Song for Tuba

My beautiful friend Melissa wrote this comment on the post about Tuba. So lovely...I had to share it.

John Lennon song Beautiful Boy.

Close your eyes, Have no fear,
The monsters gone, He's on the run and your daddy's here,
Beautiful, Beautiful, beautiful, Beautiful Boy,
Before you go to sleep, Say a little prayer,
Every day in every way, It's getting better and better,
Beautiful, Beautiful, beautiful, Beautiful Boy,
Out on the ocean sailing away, I can hardly wait,
To see you to come of age, But I guess we'll both,
Just have to be patient, Yes it's a long way to go,
But in the meantime, Before you cross the street,
Take my hand, Life is just what happens to you,
While your busy making other plans,
Beautiful, Beautiful, beautiful, Beautiful Boy.

Darling, Darling, Darling Tuba.
He is a precious gift from God. I'm so thankful to know him.
Melissa

Thanks Melissa. Love you. XOXOXO.

Questions Answered

Warning: To Cam, my tender hearted hubby who lived this with me. This will dredge up painful memories and make you cry.

To my family and friends who lived this time with us and who always tell me that they can't read my blog while at work...here's your warning...you will cry so save this for when you are at home with the tissues.

Okay, now on to the writing. It was great to read comments and get emails from those of you that follow my blog. Thanks so much! I received some questions from a lovely woman named Carrie. So here's the answers to her questions. Thanks Carrie!

Can you tell me more about Tuba's diagnosis? What special needs does he have?

I am happy to share this information. Although this is probably WAY more than any of you want to know....here goes the long version. I thought for sure I had written this on my blog before but when I searched for it I couldn't find it. So, here goes. Tuba was a full term baby born healthy. I noticed in the first month or so that something was wrong with his eyes. His eyes would wander off to the side a lot and didn't seem to focus or track. I brought my concerns up to my husband, my family, and to my doctor. They all thought he was fine. There was a nagging inside me and I knew that something wasn't right. I believe that "mother's intuition" is the holy spirit speaking to you. As Tuba grew people (the rude kind who say everything that they think...strangers or people you don't know well) began to make comments about his eyes. It was as if he was looking at you from corners of his eyes. He would turn his head to the side and look out the corners of his eyes at you. He was meeting his milestones but with each milestone they seem to come a bit later than the average. Of course, I was a new mommy and had all my "Everything You Need To Know" books and was concerned.

At about 8 mos. of age my doctor tested Tuba's ability to track with his eyes during a well child visit. Finally, he saw what I saw. Our Dr. sent us to see the Opthamalogist. Tuba was examined. The Dr. told us that Tuba's vision was fine but that they thought he may have a brain tumor. Whoa! We were in shock. We immediately went to have a CAT scan. The results of the test showed he did not (thankfully) have a brain tumor. That was the good news. The bad news was that the CAT scan showed abnormalities in the structure of Tuba's brain.

Next we were referred to a neurologist to have an MRI. The MRI gave a more in depth picture of his brain. The MRI showed that Tuba had Agenesis of the Corpus Collosum with Enlarged Ventricles. Basically, this is a malformation of the brain that occurred in utero. For years I stressed and worried that I did something to cause this. Did I breathe a chemical, did I get sick with a virus, was I exposed to a toxin? Maybe, but we'll never know the answer to that question. I've made peace with this by now. I know that Tuba's brain is the way it is and I didn't do anything to cause it.

Around this time Tuba was also having episodes where he would get all flush and lethargic and a couple of times I found him lying face down on the floor. I explained this to the neurologist and he suspected seizures so we went off to have an EEG. The EEG confirmed he was indeed having seizures. Now all of these appointments and tests took some time so by now Tuba was about 10 or 11 months old. The EEG showed seizure activity coming from all areas of his brain (which ruled him out as a candidate for surgery) and showed abnormal activity during sleep and awake time. His brain was mis-firing all day and night long.

