Monday, April 30, 2012

The Zoo

So yesterday at about 4pm prior to our nurse leaving Jude got very cranky! Alan tried everything to get Jude comfortable, but it just wasn't working. So I was able to console him for a bit by holding him, but it didn't last for long. I finally got Jude to sleep by patting his back for awhile while he laid on his futon. When he woke up he was okay for a bit, but then got very cranky again. I ended up putting him to bed early because I thought he needed the sleep and mom needed a break.

So we went to bed too and then at TWO am in the morning our doorbell rings. I stumble out of bed half asleep and open the door (when I know I shouldn't) and my neighbor is standing there. "I am so so sorry to wake you up, but your dogs got out". I looked at him blurry eyed and muster out "storm?". He said "Yes it's about to storm". I respond "Okay not my dogs but I will tell the owner, thanks so much!". At that point my husband is walking to the front door...... I look at him and said "Your dogs are out" and keep walking to the bed and fell in it. So Mike goes to retrieve Spot and Jack whom I had reconciled with a bit that afternoon. We had cleaned up the patio and we had sat out there with them for a long time so I was disappointed they escaped again....the darn Houdini's! I finally fell back to sleep and Mike comes through the door.........which makes Bigs (our yorkie poo) bark. I had purchased Bigs a "No bark" Egg from Sunbeam which seemed to be a miracle device......for the first day. So Bigs loud shrill bark woke Jude up and sent him into a this point I want to fricassea a few animals. I finally get Jude back to sleep and crawl back into bed.

I then here POP POP POP as the cat tears apart my weather stripping on my front door trying to get inside the house because the terrorists are occupying his garage. The cat cannot come in because he had just been treated for fleas that afternoon. So I pull myself back out of bed and open the door to scold the cat. I then head back to my room and I hear Jude's cries.

At that point a cliff sounded pretty nice............and this is how my entire night went. I probably got to sleep from 11-2.

&!&$& Zoo!

Thursday, April 26, 2012

A dude flick!

So I started paying for NETFLIX on a monthly basis and it's the best $7.99 I have ever spent! Emily is loving putting her teen movies and shows into her IPAD. So last night we decided to watch a movie as a family. We can see anything that is downloaded into any system in the house. So we log on and see that "American Pie" (the explicit version) was there.

Mike: (to EM) You watched American Pie????
Em: No way! I thought that was something else. I watched like 2 minutes and turned it off
Mike: I can check to see how much you watched you know.
Em: two minutes.
So Mike checks and sure enough it was turned off at almost 2 minutes in. Em has been raised right and knows better than to watch those types of movies.
Em: Um that's a BAD movie!!! I don't ever want to see any of it again!
I could tell Mike was controlling he laughter.
Funny thing is.......she didn't even get to the bad part yet (thank goodness!) 

So then Mike decides he and I should watch the movie the Expendables.

When the movie was over I turned and looked at Mike.

Me: You know how they say the term "chick flick"
Mike: yes
Me: Um that was a dude flick!
Mike: yea it was (laughing)
Me: Do you even know the plot or was their one? I mean it was like every old action star and UFC fighter blowing people's heads off with lots of blood going everywhere. Only thing missing was boobs and that's only because Sylvester is to old to care anymore.
Mike: (Cracking up) You are right I really don't know the plot, but the bodies being blown up and stuff was way cool!
Me: you are such a guy

Wednesday, April 25, 2012

The dentist and the butterly part II

The dentist we went to was AMAZING! She was so special and so sweet to Jude. She took her time to get to know him before she did anything. She then explained every instrument before she used it and even ran it over his hand so he could feel it. Jude did NOT need to be sedated and did wonderfully. He only got upset near the end of the visit when she was cleaning the plaque. She said overall Jude's teeth looked amazing. He did have some overgrowth of his gums, but she said that is common with seizure medications. She also confirmed that the prior phenobarb use caused the teething issues he experienced. She then told us Jude is missing a tooth.

