Joaquin and Baseball

Joaquin jad his first baseball game yesterday. He tried his hardest and hr played right feild. It didn't see much action. But, when it did I think he got nervous. The center feild ran to the ball and harness it to Joaquin to throw. It was sweet. 

Joaquin is certain situations is noticed my different socially and emotionally. I think a couple of the kids have picked up on it. I talked to the coaches wife about his needs. 

He likes playing on a mainstream team and I do see him improving over this season. It really is amazing his he powers through and doesn't complain, he powers through it all. Love this kid.

Salutations 2012

A few snippets of the year

Hope. 2013 is full of blessings and wonderment....


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

SO BUSY!

I have been so busy with the kids. Last Thursday, Maggie started Girl Scouts. She is a Brownie. Her troop is a Super Troop and she loves her leader. Look below and see her being all crafty! I signed up, as well. I did so, that way I could go on trips with her. We got membership scholarships, this works out because I still owe money on the van repair bill.

Friday night, I had a surprise, my lovely friend Tanni and her family were in town. We went to high school together. She is who the baby is being named after. She totally rocks and I hope to see her again, really soon.

Saturday I did a photo shoot on Saturday. Before the ceremony could officially begin, I got sick and ended up in the ER. How embarrassing. I am just glad I grabbed a bench before they shouted "Pregnant lady down!" Here are some of the photos from that shoot.

Sunday, we went to Del March Beach on Camp Pendelton. We went and visited my brothers family. It was such a nice relaxing time. Oh, how I have missed the beach and my brother. I can not wait to do it again, soon!

Monday, that started early. Jimmy took the day off to take Joaquin to his EEG. It went fast, since he was not so wiggly this time. But, look at those things on his head and his hair all over. He looks like he was head banging and took a slip.

He was still tired and had Subway on the way home...where is mine?! It's a Loma Linda visit tradition for him.

Lastly, here are my two hippie boys at Boy Scouts. They had a blast last night. We only had to pay $5 a boy, so late in the year. We opted out of Boys Life magazine for now. When we pay for next year, we will get it.

I am 23 weeks and some days pregnant....going fast!

Love,

Momma