Okay....side note...this was such a stressful time. Just writing it is giving me a stress attack and I had to stop and shed some tears. This time was off the charts scary and the unknown was terrifying. Each time we went to see the Neurologist it was more bad news. It would have been better to know everything at once instead of having the bad news spread out of months and years. Of course it can't happened that way but I think it would have been easier.

Tuba was started on anti-seizure medication and referred to speech and physical therapy. We had a Birth-3 Educator come to our home twice a week to work with him as well as weekly appointments to the therapists. We learned that Tuba needed to work hard to make connections in his brain. We were willing to work hard and we did.

Tuba was also allergic to wheat, egg and dairy and was suffering from severe, and mean SEVERE constipation. Thankfully all of these are now gone. Kids who have neurological issues often have constipation. Tuba had low muscle tone which also effects peristolic action...which is muscles. By 12 mos. old Tuba wasn't crawling. He could sit up but couldn't get into a sitting position on his own. When he did learn to crawl....man did he GO! He loved going to his therapies and was always such a happy content baby. He loved to sing and be rocked hours a day. At that time he was the only grandchild and he was doted on by grandparents and Aunties galore:)

This picture was taken during a 24 hour EEG on the Children's hospital. Tuba was hooked up to all the electrodes and hooked to the machine. We had to stay in the room for the whole 24 hours. Each time he had a seizure we pushed a button that would take video of him. Then the Dr.'s looked at the EEG tape along with the video tape. That was a LONG 24 hours for a busy little boy.

We saw the specialists in the Genetics Department and had MANY tests to see if Tuba had a genetic disorder. He was tested for Fragile X, Angleman's Syndrome, and LOTS of brain diseases that I can't remember the names of. Cam and I even had testing and had our skin looked at with a black light. Many of the things Tuba was tested for are fatal diseases. I learned to NOT read everything on the Internet....after doing it too many times. Often the results of these tests took over a month to come back. After extensive testing the clinic gave us the go-ahead to have another baby. They said some day a new disease could be discovered but they could not find any genetic disorder that Tuba had.

Over the course of the next few years the seizures got worse and worse and more medication was added. Tuba continued therapy and when he turned three he started pre-school and received his therapies at the school. Tuba took his first steps at age two. By age 3 he was still crawling about 80% of the time. The staff at his school has fond memories of Tuba speed crawling down the hall and hooting his hellos to everyone. I think around age 4 he walking most of the time....I'm not sure though. I know that I stopped carrying him around when I got pregnant with Mr. P...and Tuba was 6 at that time. :) It was just quicker and safer to carry him. Plus he was really tiny.

Yes, he was tiny. He was 6 and weighed 38 lbs. He had weighed 38 lbs. for 2 years and would for another year. Tuba was on a special diet called The Ketogenic Diet. This is a medically managed diet to treat seizures. Tuba was given enough calories to sustain life but not growth. It sounds terrible and it was. The diet consists of high fat, low carbohydrate and each meal has to be weighed on a gram scale. Every morsel must be consumed and you cannot have more. Ever. Even eating a bite of a chip could send the child into seizures. The diet is sort of like the Atkins diet...but to the EXTREME! It was as horrible as it sounds. But, Tuba was having about 100 seizures a day. He was falling and banging himself, getting stitches, and he was in a fog. A seizure fog and a medication fog. The good news was within 2 days of starting the diet the seizures stopped cold. Tuba had to be hospitalized for 5 days to initiate the diet. After a few weeks on the diet he didn't feel hungry. The first 9 months he was seizure free. Then they started again. They stopped again for another 10 mos. or so and then started again. The best thing was the times he wasn't having seizures he was so clear. It was as if the world around him opened up. He gained so many new skills.

After three years on the diet it was no longer working and he needed to come off of it. The same week we brought Mr. P home from the hospital we ended the diet. A child only has a certain amount of time for their growth plates to grow and it was time for Tuba to grow. MAN did he love food once he want off the Keto diet....and grow he did!

