House of Krause

Happy

Birthday

Lily!

My favorite picture of us together. Taken in a cheapy booth. Black and white, you rubbing my ears. You loved rubbing ears! You would say ears feel cold. Happy 7th birthday sweetie! I love you so much, Mom-

Seven for me held my most precious moment.  It was the year that I gave my heart to Jesus! I will never forget that communion service. I sat on my mothers lap, in our quiet candle lit church, and asked Jesus to come into my life. And you know what, HE DID! I can still remember the feeling that came over me.  I felt so happy, like my feet were floating on air. I had been changed. My name was written in the book of life. The angels danced.  Looking back now, I realize what a defining moment that was in my life. I realize the power of God’s love for me. I realize that though the years, God’s love stays strong and true. It never changes. It never ends.

My Lil’ says she already gave her heart to Jesus.  How wonderful!

Today could not have gone any better!   Children’s hospital in Orange County is a wonderful place. Naturally they cater to making children feel as comfortable as possible. I think Luke actually enjoyed himself ……

He had fun playing with an awesome service dog named “Lily”, she even had her own business card…

She’s a black lab, so you have to look closely….

Then we waited for the technicians to come and get us. I had been explaining to Luke the last couple days that we were going to the hospital. I told him the nurse was going to make him a funny hat, and that we would get to take a nap in a big special bed! He understood…They walked us in, asked us some questions. I talked him through the 30+ electrodes they stuck all over his head. Then she began to wrap up his head. He sat as still as could be. I told him how proud I was, and that it was time for that nap. He leaned back in my arms, and was sound asleep in less than a minute…

At that point they flashed a series of lights in his eyes. I  starred intensely at the technician behind the screen for any facial clues. She was so nice, but of course said the doctor will call you with the results, I’m sorry, I can’t tell you anything….

So we wait…. But I can tell you God’s peace was with us today! Prayers were felt. Things could not have gone any smoother…Thank you Jesus!

Tonight when I put Luke to sleep, he leaned over and showed me his little folded hands together. His sign for pray…So that’s just what we did…Luke signed his prayer while I said mine aloud…

Good night.

One good thing about Apraxia is it makes you slow down and just watch and wait. I guess that’s called patience.  It is  slow going with the speech, but it really does happen. And when it does, it is so exciting! Looking back to just six months ago, Luke was saying no words. I was concerned that maybe he would never talk. Now at thirty months he has so many words. I know we have a long way to go but it is reassuring that he can do it!  I also notice a maturity level really flourish lately. Three years old is just around the corner. His brain is figuring out another path to get the words out! It’s wonderful to watch….

Feel encouraged that it will happen for your child!  I wonder what the statistics really are about how many children diagnosed with apraxia actually never talk??? I believe odds are very low, with the right therapy and lot’s of hard work. I wish there was more research….Please pray for Luke. Friday is his first test. An EEG. Love, Jen

Psalm 46:10    “Be still, and know that I am God!”

Luke loved his sticker...elephant with big ears..so cute!

Yesterday Luke had to go to an Audiologist.  He had multiply ear infections from six months old until one and a half. At which point he actually had a ruptured ear drum and then had stationary tubes put in. It was about this time last year.  It’s been a full year since his last hearing test. The neuro recommended another hearing test at this point. I have to say to anyone considering tubes, it has been wonderful for Luke. He has had no ear infections since the tubes were put in. We were nervous about having it done, but it is such a simple procedure. Only took a few minutes. He was a little out of it after the anesthesia but within a couple hours of being home he was perfectly fine. And it has been so great, no ear infections, no unnecessary antibiotics, and most important no pain for Luke! Of course back then we were hoping all of Luke’s speech trouble would melt away after the tubes were in. Unfortunately that was not the case.   I had a quick thought walking in yesterday that maybe we would find out something was going on in his ears, we could fix it, and he would be on his way to full sentences. Not the case again. Seems everything is pretty much in normal range,  they will retest him again in a few weeks to double check. The Audiologist marveled at how well Luke tolerated all the testing. She said she never has two year olds that sit so quietly and make it through most of the test. I told her Luke has had so many test and people checking him out, he’s very used to it. He sat in the little sound booth with massive headphones on his ears and listened closely for her instructions. He amazed me. I  think he really knows people are trying to help him.  I wanted to bring this up because it is so important to rule out any hearing issues when it comes to speech problems.  Our Neurologist said it’s a very common cause of speech delay and other issues. Even a slight hearing interference can cause trouble.

