Color Me Beautiful

Oh my joy and my love. This beautiful boy has finally healed from his surgery. No more CSF flowing in and out of his skull. We still have to be careful and we await his next appointments, one that we had to cancel due to him being kicked off insurance (thanks Verizon). We are waiting on his protective headgear, which he should still use.

This boy brighten my day with his creativity and questions, he can also leave the biggest messes....that's what four year olds do. 

I am forever grateful and humbled by the outpouring of love and prayers that have and still come his way.

Love 

Momma

Dad Bear

Recently our large family has endured a bit of the flu. I say a bit because, I know families who are small in size and suffer for up to a month. It being a short season in our home doesn't make it any less painful. There was a lot of aching, sleeping, changing of bedding and toilet paper purchased. Obscene amounts of Gatorade was consumed as well as salty crackers. Lots of sleep, snoring and drooling and that was just for Jimmy. Kidding, sort of. The worse part for me was having Hezzie as for his Dad Bear. In his weak little voice he asked for him after vomiting for I think was the third time. He was wrapped up on the living room couch in what is probably a queen size comforter. His little chubby cheeked face was more pale than usual. "Gimme Da Bear."


He wrapped his arm around the soft cocoa colored necked and closed his eyes. I think Dad Bear will be his go to guy for times of discomfort. This makes total sense. Dad Bear was given to him by his Grammy. Grammy bought him so Hezzie could have some object of comfort while he was in the hospital.( This reminded me of when I was a kid, my Nana and Papa would buy any kid who was hospitalized an expensive lovely.) He did snuggle and love that bear that first stay.  Every hospital visit and doctor appointment since Dad Bear has gone along. He has been a source of comfort for Hezzie.


As much as I love Dad Bear, it aches my heart when I hear Hezzie as for him. At the same time, I am glad he has that comfort. The way he is, he doesn't much like being comforted by humans.
Love, Momma

How the Grouch Ate Happy

I love my son. I love him and he's only four. I love him and he is irritated by things that irritate me. I love him and he is tired of getting his head poked and stabbed. I love him and he's tired of one eye not working right. However, he needs to be kind to others when he's irritated.

This morning Jimmy is taking him back to Loma Linda for another doctor visit. I hope they don't feel the need to extract more fluid next week. There is only so much a kid can handle before they become combative.

Hezekiah is so grouchy, he can turn a happy moment into something out of a family comedy. No not that funny part, the part where you hope your kids don't behave that way. You know, where they are kicking and screaming "No!" Yep, the part where all the good parenting skills fall out of your ear. Your head spins and your voice isn't so gentle any more. Far too many of those moments recently.

Jimmy recently said he is having regrets about the surgery. This one complication is reoccurring and taking its toll. I am just praying that it's all over soon. On top of his Autistic moods, and keppra outbursts this is putting him on a whole new level of moody. I've got to put myself in his shoes and gently hold my ground. Sigh.

Here's to the weekend and hot tea!

Love
Momma

New Week

So glad nobody is in the hospital today. Tanni Rainbow came home Tuesday from Loma Linda Childrens and Hezzie came home Friday from the same place. They were both admitted on Monday. Tanni Rainbow had really high billirubins and Hezzie was leaking CSF again.

Hezzie had quite a bit of CSF drained from a big swollen spot at his surgery site.
First time was on Monday, they also gave him a whole new set if stitches then. Then again Wednesday and Friday. Not exactly a fun time for a four year old. We have to keep his head wrapped tight with pressure.

Since Hezzie has been home there is no leakage. We noticed it wants to swelling when he's more physically active. We are trying to keep him a bit more sedentary. Now would be a great time for board games and toys. We don't have much of either here. At the hospital he fell in love with Duplo blocks and these Fisher Price Trio blocks. He said the Trio blocks looked like Minecraft in real life. This kid is funny.