The seizures came and went and then increased unstoppable again to around 100 seizures a day. So at age 7 he had a Vagus Nerve Stimulator implanted. It sends an electric current up the Vagus Nerve and helps with many afflictions including seizures. He has had excellent success with it until the battery up and died last year. His seizures are still far better than they used to be. He currently takes three kinds of anti-seizure medications plus has the VNS. We continue to pray that the seizures will get better and go away once and for all. :) :) :)

So, that was the very long version of what Tuba's diagnosis is. The short version is he is developmentally disabled and has epilepsy. He is a 13 year old boy who is developmentally a toddler in most ways. He has excellent receptive communication...he understands everything you say to him. His expressive communication continues to improve. He has over 100 words that he uses and many small sentences. Physically he does great. He does have a wide gait but he is fast....that boy loves to run and ride his trike. He is sweet and loves kids and people. He loves God and LOVES, LOVES, LOVES church. He loves music and water and the beach. He is a treasure. After writing all of this I'm sad his baby days went so fast. Good thing he still likes to sit on our laps and be sung to.

More Boots

We have another little person obsessed with boots. BG got these cute cowboy boots handed down to him from some friends. He is in LOVE with them. He did not/would not take them off for three days in a row. Bath time was full of crying until he could get out and put them back on. He wore them all day in the house...breaking the no shoes in the house rule. But it was better than hearing him cry.He wore them with his pj's...even the kind with feet. I had to smush his feet into the boots.

And...he wore them to bed. I thought for sure he'd take them off during the night. Nope, he slept quite well with his boots on. :)

Tuba

I had Tuba's IEP meeting today. It went well and he is meeting his goals really well. He is super good at matching. He matches numbers 0-20 and all of the alphabet as well as words and pictures too. He is putting picture stories in the correct order...AND...he is correctly answering questions after having a story read to him. This is really amazing. His teacher will read him a story and then use questions from the AR system to test him. He blew her away by answering questions at grade level!!!!!!!!!!!!!!!!!!!!!! Amazing!!!!!!! Love to be shocked and amazed at his progress. :)

Tuba will be going to HIGH SCHOOL next year. Ohhhhhhhhhhhhhhh....can you hear my stomach acid churning? I'm really nervous and feeling kinda sick about it. It's all new, new teachers, new building, new program, etc. UGH! Most parents are nervous about their kids going to high school but take into consideration that Tuba cannot tell me about his day and he cannot protect himself. The acid is churning! We will go to a transition meeting soon and meet the new team and see the building. I hope it helps me feel better....I hope.

I've been thinking lately about Tuba and what the future holds for him. Of course I'm stressing about what he will do when he's done with school. Kids with special needs get to stay in school until they are 21. And then....it's the big unknown. Of course by then we will have a plan. But, right now it just seems so....unknown. We know he will stay at home and live with us....forever. The big questions are will he participate in a "work" situation. Hmmmm....it's too far out to know. On a funny note I realized that when Tuba is done with school Baby George will be in 1st grade. Sheeeesh! I guess Tuba can be my co-pilot driving kids to school and sports.

On the medical front the seizures have been okay. I see about 1 a week or some weeks more and other weeks less. We just increased one of his meds and we'll see if that helps. I took Tuba to the dentist last week. He sees the special dental clinic at our local Children's Hospital. He was terrible, horrible, rotten! Really bad. On top of refusing to open his mouth he hit me, spit on me and bit me! Not fun!!! So....the plan is to bring him back in a couple of weeks and they will be wrapping him in a blanket (called the burrito) to hold his arms down and then have two assistants hold his head while they use a special water tool to clean his teeth. It sounds a bit torturous...but I assure you it is necessary. It's really hard to brush his teeth and they need a good cleaning. STAT!

