Early 40th celebration

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Last weekend we went to Fort Worth for the weekend to celebrate Wayne's 40th birthday a little early.  He has always wanted go to an NFL game, particularly the Cowboys so I planned it a little in advanced, worked it out with his boss so that he could be off part of the day on Friday and all day on Monday so that we would have plenty of time.  I got the tickets early (a gift from his parents, sisters, and me) and had them sent to Janel's house. It was supposed to be a surprise, but he figured it out as soon as I told him we were going somewhere. He's too smart.  Of course, it helped that I forgot to clear out my search history on the computer!

 We stayed with Janel and had a great time visiting with her.  We got to visit with Betty on Saturday, who is one of my dearest friends.  It's always good to see her and there is never enough time!  Sun. evening we visited with Amy (another of my dearest friends) and her family.  Gabriel had a great time playing with Audrey. I'm always amazed at how quickly he makes friends and wants to play with other kids.   It was the first time for us to see each other's kids!

Sunday Wayne and I went to the Cowboys game and really enjoyed it.  Janel graciously took care of the boys while we were there.  Our seats were up very high, but still not bad, especially with the massive Jumbo tron.  We bought some really pricey ultimate nachos and I was ultimately wishing later that I hadn't gotten them. : )  The Cowboys blew out the Bills, winning 44-7.  We picked a good game to go to.

On Monday as we were leaving, we went slightly out of our way so that we could go to In N Out Burger.  That was our favorite fast food burger place in CA and we had heard that there had been some built in D/FW area.  It did not disappoint!

MOPS playdates

These are pictures from a couple of MOPS playdates we've had this fall.  We went to tour one of the firestations in Fort Smith.  There are 10 firestations in this city, which was surprising to me, but good to know.  Gabriel loves anything having to do with firetrucks, firemen, etc.  What's interesting about him is that sometimes he doesn't want to get too close when it comes to actually seeing something in person.  He was a little scared of the firemen and didn't want to get any closer to the firetruck than the one picture I have with him standing in front.  We were actually supposed to see it up close, but they got a call in the middle of our tour and about half the men had to leave.  We moms asked a lot of questions while the kids (mostly boys) wanted to look at the many toy firetrucks, rescue trucks, and other related toys in the glass cases.  Out of all the moms, I got to put on the firesuit and had my picture taken by a man from the Fort Smith newspaper.  He took many pictures and the one that ended up in the paper was not that great.  He even took one of me with all the kids and that wasn't the one that was selected, which was disappointing.

We went to the Wild Things Farm again and it was one of the coldest days we've had, but it did warm up.  Gabriel loves going to this place.  He was not interested in sliding down their homemade slide but was happy to stand at the top and watch the other kids go down.  Next week we are going to one of the local pizza places to learn how they make pizzas.  That should be fun!

We've come a long way!

As November rolled in, I have been reminded of this season of Thanksgiving.  Not that we should only be thankful in November or on Thanksgiving day, but every day for lots of things.  I recently read a book called "One Thousand Gifts" by Ann Voskamp and it has impacted me greatly.  It's basically an incredibly, creatively written book about giving thanks in all things whether small or great.  The writer was challenged by a friend to began recording things she is grateful for, daily, at various moments as they came to her mind.  So, she in turn challenges her readers to do the same.  I have started this in a journal separate from my other journal (which I very sporadicly write in).  I may post more about this book in later blog entries, but this is one of the things she said that most impacted me.  She writes "In this counting gifts, one thousand, more, I discover that slapping a sloppy brush of thanksgiving over everything in my life leaves me deeply thankful for very few things in my life.  A lifetime of sermons on 'thanks in all things' and the shelves sagging with books on these things and I testify:life-changing gratitude does not fasten to a life unless nailed through with one very specific nail at a time."

