Tuba

I thought I'd write an end of the year recap for each kid. Lots to share!

Tuba worked all year at the school district headquarters. He worked in the offices delivering mail, shredding, putting paper into copiers, and wiping tables. He loved it...and they loved him!! It was a good fit for him because he loves the social aspect and the positive feedback from the wonderful staff. On the last day the staff had a party for Tuba and the other two students.

Lucky for all of us Tuba was able to catch an extra hour and 1/2 of sleep this year. Not having to get up so early helped his grumpy morning disposition improve. And...his new aide was wonderful!! They worked great together. He would fling open the door every morning when she arrived and yell, "TI-NA"!! Loudly! This cute pic is of Tuba and his good buddy on the bus. She is graduating the job program and Tuba is going to miss her friendship.

Tuba's seizures had their ups and downs this year but right now they are good. I see a few small 1 sec. "jerks" about once a day. I see a big seizure about every 4 or 5 weeks. Much better that the fall when we were seeing several big bad ones daily.

Tuba is stillllllll growing. He's huge! 5'10...or 11 and weighs 143 lbs. And size 12 shoe.

Summer can be long and hard for Tuba. He gets bored and is too sedentary. We have him in swimming twice a week and we are having him go for frequent walks. He tends to want to sit....I call him grumpy old man. I inquired about a trampoline for him but his neurologist said no. It's too dangerous for his VNS leads. So, I'm working on other activities to stimulate him and keep him busy and active.

Tuba is looking forward to beach days, and swimming, and bonfires....FIRE, FIRE, FIRE!!

Dancing Boy

This handsome guy went to his prom. He knew it was coming up and was really excited!! He kept saying, "shoes" and pointing at his feet. He knows he gets some new clothes for the big dance. 

I bought him two shirts and bow ties and let him choose which he wanted to wear. He LOVED his blue shirt and fun tie. 

He also got a new haircut. After years of keeping his hair really short I've been letting the top grow out. He is much better about letting me fix it now and it looks SUPER cute!! He goes around pointing at his head and showing off the new do!

He had a fantastic time dancing the night away!

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!

Tuba Update

I'm going to write a bit about each kid and what they have been up to. I'll start with my sweet Tuba.

He transitioned this year into the job training program. Three days a week he goes on the DART bus to the CRC (Community Resource Center)...which is the school district headquarters. He delivers interoffice mail, shreds paper, puts paper into photo copy machines and wipes tables. He LOVES it!! He adores the people in the offices and the staff adores him. The rest of his time at school is spent learning and going on other community outings.

Tuba's got money to spend!! I finally got his SSI and Medicaid application done and he is all approved. We also finished his guardianship. Phew! So glad those things are done and set up for him. Tuba and I are going shopping soon for some new shoes (he loves shoes).

Tuba has a new aide working with him this year. He previous aide, Anne (the most amazing woman ever) moved to CA. We were very worried about who the district would hire but they did great. Tuba misses Anne a ton but we will go visit her this year. 

Most everything is going so well for Tuba....except the seizures are back and they have been terrible. They started out happening about once a week and now we see at least one a day. Poor guy. The Dr. has increased his meds and between that and the seizures he just doesn't feel so great. Say some prayers for him. Light some candles for his healing.

A funny Tuba story. He was on the school bus and all was quiet except for the radio playing. An advertisement came on. The ad asked, "have you been trying unsuccessfully to become pregnant?". Tuba said, "No!". Hilarious. The bus driver and his aide were dying laughing. Tuba has great timing. 

Tuba is everyone's biggest cheerleader. He goes to all the kids' activities and games and cheers for them. He listens as they play piano and tells them good job or nice! He tells me I look nice or pretty. He jumps around and hollers excitedly when Cam comes home. He listens to all of us. He doesn't miss a thing. If one of us is sad he knows and gives comfort. He is a such a sweet and tender soul. He is loved by all of us and everyone he meets. I'm so lucky to have him for my son. 

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.

Thankful

Thank you everyone for your faithful prayers for our sweet Tuba. Each and every comment, phone call and text to me was so helpful. Thank you for your love and kindness.

Things are going well! We saw the neurosurgeon today and he agreed that Tuba needs the battery changed right away. Yeah!! I didn't have to beg, cry, or freak out. Bonus. Believe me this morning I was wondering which of these strategies would make the biggest impact. Thankfully none of them were needed.

Surgery will be this Friday at noon. This is great for so many reasons. 1. It's very soon, 2. Cam is already off work so won't miss any more days, 3. We will have lots of left overs and can come home to food already made, 4. Tuba won't miss any school and will have a long weekend to recover. So Thankful!

There's so much to give thanks for. Cam's dad came over to our house the other night and gave us a HUGE check to pay our medical debt. Whoa! At first Cam tried protesting and then Keith argued back. This all made me so nervous I fled to the kitchen and shoveled snicker doodle cookies into my mouth. We are so thankful and humbled by this generous gift.

