Random Tid Bits

1. All day yesterday I had a PMS headache. I so wanted to sneak a Ibuprofen, but I'd be thrown into an asthma attack + a sneezing fit. No can take! I do have to say that it's great I haven't had a headache in a long time. Something I used to live with daily. 


2. I've been getting a kick out of looking up Garbage Pail Kids + People's names I know. I never found humor in this when I was a kid, but now I do.
   
   
   Of course they spelled my name wrong, but oh well.
   
   
   
   
   
   Travis had two that I found, and they both had to do with poop. Personally I like, "Tracking Travis" the best!
   
   
   
   Top commenter goes to Theresa! Sorry also spelled wrong.
   
   


3. I've been worried about my nephew Emerson. He has a brand new type of seizure. I feel for my sister. She's the one that takes care of him the most. I took the photo off her facebook page. He has mittens because he constantly chews on his hands, which isn't good.
   
   

   

   
   
4. Mica wanted to watch Super Size Me 2. Now none of us are craving chicken. I had to remind my boys that Super Size Me (the original) had them not wanting beef, for awhile. Milk kind of goes with that as well. Also all kinds of crap is sprayed on our veggies and fruit. Before too long we won't have anything to eat. Are there certain foods you won't eat?


5. Isaak's mouth has been sore all week. He had braces added to his molars. It's worse than when he got braces to begin with. 

Random Tid Bits

1. What a week! I'm writing this ahead of time. It's Wednesday. It snowed last night. I walked into the classroom, and not one of my student's was in. I suppose I don't blame them. It was pretty slick out, and staying in bed sounds really good right about now!
   
   
   
   
   I have one student that has been gone 4 days out of 5. That's not cool! There are a few others that have been gone 3. When they get this far behind it's hard to catch them up!


2. I have a blogger friend that passed away this week. I would message her to chat on Facebook at times. So long Jacqueline Mitchell. You were a good friend. She had Parkinson's Disease. Somehow towards the end of her life her trimmers started to stop. She had a weak heart, and passed away from that. I never met her, but I feel like I did. She was one that would comment on almost every picture I posted. She'd comment often, but the trimmers made it hard for her to type.
   
   That's the second blogger friend that's passed away. Judy passed away quite some time ago. She was a twinless twin. Her twin passed away years before she did. It makes me sad.


3. My nephew Emerson has been back in the hospital this week. We were just thinking he was doing great, and then another infection happened. A surgeon had this great idea to dig into him to put this tube to help clean out his gut. Well it keeps getting infected (twice now, since his original surgery). The surgeon didn't believe my sister when she called to have the office treat him. She was bitchy at the doctor the first time, this time she was livid and turned the office in for neglect. I don't blame her at all. They wanted to do yet another surgery, but she and another doctor over road their decision. He's been on IV antibiotics, and they are letting the fluid drain. She made them do a culture of the fluid. They found out he also has a Strep infection in it. He got that from his oldest brother. I've been worried about him. He gets out of the hospital tomorrow (Thursday). I hope he stays infection free!
   
   
   


4. I oftentimes forget that I have pens or pencils in my ears. Do you ever put pens or pencils behind your ears?


5. Isaak usually has better handwriting. But I found this quickly written note in his coat pocket at his basketball game. It's all about how his team needs to be more serious at practice. If they clown around Isaak was going to call them clowns. 

All Better

My nephew Emerson didn't get out of the hospital until Friday. He had an infection where his feeding tube was put in after Christmas. Later we learned that part of it fell off inside him. The worst part of the whole situation was that the surgeon didn't want to see him when my sister called him initially. The doctor said, "He'll be fine." Shaking my head - what?

When my sister messaged me at work about this I messaged back telling her that it had to be an infection, and to call our Pediatrician Doctor Harrison (my kids go there as well). Doctor Harrison saw Emerson within an hour, he called the Surgeon's office, "Yes! You are seeing him! He has an infection!" By that time it had spread, was really red, the redness was hot, he had a temp, a high white blood cell count, and Emerson was not a happy camper. The Surgeon proceeded to tell the Pediatrician that he didn't need to be seen. Anyhow Doctor Harrison won that fight. The Surgeon got some not so nice comments from my sister at the hospital.

