Hezzie : Goals and Such

Hezekiah loves numbers and math in general. He met most of his math goals on his IEP this year. That makes me one happy momma. We ordered Life of Fred Elementary set and we started today. He really loves learning and since this has reading, art, and other language arts involved...he is over the moon. Instead of paper we are using a dry erase easel we got awhile back from the Goodwill and the markers from Amazon.
Hezekiah is currently enrolled in a charter school and receives SAI classes during the summer. We started using index cards for him to keep track of the words he can read. When the index card box comes we will put them in alphabetical order and store them. He said he is excited to see how many words he can read by the end of this year (after Christmas). I think for his first 100 words I am going to make it special for him.
He has a temporary speech therapist who is pretty amazing and I hope maybe she can stay on through the next school year. She will be at his phonics day camp next week and work with him afterwords. She said that he doesn't have appraxia but a phonological processing disorder. So let's hope that being treated for that will be more helpful for getting his speech where it needs to be. Well, where he would like it. His vocabulary is pretty great.

Life of Fred on the dry erase board.

He is in My Heart

Today I gave a presentation on Hezzie. It was for the children in his program to better understand him and how his brain works. I had asked that parents be present, and well none stayed. The one kids nanny was there, she is always there. I think it went pretty well, but one kid was being a bit rude.
It was hard to put the presentation together. Not technically hard, but emotionally. As  parent/caregiver I know all these things about my child, but when it's ALL there in front of you it hits you in a certain way. A way that just makes your heart kind of leap out of your chest and sink all at the same time.

I could see at some point it was becoming hard for my two children who were in class. They didn't look embarrassed or uncomfortable, just sad. They've said some of the kids have made fun of Hezzie when he is not around. It is upsetting for them. They know Hezzie is not what someone would consider an ideal student, but they have always known what he as been through. But, it's not just the kids making this transition hard. I will leave it at that.

Lately Hezzie has been extra cuddly. Oh, it warms my heart. He comes up and covers us both up with his Star Wars comforter on the couch. We will sit there and read, or just watch TV. That is another thing, he is now wanting me to read to him more. I love reading to him. Now he is trying more to read. He has already earned two awards at the county library and we are working on some other reading challenges, most of the kids are. They are actually pretty fun to do.

I am exited for the day he is reading completely on his own.

Love, Momma

Tuesday is Zoom Day

I felt like I haven't been home all day. This is serious, usually I can watch 50 episodes of SVU in a day. Okay, not really. Joaquin had an AMAZING OT evaluation today. I'm beyond pleased, now waiting for approval for him and Hezzie. 

Then we had Hezzie had as speech evaluation. Which wasn't surprising since I kind of knew what they were going to say. So here is to hoping that this get approved fast. So then the hour drive home ended with picking up Dexter so he could go to Creative Writing Group at the Library. I picked up some groceries, are dinner and then went to the Girl Scout Volunteer meeting. Hip Hip Hooray I won the drawing for a free pie! 

^^^ That is the paint job for the Girl Scout House, oh how I love it! 

Tanni and Joaquin playing with Legos. Life is pretty grand today!

Make memories!

Sensory Fun

We've been working on more sensory fun. Also on fine motor skills. While the focus is mainly on Hezzie I invite the other kids to join. In hoping Joaquin will.

Here is the bag we made with hair gel, glitter and pony beads.
Then the pony bead suncatcher. Hope you all are having great summers.

Momma not Mutha

 

Sometimes I look at this spectacle of a life I have and have to laugh. If I don't I would be one depressed mutha. You read that. I have a lot of private messages, texts and emails from people. Most I have never met who tell me, they feel like they know me because I am so open with my life. I really have nothing to hide, except the state of my bedroom. I need a dresser. Well, besides that I really don't feel the need to hide anything. For years I hid Jimmys alcoholism and what did that get me? Let's see. Oh, I got accused of making it up, I was alos blamed for it. You know being married to a lazy housewife with lots kids will do that to a man. Anyhow, nothing to hide. Nothing is embarrassing to me except when my friend Angie goes on Facebook and brings up a crush I had in high school. But, that's fun embarrassing.

