WooHoo!!

So yesterday I started the day like any other.  I get up at 7am, eat breakfast, take a shower, open Luke’s room so he can start waking up for school…and then finish getting ready myself while Luke is working on waking up.  I learned a long time ago to never just wake him up and grab him, if he isn’t happy when you get him up out of bed…he’ll stay unhappy for a long time afterwards. 

While I was getting ready and Luke was supposed to be lying in his bed waking up and getting happy, Luke decided to try a new trick.  I was in the bathroom doing my hair and make-up when I hear laughter.  I didn’t hear any other noises…like thumping or rattling that would indicate that he was kicking his feet or anything like that on his bed.  So I went to investigate to see what was so funny.  What I found shocked me.  Luke was standing up by his mat that is against the wall, and was holding on to the rope!!  I was so happy for Luke!!

This was not something easy for him to do for several reasons.  One is that this bed’s mattress is soft and therefore it is hard to get your balance on.  Two, the rope itself is not extremely tight so it isn’t the most sturdy object to hold on to in order to pull up.  Three, Luke has not even come close to mastering the art of standing up on his own, without holding on to something. 

So all of these things combined really show how great Luke is doing!  He is getting so strong!  When I saw him standing there I just shouted “WooHoo!!”  I was so proud of him.

Who am I?

Growing up I think we often wonder…who am I?  When were are little we are baby…so and so, like Luke was “baby Luke” for the longest time.  Then we get past that stage and we start having nick names, like Luke’s are “tank man”, “little man”, “nucky” or my favorite “sunshine”.  Some or maybe one of those names will stick and we’ll always be known as our nicknames.  My family, specifically one of my brothers started calling me “squirrel bait” when I was young and to this day…..he still calls me that.  By the way…I’ve been told it wasn’t because I was “nuts”, but because I was so small they could feed me to the squirrels.  Although…I’m not sure I believe the story…after all it came from my brother.

Anyway, as I was saying…we have these nicknames.  Then we go to school and we get a whole new set of names, some of us have those long “proper” names that the teachers will always call us by….like Robert…but our friends will call us by many other names…like B.J. or Robby or Bob. 

Then after we are out of school and we get married…we get even more names….”pet names”.  My husband calls me “Share Bear”, not really sure where it came from….but it has stuck.

Then come kids….it starts with the doctor’s office.  You call when they are sick and instead of giving your name, you are now known as “Luke’s mom”.  Then you call so much that all you have to do is say their name….and they know who is calling.  Once and a while I call and I tell them Luke’s name and depending on which nurse I am talking to…..they’ll ask me what is wrong…but use my name.  In those moments I realize that I am losing my identity.  I’m no longer my own person…I’m attached to these munchkins forever!!  Kind of a scary thought. 

I have to call so many doctors and therapists…and now the school when Luke is sick or needs something, that I don’t think about it much anymore.  I just say, “this is Luke’s mom can we set up a therapy session?”  It took a while…but by the time our baby girl came around….I was getting in full swing with my “new identity”.  Now, the biggest problem I have is when I call the doctor…or I go to pick up a prescription or something…and they ask…”what’s their birthday”…..I have to pause and think a second…and think through who I’m talking about here.  There have been times I’ve combined Luke’s birthday and our baby girls and had to retract what I said.  A real enlightening moment happened when I called a doctor for myself….and they asked me my birthday and I paused for so long….I just laughed and then told the nurse and then had to explain that I wanted to give her Luke’s birthday instead.  It just all becomes so automatic when you are raising kids to rattle off their names and birthday’s…but when it comes to myself I can’t remember my birthday…and many days my name…after all I’m just “Luke’s mom”.

An EEG experience

Have you ever gone on vacation someplace beautiful or unique and you come home all excited and tell people about it?  You show all your friends and family the pictures and tell all the stories.  But, in the end it just isn’t the same as actually experiencing the trip yourself.  You know that after all the pictures and descriptions you give your friends and family, they don’t really KNOW what the trip or experience was like…because they weren’t there.  They didn’t experience the sounds, smells, wind and all the things that really make an experience unique and memorable to you.

I’m finding that the same idea is applying to all our medical experiences with Luke.  Until you go through them yourself…you just don’t really know.  All the pictures and descriptions just aren’t enough.  Luke’s therapy, his MRI, his muscle biopsy, and his eye surgery were all experiences that are hard to describe.  Even experiences like trying to get a urine sample from Luke are things that are better “lived” than described.  I’ve gone through that experience twice…both experiences were different…and neither one very fun.