Emerson had antibiotics, slept a lot, his infected area drained a lot. Once he could have surgery to take his feeding port out to put in a new one they did. He is doing better, but still tires out easily.

The hospital's therapy dog came by right as Emerson was about to leave.

I guess it sounded like Emerson said, "All Done!" when they got in the car. He does say a few words, but not consistently.

By the time they started to ride up their hill he was clapping.

Emerson was smiling a lot because Edison and he kept hugging.

Have you ever had a hospital stay? What did you have to go in for? I think my boys have had more medical care than I ever have when they were babies.

Surgery Was a Success

My nephew Emerson that has Trisomy 18 has been battling breathing problems, since the fall. He's been in and out of the hospital 3 times I think - I kind of lost track. My sister kept telling the hospital that she thought possibly some of the problems were from a hernia that he's had, since birth.

The doctors kept pushing that thought away. They noticed he was having quite a few seizures happening. Instead of looking more into his hernia, they focused on his seizures.

At that point he was in pain, upset, doing this strange breathing thing, tired and not himself. Only 1/2 of those symptoms were from his new seizure meds.

Prior to this fall he was a happy little guy!

After this last MRI they found out that his hernia was pushing his colon up and down. It was moving its way up into his chest cavity.

Yesterday he was prepped for surgery:

Little Emerson keeps loosing teeth. That front one is loose right now. His glasses are tinted to help with his seizures. I stole this photo from my sister.

He had a hearing test, while he was out. His hearing keeps getting progressively worse. They are looking into Trisomy 18 kids to see if hearing loss is common. 

His seizures are the same. He's always had some. Hopefully they don't get worse.

His surgery on his hernia was a success. I hope he starts being more his smily self. 

E.T.

What a weekend!

On Saturday we had a family get together. My nephew Emerson was fussy the whole time. My sister took him to the doctor's office. They determined it was his 6 years molars coming in that was bothering him. I held him. It seemed like the only time he'd stop fussing is when I blew raspberries on his cheeks - in the spots where his molars are coming in.

In the night Emerson got worse. He was super fussy, was having trouble breathing, was cold, and when my sister Terra checked his heart rate it was all out of wack. They called my parents over to take care of her other kids, and rushed Emerson to the ER.

They ran some tests, did some x-rays, and came up with no answers.

I took in my other nephews on Sunday. It was a packed day for sure! The youngest Edison is only 2. We had potty training going on. He repeated everything the boys said. Edison wouldn't go anywhere without his brother Elijah by his side. Elijah had to go to the bathroom with him. Edison said, "You pee too!" Edison had no accidents.

We built a giant train track for Edison.

Here they all are:

My oldest nephew Evan was pooped! He had a Boy Scout sleepover. 

We went to the hospital. I didn't know if I should take up my two. As if I want them to get whatever nasty germs there are in the hospital. It was kind of hard not to. We had a potty seat in our car. Evan hadn't seen his parents all weekend because of the Boy Scout sleepover. Edison was asking for Mommy and Daddy all day. We washed our hands at every elevator stop. 

The lady at the front desk couldn't believe how many boys there were. We had to spell out all their names because they are unusual names for the most part. I think at first she was thinking, "Oh no! Look at all these kids!" She quickly realized that they are good kids. 

Emerson was still fussy. My sister was dead tired. Isaak asked why his finger was glowing. I said, "He's E.T. phoning home." My brother-in-law laughed and said, "Actually he's E.C. Emerson Charles." I explained the real reason why Emerson's finger was glowing to Isaak.  

The hospital still doesn't know what's wrong with Emerson. He did vomit in the middle of the night, and seemed much better after that. He slept pretty good, and went to the bathroom on the toilet. He's a little more smily.