 

We do seems to have rounds  of chaos here. Or what could seem like chaos to others and usually is to Jimmy. Right now Hezzie is back at Loma Linda Childrens Hospital. He is waiting to get his surgery site tapped again. There is a possibility of another surgery. I really hope not, I am praying this won't happen. In the meantime, Maggie has TONS of Girl Scout Cookies to sell, Waylon gets his first Cub Scout awards on Thursday. Joaquin has an MRI coming up and Dexter has youth camp coming up. I hope I can make the latter part happen.

Now, I will say thank you for all the love and prayers...keep them coming.

Love
Momma

Birds Attack

And cookie time is here Maggie put up her "lemonade stand" to sell right at lunch time. She waved her sign and smiles. She sold six boxes and then closed up shop. The cold wind was making her face red and she was ready for a snack. What I like is that she has the initiative and motivation to be out there. She smiles and is just coming out of her shell with this.

My kids are all into Angry Birds. We have several small soft and hard toys for the kids. My mom even bought Hezzie a HUGE stuffed red Angry Bird for Christmas and Santa brought them Angry Birds tooth brushes with bags. Well, today one of the small hard Angry Birds flew into Hezzies head. It hit him smack in his swollen area, yep the still swollen spot from his surgery. So now we have to watch and make sure nothing funky happens. If he starts barfing, seizing, walking funny or complaining of pain....we get to go to the ER. We can also take him if we think it's just getting too swollen. We all know the brain does not like pressure. We also know Hezzie does not like the ER or being in the hospital. Keep him and Jimmy in prayers. Why Jimmy? He can't deal with stress when is comes to Hezzies brain. I have learned to....and then I see the differences in the pictures. The one above was from this morning, below was not too long after the Angry Bird went on attack.

 

Love

Momma

Ugh! It Has To Get Better

My mom brought over Hezzies birthday gifts today. He wasn't thrilled with the Batman pajamas, yet he is wearing them all day. He got these cool cars called Flip Force. They are pretty awesome.
Jimmy has been grouchy and overwhelmed with everything. Although, I have tried to make it easy. I am trying to make it to where he only had to sweep and mop when he gets home, and maybe make dinner. It's not enough though. Well, that's how I feel. When he cycles it's right on me. I wish he'd have time for meetings or something. I am worried the stress will make him just not come home one day. If that happens, I'll deal. I won't be happy, but I will deal.
I do not expect people to feel sorry for me, or hate my husband. I'm
just frustrated. I am not supposed to do anything. I still do some things though. I hate not being able to have sex. This is when I think a Devi d wife would come in handy for Jimmy or a surrogate.
I am over these women on boards saying that if they can't get satisfied why should their man be able to? How about to stabilize their mood, maybe it's just me. A mothers helper would be great. Or a giant nanny dog that makes sure they don't make messes.
The kids ES for school is on my last nerve. She doesn't call, I'm constantly calling her to get answers. Frustrating and I may just withdrawal them, and let Dexter enroll next year.
On a good not, I'm not behind on laundry. The kids bring it to me, I sort it out and hang thing on hangers. They put it away. The house is cleans d my animals seem happy. Tomorrow I have a friend coming over to visit. My first real visitor. Just to visit. Yes, I'm starved for adult interaction.


I'll learn to be happy in my circumstance.

Love,
Momma

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

Swimming Before Sunset

Last night Jimmy took the older boys to Boy Scouts. While he had them out, the littles and I enjoyed some backyard time. They went into the pool while I enjoyed fresh air that wasn't hot enough to burn my throat or fade my tattoos. They had fun hamming it up for the camera.

Waylon was water weary until our beach trip. This is great news for me. He is getting over fears a little at a time. This weekend may be his first overnight trip without a blood relative. Damn you Cub Scouts! He said he wants to do it, so we are going to look into it.

