PURE frustration, puppies, and disabled puppies.

Well the last two days have been very frustrating. Jude has officially outgrown his wheelchair and his bath chair. I have a very big..........TALL...boy! My friend Gena brought her 5 year old son over and Jude was so much bigger than he is. So we had an appointment scheduled with a DME yesterday. My experience with their company has been less than stellar so far. They were recommended to me by the school and by Jude's other medical supply company. However, the company in question has gone through a merger and it seems we have been mixed into that shuffle. So after several confusing phone calls we had an appointment set for yesterday. They had asked for our physical therapists phone numbers and assured me they would have them at the meeting. Well...............the physical therapist was never called so therefore we had to reschedule. On top of that our therapist NOW called today to inform us that Jude's reauthorization for therapy had not been submitted and therefore he would not have therapy until it was completed. So now we have no therapist to meet with the DME company and no therapy for Jude for a few weeks. I understand people get busy and things happen, but this has been very frustrating and unacceptable. Especially putting this on top of a busy day at work. I respect my sons therapists and I appreciate all they do. With that being said I do not appreciate a break in therapy due to the lack of paperwork not being submitted. If I can work three jobs and care for my family then being busy isn't a valid excuse to me.

Now let me change to a more positive tone. Last night we let the "terrorists" (AKA. Spot and Jack) into the house because it was about to storm. We had just bathed them the day before, applied their flea treatment, and made them look great! So they ran around the house like crazy dogs until they finally settled in on their favorite chair. Spot has an affinity for girls and is constantly following Emily and myself around. He wanted to check out what Emily was doing on the lap top



When the storms hit the dogs went crazy!!! They have such storm anxiety. They played who could climb on Mount Jenn the highest.

Bigsby was not happy that there were other dogs on his human!

With the loss of Lady Mike has been in mourning for her. However, he has also been look at German Shepard pups. This isn't something we would rush out and do, but having a dog that could be trained to help us with Jude would be amazing. I have talked with a lady at IDEA Service dogs. They teach you how to train the puppy for the specific needs of your disabled relative. We still sleep with a baby monitor in our room to hear Jude when he wakes up at night or has a seizure. A service dog could alert us if Jude needs our help. They can also help with other aspects even though Jude is fully disabled. So it's just a consideration and Mike is enjoying looking at puppies online. So last night he comes in and says "awwwwwwwwwww, I want this one!!"

Me: So you want a disabled dog to care for the disabled baby?
Mike: Well..........
Me: No
Mike: we could get a service dog for the disabled service dog and Jude
Me: No
Mike: But.........
Me: No
Mike: Well he has an owner, but I would take him if I could
Me: mmmmmmmmm okay add to our list babe..........just add to it.
We were playing around, but it was ironic that he picked the one pup out that needs extra help. Both of us do have a soft spot in our hearts and would adopt every animal we could if we had a big farm, but we don't.

Goodbye Lady

Today was a sad day at the Ortiz household. About 5:30 this morning Mike sat up in bed and said "I heard someone call my name.........it was clear as day". I just said "Strange...maybe someone is trying to tell you something". So he left for work, but soon after he left I heard a loud horrible screaching noise coming from outside. I ran outside to find Mike's oldest dog lady stuck in our rose bushes. This is very odd as they know not to go by those bushes. Lady has not been feeling well and from my "country" past I knew she had probably gone behind them to pass quietly. I grabbed our shears and cut the branches back slowly and pulled her out. When I gently sat her on the ground she fell over. I knew at that moment that someone had been trying to tell Mike that his dog was needing him. So I took Lady inside and called Mike in tears. I then cleaned her off and pulled out a nice hospital blanket for her. I laid her head on a pillow and patted her. I asked Em if she wanted to wake up and come tell Lady goodbye and she did. I called into work and explained I was going to wait for Mike to get home and that I didn't want to leave the dog. Jude's nurse helped pat and console lady with kind words. Lady had several seizures and was in a lot of pain which made me very sad. When Mike got home he immediatly burst into tears which made me cry. So he asked me to go with him to the vet and together we put dear old Lady down. The "terrorists" have caused me a lot of grief throughout my marriage to Mike, but they are still family. I still sneak all my scrap leftovers to them, I secretly make them little pancakes when I make ours, I bring them treats and Mike rolls his eyes, and I laugh when they do funny things. They are the entertainment of the neighborhood with our house backing up to trails. When people walk by the howl like fog horns.....and lady was the loudest. She had a scrunched up face where her mom bit her as a baby, but rather than letting her owners put her down Mike took her home. He gave her 15 years more than anyone else wanted to and he really loved her. My heart ached more for him than it did Lady because I knew she was no longer in pain.