The last picture is one of the things I am grateful for.  Of course, I am grateful for all three of those guys and love them more than I can say.  But, I am so thankful how far Micah has come in adjusting to Gabriel.  The first picture was in the hospital the day after Gabriel was born.  You can see the tears in Micah's eyes.  I cannot describe to you how hard the first several weeks and months of Gabriel's life were for Micah, for me, maybe even Wayne.  I think Micah did not know what Gabriel was or why he was suddenly in our home.  He cried so much and at times would even hit me while I was holding Gabriel.  I remember talking to my dear friend Stacey on the phone just days after he was born and questioning whether we had made the right decision to have another baby. I felt like it was almost too much.  She had lots of wisdom and encouragement to give and prayed for me as we talked.  The days and weeks were hard, especially after moving to a new place with no friends and Micah spent a lot of time alone in his room when Gabriel wasn't sleeping.  The middle picture shows Gabriel lying on his little blanket with toys hanging down.  He was purposely put in front of the Christmas tree because that's the only way we could keep Micah away from the tree.  We called Gabriel the Christmas tree guard; maybe it was cruel but it worked!

Now, Micah willing gives Gabriel bedtime hugs and will occasionally play with Gabriel.  Sometimes Gabriel will pull him by the shirt to take him in his room.  Sometimes Micah is okay with this and not at other times.  We are trying to teach Gabriel to be respectful of him and understand if Micah doesn't want to play. 

There are still some things with Micah that are stressful, but this is one area that has gotten so much better.  And I am thankful.

Micah is Superman!

 

On Halloween day, Micah's class had a party at one of his classmates' home.  The teacher invited Gabriel and me to come, so we did.  I was so proud of Micah for wearing and tolerating his Superman costume.  I wanted to be creative, but ended up going the easy way and got a Superman costume.  I knew I had to find something without a hat or a mask.  I found the Superman costume on sale so it was an easy decision!  Gabriel told me four days before Halloween that he would NOT wear a costume, I believed him so I didn't get him one.  He was fine with that and seemed to not be bothered in the least that he didn't wear one to the party or to our church's fall festival later that night. 

The party was fun, especially for Gabriel.  He had a great time playing with the other kids.  Micah enjoyed roaming all over the yard looking for unsuspecting plants, weeds, and flowers to pull with me following behind trying to keep him from pulling said plants.  Thankfully, the host (mom of Micah's classmate) was not bothered in the least and told me "Hey, flowers are for picking!  There is nothing here he can harm!" 

There was supposed to be bobbing for apples; that's the tub of water you see Micah and a couple of others playing in.  The game was stopped after the second kid spit in the tub.  They didn't seem disappointed that the game was called off.  Micah had a great time jumping on their mini trampoline and was doing this while the other kids were "trick or treating" at the back door.  Gabriel got to trick or treat for him and for Micah. 

Later that evening we went to our church's fall festival which is a huge deal.  Our church gives out free hot dogs, nachos, and candy galore to probably between 3,000 and 4,000 in the community.  There are games set up on the parking lot and the trick or treating was inside in the children's building.  Micah didn't last long, he was so tired that he just kept wanting to sit down.  Wayne took him home probably ten minutes after we had gotten there.  We had taken two vehicles for that reason. We never know how Micah will do in a situation so we are learning we need to do that so that Gabriel doesn't miss out on activities.  We only had time to trick or treat and had to wait in line for quite a while just to do that.  The food line was way too long afterwards so we came home.  Gabriel had so much fun handing out candy to trick or treaters.  I had to coach him because he was giving out handfulls of candy to gasping children.  Even after I told him "Only two pieces to each." He would still give out too much.  Oh well, it just meant we could turn out our porch light sooner.

Gabriel Conversations

I know I am slacking in updating about recent events, but I thought it would be fun to post some things Gabriel has been saying lately. 

"Momma, did you know that honey comes from bees?"  He says I told him this but I don't remember if I did.
G:Momma, what do animals eat?  Me: Which ones?  G: Giraffes, elephants, ants, and gorillas.

All I could think of is what they eat at the zoo, and probably not what they eat in their natural habitats.

Last year he would see the president on TV and say "Obama!"   One day recently he was walking around saying "Mitt. Mitt. Mitt Romney."  I suppose he saw and heard his name on Good Morning America.

He likes to say "Does that sound ok with you?" Sometimes when we take Micah to speech/OT therapy Gabriel and I will go to McDonald's to play.  So he might say in advance, "We can go to McDonald's.  Does that sound ok to you?"

When he gets in trouble for something and we ask him why he did it.  His favorite answer is "Because I did."  I'm not sure he understands the why question yet.

