The Slice

Outside My Window - A calm day at sea. I'm sitting on my bed nursing a bad sore throat. I've got two kids home today also sick. The weather is pleasant. Not too cold....not too cloudy but not bring sun either and no wind. I can see a few boats and some birds soaring above the beach.

From The Kitchen - Chicken soup will be on tonight's menu. I have the chicken defrosting but need to gather the energy to go make the soup. It's my go-to dinner when we have colds and sore throats. I have a nice loaf of garlic french bread to make toast for dipping.

I Am Wearing - Grey sweats, purple T-shirt, bare feet tucked into my bed covers....wet hair and no make-up. It's a sick day uniform...I'd switch to pj pants and no bra but I still have to pick up George at school this afternoon.

I Am Creating - A fun basket for our kids' school carnival. We are doing a Minion/Despicable Me basket. So many fun items have been donated. It's going to look really cute all put together.

I Am Going - To work on plans for Tuba's graduation party. Woot! So fun....and I cannot believe he is already at this point! We will have grandparents coming to the ceremony and then family and friends coming over for a party. I want the food to be easy and fun....cheese/meat trays, rolls, fruit, chips, and maybe cupcakes! 

I Am Reading - For Book Club we are reading The Boys In The Boat; Nine Americans and Their Epic Quest for Gold at the 1936 Berlin Olympics It's good....but it's big and it's not a quick read. I'm enjoying it but I'm not ecstatic about it. 

I Am Planning - I've hired a sitter for some regular hours this summer. I'm very excited. We worked out a schedule and at least one day a week she will come for about four hours. I can plan the kids' appointments, shopping, errands, etc. during this time. It will be SO nice to get things done and not bring all the kids with me. It's one of the really hard parts of summer when everyone is home. I can also take one kid at a time for some great One-on-One time. Also, I booked some Sat. night date nights with my love!! Yeah!

Around The House - Things are in a disarray. Being sick is one of the hardest parts of being an adult...and having young children. There is no such thing as "taking a day off". I have to do at least the minimum which is make meals, clean up meals, wash dishes, wash laundry, drive kids, monitor kids. I don't like things around the house so messy/dirty but I'll get to it later.

One Of My Favorite Things - Every year for Mother's Day the kids and Cam give me flowers for my pots. We go together and pick out the plants and then the kids (some of them) help me decide where to put them and plant them. The pots look so pretty. I love to watch them grow and fill in. I have two large pots in front of our front steps and then three big pots on the back deck. 

A Few Plans For The Rest Of The Week - Book Club tonight if I feel any better. School Carnival on Friday.....please let us ALL feel better by then. The weekend is promising sunshine and I'd love to get out and enjoy a picnic.

A Picture Thought I'm Sharing -

What's Cookin'?

As a way to spend a little one on one time with my kids at home I've started giving cooking lessons. The other kids are still around but I can focus on one kid at a time. They all like learning how to cook too. It will be a bonus for Cam and I in the future. 

I've not been the best cooking teacher in the past. I really like to do it myself....less mess....it's quicker and I really enjoy getting into my own "zen" cooking time.

But really the kids are old enough now to take good direction. I started with pancakes. I make pancakes every Saturday morning so it was a good place to begin. Sis was eager to help me.

We make the same recipe every week (Joy of Cooking). I use half whole wheat flour and half white flour. I also use buttermilk when I can. Blueberries are always a favorite add in. 

I help Sis measure the ingredients and she pours them into the bowl. She is great at cracking the eggs. Then I have her use a measuring cup to pour the batter onto our griddle. She added blueberries with a large spoon...sprinkling them on. 

I showed her how to flip the pancakes. Wow! She was a natural. She even patted the tops of them with the spatula. 

She has done pancakes a few times with me now. She can pour and flip all on her own. She likes to make little dollar size pancakes and then switch it up with regular sized ones. 

It's a nice time working together. We put some music on and have fun.....bonding one on one. 

One on One

Having a big family is fun! It's busy and loud and crazy.

