Thursday, April 22, 2010

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's your 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 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 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.


  1. crying too hard to type, but wanted to send hugs.

  2. I am not sure how you got through writing that post.
    You and your family is such a blessing. And I know in my heart of hearts that Tuba touches the heart of everyone he meets.
    Thanks for your courage to write and share.

  3. Thank you for taking the heart to put it down for everyone. Reading it can't compare to the living of it. Love you forever.

  4. Again your family is amazing - I love Tuba and was bawling my eyes out. Thanks for sharing.

  5. beattles song i thought of after reading your post:
    Close your eyes,
    Have no fear,
    The monsters gone,
    He's on the run and your daddy's here,
    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 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 Boy,

    Darling tuba. he is a precious gift from God. I'm so thankful to know him.

  6. Thank you so much for sharing after I asked. I can see how hard this must have been to type up. What a journey you guys have been on with your oldest boy. I am humbled to read about it but very encouraged by your continued faith and positive attitude and by Tuba's bravery and obvious sunny spirit. I may email you again off-blog to ask a few more things since I see a few similarities with our daughter (who also has SNs).

    God bless you and your hubby and continue to bless Tuba too!! He is still made in God's image, even with his special needs. :-) (as I know you know too)


  7. thanks for sharing about tuba's needs. what a journey for your family. love how your strong faith is also in your sweet son.

  8. I cry every year when I reread this. I loved watching Tuba when he was little and you were in school, I miss those times, he's so sweet! I'm sad in my heart for all you and Cam have gone through, the waiting and not knowing, the hospital stays, the Ketogenic Diet, and all the rest. Tuba is a HUGE blessing from God!!! Can he stay with me the last weekend in July?



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