Me: He is missing a whole tooth?
Dr: Yes it's genetic.........well when did you say the stroke was?
Me: In utero
DR: Oh okay then's genetic, but it's fine because most kids need more room on the bottom anyway
Me: I blame Mike
Dr: It's always the one that is missing that gets blamed
Me: well he said I have white sickly genes so we will blame his Hispanic genes on this

She thought that was pretty funny. So Jude was crying near the end of the cleaning, but she was so sweet to him. She gave him a red balloon with black spots to cheer him up and sent several toys with Charlotte so him to look at later.

When we got home a butterfly was sitting on my porch waiting for our arrival.

Tuesday, April 24, 2012

A dental appointment with butterflies!

Sometimes even though my mom is gone she finds a way to reach out. On my wedding day I smiled as a butterfly landed on my bouquet and stayed there throughout the entire ceremony (No I am not joking). All day I have been a bit flustered, uneasy, feeling a bit panicked... but I didn't know why. I finally realized tonight that I have anxiety about Jude's first dental appointment tomorrow. A regular dental cleaning is much different for children like Jude that have extreme special needs. Thanks to my diaper/food fairy phenomenon Gena I found one awesome dentist close to our house. Tomorrow I am taking him at 9am to have his tiny little teeth checked out. However, we have to stop all food by midnight tonight in case they have to sedate Jude for the cleaning and any possible procedure. Jude does not like having his teeth I am prepared for the sedation.

So as my anxiety peaked I packed Jude up for our nightly walk. When I turned on to our adjacent street I saw Jude smile!! He looked down to his arm......and I just stopped and grinned. There was a friend resting so peacefully and she rode on his arm the entire walk.

Now look closer......

Thursday, April 19, 2012

The new bride "Nose Tube Diet" and my thoughts

If you haven't seen the recent flood of news in regards to the new "nose tube diet" some brides are attempting then you can read the information here:
The immediate image that popped into my head when I read this article was this:

I remembered Mike and myself having to insert the NG tube down Jude's nose and into his stomach.  It was horrible and heart wrenching and unable to describe in words. I could go on and on about how I feel about this diet and I could use my words to describe my internal issues with it. However it really comes down to three words.....

It disgusts me.

Ps. We could really use your help to get Jude a mobility van. Please cast your vote for Emily as a local hero. Thanks!

Wednesday, April 18, 2012

Jude's "voice"

In my email today


Dear Pampers: we have had this discussion before...........your emails suck! Thank you for reminding me again that Jude is not on target and not removing me from your email list per my request.

Anyway, we took Jude up to the after care clinic last night. I highly recommend the Cook's Children's Southlake urgent care center. They are fast and friendly. They decided to do a chest X ray since Jude has been coughing for about two weeks. While we were waiting I decided to run to the restroom and I heard the nurse say, "Left lung infiltrates looks like pneumonia". I thought "CRAP! Surely not...he doesn't seem tat sick". So right after I got back in the room the doctor came in and said Jude looked fine, but had a sinus infection. I was so relieved that Jude was okay, but felt really sad for the other family.

While we were there I started talking in "Jude's" voice to Em. Em has been a typical teen lately so everything I not funny or entertaining.
She said "Stop's not funny. It's funny when Mike does it".
Me: "Well Mike cusses"
Em: "I know.........funny!"
Me: "well it's not appropriate"
Em: "O M Gee mom I know not to cuss....I never do"
Me: (thinking) "Great we are to the Ooooooo MMMMMM GEEEEEEEEE mom stage"
Mike: (Jude's voice) "*&^% Mom I told you I didn't need to come to the *&%^ doctor"
Em: cracking up "see funny"
Me: (trying to contain my laughter) "Nice babe.........nice"

Several of you are laughing right now because you know Mike and you can hear him in your head! I have to admit wrong as Mike is it's absolutely hilarious!. He also loves Jude very much. The nurses commented at the clinic on how Mike is always hugging on Jude. Here is a recent video we shot.