Getting time one on one with our kids can be challenging. Cam and I try to take one child with when running an errand. It's a nice (quiet) time to focus on that one child. We can chat and take a few moments to connect without interruptions. 

I've been working at finding time...or making time to break out with one kid at a time. It's good for that child and really it's good for me too. 

Our "little" van was recently in the shop. I had to drop it off downtown and then walk home. I asked Mr. P to go with me. We had the nicest time walking home together. Over the three-mile journey we talked (uninterrupted) and laughed. 

The scenery was beautiful and we listened to the birds chirping. 

My boy is getting so grown up. I can feel his boyhood fleeing. I was pleasantly surprised when he reached out and held my hand. 

Kairos moment! 

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.

Mother's Day

I got the best gift on Mother's Day....sunshine! Plus, I got to spend the day with all my loves.

The day starts out with the kids giving me all the wonderful things they made at school. God bless the teachers for taking time to make these gifts. I treasure them! I will surely miss these days when the kids are young enough to make me gifts at school. No store bought gift can replace them. I hope when my kids are older that they still make me something.....maybe dinner!

We went to church and then had breakfast out. 

We got home and got ready for a big bike ride. Cam was awesome and got all the gear and bikes ready to go. It's a lot of stuff!

I picked my favorite stretch of a local trail to ride. The country scenery is beautiful. The littlest kids are still getting their "bike" legs so a trail is the perfect place to ride.

At the half way mark we stopped for snacks and drinks. The kids were thrilled to have root beer!

I love this little stream along the trail.

The ride was 12 miles! That is a long way for the little ones to go. They did great and it was a very fun time. 

Then....dinner! Cam made burgers....my favorite!

I love being a mom. It's the hardest job but one I'm so glad I get to have. My kids teach me new things every day. It's always an adventure. 

Big Toe

Tuba had surgery on an ingrown toenail yesterday. It had gotten terribly infected. I'll spare you the photo of the big swollen infected toe.

They had to give him conscious sedation in the OR because he wasn't going to hold still for an in office procedure. i.e. The Dr. did not want to be kicked in the face.

Tuba was a real champ and charmed all of the nurses.

When he was in the recovery area he had the hiccups really bad. It was hilarious. They were really loud.

After we got home he was eager to eat! He settled on the couch for two breakfast sandwiches. He laid with his foot up for about an hour and then was up and moving around. The little stinker took all the bandages off his foot and then walked ALL over the house. I was cleaning floors and carpet for an hour! 

Now next week's EEG study will seem like nothing. It will be long and hard on Cam and I but pain free for Tuba. He can order anything to eat and he will have our undivided attention. Not bad.

....because I'm happy

If you haven't heard the wildly popular song Happy....you really need to google it. I love it! The kids love it! The other day the sun was out...and warm. We decided to get the slip and slide out for the first use of the season. I turned some tunes on and the song Happy was playing. The the kids quickly got busy dancing. I wish this was a video so you could really see them going to town. It made my heart so happy! 

PS...Tuba has a toe surgery tomorrow and a five day monitored EEG hospital stay starting on Mon. Keep him in your prayers. Actually all of us. It's going to be a crazy, wild, busy, stressful week. I'll post more on this soon.

I love you more than....

Cam and I have played the I Love You More Than.....game with the kids since they were babies. We think of things we really love and then say them to each other.

I might say...

I love you more than cake.

I love you more than sunshine.

Cam might say...

I love you more than Blueberry crisp

The kids come up with their own varieties...

I love you more than ice cream.

I love you more than pop.

Last night after I tucked George into bed he hollered down the hallway to me one last I love you.

"Mom, I love you more than Legos!" So precious! And clearly he loves me A LOT because Legos are huge around here.

The kids have several Lego sets and they also still play with the large block Legos (like in the photo above). I love Legos too....and George, I love YOU more than Legos. 

Zooooom

This post is for Grandpa Jim...

This morning Sis said:

"Wow, that car is impressive. I love the smell of gasoline". I think we have a future Nascar fan!