Tuba News

Tuba is loving his first "job" this year. The above pic was taken at his job. He is still at the high school but now in a program to learn about and try out different jobs. At age 21 he will exit this program ready to work.

He is currently working at our school district headquarters. He LOVES it!! He shreds paper, stocks paper in the copy machine, cleans tables (okay...he doesn't like this task), and delivers interoffice mail. 

The employees all know Tuba and they love having him working at the office. It's a perfect job for him as he loves to socialize and feels comfortable in the environment. 

His class takes lots of community outings too. They shop for groceries and make their own lunches. Tuba really likes the grocery store and is quick to say, "EWWWW" to a food he's not fond of. 

His seizures have been much better. Thank you to everyone that prays for him! He has only had a large seizure about once a week or every other week....instead of several a day. So glad!! He does have a few small quick ones a day (they look like a startle and last only a second).

Tuba lost about 20 lbs. when the seizure activity increased and his meds had to increase. One of his meds was subsequently decreased. He has now regained most of the weight. He is always saying, "eat"and pointing at the fridge....a true teenager bottomless pit! 

Cam has decided to do some triathlons with Tuba! We already have the bike trailer to pull Tuba in and now Cam bought a special needs stroller. Cam runs and pushes Tuba! The man is crazy....and fit....and crazy. Tuba LOVES it and yells "faster, faster" at Cam. For the swim portion of the event Cam is going to pull Tuba in a raft that's tied to himself. They haven't tried that portion yet. 

A finally....a funny Tuba story. Tuba has a couple naughty words or phrases he says. It's really embarrassing because he says them VERY clearly. His favorite thing to say when he's mad...or just trying to get attention is "ass". Then if he's really worked up he likes to say "ass balls". Now, I'm DYING to even tell you this. I can assure you that nobody in our house goes around yelling, "ass balls" so he didn't get it for one of us.....Okay, maybe the ass part but not the two together. Ugh! He made up this little creation all on his own. If he's SUPER MAD he will string together "poopy ass ball". Oh.My.Word. I don't even know what to say to that. 

I will admit that secretly Cam and I laugh about the Ass Balls phrase. If one of us is having a bad day we will send a text saying Today is ASS BALLS!! It makes us laugh. I told my friends at book club about Tuba's phrase. They loved it. They all started saying it to their husbands...the husbands all started saying it too. For a surprise my book club had t-shirts made that have a donkey (ass) and a bunch of soccer, football, and basketballs on the front. I about died laughing! They totally "get" Tuba which made me get all teary.

So...the funny story part. At Tuba's IEP meeting his speech therapist and I were talking about ways to redirect and get him to stop saying his naughty words. She has been working with him to be polite....say excuse me, etc. 

The other day I was coming up from the basement with a  big basket of laundry. Tuba wanted to come down so he says to me, "MOVE!". I kindly told him that he needed to be polite. He responded so nicely with, "Excuse me". I was so thrilled and praised him. Then as he passed me he belted out, "ASS!!". Of course I couldn't laugh so I held it until I was in another room. Well, at least he got the polite part right. It's a work in progress.

That's my Tuba. He's a gem. He regularly comes to get me to look at the sunset. He's my built in sunset alarm clock. Love him!

Mama

Being a mom is the hardest job you will ever love. That is the best quote I've heard lately...or ever. It's true....being a mama is hard. It's physically hard and it's emotionally hard. But I love it. I wouldn't be doing anything else. I love it.

Having a child with medical and developmental issues is hard. So hard. I wouldn't change Tuba and the way he is but I would take the seizures away. 

The years that his seizures were really bad have scarred me. Deeply. I feel like I have PTSD. I do not say that lightly. I actually googled PTSD to see if what I experience could be considered PTSD. After reading a bit I don't think I actually have the clinical definition. But....I have scars. I have fears and they flare up sometimes. 

In the past year I have experienced a few times when I knew that I was overreacting. When faced with scheduling Tuba's MRI I freaked out. Rationally I knew that it was a bit silly to be so scared. I completely melted down. Crying....sobbing really. Then Cam slowly and calmly talks me "down from the edge". He is my rock. My piece of calm and sanity when I feel the wave of fear coming.