My sister with Emerson

It takes 24 hours to get blood samples tested, so maybe something will turn up. With kids like him that have Trisomy 18 they kind of have their own unique systems. They get Pneumonia really easily. Emerson does have a hernia that she thought may be the culprit of the problem, but the X-rays showed no real threats. He does throw doctors for a loop at times. 

Evan their oldest son went home, and threw up. I'm hoping it was just because he didn't sleep and eat well because of his Boy Scout event. I used to get stomach issues after a weekend where I had an overnight. It seems like every Thanksgiving and Christmas one family has the stomach flu. I hope we're not next. 

WW: Superheroes {Linky}

My nephew Emerson has Trisomy 18. He wasn't expected to live. In the hospital they call his condition incompatible with life. He just turned 5. He walked all over during his birthday party; with a superhero cape on the back of his walker.

Happy Birthday Emerson!

Here's his family. My sister, nephews and brother-in-law:

My nephew Evan and Elijah. My boys are close to them because they are the same ages as them.

My son's Mica and Isaak.

My youngest nephew that gets all the attention because he copies whatever the boys say or do, Edison.

I convinced my dad to get a picture. ;) What a sport!

 

Vote For Emerson to Win a Special Needs Bike!

My nephew Emerson needs your votes! I didn't think you could vote more than once, but you can. You just have to clear your cookies off your computer first, or if you are using Chrome you can click in the upper right were there are 3 bars, and vote daily. 

Here's Emerson on his special needs bike at therapy:

Click on the picture to go to the voting page.

He concentrates so hard to pedal those wheels! He's come a long way since birth! Winning a bike can help him continue therapy when he's at home. There are times when my sister just can't get him to therapy (like if Emerson is sick, or it's flu season). She just doesn't want to chance him getting a cold that could turn into pneumonia. 

There is a bunch of donation options before the vote button. I'm not telling you not to donate, but you don't have to donate to vote. 

Every kid deserves a bike. Emerson really could use one. - Thank you!

WW: Dressing Up {Linky}

Every once in awhile one of my boys will come out of their rooms looking ridiculous and fun. I don't even know what to call what Isaak is dressed up as. Possibly a Nerdy Dapper Fat Man on a Safari.

I have a favor to those that comment: My nephew Emerson has Trisomy 18 - a chromosome disorder. My sister is trying to win a special needs bike for him. 

Please go HERE to vote. 

You'll see a lot of donation stuff. You don't have to donate to vote. You don't have to sign up for anything to vote either. You can only vote once. If you vote leave in your comment here - VOTE, and I'll comment on your blog twice. Thank you!

 

Warning Cuteness Overload!

I didn't even ask my sister if it was ok to post this picture, but she's always ok with it.

I hardly get good photos of my nephews. I see them mostly in the evening, when it's dark.

If you're new to this blog than you won't know that my nephew Emerson has what's called Trisomy 18 also known as Edwards Syndrome. In the hospital they call babies that have Trisomy 18 Incompatible With Life. Emerson now will be 5 in June. 

He has homework on an iPad that he does every day. It's just to recognize shapes, animals, and colors. My youngest nephew Edison sat with Emerson to do his homework. This picture is just so cute!

Birthday Party Cheesecake Jelly Bean Boom!

Whenever I think of birthday parties I think of the R.E.M. song It's the End of the World. No I don't think about it being the end of the world. It's just that there's a line in the song that says, "Birthday Party Cheesecake Jelly Bean Boom!"

Emerson's 4th birthday was this year. I can't believe the little firecracker is 4! Since he doesn't do a lot I always think of him as younger than what he really is. When I pick him up I'm quickly reminded that he's 4. He's not lightweight.

If you haven't been reading this blog for very long then you may need an update:

Emerson is my nephew. He was born with Trisomy 18, also known as Edward's Syndrome. It's extra of the 18th chromosome. To give you a better understanding Down Syndrome is extra of the 21st chromosome. People with Trisomy 18 are usually pretty low functioning. In fact many die before they are ever born. In the hospitals Trisomy 18 and 13 are called "Incompatible With Life". Many moms are trying to get this changed. They are compatible with with life. Sure some sadly pass away, but others go on to live until they are 13.