Lately he likes to pretend we are in a restaurant and will say "What would you like to eat, suh (sir)?"

We are trying to potty train him but it's going very slowly and he is not very excited or willing.  One day Wayne put underwear on him and after just a little while said "Now you tell us when you need to go potty."  Gabriel replied "It's too late." 

eventful days

It has been an eventful couple of weeks with me having gone to Alaska and then Micah had a short hospital stay at Arkansas Children's.  I'll get to the Alaska trip later and post some pictures though my selection of pictures is quite pitiful compared to some others took on our trip. 

Probably most who read this are aware that we had a slightly scary situation with Micah week before last, but I will recap for those who didn't know about it.  Wayne went into his room to wake him up that Thursday morning for school and found him unresponsive with a large amount of drool and mucus on his bed.  He brought him to the couch and came to get me.  He was convulsing and seemed like he was having a hard time breathing.  Since we live close to the hospital, Wayne took him to the ER and I stayed here with Gabriel.  We expected that he would be there for a few hours and then come home.  He had 2 grand mal seizures and had a third once he got to the hospital.  Since he had never had those, they wanted to be super cautious and send him to Arkansas Children's Hospital in Little Rock.  He and Wayne went by helicopter and I made arrangements for Gabriel to be taken care of for the day, packed, and headed to Little Rock.  Thankfully, Wayne's parents were able to come over and take care of Gabriel later in the day and for the next two days.

The hospital here in Ft. Smith originally thought he had pneumonia but it turned out that wasn't the case.  He was sick all that day, possibly from the helicopter ride.  I was so glad my parents were able to come to the hospital and were with us until Micah was discharged on Saturday.  By Thurs. night Micah was happy and at the same time annoyed by all the wires attached to him.  It was a fight to try and keep everything attached.  He was so happy to see Nana and Paw Paw.  Wayne stayed with him both Thurs. and Fri. nights in the hospital room.  At six years old, a lot of times he is too strong for me to handle when he gets upset or rambunctious.  I am thankful he has a Daddy who is big and strong!

Friday afternoon Micah had an MRI to try and determine if there had been any changes to the growths in his brain, which might have explained a new kind of seizures and some of the behaviors we have seen.  But, no.  The MRI revealed no changes at all and no explanation for the seizures.  Sometimes kids with Tuberous Sclerosis can develop new types of seizures as they get older.  Now we have medication to take with us wherever we are so that if he has one of the grand mal seizures we can adminster that to stop it.  Micah also had his eyes checked for tubers around and on the eye nerves (he hadn't had his eyes checked since we lived in CA) and they were completely fine.

By Friday night Micah was back to normal and really ready to be out of his hospital bed and it was a huge effort by Wayne, myself, and my parents to keep him there.  He was upset, frustrated, crying, kicking, trying to jump out of bed, pulling at his IV, etc.  He finally settled down around 10 pm and slept through the night.  If the doctor hadn't offered to discharge him on Sat. morn, I think we would have begged!

We are thankful that what started out as a scary situation turned out to be just fine.  I'm so thankful for parents/grandparents who are willing to help us and be with us during unexpected times when we need them.  We also thank all of you who prayed for Micah.

prayer for Micah

We've been having a really difficult time with Micah for several weeks now and we are asking for prayer for him. We thought that it was just that he needed routine, having been out of school for several weeks but he has now been in school for a month and should have adjusted by now. We have had lots of days of him just not being happy anywhere...home, school, or church. He has been aggressive at times, hitting and kicking his teacher and aides in the classroom and us at home as well. Sometimes he is just ornery; he will knock things off any surface, throw toys, or pull on our dining room chairs, etc. Sometimes when he does these things he just looks at you and laughs.

We have been trying to get his behavior medication worked out. One that he started in April seemed to really help but then perhaps lost its effectiveness in the summer. He has been on it but it seemed to really make him sleepy in the mornings and was not able to function at school so we took that away. We started a new med on Monday and it has not gone well. He has been even more hyper, constantly pacing, and not cooperative in the least, especially at school. His teacher cried yesterday and she has never done that. She just does not know what to do anymore. She said it seems like he is not the same Micah as last year. He is not willing to work on any goals or willing to be worked with one on one. She has been teaching for 35 years and she knows what she is doing. He has the same teacher and classroom as last year. They are having a hard time working with the other students because one of them (teacher and 2 aides) is having to be with Micah so much. They are fearful that he will hurt himself or someone else because he has been so rowdy.