Spot had to tell his mom goodbye.

Mike took his dog home and buried her in our butterfly garden.

After the dog was laid to rest I went to work. Mike took the rest of the day off to get Jude's cyst on this neck looked out, which turned out to be okay (thank goodness). A bit later in the day I received a text from Mike that said "Um it's storming" with this picture.

I was on the phone with my corporate office and I just cracked up! Spot and Jack are known for hating storms!! If you have followed my blog you know this. In the house they start going insane and tear things up and outside they escape. So Mike had to chase down his two wet little dogs and bring them home. Mike took them in the garage for a bit where they terrorized a wild black cat that had taken shelter from the storms. The poor cat still will not come down from the top of Mike's tool bench. I just looked at Mike and smiled and we had one of those emotionally complete moments where everything comes to a close in a perfectly humorous but sad and fitting way.

A feeding disaster

About 1:50am this morning I heard Jude moaning so I got up to check on him. I found his feeding tube wrapped around his arm twice. I unraveled the tube and tucked it under his sheets. What I failed to noticed is that Jude had pulled the tube out of the port. So when his feed ended at 5:15am I heard Mike yell "OH NO!". So I came running into Jude's room. I was initially scared that his G button had come out, but there was liquid everywhere!!! I picked up Jude and took him into out bed while Mike took his sheets off and scrubbed his bed. Jude never went back to sleep.........it was a Monday for sure.

Jude also has what looks like a possible spider bite on the right side of his neck. It isn't hurting him, but it does have a very hard knot in it. We are going to have it checked out tonight.

So it literally took everything I had in me to get up and come to work today.

My loves

I love these two boys! I am so blessed. Regardless of the situation life has handed us our blessings have been bountiful. I have a great family, wonderful friends, a good job, and my business it taking off.

Truly blessed!

Stress, bath's, and a little vacay.

I think I have had the most stressful week at work I have ever had. Today when I got home I wasn't feeling well and I realized it was just anxiety. So I took a long hot bath and I am feeling so much better now. The good thing about being so busy at work is it means business is great and the day goes super fast! I am pretty close to our customers and I feel bad when I don't have time for everyone, but sometimes you cannot do everything.  

Tonight when I got home Jude looked right at me coming through the door and smiled so big! He was such a happy boy all night long! I took his "Wee Sing" dolls into his room when he went to bed and I had him cracking up! Mike got in on the happiness so I decided to record the joyful noise, but suddenly Jude seized from the over stimulation. I felt a bit sad and let down so I just stopped filming. Mike said "Awwww" he knew what I felt all to well. So we went back to our routine of giving Jude his nightly medications and hooking up his nightly feed. I then asked Jude to open his mouth so I could brush his teeth and he really tried to respond. Then I kissed him goodnight.

Tomorrow morning Emily and I fly out to Lousiville. She is competing at a pageant and we also have a table to market my pageant Regal Princess and her charity Emily's Smile Boxes. We are VERY much looking forward to the weekend. I promised Jude I would Skype with he and his dad tomorrow night :)

I hope everyone has a safe Memorial weekend!

Zzzzz

Jude,

Please sleep your mommy is tired.

That is all.

Saturday nights and no boundaries.

Jude is doing much better lately. He has not thrown up since I posted about the incident he had in the early morning hours. He is also being really vocal. Although, he cannot form words and sentences he talks in "babble" and it's very cute. His chest bone is sticking out more prominent these days. The doctor's simply say "Wow that is really sticking out there". Sigh! They don't seem to be overly concerned about it though.