We had Hezzie prayed for at church today. It's been a long time since we've done anything like that. I didn't like the overwhelming response if sympathy eyes. That's not why I did it, it's also not way I write about it or share it all on Facebook and other places. I do it, hoping it may help someone and it's therapy. So many wonderful people are praying for him. That right there is wonderful. Prayer is powerful!

He sees the neurosurgeon for a wound check tomorrow. I'm praying all goes all and if you'd like, you can pray as well.

Love
Momma

On the 29th

Of November...life was crazy. Hezzie was at Loma Linda on an IV waiting for fluid to be extracted from his incision. Oh, I should mention it was cerebral fluid. I had a morning OB appt and was contracting. I was checked and at a five. I was told to go to the hospital.
I drove to Loma Linda to get Jimmy. While waiting for my mom we saw Santa and Hezzie made a gingerbread house. He was upset when we left.
We came to Banning at around 1:30 pm and we welcomes Tanni Rainbow into the world at 6:45 pm. She weighed 9lbs 11ozs and was 20.5 inches long. Shea big and beautiful. Her hair is black. She was born vaginally with no epidural . She came so fast the nurse caught her with one glove. I did no pushing just deep breaths. Big ones!
She's amazing. Hezzie is home now abs we will be home tomorrow.

ER and what not

My life is pretty much an open book. Chapter 37....Today I'm 38 weeks pregnant with baby number six. Yesterday I was told I was dilated to a three. So instead of finishing up my laundry nesting, I'm at the childrens hospital ER with my four year old. His surgery incision is weeping some sort if fluid and is pulsating. On the plus it's not infected.
The neurosurgeons seem to be allusive right now. They are being tracked like Bigfoot. We know they are in the building, but where? Is that them? Is there some sort if new neurosurgeon mating call we don't know of?
While we wait the four year old plays with some bright Fisher Price blocks, I'm in an uncomfortable plastic chair. All my lady parts hurt, I'm pretty sure my vagina is angry. I'm thirsty, but glad I am not urinating every twenty minutes.
Where are the neurosurgeons? We've got to make sure that the artery isn't communicating with this giant lump on his incision.
I have an OB appt at 8:45 and I'm wondering if I'll make it. Feet are swelling and did I mention I'm thirsty. I'm kinda hungry and the four year old wants water.
He's playing with the blocks lets hope they never become boring.

Recovering and Daily Life

Hezzie is doing better. He is talking more and sleeping less during the day. He's been treated well by his brothers. Maggie is at her friends and calls for updates. Today grandpa came to visit. Hezzie said grandpa for the first time, "Bampa, look at dis." My heart jumped.
Waylon plays with Hezzie a lot, the older boys have been busy watching science videos on YouTube. I'm not at all shocked.
Today we also painted empty toilet paper rolls for a craft. He loved that.
This evening we had firewood delivered. Then we had more visitors. His old in home teacher and kids came. It's been over a year since she has worked with him. He remembered her.
He also got mail today. People are so loving and we are thankful for cards and little gifts. He shares them.
Best news of the day...his left eye is opening up!
Joaquin has mastered the grilled cheese Sandwhich. All I can say is yum! Got to love when he learns to cook/bake some thing new. He does it until its delicious and pretty! Pretty awesome for a 10 year old kid.
Now we prepare for baby Tanni! She will be here soon.

That's all for now.

Love,
Momma

Home

Lots of prayers for healing, that made us possible for Hezzie to come home yesterday. Needless to say, he and I are both happy to be home. Probably more he. He was crying yesterday that he wanted to come home. Broke my heart.
During the early morning hours, he got out of his bed and pulled his foot IV out. So I went back into bed with him. I am glad at 36 weeks pregnant I would fit with him, so he'd be comforted. Most people know hospital beds are not exactly spacious.
The team that worked on him said he was recovering well. He will have swelling for a bit, and see his neurosurgeons partner in two weeks. The neurosurgeon will be teaching overseas. He's that awesome!
Before we left the hospital yesterday, we headed to the playroom. He had fun. That play room is a kids dream!
I feel so blessed at how rapidly everything for his surgery fell into place. It was less than three months after finding out he had the cyst.
He came home to a get well card in the mail. He was excited!
I'll keep updating about him and our everyday life...including a new baby soon.

