doctor was sent down to explain to her that they could no longer find a mass to do a biopsy on!   I am so thankful to God for this news!  Kim has been through so much in the last 8 years.  Most of you know she has been living with a brain tumor which has caused her a host of medical problems because of where it is located.  She lost all but 10% of her eyesight in one eye, she has had seizures, and was without driving privileges for four years because of that. Her quality of life was really not great for at least four or five years after her tumor diagnosis. So much has improved in the last few years in her life.  She has been able to get her driving privileges back, her seizures have decreased, and she has even been able to pursue some things she is interested in.  I know she has been able to enjoy her husband and two precious boys more.

Kim and I are considered high risk where breast cancer is concerned.  Our mom is a 15 year survivor...woo hoo!  Our paternal grandmother died of it and we had a paternal aunt who had it.  So, we both started the screening process years ago and it is always lingering there in our minds. 

I am so thankful that Kim was spared of more medical issues at this time!  She means the world to me and our whole family!

Breathing easy

I was washing dishes the other afternoon and heard Micah giggling in the living room.  I didn't think anything about, just thought he had found a toy that was particularly amusing so I didn't go and check on him until I finished the dishes.  I should've checked.  I walked in the room to find him smearing vapor rub all over his clothes, hair, the floor, etc.  I found some on the recliner and a space on the arm of the couch.  Wow.  It was everywhere.  He was having a great time with that.  In the past he hasn't been able to unscrew a lid, but I guess he has learned that recently.  Needless to say, the smell has lingered and all I have to do if I'm stopped up is turn my head and face to the upper left side of the recliner and breathe deeply.

Happenings lately

We had a follow up visit with Micah's pediatric neurologist at ACH in Little Rock last week.  Most of the appointment we discussed seizure medications and it was decided that Micah would start on a medicine that he took as an infant which was pretty successful in stopping seizures then.  He has been on 3 anti-seizure meds and has continued to have one or two seizures per day and they have gotten stronger in recent months, so strong that if he is standing he almost always falls to the ground.  The most negative potential side effect of this med is loss of peripheral vision.  But, the percentage of cases in which that has happened is so small, the Dr. and we decided it's worth trying again.  When he was a baby and started this particular med, it was almost as if a fog had been lifted from his brain and within a few days his seizures stopped.  So, we are praying it will be effective again.  When he was on this as a baby, his sleep was disturbed.  He would be awake anywhere from an hour to 3 hours in the middle of the night.  It happened so much that Wayne and I rotated nights.  We are praying that doesn't happen this time!

Gabriel is doing well over all but is a little sick right now.  He started complaining about his ear hurting yesterday so I gave him some ibuprofen.  An hour and a half later he started crying off and on and was saying "I want some medicine!"  I told him I couldn't give anymore right then so he said "I want someone to help me feel better!" crying as he was saying it.  So I took him to the urgent clinic last night and the doctor said his ear was very infected.  He has had fever and some vomiting too, but with a strong antibiotic he is already feeling better.

I have slacked in posting photos from Christmas.  I can't believe it's already been a month!  I have pics from my new phone that I have to figure out how to get on here and some from the camera. 

Hide and Seek

Last night I played hide and seek with Gabriel.  He doesn't quite understand exactly how it works because he wanted to tell me where to hide and also where he would hide.  So, I had to briefly give him the rules.  Micah wanted in on the action too, he followed me around everywhere, thus giving away my hiding spot.  But that made it so fun because he would laugh hysterically at my hiding places and then I would laugh at him laughing.  I would also say to him "Help me find Gabriel!  Is he in here?!"  And he would sometimes say "Ah!"  almost like he was trying to help or maybe he was just excited.

That's one of my favorite things about Micah.  He finds amusement in the simplest things.  One day last week he was lying on his bed and pulled his comforter over him and I said "It's not night-night time, silly!" and would pull it off of him.  He thought that was so funny and would do it over and over.  I probably did that 15 times or so before his enthusiasm wore off. 

Adventures, or is it hilarity?

I almost hesitated to share these stories about Gabriel, but they are just too funny.  One day, he will laugh too.  We have been working on potty training for months and it is just going so slowly.  However, he is doing well with going to pee, even on his own.  We have been putting underwear on him (as opposed to a pull up) for a few hours in the mornings.  While we were in OK, we even got a little brave and left them on to go out to his grandparents' farm.   As soon as we got there he was acting like he needed to pee and so his Aunt Nel told him that he could pee outside, that he didn't have to have a bathroom.  He said he did not need to go but in five minutes he did, in his pants, soaking his jeans, and shoe.  Then he looked at us and said, "You're right, I can pee outside!"  Not exactly what we had in mind.