I have really been watching Jude work on crawling. He is so good at getting his booty up in the air and pulling his legs under him. I know he gets so frustrated because his torso and neck strength just do not match the rest of his body. Many people tell me "You just don't know what Jude can do", but the reality is I DO know what Jude can do. I know why he can do things and why he can not do them. I get it! He sure tries though and I think it's very courageous. The other day I was explaining to one of Emily's friends that Jude understands what he is talking to Jude about. Emily was listening and said "HE DOES?"...very surprised. I said "Well yes Em....can't you tell that Jude is listening to you when you talk to him?". She nodded. "He is a stroke victim Em. He knows what you are saying to him but he cannot relay what is in his mind.........and his body will not cooperate to do what he wants it to". I saw her trying to wrap her brain around what I just told her. She just said, "that must be frustrating".

Jude and mom are going to hang out together and watch movies tonight. It's a perfect Saturday!

An early morning scare

So early this morning about 1am I heard strange sounds coming from Jude's room. I suddenly realized he was having some strange seizure or something really bad was going on. I through back my blanket and accidentally punched Mike in the face and went running for Jude's room. I was to late.........Jude had thrown up everywhere. I yelled for Mike to grab me the suction machine and I got everything out of his mouth and nose. I think talked sweetly to him as I change his clothes, cleaned his face, and Mike took off his sheets. He smiled at me like nothing had happened, but I knew he had been scared.

After that he settled back into bed and went back to sleep. He was restless a few more times, but he never threw up again. I felt sorry for the little guy.

Happy Mothers Day!

Happy Mothers day to my mom who is in heaven. I am sure she is doing a large amount of crafts to make everything beautiful there. She is probably setting tables with pressed wildflowers and I am sure she has bird feeders set up everywhere. She is probably reading stories to those that will listen and playing Led Zeppelin in between chapters.

To my grandmother who raised me from 14 on who is also in heaven entertaining my mom. She is probably still arguing about things that do not matter and still caring for those who matter most to her. I am also sure she has a small white jar of jelly beans set out for me.....with the black licorce taken out (of course)....because she knows I don't like those.

To my step mother who has given everything she can to make up for lost time and whose faithful dedication to God is something to be admired.

To Caron and Me Me for extending me a guiding mothers hand when I truly needed one. Giving me unconditional and unquestioned love. Caron is the epitome of grace and patience. Me Me is a firm hand with a soft embrace and that's always needed.

To Docia for just being you and being a mom when you probably never knew you were. You touch my life in a great way and always will. You have a huge impact on those around you...I hope you know this.

To all my amazing friends and family who are mothers in a direct aspect or an emotional relation. A mother doesn't always consist of giving birth, but rather an emotional attachment that is forged with love and dedication. You are all meant to be admired.

Finally, many thanks to my beautiful children who give me the opportunity to be a mom! You have given me the best gift ever. My life is complete with you.

What a heart is meant to do

I watched the following video the other day and I quickly processed it, but I held off posting anything. I have seen several video's now with people flipping through there emotional lives on paper with writing. It's a profound way to speak to others, but it's getting to the point it's been "done". However, this mother's message was.....of course.....personal to me.

http://www.godvine.com/Mother-s-Inspiring-Video-About-her-Blind-Baby-Boy-1484.html

I watched her talk about how excited she and her husband were to have a baby. How excited they were to learn it was a boy, and how sad they learned there was something wrong with their child. How hard it was to listen to doctor's saying the prognosis looked worse and the eventual joy of delivery. I also know the feeling of hearing whispers, feeling stares, and hearing other children ask "but why is he like that?". I have felt others stares and fielded those questions for awhile now.

I forever have the words embedded in my brain..."the first year is the hardest". I heard this phrase many times from veteran special needs moms after Jude was diagnosed. It's SO TRUE! I thought these jaded women that had been through my situation were just full of it, but man they know what they are talking about! The woman in this video knows that too. The first year after having a special needs child IS THE HARDEST! Whether you are in NICU, at home, in the hospital, or in another situation.. it is difficult. It's a time of questions, confusion, education, and acceptance. It is the very definition of grieving mixed with an educational sense of overcoming fantasy. You accept REALITY! You embrace what other people may never know. You learn to either keep your head up and march on or find an excuse to drown yourself in failure and medication.