Well, after yesterday we have a new “experience” under our belts.  The EEG.  I can’t imagine this is a fun experience for any parent of a small child.  But with Luke…the boy who doesn’t sleep in the car no matter how long the drive, and doesn’t sleep with other people in the room….I was dreading this experience.  Luke had to be sleep “deprived”, which meant he could only sleep from midnight till 4am the morning of the test.  Because I was scared that Luke would still not sleep during the test…I even cut his nap short the day before.  Instead of 3 hours…he had a 1 ½ hour nap.  This made for a very cranky boy on Wednesday night. 

Thankfully I have a wonderful husband who helped me with Luke.  He kept Luke up till midnight and let me go to bed around 9pm.  They watched some Veggie Tales and then I heard them playing some basketball and things.  This meant I didn’t get to a deep sleep till later on, but at least Luke was happy and awake.

Then 4am came, and I got up and let my husband sleep.  I woke Luke, which took some doing…he did NOT want to get up.  Once up he stayed cranky for me…but I bribed him with teddy grahams and juice.  We had our breakfast around 5:30am and left for the hospital around 6:30am. 

Luke did really well until the nurses wanted to put things on his head.  Luke is just too curious and has to see what is going on.  Well…you can’t see the top of your head….so one nurse tried to keep him happy and held his head, while the other measured, marked, and then glued all the wires onto various places on Luke’s head.  Luke was doing pretty well with this part until he decided to trick one of the nurses.  Luke was playing really nice, smiling and everything….then all of a sudden he reached up and pulled off three wires!!  The nurse dubbed him a “stinker”…which I agreed with, and I told her he was probably laying there planning, just waiting for the “right” moment to get those wires.

After the wires were on, they took some wide gauze and wrapped Luke’s head.  It went around his head like a Turban and then they went under his chin as well.  In the end it reminded me of a mummy….only Luke eyes nose and mouth were seen.  I wish I had my camera.

Then I lay down with him trying to get him to sleep.  I even remembered the Randy Travis CD (if you remember this is one of best ways to calm Luke in the car).  Luke cried for the first 5-10 minutes….then we laid there in the dark listening to Randy sing.  Luke fought sleep for a good 40 minutes.  Then finally he drifted off.  He was only asleep for about 5 minutes before they called an end to it all.  This all seemed like a lot of work for 5 minutes…but at least he did go to sleep finally!!

Then after they took all the wires off there was all this glue in Luke’s hair and it had a red coloring to it as well.  It looked like he had been playing with some red paint.  The nurse used a washcloth and got most of the glue out…but the glue ended up being smeared all over turning in the glue into a  “styling gel” of sorts.  The nurse even took a comb through it and made cute little spikes in his hair, so he would look “presentable”.

After we got home, around 10:15am, I gave Luke an early lunch and then a bath to get his “gel” out of his hair.  Then I laid him down for a nice long nap…and I found some zzzzz’s as well.  My wonderful husband took Thursday off so he could take care of our baby girl…and they were off with the grandparents “fishing”….so the house was nice and quiet!!  So nice!

Luke got a nice long 4 hour nap before I woke him up, and I found that I didn’t wash his hair good enough.   Luke’s hair looks so funny, there were three areas where his hair was gathered together making it look like someone had come along and chopped his hair down to his scalp in those areas or something.  Later that night Luke got his second bath of the day, I finally got the glue all out!!! 

I am so grateful that the EEG went better than I thought it would.  It was still an experience not easily forgotten.  

Type A Personality?

Lately I’ve been wondering if Luke is developing a Type A personality….almost OCD or something.  He has been “organizing” his toys ever since he learned what it meant to put things “in”.  Over the last couple years he has taken the whole “in” concept to a whole new level.  He spends most of his time playing by taking all his toys (Legos, plastic food, blocks, balls, and whatever medium to small sized objects he can find) and puts them in one place.  Then he finds a new place and puts all of his “toys” in this new spot. 

Some days he puts everything in a drawer somewhere, like the oven drawer, and then turns around and puts everything in his wagon.  Other days he goes back and forth loading up the wagon and an empty box.  While other days he stashes his toys all over, in his Little Tykes kitchen, clothes drawers, and on a shelf under the TV and then goes around with the wagon and puts them all in.  If you interrupt his “toy gathering” he gets VERY upset.  Not just a little cry, but a full blown fussy fit…complete with crying and throwing a toy or two that are close by.