On the drive home from the Children's hospital today I was thanking God and spending some time praying for others.

I'm thankful for my kids. The fact that three of them have needed surgery this year is reason to be thankful too. They were relatively easy day surgeries. We have insurance. We have access to good medical care. We live within 30 miles of a top class pediatric hospital. The mom I met today who was crabby. Her child is very sick and they are from another state living at Ronald McDonald House. I'm thankful that we have a car. We get to drive on beautiful freeways (anyone who has ever traveled in the third world know the beauty of this), We have Grandma Sue living 3 blocks away and always willing to watch kids, My husband, so thankful for him. He is working extra long day today and then is willing to go pick up Tuba's prescriptions tonight on his way home so that I could come home and make pies. I'm thankfully at home now in cozy flannel pj pants....cooking and enjoying life.

I have so much to be thankful for. Thank you again to my family and friends for your loyal support and prayers. Have a blessed Thanksgiving.

Crumbs

Today I cleaned the tray out from the toaster...and cleaned all the crumbs out from underneath it too. Then I moved everything off the counter and cleaned it sparkly. Then the backslash too. This is what I do when I'm stressed. It calms my nerves to clean and straighten. Now, each time I walk into my kitchen I feel a little ahhhhhh. That little ahhhhh soothes my nerves.

Back in 2008 THIS happened. And...it's happened again. That's the reason for my stress. And more.

You see this year has been a very expensive year for us. Mr. P has this ongoing allergy issue causing his eyes to be flaming red and weepy (I'll have to write more on this later). He has seen numerous Doctors....allergist X 2, ENT X 2, pediatric ophthalmologist, and had his tonsils out. That has left us with over $1,000 in medical bills. Sis just had her hernia repair. $800 and counting. Now Tuba needs surgery to replace the battery in his VNS. $$$

That's only part of the stress. The REAL stress for me is a deep worry. I'm afraid we will lose the good control Tuba has had over those nasty seizures. There have been years when Tuba had 100's of seizures a day. That's not a mis-type. Yep 100 + a day....for months on end. Catastrophic.

In 2008 when his battery up and died (which it's not supposed to do) he went from being mostly seizure free to having 10-15 a day. And...it didn't get better for over six months. That's where my fear comes from.

Last week Tuba's teacher mentioned that she has been seeing more seizures. Hmmm...we had noticed more too. Instead of 1 or 2 small ones we had seen double that and they were stronger. I called up the neurologist and took him in yesterday. As soon as they checked his VNS my heart began to beat wildly. An error message saying that the battery isn't working at full capacity. Not again!!! Yes, again. So, they have no idea how much longer the battery will function...if it's working right at all.

I've done this before and I know that it will take weeks....WEEKS....to get the surgery scheduled to change the battery. This makes me panic. I begged for the soonest available appointment. Next Wed. we see the neurosurgeon. Then they will schedule the actual surgery. Panic is setting in again.

Please, please, please God don't let Tuba get worse. Pray for my sweet boy. Pray for me and my panicking self. Pray for Cam too. He feels all the stress of this, the worry for his boy, the bills stacking up, the days he's missed work to be with kids having surgery, AND his panicking wife.

I'm better today than I was yesterday. Yesterday I cried. I asked my friends and family for support and prayer. Then Cam built me a fire and I sat in front of it with him. My calming rock. Today I cleaned crumbs and counters, glued a broken dresser drawer, scrubbed spots off the floor, did the bills, about 5 loads of laundry, and made soup and bread sticks for dinner. I do feel better. When I'm cleaning I pray and it calms me.

Tonight we will enjoy our soup and each other. I'll cross one more day off the calendar. One day closer to getting the new battery.
 

Holy God...

Tuba loves God. He loves church more than ANY place on Earth. He could stay all day...or multiple days:) He loves the choir music and loves to watch the priest. He knows all the priest's next moves and often calls them out ahead of time. He has been singing Holy God, Holy Mighty, Holy Immortal, Have Mercy On Us. We first heard him singing it while he was lying in bed at night. So precious! It makes my heart so happy to hear him sing. Tuba doesn't have a ton of language but he does say enough things that we (his family) know what he is saying. He continues to add words and phrases all the time. He loves to sing! Here he is singing for you. Baby George is in the background talking too...sorry...it's hard to get just a single kid on the video at once;)

Check-Up for Tuba

Tuba on the first day of school....8th grade!

I took Tuba yesterday to see his Neurologist. It was a good check-up. The doctor was thrilled that his seizures have subsided and we are only seeing about 1 a week. Much improved! We had a lovely time in the car...just the two of us:) We got to hold hands and chew gum and listen to the radio. My awesome MIL (SuperMIL) came to save the day and watched the other kids. She sang/danced/marched/and read her way through 4 hours...and now has a sore shoulder. The hazards of the job!