Tuesday, April 17, 2012


Jude had a bad night. I felt really sorry for him. When I got home from work he was very cranky and it didn't get any better unless I was holding him. I would hold him all the time if I could, but he is getting so big that it really hurts my back. We gave him Motrin and we tried to calm him, but he just wasn't having any part of it. So when we put him to bed we figured his sedative would kick in and he would go to sleep. We were wrong! He whined, cried, and moaned for an hour. So I finally just went and disconnected his IV feed and took him into the living room. I sat down with him on the couch and he snuggled into my chest and went fast asleep. Every time I would try to move with him he would snuggle in deeper. Poor little guy.

Charlotte is watching him close today and he stayed home from school.

Monday, April 16, 2012

having interesting conversations

We had a day filled with adventure in regards to our animals and loud thunderstorms. I spent the better part of the day chasing animals trying to escape and calming those who decided to stay indoors. After we calmed everyone down and the storms had passed the family decided to venture out to lunch. On our way out to eat a meek voice........admitted that she had received a rather "racy" text from a boy she liked. First.....I have to give HUGE kudos to my girl for admitting (on her own) that someone made her feel uncomfortable.......which happened to be a boy she REALLY liked. Mike immediately put his hands over his ears and began chanting he couldn't hear ... that Em is growing up. I listened to Emily's concerns and watched Mike at the same time, because I was plotting his penitence.

I took a deep breath and asked Emily........"just exactly what did this boy text you"
Mike: "You don't want to know!! (Now chanting louder) lalalala"
Me: "Why YOU know?"
Mike: "Well I can guess"
Emily: " Mom ... you don't want to know"
Me: (In my mind) " Oh great.....even she knows I am Snow White"
Mike: Does this have anything to do with body parts?
Emily: ................mmmm yes
Mike: OH MY GOD ..... (covering ears again)
Me: (containing myself) Emily did it make you feel bad?
Emily: Yes
Me: then that is not acceptable. What did you say?
Emily: I said that "I am not okay with this. If you want that type of girl you should text someone else and basically told him I was very upset, but then he blamed his friend".
At this point Mike is seething and thinking about ripping ribs from a little boys abdomen. Finally after a bit more conversation Mike yells.
Mike: "I DIDN'T WANT THIS. I didn't give birth to a girl!!! I never wanted to beat little boys up!"
Me (calmly) : uh huh. You are paying for your sins!
Mike: (looking at Emily while lowering his head). Tell that little boy....would you talk to your mama like this??
Me: uh huh... (Mike shoots me a dirty look)
Me: So the text said..........???
Mike: LALALALALALA (Covering his ears)
Emily hands me her phone
Me: Looking at Emily's phone............( My mouth DROPS OPEN!!!)
Mike: Oh lord!!!! I am going to have to call someone's dad aren't I??
Me: "Really?? They think of this at 13??"
Mike: snickers quietly
Me: (Hits Mike)
Mike: what the hell did I do?
Me: You were born male!
Mike: well..........
Me: um well........EMILY, do you know what this means??
Emily: Kinda
Me: I am a very honest person and I will never lie to you. When you are old enough to make responsible decisions then you are welcome to have a healthy sex life with your husband
Me: shhhh
Me: until that time any talk regarding the word "penis" or other issues okay to discuss with me, but not okay with little boys. You see from the time they are 13 until they are about (Looking at Mike)
Mike (lowering his head) 34
Me: "34.........that's all they think about. So you can let them know what type of girl you are. Is it okay to talk about stuff that makes you feel uncomfortable or is it not? A boy that treats you like this will never think of you more than an object"
Em: Yea that's what I figured
Me: this one is also maybe he deserves a harsh slap and a wake up call. However in the future remember that any boy that thinks of you as an object will always think of you that way. Any boy that doesn't treat you with respect and dignity ........never will. A boy knows when he loves you and when someone deserves to be treated like a lady.
Em: well let's just say I made sure he knew I was a LADY!
Me: good girl!
Mike: I just can't take it
Me: Really? Because you are so special
Mike: I am so special I poop sparkles and glitter with little kazoo's that go toot toot da doot
Me: I really don't know what to say to that.

So all in all it was a good day with a health conversation that my daughter will kill me if she knows I posted so let's not tell her. However, it's good for other parents to see everyone talks about this stuff. Also, a big kudo's to Em. This article came out today.