Hezzie was splashing around a little. Mostly he was screaming with joy at the silliness of Maggie and Waylon. These kids are so fun together. They call themselves "The Three Amigos". I call them fun!

Look at these two. They were taking turn being strong in the water holding one another. They crack me up.

Here is Hezzie some time later, Fluffy fell asleep with him. He looked so cute not to snap this picture. What can I say? It was a great night for all. Enjoying a little moments is what it's about.

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

Weekend Update

Friday evening was a get together at my moms house. My sister and her family were down before military transfer. We celebrated her daughters first birthday. It was nice time.

Saturday, we had a family reunion. That by far was the best day of the weekend. At first I was unsure, seeing how it was 107 degrees here and raining when we left. Once we got over the hill, it was soooo much cooler. It sprinkled and rained a bit. There were lots of clouds in the sky and a nice breeze. The kids played and got messy, food was good... the company was good. It's always good to see my extended family.

Sunday, was lazy day. Then I started to clean up my room and worry about Hezekiah set in., All the "what ifs" started dancing in my brain and teasing me. Needless to say, it caused some tears. I don't think very straight in that state. It passed after a bit. Glad it's Monday and I woke up with all my kids home, happy and relativity healthy.

Love,

Momma

Of Seizures and Brothers

I have been avoiding blogging lately as to not complain. You know, sometimes life throws us curve balls. The van has been in the shop for longer than needed, my iPhone will not restore. Just things, things that are not life ending just frustrating.

Joaquin has been staying up WAY too late, even with melatonin. He says he has been worried he is going to get sick. "Mom, I always get sick in August. It ruins my birthday. It's just bad luck." Strange thing is, none of us recall this bad luck. However, Joaquin has been known to tolerate sickness and pain for long periods of time without telling us. I have to say, it's probably his Autism.

Last night he was up pretty late and fell asleep on the living room floor. Around 1:20 am he sort of sat up and was seizing. He came out of it foaming and spitting. I ended up being awake for some time after that. He fell back to sleep and until this afternoon was pretty tired. He will be seeing his neurologist again pretty soon. Joaquin will also be having his MRI and EEG soon.

Joaquin has a MRI not too long ago. The neurologist from Loma Linda called me today. Hezzie has a cyst on his right temporal lobe. From what he says, it's pretty sizable and putting pressure on his brain. The doctor will be referring him to pediatric neurosurgery. He has an EEG soon and hopefully that will tell us more. I have to say the neurologist they both see is pretty amazing.

When I got this news, I was not anxious. I was not worried and still will not. I know in the end, worry for me...it's like picking an infected wound. It makes things worse and nothing gets accomplished. Also, it's not about me as mom, it's about him (them). It's about making sure they have a life outside of my own expectations. I love my boys.

Love

Momma

There are times when everything seems just so perfect. When the screams die down and the anxiety of a little girl passes...this was one of those times. We had the couch bed pulled out for the littles, made all soft and comfy with thrift shop comforters and the felt sandwich kit came out. Hezekiah loves any kind of "toy" food. It's something he can "play" with that is like real life, not something he has to mimic from someone else.

Maggie and him played for quite some time making amazing sandwiches, laughing and smiling. The other boys were in the back room watching TV. I could her some laughter and occasionally the loudness of Waylons excited voice. It was a peaceful night with some music in the air and for once a clean livingroom before bedtime. A moment in time I was glad to share with my amazing kids.

I hope you get some calm after a storm....

Love,
Momma

Hezzie

While it is true we are an unschooling family, I know when my kids are frustrated and need help. Hezzie just turned three and barely speaks and when he does it's not always coherent to strangers. The school district offers free help and well, we decided for him it's the best. Yesterday was his first day and he cried at first but, promptly stopped. It was only an hour but, my heart broke. When I picked up up he was smiling and showed me his bear he made. Today he has a half hour session. So only twice a week.
In November he sees his pediatrician and we can get him back for a neurology appointment. He is very clearly Autistic and needs some OT. He is a bit aggressive and different from his older Autistic brother. We shall see where it leads.

Love and Joy,
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