Then there are the times in the last couple months where he has began “organizing” his food.  Because we can’t trust Luke to NOT throw his plate and NOT stuff his mouth so full he can’t even chew, we put all Luke’s food on a plate and then give him a few bites of food at a time.  Mostly we give him finger foods, and when we are able we work on using a fork.  (You can’t trust him completely with a fork either, before you know it the fork can be clear across the room).

So, I give Luke a few bites of grapes or chicken or whatever at a time.  Once Luke gets about half done he has started putting the “bites” I’m giving him back on his plate.  Then once the food is back, he will arrange it the way he wants.  So if there are a couple grapes in two different areas on a plate, he will move them so they are together….and if there are any on the table they go on the plate as well.  Then once they are all in one spot…he proceeds to put all of the grapes in another spot on the plate. 

I think he could do this all day.  So I let him do it a couple times and then tell him to eat and stop playing around.  At first I was pretty concerned about this new “habit” of Luke’s.  It’s good to be organized…but when I see him doing this with so many things…including his food….it makes me wonder if something else is going on.  But these fears are disappearing after talking to one of Luke’s therapists.  She mentioned that a lot of kids that can’t control a lot (like their fine motor or gross motor movements or even their speech), tend to control what they can.  This makes a lot of sense to me.  So now I am trying to understand Luke’s “obsessions” and allow him to control what he can, whenever possible.

Go...Go...Go Luke...Go!!

Today I just have to share what great thing happened just this morning.  As I’ve mentioned in the past when Luke does something new it feels so wonderful.  As a parent when you child finally feeds themselves, crawls, walks, or talks….you feel such a relief in that they are becoming more independent.  Well…when Luke reaches these kinds of goals the relief and thrill seems so great…it reminds me that God is listening to my prayers for healing in Luke…that He continues to work in Luke even when we don’t always see it.

I felt this when Luke started crawling, when he started using his walker on his own and when he pulled up for the first time last summer.  Today I felt this again.

I was sitting on the couch and Luke comes over and pulls himself up.  At first I thought he was just reaching for a toy that was up there with me, but then I noticed he was trying to put a leg up on the couch.  Now, he has tried this in the past…but not like today.  Today it was like he wasn’t going to give up…no matter what he was going to get that leg up on the couch.

Luke was getting frustrated, crying to me…so I decided to help him crawl up on the couch.  It didn’t take much to help him, just give his leg some support.  Then after a while he wanted down off the couch.  So I helped him do this.  It became a cycle that I helped him with a few times, then all of a sudden he stands up to the couch, puts his knee into the place between cushions and pulls himself up onto the couch!!  All by himself!!  I was so happy for him.

Luke continued to do this throughout the morning and early afternoon.  Six times in total!!  It is just another step towards his walking and talking goals.  But, each step like this is so BIG….and I am so thankful.

Is that really funny?

Alright, any of you who follow my blog already know that Luke has a unique sense of humor.  I’m not sure if all kids are like this, if it is just Luke.  I know our baby girl doesn’t find everything so funny, she usually laughs when she makes Luke laugh.

Anyway, on our vacation a few weeks back there was a time where Luke started laughing and I couldn’t help laughing myself.   We were driving in to the nearest town one day, and it started raining.  All of a sudden Luke started laughing.  He would laugh and stop….laugh and stop….I couldn’t figure out what was so funny.  I asked my husband, “what is so funny?” and he noticed that Luke was laughing when the windshield wipers were going across the front of our vehicle!  I couldn’t believe it, so I watched and sure enough when the wipers would go across the windshield, Luke laughed!  I tried to get this on video, but of course Luke wasn’t laughing as hard for me then…but you can get the idea.

Will we ever get it right?

We have been once again forced to “re-evaluate” how to protect Luke from his wall next to his bed.  The pad still works, but the bungee cord idea is now out the window.  Last week, I noticed that Luke had some blisters and some broken skin on the underside of his fingers, right where they bend.  At first it was only on one finger, then a few days later it was on three different fingers.  The only way I could think of, that he could of done this, was in his “bungee cord game” he likes to play in his crib.