Thursday, April 12, 2012

Marilyn and a bean

We watched "My Week with Marilyn" tonight. It was fabulous. If you are a fan or Marilyn curious I recommend the film. I always admired her but had empathy for her at the same time. I allowed Em to stay up and watch the movie because I felt it had some important messages. The entire script was pretty deep...........and I was impressed that Em seemed to get it all! She pointed out particular moments in the film and the lack of Ms. Monroe's self confidence on more than one occasion...which is exactly what I wanted Em to learn from.

During the show Em said "Mommy..........what is this?". She took my hand and rubbed it over a bean shaped lump in her neck. I knew it was probably her lymph node, but asked Mike to feel it without assigning the issue title. He also said, "Oh it feels like a lymph node....she is probably fighting an infection like Jude was". I relaxed and figured he was right. Then I asked Em...."are you really tired?". She said "Yes that's why I have been mopey all week".

So I felt like it was probably a normal childhood issue and I worried at the same time. I said a quick prayer that I all seriousness could NOT handle two sick children. Part of me wanted to take off tomorrow to have her checked and the other part knew..........well knows it's just a normal everyday thing. I sent her downstairs for a vitamin and banned her from activities tomorrow.
So a quick prayer Em gets better soon.........and this little bean quickly goes away so this dramatic mom will have nothing to worry about.

Wednesday, April 11, 2012

Relaxation with a need

Well I am at home finally relaxing and it's only........mmmm 11:11pm (lol). Mike had to go to bed early tonight because he has a very early day at work tomorrow. Jude is finally asleep after a long struggle and Emily is suppose to be asleep. However giving the child an IPHONE has presented it's challenges with bedtime. Although, she was up late putting together a few Emily's Smile Boxes so I try to be (a tiny bit) understanding.  Jude has been................difficult this week in regards to sleeping! He has not wanted to go to bed nor stay asleep. I know he has to be very tired because I am tired. In fact I am a bit.......edgy, cranky, and incoherent. He is smiley, but CRANKY!
Tonight when I left work I battled NASCAR traffic and got home about an hour later than I normally do. It has thrown my entire night off and I have been very disorganized. Emily tried to read her play to me twice, but I could not grasp it. I finally asked to see her manuscript and read the play silently to myself so I could understand it. That's when I stepped back..........I took a deep breath in and missed my mom. I 100% am honestly jealous of some girls around me. I say that with a smile because I am jealous in a sweet sense. I so wish I could call up my mom and and say.........

1. "Mom I haven't slept in three weeks........oh wait longer.....can you come over for like a week so I can just SLEEP?"
2. "Mom the oldest kids play isn't making sense...I think I need a break....."
3. "Mom we have macaroni in a box and some tea left in the fridge...........old mother hubbards cubbard is bare and she is to busy to fill it"
4. "Mom, CRAP there are dirt rings around the bath tub!"
5. "Mom............the cat is shedding everywhere and I feel to guilty to get rid of him and I am to busy to vacuum! Really it's everywhere... (whispers) like I think the furballs are mating"
6. "Mom....the baby keeps outgrowing his pajamas because he wears a SIX and is three........can we shop?"
7. "Mom.........I have a banquet to go to this weekend for your granddaughters amazing charity...will you come with me to try on dresses because I feel like a hippo?"
8. "Mom...Em needs to go to the dentist because she has 3 fillings, Jude needs to go to the dentist for his first check up, Em needs a physical, Jude needs a GI check up, Jude needs his shots, and well I cannot get away........can you help?"

I could go on..........but man I miss having her there. My family is amazing. My step mom has been great, but she is taking care of her mom and that's a full time job. I commend her for that too because I have been in that in that situation. So sometimes I just miss the relationship my friends have with their moms. Don't rings get cleaned...but the thought is still there :)
Jude's throat looks a bit red so we will have this checked out at the clinic after work tomorrow. I am sure it's just allergies.


As you can tell it's been very busy at work again.

