a new wheelchair!

In 2008 when I walked in for my gender sonogram to find out what my precious baby was going to be I never thought I would be picking out wheelchair colors for him years later. However, with that being said.........for the first time we really had fun with it. Yesterday we sat down with a medical supply company and ordered a new wheelchair, a life, a new bath chair, and a stander. Jude has officially grown out of everything .... even his AFO'S! So we picked a great wheelchair that will be sparkly silver, with blue padding, and his name on the back. He will be traveling in Cowboys colors. He will also be a lot more comfortable.

He is so uncomfortable in his current stander so they picked one that will be better suited to his needs. I tuned out a bit on the lift because I have no idea how to use one. I will have to be instructed on it and then I will be better able to emotionally and physically handle the lift. We had our nurse, the physical therapist, and the medical company at our house yesterday ordering the supplies. They all worked together to find the best product for Jude.

Emily is diligently work on Miss Texas Teen. She is walking around the house in her high heels, studying the videos from prior shows, and working on her interview. Interview is going to be the most difficult for her. She is extremley intelligent, but it's molding a 14 year old mind into an 18 year old when answering questions. People (men) tend to think beauty pageants are just about your look, but they are also about your education, poise, attitude, and charity work. She is also still working on getting sponsors to help her with this pageant. She has her entry fee, gown, shoes, lessons.........which all start now. So far people have been responsive and hopefully she will receive some contributions. She has worked so hard for others and it's so nice to see her get to work on something that's truly for herself. However, if in the future Emily was able to obtain this title it would be amazing having their company back her charity. Emily's Smile Boxes is doing well. We have shipped a lot of boxes off lately and we have several groups currently making boxes in different areas of the country. Emily has also dropped off to Cook's in Southlake several times and various other places. I plan on holding another box making party, but it will have to be after Regal Princess. I am just to overwhelmed right now with everything. I am hoping we can make some Halloween boxes for the hospitals. However, Emily is asking to incorporate another birthday that includes donations for her boxes and box making to benefit hospitals. So I will see which party will be best suited for the time and donations we have.

Here is a recent drop off at Medical City Dallas.

Hope everyone has a great week.

Going to sleep and middle school drama

Last night I was talking to Jude as I was putting him to bed. This is how he communicates back to me

He had a good night. I have found that he likes long sleeved pajamas with cold air conditioning and he sleeps better.

Also, I was very proud of something Em said last night. We are working with her on interview questions for her pageant I mentioned. I asked her "Do you truly believe everyone is a winner?". She stopped and replied "YES! I believe that if you go out there an do your best then that's what matters and I also believe that learning to lose gracefully makes anyone a winner". That's my kid!!! We also had a discussion last night about middle school drama. She said "Mom..........a friend of a friend said she doesn't like me because I think I am to perfect". I explained that someday little things like this really won't matter. I then was very blunt. I said "Emily that girl is judging you based on what she sees versus what she knows and you don't want to be friends with someone that superficial. Plus, coming from a mom...........I would prefer someone say you are perfect then the school drug addict or school well .... you know". It looked like a light bulb went off and she replied, "You are RIGHT mom!!". We then had a discussion about how you can tell the difference between good honest people and those that aren't so great. I am glad she met her friend Kaylee because she is a life time friend!  

Ps. The pageant Emily is competing in is Miss Texas Teen USA! The BIG Leagues. I know some people might not want me to announce it yet, but she is so excited. I am really happy for her. She is working hard already. It's not until November and we will update the blog when she goes to compete. We are working on some company sponsorships for her and it's going pretty well so far. It looks like a lot of preparation ahead, but we are prepared.

Oh Mikey!

So casually last night I was looking in the mirror and I as I ran my hand down my neck I realized I looked older. I wasn't as thin and pretty as I used to be and I knew time/stress was taking it's toll. So I reached out in an effort to have my wonderful husband make me feel better.

Me: Honey, if you knew in advance everything that was going to happen to us.......would you have still loved me....still married me?
Mike: (reading his iphone and eating cereal).....(very dry...not paying attention) Sure babe
Me: LIAR! geeeeeeeeeeeees
Mike (laughs and spits cereal everywhere)
Mike: You just made a marshmallow go up my noise! I am choking here
Me: Well I mean could you be anymore rude about it. How about "yes honey with everything we have been through I still would have married you"
Mike; How about "I was just giving you a quick answer so you would shut the hell up and let me eat my *&$?$ Lucky Charms"

Good ole Mikey! lol. At least he had me laughing.

Fathers day, a big deal, and Jude

Today was a really good day. We took Mike out for fathers day so he could have tomorrow free of commitments (just the way he likes it). We went and ate a wonderful lunch and then went to play games at Main Event. Mike loves to compete so he made snide comments the entire trek to the facility about how he was going to beat all of us girls. What he always fails to always remember is I grew up with a competitive dad and two competitive step brothers. So let's just say I kicked his tail in laser tag AND bowling. Afterwards we came home and made a great dinner and just relaxed. It was a good day despite the dogs escaping again..lol. I followed the evening up with one of my favorite movies....."Shawshank Redemption" and remembered the words.. "get busy livin or get busy dyin".

This weekend we received some big news for Emily. Two sets of good news actually. First and foremost she received straight A's again on her last six weeks of school. I am very proud of her for this.  Second..........I wasn't sure if I wanted this public........but Emily received an invitation to compete in a prestigious Pageant in TX. I will post more information later, but Emily is VERY happy. We left the decision completely up to her and she decided to try despite what Mike calls my projected nervousness (lol). Mike was actually the one that assured her she is an amazing young lady that can grow from this pageant experience. The big league pageants normally having a teaching ability the first year so you can learn to grow into a winner. What was so amazing is that I had non-judgemental friends/family that were so so supportive. One after another  they said "CAN I COME?" ......... and it literally has me teary tonight. I am so appreciative of the people around us. I told such a select few and most of them were so amazingly supportive of her goal.