So we once again had to think about how to keep the mat up high enough on the wall without it falling over.  At first we were thinking to try something my dad mentioned, one of those tarp straps that adjusts and locks in place.  Then when I saw that, I realized how big the metal piece is that controls the length of it.  I figured we better try something else, since Luke would probably find a way to get a hold of the metal piece and really hurt himself.

The next step?  Well, my husband, the genius that he is…said “why not rope?”  My husband then comes in the house with this rope that is camouflage in color, since he keeps it to use when he goes hunting.  Why not?  I’m thinking that it isn’t elastic, there is no metal…so maybe it would work, even if this rope is designed to blend in with a forest.  So far…the rope has been up for 3 days…and we are doing well.  I just hope that Luke doesn’t figure out how to chew on it.  Right now I think it is a little too high, but you never know with Luke. 

This whole mat experience has been like any other of parenting.  You encounter a challenge, try to find a solution, and when that doesn’t work….you try again and again….and again.  Hopefully one day you get it right, after all as humans we aren’t perfect….all we can do is keep trying our best. 

A great new hiding place

Luke is always looking for new places to hide things.  Just a couple weeks ago, I spent an entire day looking for one his juice cups.  When my husband came home I told him about this and he asked me I looked in all the usual places; behind the couch, in the trash, in the bathroom, in Luke’s diaper drawer, in the Little Tykes Kitchen, behind the TV, and in his sister’s laundry basket.  “No” I told him…”it disappeared…I looked EVERYWHERE”. 

Well, that didn’t stop my husband from looking.  He made some comment about Luke was outsmarting his momma, but daddy was here now….so look out.  Sure enough after 10 minutes of looking he found it!!  I was so frustrated and looked all day and it only took him 10 minutes!  Of course he found in the one spot I told myself it couldn’t be in, inside the “diaper champ”.  If you are not familiar with these, they are set up to collect diapers without being too stinky.  You place the diaper in the top and then flip over compartment using a handle, then the diaper falls below in the trash bag and is ready for another diaper to be placed in the compartment on top.

Anyway…somehow Luke put his juice where the diaper goes and used the handle to flip it over so that the juice was INSIDE the trash bag underneath that held all the dirty diapers!  I spent a lot of time disinfecting this juice cup.

Now that I know his new spot, I wonder if he'll find even another spot to "stump" his mamma next time.

Peek-a-boo!

One of our kids favorite pastimes, in Peek-a-boo!  When they get upset it is one of the first things I try to cheer them up.  Of course Luke has also had a fetish lately with just covering his head with a blanket.  Sometimes he does this in his sleep...like he doesn't want to be disturbed or something.  Well on our way home from vacation last week, he decided to do this in the car.  I'm not sure if he was telling me he wanted to go to sleep, which he never does in the car, or if he was tired of seeing me...since I was sitting between him and our baby girl in the back seat.

Of course our baby girl isn't about to be "out-done" by her big brother.  She loves to hide her head behind anything she can...whether it is a blanket or her hands over her eyes.  The funniest thing I've seen her hide in happened only this morning.  She decided to use Luke’s cardboard box to hide in.  Both kids thought this was very funny.  

I don't know why my kids love to hide their faces so much....maybe they are playing "peek-a-boo" or maybe they just want to hide for a while, thinking that by covering their faces they can hide their whole body or something.

Stand-Up's

In PE growing up we always had to do sit-up’s, well for Luke we do a little sit-up and a lot of stand-up’s.  Over the fourth of July all the family was gathered and Luke was standing with his Uncle when he decided to drop to the floor.  Before we knew it he was doing his “stand-up’s” with his uncle, and I was able to catch a little of the fun on video.

Uphill Battle

Luke continues to work on so many different skills with his PT.  I remember when we first started therapy with Luke at age 15 months, the goal was for him to crawl.  Then once he could crawl we worked on his ability to crawl up a mat that was shaped like a large triangle, kind of like a ramp.  Now that Luke can walk well with his walker they keep working on his balance and one of the way to do this is to work on his walking skills up and down a ramp. 

The other day his PT worked on this with Luke and she used a large exercise ball as well.  The goal was for Luke to walk up the ramp and push the ball up the ramp at the same time.  Then once he gets to the top he gets to push the ball and let it roll down the ramp and hit any toys at the end.  This wasn’t the first day they did this exercise and Luke always finds the part with the ball rolling down funny.