This mom found peace and brillance in her child just like I did. This baby can offer more to humanity than most men sparked in suit and ties (and they think they rule the world). Our special children offer a beacon of hope to those that struggle with stress, grief, and more. They can show you what life really means and what a heart is meant to do.

The ARD, a video, and dreams

Jude's ARD meeting went well. Everyone was very attentive and I got to hear more of what Jude is accomplishing. I did find out that he is a bit more responsive at home on certain subjects than at school. I also got a video of Jude working with the physical therapist at the school.

http://sharing.theflip.com/session/895caa0400679bb394d54c415f711c19/video/143172121

Jude is allotted a certain amount of minutes per month by the district, but I am told they always spend a lot more time with him. They are also very caring about Jude's seizures and try to refrain from loud noises and bells when he is in the school.

Again it's bittersweet going to these meetings. I have the warm feeling of knowing we have a lot of amazing teachers that truly care about Jude. I know they love our nurse and the other kids are treating Jude wonderfully. However, it stinks he has to be in special education anyway. They are looking into getting Jude more assistive technology and have called for a special review for more equipment. I am very thankful that they are wanting to progress is learning as far as possible.

Jude has not been sleeping well again and has a cough. I am hoping he isn't catching yet another bug! I am also hoping for some sleep soon. Prior to going to bed last night we watched (at huge protest from Mike) the movie the Vow. I view movies with medical situation so different now due to Jude's situation. By the time the movie was over Mike was more interested in it and it was a good flick. I felt sorry for the family, but glad they progressed. That's all you can do....move forward.

However, when I went to sleep I had a dream that Mike had an affair with a nurse in San Fransisco. I woke up hurt and angry and he said "I don't even LIKE San Fransisco!" So I had a good chuckle!

An ARD meeting

Today is Jude's ARD meeting. I have to be there by 3:30pm. What is an ARD?

"The purpose of an Admission, Review, and Dismissal (ARD) meeting is to give parents a voice in determining their child's Individual Educational Plan (IEP)."

This is the meeting that always leaves me feeling happy and sad all at the same time. I get to hear about Jude's progress, but at the same time I hear about his weaknesses. I know it's in Jude's best interest so I will be there with bells on. I will sit in the room with all the therapists, teachers, and school representatives to hear what route will be best for Jude.
I am very happy that we put Jude in school this year. I have seen a vast improvement in his communication. He even clearly said "MAMA" from his bed last night. His communication is sporadic, but we will get what we can.

I told someone yesterday the following. "People tell me that I should pray harder or hope more for Jude's improvement, but what they don't understand is that Jude is already a miracle to me. Jude is perfect just the way he is and I accept him without question". I meant it to. I don't need what other people want........all I need is Jude.

Water for Dogs

So I fought a migraine all weekend and it wasn't pleasant. Well last night the headache had gone away for a bit and I decided to take Jude out on a walk. I honestly cannot believe I am sharing this story, but I think it's worth it. So I loaded Jude up and off we go down the block. I get about to my half way point I suddenly stop because I am paralyzed with a violently sick stomach.
"Omg" I thought to myself.
"Jude.........mommy doesn't feel well at all!!" I say
Jude just looked at me and smiled
"It's not funny Juders.........oh mind over matter mind over matter"
Suddenly I break out into a sweat and now I am really panic stricken. So I text Mike.
"Mike I am really sick! HELP!"
He is at Kevins house and really had no way to help me. I picture the model homes which are up the block and how I could maneuver Jude's wheelchair into their tiny perfectly decorated bathroom. I decided that idea wouldn't work and they probably would not appreciate my pit stop. I could get a neighbor to come get me, but again I had Jude's wheelchair. Maybe Emily could drive.........oh wait she is only 13! 

So I call Emily anyway.
"Emily.......mommy feels really sick...I need your help"
"What's wrong??" She says
"I have no idea. I feel dizzy and really sick to my stomach" I say
"Like throw up" She says
"Yes Em...like I need you to come take your brother please". I reply. At this point I think she could tell I reallllly didn't feel well.
"Where are you" she asks
"Rounding the model homes" I respond
"Ok...on my way!!" She exclaims.