With that being said Jude also had a good day. He listened to what I have deemed his "Cajun Blues" cd and giggled a lot. He also slept through the night last night and is just a good boy!! I bought him some new size 5/6 clothes that are super cute..........although he is still 3!! He is my big boy. We have been so lucky that Jude has avoided the hospital for such a long time. I really credit his way of life and all those that look out for his well being.

Dogs gone wild and a note

I did not end up going home from work yesterday...I stuck it out. When I got home last night Jude was very vocal and wanted to be held. It was one of those nights he didn't want to be put down, but that's okay. We were also dealing with psycho dogs again and Mike was NOT happy. They still kept escaping from everywhere he would put them so he got down to business last night. He really got on to the dogs and so then daddy Jack bit his son Spot in the face because I guess he thought Spot got them in trouble.....sigh. So then Mike cleaned Spot up. I married into these dogs and per my blog after Lady died... I do care for them. However, they are a huge handful. I have learned that Jack Russells are smart, funny, and great INDIVIDUAL dogs. However, they are not good when you have more than one. They are so smart that I refer to them as "Velicoraptors". I am a Jurassic Park nut and there is a line in the first movie where Robert Muldoon is talking about how intelligent the Velicoraptors are. He says they are problem solvers and test the fence systematically! AMEN. They test fences, front doors, back doors, garage doors.........they are smart.  So we looked at some video's last night and these I think were the best two in regards to sharing what our dogs are like.

and you have to go see this one:  http://www.973radionow.com/pages/Connie&Curtis.html?article=10178500  
So I told Mike last night that my anxiety was really peaked for some reason. He admitted his had been too and we blamed the dogs...lol! I think if we had just Jack or just Spot they would be happy. We could keep the indoors with a doggy door............but then again that could just be me being naive. Here is another snippet froma book "The Jack Russell is first and foremost a hunting dog, so is bred to bark, follow a scent, roam around, and dig. Be careful that you don't lose sight of them, as they have been known to go on hunting binges, and can stay "lost," underground, in pursuit of their prey, for days on end. They will need a fenced-in yard to romp around in, because it is nearly impossible for them to get enough exercise on a leash. You will need to be committed to ensuring that the fence is secure, because Jack Russells are escape artists. They can also climb fences". Very true.........and taking them for a walk..........you get a whole lot of exercise.lol

So this morning when I got up there was a little note attached to my door. It said something like "Good Morning Sunshine. Things aren't that bad. Be grateful for what you have. Things could always be worse. Have a good day". I wasn't sure what to make of this. I think it was someones way of trying to be sweet, but it didn't really come across sweet to me. It also may be intended for Emily...who knows. However, I will say this............I rant and rave sometimes on my blog because it's my outlet for expression and it makes me feel better. Yesterday I was tired from nights and nights of lack of sleep due to Jude. I was fed up with the dogs and just needed to let it all out......it's healthy. However, when I got home last night I cooked up spaghetti for Emily and her friend. I then set up a table where they glittered my stage props for Regal Princess to their hearts content. I then had two glasses of wine and enjoyed two episodes of "Game of Thrones" (fabulous) with my husband while I held Jude. It was a good night. When I get home everyday I unwind and spend time with my family. It's what people don't see on the other side of a ranting blog. In fact my cousin asked me last weekend (she is going through a rough patch) "tell me how you just keep putting one foot in front of the other". You just do! So thanks for the note if it was intended for me, but I am most definitely very grateful for what I have. So I need to rant..........sometimes. Is it hard having a disabled child...........yes, but we have him and I always say that's all that matters.

Follow up to yesterday

It's been one of those weeks! I still don't have the therapy ironed out. The phone call I was promised yesterday to get the situation resolved never came in. So I will work on that again today. Also the dogs got out again yesterday afternoon. Our nurse said the lady that brought the dogs back was not happy at all they were out and down near the community pool (there is a fence to keep them out). I was irritated by this. Like I said it's been a week and I am about over rude people. I am sure it was an inconvenience to her to bring home our heathens, but it could not have paid for me to be there. I would have replied, "at least you can go swimming with your children.......how about you come in and meet my child hooked up to his IV and we can talk about how little things like dogs getting out shouldn't upset you so much". With that being said the (*&% dogs got out again this morning. So rather than laying back down after being up and down all night (and up since 5:45) I had to go get the *$&% dogs. The dogs who have terrorized my house yesterday and got banned to the garage where they were ripping the rubber off the garage door. So I guess I need to have the same discussion with myself that I wanted to have with the lady that returned the dogs because right now they are on my POOP list! I found this online yesterday when researching Jack Russell's "You will need to be committed to ensuring that the fence is secure, because Jack Russell's are escape artists. They can also climb fences." Another article said "better than Houdini!" YA THINK??????????

Also, Jude had a TERRIBLE startle seizure last night when our cat sneezed. It was so bad that Jude fell asleep afterwards. However, he didn't stay asleep all night. I am seriously considering leaving early and taking a half mental health day from work. Poor Jude had another seizure this morning when Bigsby barked, but it was not as bad. So between the Jacks escaping, Bigsby barking, and the cat sneezing I have decided to have animal stew tonight. Kidding.....well kinda.

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!