We have also been doing a nutrition therapy with Micah and so far it's just that he's getting some supplements of protein, Omega 3s, and a high quality multivitamin. We have been doing this for about 6 weeks and haven't seen much improvement and his eating habits are not much better.


Probably the next step is for him to have a MRI of his brain to make sure there is nothing different going on with the growths there, etc. We were supposed to do that in December, but I think it may need to be sooner. I don't know that it will provide any answers, but it's worth a try.


I went to a seminar on Mon and Tues in Little Rock for the Picture Exchange Communication System. I know Micah's speech therapists both at school and the other clinic he goes to have been doing this some and we want to pursue it at home. I'm sure he is frustrated a lot about not being able to communicate much and we are desperate to try and communicate more with him.


I woke up a couple of times in the night thinking of my conversation with his teacher and just anxious, wishing we could find some solutions. I know Philippians 4:6-7 says "Don't worry about anything, but in everything, through prayer and petition with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses every thought, will guard your hearts and minds in Christ Jesus." I know I'm not supposed to worry, but these days it is hard when we feel like we are trying so many things and not much is improving. All I know to do is to continue to trust and pray. I would be honored if you would join me.

One last thing, I am going to Alaska on a mission trip with my church, leaving this Saturday and coming back the following Saturday.  I'm so excited about it.  I must admit, I'm a little conflicted with everything going on with Micah, yet we have been planning this for months and have made arrangements for family to be here with him and Gabriel and to help Wayne.  I would appreciate your prayers for this trip as well.  I'm looking forward to seeing what God is up to in Alaska!

A couple of snippets

I am loving Gabriel's mealtime prayer these days (it's been the same for several days) : "Thank you God for the food and we can have a good night's sweep and pway outside."  The poor child doesn't get to play outside much because it's still so hot so I guess he feels the need to pray about it!

I took Micah to his dermagologist the other day because of a perpetual rash on his arms.  She suggested we put vaseline on it and wrap it with saran wrap to see if that helps since what we've tried hasn't worked well.  I sort of stared blankly at her all the while thinking that I might have a timer ready if and when we do it to see how long it stays on his arms.

She also commented on the bumps on his face (that sort of look like acne) that are characteristic of TSC and asked if he was about to go through puberty.  I said "I sure hope not!  He's only six!"  She said "Oh my gosh, he looks so much older!" 
He could pass for 8 or 9, but probably not 12 or 13!

Back from an unintentional blog break

Micah's first day of school

Gabriel making Jello

Wow. It has been a long time since I last posted! There has been a lot of things going on and a lot of traveling. Most of it has been good, but it has honestly been a hard 6 weeks or so. Micah started back to school last week and has not really adjusted well. The teacher told me Friday that it was the worst day she'd ever had with Micah (this is her second year to have him in her class). He has been really difficult to control with a lot of smacking at adults, pulling on them (us) and even kicking. He was actully doing a lot of this in recent weeks. All we can make of it is that he has just been so out of routine and hasn't known what to do with himself. During June, he was in a half day summer school program so he at least had some sort of regularity. After that he was here every day and then we also traveled a few different places in July and early August. With having record heat here in Fort Smith, as high as 115 and never going below the 100s for a few weeks, there are few places to go in this town...especially with both of them by myself. I'm sure part of it has been complete boredom.

His teacher told me she thinks it may even take longer than a week for him to adjust back to the routine. He has also been waking in the middle of the night a few nights a week and not going back to sleep and then sometimes not even taking a nap later that day! I don't see how the kid does not fall over from exhaustion! We are consulting his Drs. for wisdom.