Emerson loves to stand up! He does a dance when you stand him. He nods his head back and forth, gets excited, and rocks back and forth. Maybe it's the attention he loves. When he's sitting, and chilling he often puts his hand on his hearing aid. It makes a sound like an old dial up internet. It threw me a few times. It's a coping mechanism. He's potty training. It's more like my sister and brother-in-law read his signals to set him on the toilet, so he can go.

He's getting surgery in the fall for his tethered spinal cord. It's a pretty standard procedure. Usually they find it earlier. Kids that are so called "normal" whatever that is can't walk with a tethered spinal cord. Because Emerson has delays they didn't detect his tethered spinal cord until this spring. The always want to do surgery on him when it's getting to be cold and flu season (fall). Emerson gets sick easily. They won't put him out if he's sick. We'll see how that goes. 

Emerson is doing good other then his spine. 

I missed the really happy, happy moments for pictures. I was too busy enjoying the happy moments. When I first got to their house he was laying down. I dangled a clean shirt over his face, and he was giggling. 

Emerson got: A Superman piggy bank, a big ball, a ball popping toy, a balance toy, and bean bags (smaller ones he can hold, and textured ones). Common Question: The band on his head is his hearing aid.

Mmmmm...CAKE

Isaak's big about giving people homemade cards. All week he talked about writing a nose book. So that's what he put together for Emerson. Emerson actually smiled when my sister read it to him.

As you can see in the picture above my Dad fell asleep. Our family get togethers are just too exciting for him. ;) For those that think I'm cruel for posting the picture of him sleeping - well he used to hang our bras on the front porch if we left our clothes in the bathroom when we were teens. He also hid under my bed to jump out at me when I was afraid because of a movie he let me watch when I was around 5. Our family if full of jokesters. He's one of my favorite peeps in the world. I'm a lot like him.

Edison is my youngest nephew. He's a Momma's boy right now. His older brothers try to love him a little too much by caring him when he doesn't want to be carried. Edison takes Emerson's cloth diaper off. He eats out the trash, and climbs on coffee table to stand up (watch out!). He'll kick Emerson when he's in his way. He also tried to steel Emerson's presents. Then he cried when he isn't the only one that got to hold the Emerson's presents. LOL In Edison's defense it was way past nap time.

Do you get together with your nieces, nephews, siblings...? We do often just because we all live in the same town.

WW: Nap Time {Linky}

My sister posted this picture. It's my nephew Emerson and my Dad (Grandpa) having a nap. I just thought it was so funny.

Later my sister posted a video of Emerson laying on the ground, and Edison his brother taking his diaper off. I guess he did it 6 times that day. He's going to be her trouble child. LOL

I'm so glad Emerson is wearing Isaak shirt. Yay for hand me downs. It was a shirt I got that was pretty small when I got it. Isaak looks so little! I think he's changed his mind about what he wants to be 10 times over again since then.

Please Check Out My Giveaways on the Sidebar. 

Savvy Mom

My sister was asked to write an article for ParentSavvy.com.

She was asked because she's really involved in an organization called SOFT. SOFT helps with a lot of chromosome issues that kids have. 

You can read Emerson's ParentSavvy story here.

It had been awhile since I've seen Emerson, or any of their family. We were sick on New Years, they were sick on Christmas, and they stayed away on Thanksgiving because Emerson was having a big surgery then.

He's still healing from his surgery. His eye looks a lot better. They had to pin it up because it was drooping down too much. He's still drooling a lot from getting his tonsils out. He was sleepish when I saw him. They were giving him a break from his glasses and his hearing aid.

He likes to play with Great Aunt Becky. They are always clapping, and singing. My pictures are always blurry, but he often has a smile on his face when she's around.

He's a Daddy's boy. His newish trick is to stand against the wall. You have to watch him because he will eventually fall over. He let me cuddle him for awhile. That's Mica's shirt he's wearing. It's held up well.