We have gotten our travel dates and itinerary from Make A Wish and we are getting EXCITED!!! We are going to Maui for 5 days of POOL time!!!!!! It's hard to talk to Tuba about it since he thinks it's going to happen right now. He goes around asking, "Pool, pool?". Yeah buddy, only about 100 more days:)

This just cracked me up. Of course brother and sister had to get in on the photo too:)

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.

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.

Catch Up

We have had a busy time around our house. Cam's Grandpa died on Saturday. He was a wonderful man and we will miss him dearly. Cam was able to be at the hospital to see him and stay until he went. Cam, his mom, his aunt, and his grandma stood around grandpa, holding hands and singing hymns. Grandpa was mouthing the words. How beautiful. It was a peaceful death.

Tuba has had a couple of good days at school. He is still having the same amount of seizures and some bad behavior too but we are continually hopeful and prayerful.

We are getting ready for Thanksgiving. I have groceries coming today and will start getting things ready. If I start today I might be ready by Thursday!

Mr. P is home sick from school. The babies are boogy nosed...ewwww...and coughing. Mr. P and I too have a sore throat, cough and general blah.

I ordered a chair for the living room. Thanks to all who voted. It was a landslide vote for the cozy chair. I ended up ordering one very similar in a nice soft brown fabric. It will be here in 6-10 weeks. That will be my b-day and Christmas present. I'm thrilled and hubby is off the hook for shopping.

Here's a video of Sis doing some of her tricks. Melt my heart!

Not Again

Tuba is not doing well. His seizures have escalated. He's having (or we are seeing) about 5-10 a day. The worst part is what they do to his personality. He is crabby, cranky, moody, fussy, and just downright mean. He has been having trouble at school melting down. He screams, hits, tries to bite and is scaring the other kids. NOT GOOD. Cam and I are so sad and frustrated. We have been down this road before and don't want to do it again. We will be going back into the neurologist's office soon but I doubt they will have any solutions. The VNS should start working for him again and the med increase too but....when? I'm so sad. It brings up extra fears that I push down and forget about when he is having good seizure control. Pray for Tuba and for his Mama and Papa.

Tuba...

..is doing well. He was pretty nauseated after surgery and threw up a lot. He recovered well at home on Friday. By the end of the day you wouldn't even know he had surgery that day. When you ask him where his "owie" is at he looks all over his body and then sort of shrugs. The kid has an amazingly high pain tolerance. He has an incision about 4 in. long with 18 big stitches in it and he isn't bothered a bit. I just took the bandage off and put antibiotic ointment on it and a new bandage. YUCK...it looks owie to me. He has had a couple of big seizures every day. The VNS will be turned up to full strength at his follow up appointment in 2 weeks. I'm praying he will return to mostly seizure free days.

I know I've written about this before but each time I take Tuba to Children's Hospital it makes me so thankful. Thankful that my sweet boy is doing well. I see so many sick children at the hospital. It's hard to see so many young children suffering. It's harder to see the pain on the parent's faces. I am thankful for the medical care that Tuba and all of these sick children are receiving. I pray for the medical staff doing such a tremendous job caring for these children.

I pray for the children and for their families. I tell you...if you are ever having a pity pot day...just take a visit to your local Children's Hospital and you'll feel blessed.

The Real Amazing Race

If you've ever seen the television show the Amazing Race you'll know what I mean. Couples go on across the globe on a scavenger hunt type race. This morning I had my own Amazing Race. My hat is off to all the Moms and Dads out there who have big families and busy schedules!!! I had to take Tuba to Children's Hospital for his pre-op appointments. Busy Guy and Mr. P had pre-school and Lydia was going to Grandma's house. Baby George was coming with Tuba and I. Cam is at school all day on Thursdays....of course:) The race began at 6:45 when I dragged myself out of bed. Breakfast for the gang...toast and eggs. Took everyone back upstairs to get dressed...thankfully laid out all the outfits last night. Nursed Baby and then jumped in the shower myself. Brushed 4 sets of teeth including my own. Washed faces and fixed hair...bed head you know. Put on makeup, fixed my hair, got dressed. Gathered items for two diaper bags, packed snacks, extra clothes and pull-up for Busy Guy. Went downstairs to start shoes, coats, backpacks and send kids to car one at a time. Buckle everyone and leave at 8:50. Drop the boys at pre-school...taking all 5 kids in with me. Back in car and to Grandma's house to drop off Lydia. Back in car and off to the hospital.....ahhhhh, silence in the car. The day was long but it was nice to only have two kids in tow. Arrived back home at 4:00. Time to re-group, eat dinner and go to church tonight. Thanks to my MIL for having the kids today!