After my release of crying I mentally go through all the "worst case" scenarios I can come up with. Really not helpful but it's what my brain does. After that I soldier on. Basically I put a lid back on my jar of fears and move forward.

But the jar is always there. The fear is always with me. 

Tuba's hospital stay last week burst the lid off my "jar of fears", the one buried deep inside me. On the first day after Tuba got his head all wrapped up in gauze I leaned over and kissed him on his head. Whoosh! A huge wave of grief swept over me as I inhaled the scent of the gauze and tape. It took me right back to his previous in house EEG study. A very dark and frightening time when his seizures were out of control. He was having 50-100 seizures a day and we couldn't find any relief. 

Other things like the smell of the hand soap....the sound of the hospital door closing....the anxiety of waiting for the Dr. to come in on rounds....all of them triggers to my fear. I got teary quite a few times over the three days. I knew it wasn't because of what was happening at that moment but because of the things in the past.

On Wednesday when the Dr. told me that indeed Tuba was having seizures I crumbled. I had held a little glimmer of hope and excitement. Realistically I knew that he is still doing great. In fact the Dr. said those exact words. He IS doing so well.....especially when you look at the past. The VNS has been a miracle to stop the seizures. 

I think that I have so much grief stuffed down inside of me that I can only process it a bit at a time. When I'm scared it seeps out. After the Dr. left I texted Cam. I needed the voice of reason. He called me right away. He said all the right things. He told me that it is our fear of losing seizure control that drives our worry. I felt better but the damn has been cracked. 

I cried off and on all day after getting home. I was tired too which only makes it worse. I've gone through this enough times to know the alarm bells of fear would subside.

By the next day after a good night's sleep I did feel better. I had gotten the lid back on the jar one more time.

EEG Study

Tuba is done with his in hospital EEG Study. I've let a couple of days pass so that I could compose my thoughts.

For back history you can read more HERE about Tuba's past EEGs and his medical history.

At our recent visit to the neurologist she and I talked about some small "jerk" like motions that Tuba has. I have always thought they were seizures but the Dr. wanted to make sure. They could also be caused by Tuba's brain injury.

***Tuba has an anoxic brain injury. Basically his brain suffered lack of oxygen at some point in utero. Technically it could have been in utero, during birth or even as an infant. But, I know that his eyes showed signs from birth. Tuba's birth was normal and there are no standout reasons to think the injury happened during his birth....of course it could be but we don't know. In utero many different things could have caused this....an infection, a virus, the cord, an accident. I never had a fever while pregnant...I did have a bad cold. Other than that it was a healthy normal pregnancy. It's one of those "we will probably never know".

We actually used to think he had a brain malformation. That is what we were told after an MRI when he was an infant. He had a new MRI last year and the imaging data now is so much better. It was kind of a shock to get this new info. But, in the end it doesn't change anything about Tuba. Whether his brain malformed or it was damaged doesn't change who he is or how to treat his seizures.

Okay, back to the little "jerks" and the EEG. The Dr. wanted Tuba to come in hospital for a 5 day EEG. 5 days!!!!!! Since we had done a monitored EEG before I knew what to expect. I knew that we would have to be at the hospital with him the whole time. That means "divide and conquer"...that's what Cam and I call it when we split up the duties. But, Cam has to work....so....I knew we would need HELP!! I called in the Grandparents and friends.

It took some planning to set up help for 5 days. I would need to leave the house each morning at 5:30 a.m. to get to the hospital in time for Cam to go to work. Cam would spend the nights with Tuba.

Day 1: Last Monday Tuba checked in. Cam took Monday off work....in exchange for working Saturday. I took Tuba down in the morning. For the study he had to get leads glued to his head. Not normal EEG glue....it was some kind of nasty, stinky super glue. First they marked his head with red pencil then glued the leads and hen they dried it with an air gun. He HATED it!! It was so sad. He kept saying owie!! Super sad!

Cam came down on his motorcycle and I left to go home and pick up kids from school. Tuba settled into his room. He had to stay in the bed because the EEG is video and sound recorded too and that is where the camera is pointed. If the patient has a seizure you have to push a button that will time stamp the EEG feed. He could go to the bathroom...the EEG machine had a very long cord.