Overall he is such a good boy, such a nice loving brother and son. He is tender hearted and loves God. He is still singing all of the hymns from Pascha. He is doing really well in school too. He is also taking private swim lessons and is of course loving it! Tuba loves to swim. I heard the high school kids get to go to the pool once a week. That is very exciting. Something to look forward to, something to calm my churning stomach.

Love my sweet Tuba. Love him!

Kissable

Yesterday morning I was laying in bed about 6:00 am (after a very sleepless night...which is another blog topic). I was cold and tired and was laying with my eyes closed trying to get warm. Sis was up (and had been up for hours...yes, part of that other story) as were the big boys. Mr. P came running into my room and yelled, "MOM, look what Sis is doing!". OH! I knew it wouldn't be good. I opened my eyes to see Mr. P holding my lipstick tube. "And...she did stuff to Tuba too", he added. Great! I drug myself out of bed and went off to find Sis...and Tuba. This is what I found! What a hoot! Other than smashing the end of my fairly new lipstick...I think she did a pretty good job on herself:) I had visions of her painting Tuba all over with the lipstick but instead I was happy to see she had merely kissed him. Awwww, very sweet. It was one of those, "NO! Don't do that"...but hold still for the camera moments.

Who's there?

One month ago I put a blog hit counter on my page. I was curious how many followers my blog had out there. Well...I've had 1,566 hits or about 50 visits a day. Great! I'd love to know who you are. If you've never left me a comment, please do. I so appreciate the comments I get. If you don't want to register and leave a comment you can shoot me an email at camandbeck@hotmail.com. Also, I'd love to know if there is anything you'd like to ask me or something you'd like to see on my blog. Send me your questions and ideas.

Sunshine

I'm sitting here in bed at 8:22 at night. I have the window open and I can hear birds chirping in the trees outside. I love this sound. It reminds me of Hawaii. Every morning we were up early as the sun was coming up and the birds were waking up. They were chirping away and it was such a lovely sound. Yesterday we were out in the yard and one of the kids said "mom, it sounds like Hawaii", when they heard the birds...or "little birdies" as we call them.
The sun has been out the last two days. Nice, nice, nice! I took the kids to the playground at Mr. P's school both days. I love to sit and soak up the sun. It's amazing how much happier and relaxed I feel when it's sunny...and warm...and the kids all run around and play....OUTSIDE! Whoohooooo! In our neck of the woods fall and winter and even spring can be long and dark and cold and rainy so we realllllllllllly appreciate it when the sun comes out and it warms up and the days grow long.
I'm looking forward to more days like today. I cleaned the kitchen after dinner while the kids ran around the backyard. It was so easy to clean without little ones...and not so little ones running under my feet. I love to listen to them play and look out the window and see them having fun. Summer is coming fast. Only about 4o school days left. Then the kids will be out playing all summer long. Cam will be gone. Well, he will be home one day a week. He will have four days of clinical and two 12 hour shifts at work. UGH! I'm hoping for a very warm nice summer...and the kids and I can just play and lounge about, ticking off the days until Cam/Daddy is DONE! I'm very glad that last rigorous quarter will be in the sunshine months and not during the wet cold and dark months. Sunshine makes me happy and gives me the energy I need to make it through to the end. Come on sunny weather....I need ya:)

Mr. Song

Here is my funny boy. He was playing and stopped to tell me he was a police man with a police dog.

Busy Guy loves music. He sings all the time and knows more song lyrics than any of us...well, except Cam. Today in the car he was singing Queen's We Will Rock You. The lyrics go:

You got mud on your face
You big disgrace
Somebody better put you back in your place
We will we will rock you

Busy Guy was singing:

You've got mud on your face.

You've got slime in your hair.

You've got cob webs on your face.

You're a BIG disgrace.

We will, we will, ROCK YOU!

