Thursday, June 14, 2012

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.

Wednesday, June 13, 2012

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.

Tuesday, June 12, 2012

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.

Tuesday, June 5, 2012

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.

Monday, June 4, 2012

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.

Friday, June 1, 2012

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!



Thursday, May 24, 2012

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!

Wednesday, May 23, 2012

Zzzzz

Jude,

Please sleep your mommy is tired.

That is all.

Saturday, May 19, 2012

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!

Thursday, May 17, 2012

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.


Saturday, May 12, 2012

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.

Thursday, May 10, 2012

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!


Wednesday, May 9, 2012

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.

Monday, May 7, 2012

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!

Sunday, May 6, 2012

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.

Friday, May 4, 2012

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.

Wednesday, May 2, 2012

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!

Tuesday, May 1, 2012

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.