I will post some pictures and other news of our summer in the days to come.

similar situation

One story in the book "Plan B" really impacted me because it was similar to our story. The difference was that this couple had already served on the mission field and had twins and their twins were born very ill. They survived but it was discovered after some months that they were both deaf. Their father was quoted as saying "This is not the way we thought parenting was going to look. This is not the way we thought ministry was going to look. This is not the way we thought life was going to work." I could relate to that. The author of the book follows that by saying:

"I think this is a difficult truth to grasp, but God loves you enough to strip you of anything that keeps you from him. And often these things that separate you are not bad in and of themselves. Often, in fact, they're good things-relationships, missions, jobs. But if for some reason they are keeping us from knowing God as we should, he may take them out of our lives." Then a few paragraphs later he says "Time and time again in your life you're going to feel as if God isn't showing up. You're going to feel as if God isn't healing, he isn't restoring, he isn't releasing his mighty power. These moments are crucial because God is trying to get you to the place where you can't handle things on your own, where you are willing to surrender your plans in order to receive his. He's trying to mature your faith."

I really think it was easy when I was in college, single, doing my own thing, traveling the world and the states serving in missions. I thought back then that my faith was growing. It was, and I will always be grateful for those days, for God's hand in places I lived, the opportunities I had, and the people he placed in my life in those days. I honestly feel though like he has grown my faith more in the past several years through marriage and through having kids, and having one with a disability to really grow my faith. He continues to do that.

Long but decent day at ACH

Some of you know that we had three appointments at Arkansas Children's yesterday for Micah. The first one was for Nephrology (kidney specialist) because he had an ultrasound about 6 weeks ago that revealed numerous tubers in one of his kidneys. We had been told when he was a baby that this would be a strong possibility as he got older. These growths (angiomyolipomas) usually occur in about 60 percent of kids with TS. They aren't problematic unless they grow or get to a point of hindering kidney function. So, what we were told yesterday is that though Micah has many of these tubers in his kidney, they are very small and are not threatening at all at this point. We will just have to monitor the situation and see the specialist again in a year.

The hardest parts of the day were Micah getting blood drawn (it took Wayne, myself and two other nurses restraining him and another to stick him with the needle). He just didn't know what was going on and the kid is so strong already at 6 years old! We had to hold him down for the ultrasound as well. After those appointments, he was fine.

We saw his neurologist in the afternoon and actually got in to see him a little early, which was a blessing! We really like Dr. Sharp and have seen him several times now. He explains things very well, he talks about options (medications) and asks what we want to do rather than saying "this is what we'll do". He is very good with Micah too and I think Micah is comfortable around him. He said in December it will be time to do a MRI of his brain to check on the tubers there and at that time a neuro-opthamologist will check for growths in his eyes and nerves around his eyes. We haven't done that since we lived in California.

All in all, it was a good day with a good report about the kidney. Also for all the waiting around and shuffling to different places, Micah did well. We had some sweet friends who kept Gabriel for the day and that was a HUGE help to not have to shuffle him around as well.

Happy 3rd Birthday, Gabriel!

Gabriel is three years old today, which doesn't seem possible. I think all mothers say that and I'm sure I will continue to say it as the years go by. I thought it would be fun to post some pics from the day of his birth and one recent one. By him having his feet in the sink, it's a perfect picture of a child acting his age. It was a few weeks ago and Wayne was occupying Micah while I cooked supper. Somehow Gabriel was left unattended and we found him in the bathroom with the sink filled with water. It was one of the moments when you get frustrated but you just have to laugh.

I have mentioned to some about the story of Gabriel's birth, not that it is all that unusual but it was a bit comical and had some unexpected twists as he came quickly (similar to Micah's birth). There was no time for an epidural or any other pain relieving medication though I had already decided I didn't want any. I'm kind of crazy like that. Anyway, I'm going to attempt to link the post because I wrote all about it on this blog 3 years ago.

Fun weekend

Last weekend our dear friends Charley, Marianne, and Joshua came to visit for the weekend. We had so much fun! We went to eat tasty catfish on Friday night and Saturday afternoon we took the boys to the sprayground here in town. As you can tell from the pictures, Micah had a blast! He loves to go to this place and obviously doesn't even mind water sprayed right at his face or head. All three boys had so much fun. Sunday evening our church rented out a water park nearby so we all got to enjoy that as well. We enjoyed catching up with each other and Joshua and Gabriel had a great time playing with each other.