I laughed so hard I cried off all my mascara. Then we saw this lady walking down the street...and yes, she was dressed a bit odd. Busy Guy looks out the window and says, "Wow, she's a character!". It was a good endorphin release. I love how my kids make me laugh.

Bucket List

I've been thinking about my Bucket List...you know the list of things you want to do in your life. I thought I should write it all down. Here's what I've been thinking of....

See the Grand Canyon-

We are going to AZ this fall. Yeah! My SIL is getting married in Flagstaff and we will of course go to the Grand Canyon. So excited:)

Go on a mission trip-

I have had this on my heart a lot lately. God is speaking to my heart. I'd like to put together a group of women to go to Ethiopia. I'm hoping to get working on this as soon as Cam is done with school. So, all you wonderful lady friends of mine....start thinking about this too. :)

Go to Ethiopia with my kids and hubby.

Someday we will take our whole family and tour Ethiopia. We want them all to see it and I want to see it with them. Cam and I have each been but not together.

Take a photography class. I love photography. It's my favorite art form. From the looks of the photo on this post...perhaps Cam should take that class with me? The ceiling is nice but I think Busy Guy's face is much cuter. ;)

Take a surfing lesson...in Hawaii of course.

The Big Island is calling my name. I want to see the volcano and all the vastly different areas of the island. Of course I want to lounge on the beach and have a pina colada too. Yummy! And, I want to worship with the Schroedels at their parish. If we can't move to the Big Island I can certainly vacation there as much as possible.

Visit an Amish community.

I am so fascinated by the Amish. I love the simple way they live and of course love the quilts.

Have a big get together with other families whose babies were at Wanna House (orphanage in Ethiopia) at the same time our babies were there.

We think of those children as our kids' Ethiopian cousins. Our kids spent the first 6 mos. of their lives at Wanna House with many other babies/toddlers. I hope some day to meet in person some of these kids and their families.

Learn to make cinnamon rolls....really good ones...gooey sticky ones...no frosting just goo and nuts. Mmmmmmm.

Grow a garden and raise chickens.

I can't wait to learn how to do these things. The country life is the change we want to make. If only our house would sell.....come on housing market.

Tulips

On Friday we went to visit the tulip fields. It was a beautiful sunny day...cold but sunny. Most of the kids' spring break was cold and rainy and this was a much needed get out of the house day.
Everyone was excited to put on boots for our fun trip. The sunshine was so lovely and the muddy fields were mostly dry. There were still some puddles and muddy areas where of course everyone wanted to try out their boots! This means running through, splashing in, and jumping into! We saw a few kids who were covered from head to toe in mud from slipping and falling. Yikes!
This picture cracks me up. They look like a bunch of nuts and crabs. Smile everyone. :) We had such a fun time...really, we did. Look at the new dusting of snow on the distant hills. So beautiful with the bright flowers below the snow. We do live in a beautiful place.

Move Over

Okay, so really all we need is a 2 bedroom house. Cam and I can have a room and all the kids can share one. We'll put a king size bed in there for them. :) Or, just let them sleep on the floor in a big heap!

Really they each have their own bed. After moving Busy Guy back to his own bed I found him squished in with his brothers again. Poor Tuba. He gets moved to the edge of his own bed. He loves it!

House

I feel like the old woman who lived in a shoe. Kids everywhere, toys everywhere, chaos. Okay, not really, not all the time anyway. But I would like to move and have at least one more bedroom...but our house is not selling. The housing market is stinky!!!! Basically our realtor told us that we should come off the market until the situation improves. The market is flooded with short sales, bank owned properties and people desperate to sell. This means lots of super cheap under-priced real estate. We just can't compete with them. So, I think we are stuck here until all those properties are gone. It could be 6 mos., it could be longer. Oh!