We have had this purple car sitting on top of the pantry for months now as incentive for him to go number 2 in the potty.  He knows about it, knows what he needs to do to get it, etc.
One morning last week he had been doing great going to the bathroom and so I told him to just let me know if he needed to go poop and that I would come and help him.  Less than ten minutes later, he waddles in the living room telling me he had gone in his underwear.  With a sigh, I took him into the bathroom and starting cleaning him up.  Then, I starting praying out loud.  "Lord Jesus, would you please put it in this child's head to want to go to the potty, understand what he needs to do, not be scared, or whatever."  Not even thinking about him listening to me, he says "Momma, will Jesus help me get the purple car?"

One of my favorite things

  One of my favorite things about our city is that they make Creekmore park beautiful with Christmas lights just after Thanksgiving.  I really only took a few pictures.  It is a large park and they really go all out.  The boys loved the lights and we enjoyed walking around and looking at them all and then ended our time by playing on the playground.

Only by the grace of God

There are some days when I get to the end of the day and I'm thankful that our boys have been kept from obvious danger.  I'm sure most mothers think that way, but my boys are just rowdy and do things that scare me sometimes.  With Micah, it goes with the territory.  He just doesn't understand boundaries of any kind, whether that's walking out in the street or toward a car, etc.  We don't let him out of our sight for that very reason, but on occasion there are moments when it's hard to avoid if even for a few seconds. He is very strong and even if I am holding onto him, he will sometimes try and maneuver out of my grasp. He loves climbing these days, and that may be on the table, on the couch, or any high surface.  He is also in to sticking things in his ear.  One day I absent mindedly left a pair of scissors on the counter and turned around just in time to snatch them out of his hands as he was about to put them in his ear!  We are careful to put knives and anything sharp up in high places.

Gabriel has become mister independent, wanting to do almost everything by himself (except for the things we want him to do by himself!).  This includes walking out in a parking lot.  He does not want us to hold his hand and sometimes will act like he is being tortured if we try and hold his hand. He also loves to climb and jump from high places. 

As I think about these boys, I'm reminded that I'm not alone and that the Father is watching out for them and Wayne and myself as we parent them.  Psalm 121 talks about the LORD being our keeper and there are many references in Scripture to being protected.  Sometimes children aren't protected from harm and I don't understand why; that's a whole other theological discussion.  For now, I have to submit my fears and worries and believe that He is a good Father.  He is my Help and my Shield.

Simple Christmas tree

 Micah found some beads to play with

 We had fun decorating our tree; Gabriel loved decorating it and you can probably tell which ornaments he hung. We've had our tree up for a little over a week now, and amazingly, it has only been taken down once.  And by taken down, I mean knocked over by Micah.  We've had this pre-lit tree for a couple of years, and while I miss the smell of a real tree, this is the best thing for us.  We always start with as many ornaments as we have, which is not many, because we know they won't stay on the tree for long. 

As I mentioned in the previous post, Micah loves anything in the plant, flower, or tree families, artificial or not.  So, he loves to spin our tree around and if we aren't fast enough to stop him, results in it being knocked to the floor.  The ornaments that survive the fall which may be breakable just don't go back on the tree.  I can't imagine having a real tree now; there would be pine needles covering the floor.  After the tree was knocked over I debated whether it was worth fighting with Micah to try and keep him from spinning it and I eventually decided it is.  We usually only have it for a couple of weeks before it's time to pack up and go visit our families.  Then we have to keep him from their trees!  I love Christmas trees, even if ours is void of anything but lights.  In fact, last Sunday I noticed a couple of small Christmas trees in our church sanctuary.  I said to Wayne "Hey, those look like our tree, they only have lights."  He replied "See, we know how to decorate for Christmas after all.  Simple, but elegant."

Yard helpers

Last Saturday we spent a couple of hours raking leaves in our backyard.  Gabriel was so excited to help rake leaves for the first time.  He actually did help some.  Micah loved picking the leaves up and dumping them all over himself as you can see.  He is really into this phase of picking anything outside, whether it's leaves, weeds, grass, dirt, etc. and either dumping it/them on his head or taking a handfull and raking it over the side of his head like he is brushing his hair with whatever it is.  It's strange, but just one of those phases he is in which will pass in weeks or months, hopefully. 

Micah actually helped put leaves in the bags some, but then at other times would take leaves out that we had just put in.  He and Gabriel both loved to come tromping through once I had a big pile gathered.  Though it could have been frustrating, we actually had fun and enjoyed seeing the boys have so much fun.  At some point Micah carried off 2 right handed gloves and we think may have put them in one of the leaf bags which we didn't notice.  We realized there were two missing and they were nowhere to be found, so that was the only explanation.  We ended up with 14 bags of leaves and probably could have filled up as many more.