Now know why the girl is in track because she sprinted a half a mile in about 30 seconds..lol. I saw her long blonde hair bouncing as she sprinted around the corner. I think to myself "Gah, Flash Gordon Emily!" She was such a trooper and walked Jude all the way back to the house for me. I made it home without incident and spent the rest of the night relaxing. I immediately went and took a bath and felt much better. Nothing like being stuck out in your neighborhood with a gummy tummy and in full panic mode.
So later that night I was sitting on my back porch relaxing with the dogs and it began lightning. Spot is very terrified of bad weather so I decided to bring him inside for a bit. I also decided to draw myself another bath because it was the only thing helping my headaches. I put some of my lavender bubbles in and Spot decided to check things out. He hopped on the ledge to sniff the water and then hopped back down. Next thing I know he actually hopped in my water...............AND enjoyed it!!! This ladies and gentleman is why they are called the terrorists. Guess he needed some relaxation and bubbles too.

Ps. The reason for my migraine and tummy was a really bad sinus infection AGAIN! I am normally not sick more than 2 times a year, but it's been FOUR times since December! I am not sure if it's stress or this darn Texas weather. I have lots of votes on the weather because it seems everyone has been battling issues this year. Bleh!

An Early Mother's Day Gift

My Animoto Video (click)

I was going to blog about my day, but my daughter just provided an amazing early Mother's Day Gift that I would prefer to share. (Click the link above)

As I say to my cousin......."It made me Ink!" It may be the best gift ever!! Don't be to harsh on the spelling...she is still young and learning grammar.

She can be a moody teenager, but generally she just makes me smile :) All of the video really made me smile even the part about doing her dishes, lol! She is a cute kid! I am lucky to have her in my life.

A certified letter

Yesterday when I got home I had one of those lovely peach cards sitting in my mailbox that indicated I had a certified letter waiting at the post office. I hate those things. They were created by the spawn of Satan! Generally when they get these they are either the IRS or someone you really don't want to talk to. I get so irritated with these things because I rarely get them, but when I do the local post office is always closed and there is NO information on the card. So you are left worrying and waiting until the next day. Every time I would forget about my little peach friend I would pass through my kitchen only to see it lying there again. UGH!  

So I counted the minutes until 8:30am so I could call the post office and see what grim information was waiting for me. The lady I reached was super nice (it was early so she wasn't jaded yet) and she kindly got my letter. She said "It's addressed to you and Michael Ortiz and it's from the Texas Department of Rehabilitation Services". Then she paused and said "Division for Blind Services". I sat there for a second and said "Okkkkkkkkkay, thanks"

Then I pondered for a second. So the Division of Blind Services sent a certified written letter........seemed odd. What if I was the person that was visually impaired they were sending it to. I would REALLY be stressed out. So I tracked down the number and called them. Basically it was Jude's case manager letting me know his case had been moved to Wichita Falls (let's repeat the okkkkkkkkkkay). He gets passed around a lot within that division and I am still unsure of what their services are. The lady was very sweet and wanted to come visit Jude's school to observe Jude and his vision teacher. She also said she would eventually meet with us and let us know what more she could do. I was grateful she took the time to find me.

So she will go see Jude next week.

The big C.

I discovered we were out of milk rather late in the night so I had to run up to the convenience store at about 8:30pm. Emily decided to tag a long and so did our Yorkie Poo, Bigs. We had a near disaster when tiny Bigs (5 lbs) tried to jump into my SUV and fell out yelping in pain (I mean drama horrible awful something broke yelping). Emily and I both panicked with fear and ran Bigs inside the house only to discover he was walking just fine and ready to play (thank goodness). So we left Bigs at home and proceeded to head the short distance it would take to grab some Milk.
On our way there Emily casually says "Did you know (name withheld) has cancer?"
Me: I had no idea
Em: yea...I guess she had it twice before and has it again
Me: So she was in remission?
Em: Yes
Me: Is it Leukemia?
Em: I am not sure......I think so
Me: Well............(pausing) you need to be there for her to support her. Be the best friend you can.
Em: She says it's okay because it's only stage 2 and she won't lose her hair this time
Me: (swallows hard and is speechless) I wanted to say something intelligent about Emily's capability of understanding medical situations and truly being there for her friend. I wanted to say how amazed I was at this girls response......but for the first time I really didn't know what to respond to Emily. I thought about how brave that little girl was to say those words to Emily. "It's okay.... it's only stage 2". Then I realized she probably knows more about her illness than any of us could understand because she has been through it. It's like what we deal with in regards to Jude. I can spout off medical terminology, stats, and more when Jude has an emergency. This little girl is facing yet another new normal and probably knows exactly what lays in front of her. So I sat down tonight and realized that when you deal with a chronic medical situation you don't want people to feel sorry for you. You want those who understand your situation to acknowledge your fight. Those who don't understand.........well you hope they never do.