Love,
Momma

Neurosurgery Post 1

We checked in at 7 am yesterday. Hezekiah had a sedated MRI before his scheduled surgery. He doesn't do well taking liquid meds, read thick sticky meds, so they went in rectally. Not a fun ordeal for anyone. He had his MRI and woke up about six hours later and played with some toys on the floor. Surgery was scheduled for 1330 and was delayed. The OR was in use and that surgery ran late. He was taken back at roughly 1530 and at 1634 we got a page surgery had begun.
Luckily he had no major bleeding and the surgery was able to be done endoscopicaly. There was some minor bleeding thanks to blood vessels that had formed on s cyst. They also found a blood clot on it. They left the cyst to be absorbed. The body is an amazing thing. We saw him in recovery and he was vomiting from being sedated twice yesterday. He had a CT last night before we ended up being settled into the PICU. He slept well and only vomited a bit more. He doesn't like wearing a diaper or being woken up. I don't blame him.
As I write this he is sedated again for another MRI with CF flow test. I am here watching tv wishing it was already over. Hearing him yell no when they do things to him breaks mommas heart. I know though it's for the best.
I texted the other children this morning and sent pictures. They need to beware of how gentle they need to be with him when we get home. The stitches on his head are knees weakening to say the least. Seeing his left eye swollen shut, that is something else. I prepared myself beforehand by the using the magical powers of Google, yet this morning when he was being  sedated I could not help but cry.


Love,
Momma

Neurosurgery Appointment

Took Hezzie to his preop with his neurosurgeon today. They explained the surgery and recovery. He will have to have his hair washed everyday until he has a smooth scar. This won't be fun for someone who is facial and cranial sensitive.
Hezzie was excited to vote in the pumpkin decorating contest that the office had. We all got to vote.
I will stay with him in the hospital for the three or four days he will be there. I may have to bring extra pillows. I want to get Hezzie a big Lightening McQueen or Mater pillow before we go so he can snuggle. I hope it all pans out.
Keep him in prayer as, the surgery is just around the corner.

Hezzie and His Brain Part 2

Yes, my littlest is undergoing neurosurgery. He has a cyst on her left temporal lobe, actually it's put so much pressure on it that it's barely there. According to the doctor it's been developing all along with his brain. It's deep enough that it runs to his optical nerve. The scariest thing is that the middle cerebral artery runs though the cyst. So along with the usual risks of brain surgery we have the risk of stroke and paralysis. As the doctor said, "The risks of the surgery outweigh the risks of not doing it." What do you say to that?

We had several questions for him and we are glad to report that he has no long term plans of leaving Loma Linda University Childrens Hospital. Why is that important? You don't want a doctor handing your kid off to a doctor who does not know him, right after a procedure.

I ask for prayer for him, that he is easy to sedate. It's always hard with any special needs child. Pray that the doctor and his staff have steady hands and clear minds. I will set up a card shower for him prior to the surgery. If anyone wants to help with that. His birthday is next Friday, September 28th. He will be 4. So if you want to send him a card for that, that would be awesome, too.

I can't really explain this picture. And will not try to. Other than that's the top of his brain, and not the part affected.

Love

Momma

Hezzie and His Brain

Hezekiah started up another "school year" of speech at a local elementary school on Wednesday. He goes twice a week for now. He has an IEP coming up next month. So far, so good.

I got his appointment for his nuerosuregon appointment. He will see this doctor in Loma Linda on September 14th. He will read the MRI and hopefully the EEG that Friday. I am hoping and praying that something can resolve this issue. The cyst is 3cmX4.5cm on his LEFT temporal lobe. I don't know why initially I thought he said right. The neurologist did say it was putting pressure on his brain.

If you are the praying type, pray for him. He has already had one surgery, on his foot. I don't know how well he will like one on his brain.

Love,

Momma