Always worth checking and rechecking!

I suspected today would be a rough one. Day after Easter, the kids were up late. They spent all day shoving candy in their mouths. Luke started his Easter with marsh mellow peeps, ended with pie.  Each stop, more eggs,  more candy. I knew Monday we would all be movin’ slow. Especially me, not really in the mood to drive to Murrietta for Luke’s speech therapy.  But so it goes, I got the coffee, hooked up Luke’s DVD player,  we raced out the door, stopped and picked up Nana and off we went.  Well first we figured out my right blinker was not working by nearly killing ourselves several times and wondering what exactly was the problem here. Mostly me yelling at people when it was my own fault. They didn’t even know I was coming over!  So we figured out the light situation and drove oh maybe ten more miles going about seventy (the speed limit) down the freeway. Well all of a sudden at the consul area of my car there’s a huge Pop, Bang, then sparks and smoke! I’m serious, we nearly hit the deck. My mom bless her heart thought some one was shooting at us. Well now we look down and figured out my new phone charger just exploded and is now on fire. So my mom was thinking maybe to dump my coffee on it. I was thinking no, that may start an electrical fire.  I didn’t know if I touched it If I might get a zap. But we managed to get it unplugged. It smoked for a bit. All while Luke was happily watching Mickey Mouse and having his juice! The rest of the way  we tried to relax, we were fine and we had a few laughs about the crazy drives to Murrietta!  Well turns out Luke wasn’t really in the mood for therapy today either.  He’s been working  on the ee sound.  Like Po-ee for pony. Ha-ee for honey. Ba-ee for bunny (for Easter).  He’s been working very hard and it is a brand new sound. Add that with to many marsh mellow bunnies on Sunday. He was waving bye- bye five minutes into therapy. He cried and reached for me the way he used to when we first started. It wasn’t easy but I found the brave face and we all encouraged him to get through this last set of ee cards. Inside I just wanted to make the sounds for him.   He reluctantly made it through. It was difficult.  We made it home but stayed in the slow lane. I think my mom kissed the ground when I dropped her at home.  Later on this afternoon Luke was happy to have his brother and sister home from school.  The kids and I were playing in the back yard when Luke discovered a wonderful word that utilized  his newly found ee.  We all stopped when Luke called out   “Li-ee!”  The girl of his dreams,  Lily! The smile on his face, and the pride I saw in his eyes, knowing he got her name to come out so wonderfully. He practiced a dozen more times and we all clapped and cheered. It made me feel so happy for him!  The freeways, small explosions, and the brave face, all so worth it! Even though he’s young he already knows what his struggle is. This moment was very meaningful for Luke.  He caught a glimpse of how Kaufman cards, speech therapy and Miss Megan, all connected him to calling someone He loves!

Happy Belated Easter!

I’m sorry to say that in the past few weeks I have allowed my joy and purpose to be swept from under my feet.  Worry and fear finds a way to quickly fill the spot.  I just wanted to let you know that Luke is doing good. We are still just waiting for his first test in a couple weeks. Thank you to everyone who continues to pray for my son. Thank you for asking if everything is OK. Luke is a very happy little boy, with so much love to share. Today I found this video and read  about this amazing Father-son team. (www.teamhoyt.com) No doubt God had it in his plan for me to come across them.  It put everything into perspective! If you have four minutes please watch the video.  I know so many of you Apraxia mom’s are really struggling and hurting. I know that sometimes it feels like all your effort is in vain….IT’S NOT!

Just FYI….that’s 26.2 miles of running, 112 miles of bicycling, and 2.4 miles of swimming. Together they have climbed mountains, and once trekked 3,735 miles across America. Amazing!