Despite our situation with Jude I cannot even imagine going through a cancer struggle with my child three times.......but I would. It's one of those situations where I am sure she and her parents hear "I don't know how you do it". Um because it's their child and to them they have no choice and she knows to fight! She is truly an amazing girl and I know she will come through this with amazing colors. I try to be the supportive mom but I am a bit quiet around Em's friend sometimes. However, that doesn't mean I don't sit back and think "That girl is a really great girl". We have her in our prayers and we hope you will too! So even though I am quiet ....I have no doubt Emily's friend will conquer this disease again and this will be the final time she has to deal with it. In Jesus name!



Ps. I miss my friends. It is hard for me to grab girl time so let's try to get together. \out!

shots and votes

Yesterday big boy Jude got his last shots to catch him up! He is now immunized and as much as I struggled with giving them I do feel better. He came through it like a champ and only whimpered for a moment. To celebrate we went out to dinner last night and Jude was SO great. When we pulled up to park we saw a van with a mobility Works sign on it. I explained to Emily that's the type of van we are working to get Jude. If she doesn't win the contest to get Jude the van then we will continue working to get him one. Jude is getting very heavy so being able to roll him in a van will be great. Here was Mike working with Jude's wheelchair last night.

So if you want to vote for Em just visit this link: http://www.nmeda.com/mobility-awareness-month/heroes/texas/roanoke/1384/emily-lites. You don't need a promo code, but if you have not used one before you can use 745 or 989. We have ten days left to get everyone to vote everyday.

So we are really proud of Jude and how great he has been going lately. He is really a trooper!

It's stroke awareness month and Jude with glasses

It's May again and you know what that means

I cannot tell you the amount of times I have heard, "wow I never knew that babies can have strokes". I then proceed to explain that 1 in every 4000 babies will suffer a stroke in utero. Statistically.........that's a lot! The good news is many babies will over come the stroke and you will never know the issue happened.
Did you know strokes are one of the TOP TEN killers in children? Know the signs of a stroke and don't be afraid to suggest to your doctor that you want your child tested if something should happen.

Think FAST -
F- Face - (is their face drooping?)
A -Arms (have they loss the use of an arm or is it hard to use?)
S - Speech (are they slurring their words or having trouble talking?)
T -Time - you have limited time to get help after a stroke.
http://www.science20.com/news_releases/strokes_and_children_the_top_ten_killer_you_rarely_read_about

I promised Jude I would spread the word about Strokes every year.

So here is my little stroke survivor getting his shots today and wearing daddy's glasses.

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 seizure........at 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!

A special video and a great picture!

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: Serious.........like 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

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 yes....it'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.

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 brushed...........so 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......

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: http://shine.yahoo.com/the-thread/brides-8217-extreme-wedding-preparations-nose-tube-diet-173800919.html
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! http://www.nmeda.com/mobility-awareness-month/heroes/texas/roanoke/1384/emily-lites

Jude's "voice"

In my email today

Pampers

Your Preschooler: Month 44

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 do.........is not funny or entertaining.
She said "Stop mom.........it'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 ..........as 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.

Jude

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.

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 Emily......in 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 ...so 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 .........do 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
Mike: OOOOOOOOO MYYYYYYY GODDDDDDDDDD
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 young..........so 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.
http://www.brandnewz.com/?p=11792

Marilyn and a bean

We watched "My Week with Marilyn" tonight. It was fabulous. http://movies.yahoo.com/movie/my-week-with-marilyn/. 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 literally...............in 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.

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 worry....my 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.

Mom

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 :)

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.

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 answers...so 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 :)