Well, I'm not all gloom and doom about it. We have a beautiful, warm, lovely, home to live in. Yes, I'd like more space and especially in the middle of the night when Sis is hollering and waking up her roommate/brother I'd like another bedroom. But, I love my kids' schools and love many things about where we live. And, I think about Cam's wise words, "it doesn't matter how much square footage we have...the kids will all be playing within 2 ft. of us". Ha-ha...and so true. No matter where we go in the house...here comes 5 little kids and all their toys/noise right behind us. I guess they love us:) I know we are where God wants us to be right now. And, when he wants us to move...it will happen.

Cam will be finished with school in Aug. Two more quarters!!!!!!!! Yeah!!! He is figuring out where he'd like to work, etc. Our dream of Hawaii and an adventure isn't dead. But, so far no job opportunities have presented themselves...AND our house would have to be sold in order to move. Hmpf!

For now, we are here, and that is fine....even if I feel like the Old Woman Who Lived In A Shoe. She does look happy...and I have much better fashion sense than her!!!

Holy Week

Christ Is Risen! Indeed He Is Risen!

Last year we took a family photo on Holy Friday and I thought it would be a good tradition. Go here to see how much everyone has grown.
Holy Friday Lamentations Service. The boys did such a nice job holding their candles.

Holy Saturday morning.

My new Easter coat! The weather is terrible...rainy, windy and freezing cold. So...I got a new coat:) Love it!

My sweet boys are spiffed up and ready for the Pascha service to begin.

Photo opportunity. Sis is in pj's since it's 10:00 pm and she will soon go downstairs and go to bed. We set up portable cribs in a Sunday School room and then take turns sitting downstairs with them.

Baby George at the Children's Festival on Sunday. So much fun!!!

We had a wonderful and very busy Holy Week and Pascha (Easter). Today I'm sitting at home in my sweats and relaxing. Well actually, trying to catch up with laundry and getting the house back in order too.

Holy Week is Tuba's favorite week of the whole year. It's his Christmas times 1000! Tuba attended all 14 services during Holy Week. Yes, that's 14 in one week! And..he loved every minute of it. It was a long and hard week for Cam and I. Holding toddlers, chasing toddlers, entertaining toddlers in so many services can be challenging. Some of the services I stayed home with the little ones. But in spite of it being hard and my back being sore I have many wonderful memories from the week. Here's my list of Holy Week favorites:

Kissing the icons with Sis.

Baby George shouting, "Jesus Owie!!!!!!!!!!!!!!!" when he saw Jesus on the cross.

Busy Guy sleeping on the floor Holy Friday night.

Tuba standing holding his candle.

Mr. P telling me that he loves Holy Week and most of all loves Pascha.

Hearing Busy Guy recount the story of Jesus' crucifixion.

Tuba rocking out and "banging his head" to Christ Is Risen From The Dead. Next year I vow to get a video. It's everyone's favorite!

Baby George pointing to our friend Mary in the choir and calling out to her, "Mar, Mar" so she would come hold him.

Mr. P standing and staying awake the whole Pascha service this year. He's getting so big! He was so determined and so proud. The service starts at 10:00 pm and finishes up around 1:00 am. Then we head downstairs to celebrate and break bread...or should I say meat and cheese after the long fast. He stayed up for the whole thing!

Seeing my kids all be anointed with Holy Oil at the Unction Service.

Hearing Tuba sing all of the Holy Week hymns all day long....every day...all the way to church...and all the way home.

Getting to stand in the Pascha service and hold my hubby's hand...thanks to our friend Teri who took turns with us watching the little ones. Thanks Teri!!!

Jumping in the bouncy house at the children's festival with my girlfriends. The kids were SO excited to have a bunch of mommies in there with them. Too fun! And...I've been laughing all day since one of the husbands claimed we gave new meaning to the term "bouncy house". LOL. Is he trying to say we jiggled???

Drinking lemon drops on Pascha. Yummy!

Another Pascha done and gone. Such an intense week following an intense Lenten season. Loved it all.

Christ Is Risen! Indeed He Is Risen!