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!
Jude,
Please sleep your mommy is tired.
That is all.
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!
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 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.
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.
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!
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.
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!
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.
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.
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!
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 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.
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