Day 2: Tuesday I got up early....4:30 a.m. What the heck!! Who gets up at that time?! Horrible terrible time to get out of bed. I kept Mr. P out of school so he could come see Tuba and also so I could have a carpool partner!

Tuba was.....a bit crabby....like a rattlesnake when we arrived. Yikes. Apparently sleeping with 29 electrodes on your head makes it hard to sleep. The EEG tech had to come and re-attach some of his leads. Oh joy! Not! He was miffed to say the least. While she was re-attaching the leads I saw him have a "jerk". I pushed the button and recorded what I saw.

When the Dr. came in on rounds that day she said she looked at the EEG and did not see a seizure. I was excited. Maybe those jerks weren't seizures. Maybe he could go off of some of his meds. She did say that his brain has lots of abnormal firing. We knew this from the EEG he had two years ago. So no surprise there. The firing happens on the left side of his brain and the temporal lobe.

Later that same day he and I were laying together on his bed having a nap. I NEVER nap unless I'm horribly sick or pregnant. I was neither of those things...apparently waking up at 4:30 a.m. makes me tired. Anyway, while napping with Tuba I felt a big jerk from him. I pushed the button and recorded notes on what I felt.

Day 3: On the next day he was a bit happier. I brought Moses with me. By now Tuba was really liking laying in bed all day. Can you say "lazy teenager"? Meals delivered on trays and all kinds of special attention. I started calling him Prince Tuba. He was REALLY milking the whole thing. He would have me straighten his blanket out and fix his pillow. Hilarious.

Again I saw another jerk and recorded it. When the Dr. came on rounds she told me that yes he was in fact having seizures. All of the times I pushed the button he did have a Myoclonic seizure. Plus he had one while he was sleeping during the night.

Ugh! I was so sad! I was bummed. The Dr. suggested upping his medication but I pleaded for an increase to his VNS instead. We have had WAY better success with the VNS than with meds. He had the VNS adjusted so we will see. We have to report back in one month.

We got discharged too! They had gotten the data that was needed. Thankfully we didn't have to stay 2 more days. We were all tired and DONE! Poor Cam was so tired from sleeping in a fold out chair and then going to work. I was tired from all the early mornings and late nights getting kids ready for bed. Plus the stress....and the traffic....oh!

Tuba was so happy (although it was painful) to get the junk off his head. When we left the hospital he waved at everyone on the street. He was ecstatic!

Overall the whole things went great! The kids were well cared for....actually they LOVED having different people coming every day. It was like Christmas! Tuba did great too. He was a real trooper. Cam is Superman! Seriously! After work on day 3 when he got home he mowed the lawn. The man has so much energy!

Me....I was fine too. Well actually a little...or a lot not okay. I'll write more tomorrow about that.

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.

Seizure Free

Tuba is seizure FREE!!!! I haven't seen any seizures for over a week. Such good news. I think the new seizure drug he is taking is making the difference...or the VNS started to work...I don't know...and won't know for sure. This can be frustrating to me...me who likes to know the whys of everything! It's an important reminder for me to put trust and faith in God and let go. I will enjoy this relief from the seizures. Thanks be to God.

Appointment Update

Tuba had his appointment today. The news is good....sort of. As I was telling his neurologist how his seizures have been really bad she was connecting to his VNS. They put a wand sort of instrument over his VNS (which is under the skin in his upper chest). It's a computer that tells them the ampage, frequency, etc. They are able to program and make changes to the VNS this way. Anyway...she looks up and says...it's not even barely on! HMMMM! I KNEW it hasn't been working right.

Way back when he first had the battery replaced they had told us it was turned all the way up...to the same ampage as before the battery died. Then at the next appointment they said it wasn't all the way up and they turned it up. I thought maybe someone had just messed up...or I had been confused. We have been in a couple of times since and had adjustments made...none having any good effect. At the last appointment they turned it to 2.5 and today it was at 0.5! NOT GOOD. So, there could be a couple of things happening here. The VNS comes with a magnet that you can use to swipe across the chest over the VNS during a prolonged seizure....or it can be used to turn off the VNS in cases of malfunction...by taping it over the VNS. From the readings taken today it appears that the VNS has been magnetically effected...and we haven't used the magnet on him except once.