Jude is doing pretty well, but is not sleeping again. He is also pretty congested which we blame on allergies. I did have to make a quick post that Jude. When I go home at night from work he has really been looking at me. I mean looking at my in my eyes and smiling really bright! He just really gets who I am and I love it.

I thought that was worthy of a post :)

Thursday, April 5, 2012

A question for SP parents and frustration.

I had a low key day at work which has been unusual lately. However, I had a high stress day in other parts of my life. I don't really want to go into it, but let's just say it has really stressed me out. My husband gave me two glasses of wine and calmed me down tonight. However, I am always naive and always wondering how people can put so much stock into material items and issues. Mike just said (again) "You forget you are Snow White". Maybe he is right!

On another note we noticed that Jude's sternum on the right side of his body is grossly protruding today. We have noticed this since they diagnosed him with scoliosis, but it's really bad tonight. He has also been very restless the last two night. So we are wondering if there is something going on. For my special needs parents let me describe it further. Jude's left chest is sunken in while the right right is VERY protruding. We are going to visit the doctor, but in the past they have told us not to worry about it. Is this something anyone has encountered before? He fluctuates between being very happy and irritable. We want to think it's just nothing and attributed to his failure to stand on his feet.

feedback would be appreciated.

Wednesday, April 4, 2012

NADO'S! Plus prayers are needed and more

I felt very cared about today. I had people emailing from all over asking if my family was okay. Some were family, some friends, and some amazing blog readers. After watching the below on the internet merely miles from where I was at and my kids were at...........well I again HATE tornado's! (Nado's as my family calls them)

I am a bit of a weather freak (right now my family is saying...A BIT??) It's only because I have personally been IN the direct path of tornado's and therefore I have a respect for them. There are those that have respect and would rather be safe than sorry and those that ............ keep driving down the above highway thinking the said twister will gone by the time they reach the hill. I don't panic, but I get very ansy, over excited, and work on 100% adrenaline. So yesterday I mentioned to my co-workers that I had been watching the weather closely and I was a bit concerned. I watched the weather form and the large red cells on the radar. Suddenly there was a tornado warning, then two, then three, THEN dfw was under a tornado emergency. WTH...........there were so many forming that they just declared an emergency. I was fine with where I was because I knew I would evacuate the office to the local KWIK KAR location in Grapevine, TX (they have an underground facility and invited us once). I was NOT okay when I saw a tornado warning pop up by my children's schools. I didn't hear from Emily, but I did receive an auto calling from her school informing me they were taking all precautions. I then heard from Jude's nurse Charlotte that they were in "duck and cover" and Jude thought it was hilarious. I felt a bit of relief. Later in the day when Em asked to go to a friends I realized her school had played this day off as a "drill". Smart...........kept the kids calm. Charlotte shielded Jude and the teaches helped...he is truly loved. Once the sun came out today these are the sites seen in DFW.

Mike and I both want a storm shelter VERY BADLY. We would store some of Jude's items in there that he would have to have to survive, but they are so expensive. So we will begin saving for one. God bless the people affected by this storm. I am so thankful my family is okay.

So about 5am Mike's phone began ringing. I hit him and said "stupid alarm", but Mike arose from the sleep fog to realize it was his phone actually ringing. It was Jude's nurse Charlotte telling us her husband had a massive seizure in bed while sleeping. He was in ICU and intubated. We were both speechless. Mike volunteered to stay home because he knew that being an insurance agent I was looking at a VERY busy day ahead of me. We were so concerned about Charlotte and her husband, but we also talked to the nursing agency several times today. They were able to get a nurse in for us to meet late today so she could watch Jude tomorrow. It was strange making plans while Charlottes husband was so ill. I remember when I found out about Jude I just looked down from the hospital window wondering how everyone on the roads could continue on with their lives. Its a strange feeling. We do know her husband has made progress but they are still looking for please keep them in your prayers.

I also feel so withdrawn from people. My work is so very busy that I barely have time to breathe anymore. I am thankful I have a good job, but I am also very very tired. So bear with me if I seem tired, cranky, or just need a friend. I appreciate your patience, being there, and waiting for me to be myself again :)