The plan is to look for places in his environment where he could have come into contact with a strong magnet...anything within arm's reach of his chest. We did have the VNS magnet hanging on the front of the fridge. We are going back to Children's next week and at least once a week to see if the settings remain or if they change. We are also keeping Tuba out of the laundry room and away from the washer he loves so much. The door has a magnet closure...and he does spend a lot of time watching the bubbles go round. Bummer for him...as he loves to watch it.

I'll post later as we find out more....keep praying...I know that God was speaking to me about the VNS...I just knew it wasn't working right. For now it's turned back up to 2.0 and will hopefully decrease these seizures.

Just to make you laugh:

As Tuba and I were waiting for the appointment I was thinking how over all the years of visiting Children's Hospital I have met so many kind and happy employees. Only once have I ever encountered a crabby or rude person working there. That is amazing considering the hundreds and hundreds of people we have met and worked with over 12 years.

I started to giggle remembering the one cranky person! Tuba was being admitted for a 24 hour EEG. They were hooking the electrodes to his head and then to the EEG machine and we had to stay in one room the whole time with him being video taped and the EEG recording the seizures together. The gal who was hooking him up was REALLY crabby and short with us and Tuba. After she left the room Cam called her a name and commented on how rude she was. I agreed and then flinched as I realized we were being recorded and she was the one who would be viewing the tape!!! Oooops! :0

Poem

Cam's sister (most fun person in the world) wrote this poem about Tuba a couple of years ago. She sent it to Cam and I yesterday. Needless to say I was bawling and doing the "ugly cry"!


Tuba

Wet kisses
Sticky fingers
Easy grin
You have stolen my heart.
Grown men haven’t breached that fortress,
But with a crinkle of eye and a blossoming of round apple cheek
I became yours.


Here is Aunt Cinny with the boys last summer throwing rocks at the beach.

A Scattering of News

Sis continues to keep me busy chasing her around! Do you think she's "trying" to be helpful here in the dishwasher? It looks like she found something to nibble...Mmmm. She pulls the racks in and out slamming them loudly. I DO want/need a new dishwasher so maybe she is just helping me get one sooner.

Had a crazy time this week trying to figure out schedules for next year...kindergarten for Mr. P and pre-school for Busy Guy. We had planned to send Mr. P for full day K...but after I found out the tuition (you pay for the second half of the day) was $286.00 a month...we changed our mind. We will send him to 1/2 day for FREE:) Mr. P was bummed but then I told him he would get to have lunch with someone REALLY COOL...me of course! Busy Guy will go two days a week to pre-school. It will work out to do all the drop-off/pick-up of both boys at the same time. The schools are about 1/2 mile apart so that works well. Everyone will be home by noon for naptime....whooohooo.

Tuba's seizures have been terrible. We had two appointments last week to the neurologist. They made adjustments to the VNS and drew blood to check his med levels. He has been having a 10-20 second seizure about every 20 minutes...yes I said that correctly...that means about 70 seizures a day. We hold out hope and pray for them to once again subside. We are continually asked "what is the Doctor going to do?". There is no easy solution or the Dr. would have already fixed it. They can try different things and wait and see if it works. We see the top children's neurologists in the country and they are giving us the best treatment...it just isn't working. Cam and I are frustrated and scared. Keep praying for all of us.

And...on the light side of things...Cam and I are addicted to Facebook...so if we (you and I) aren't already friends on FB...then send me a invite. We have had a great time catching up with old friends and keeping up with family and friends around the country.

Tuba Update

Thanks to Renee for asking how Tuba is doing with his new VNS battery. Tuba's seizures are unfortunately not getting better. He is having about 10-15 a day now. We don't know why. He got the new battery and had a medication increase but it hasn't helped. We are hoping and praying they subside soon. We have seen this pattern over the years where the seizures go up and then go down and/or away and then up again. They are not as bad as past years and we hope to never go there again. When he was about 4 he was having 100 seizures a day. I will call and see if we can get into the neurologist soon and see what else they can offer. Keep praying for Tuba...and I'll keep you posted on his progress.