Jude's surgery and the give back night

I took off yesterday and took Jude to see his orthopedic doctor regarding the pain his legs. He took X rays of his hips and showed me what they look like. He said that both hips are more than 50% out of the socket with the left one being much worse than the right. He explained that the hips coming out of the socket does not actually hurt, but the muscle spasms that accompany the situation do. He said surgery is inevitable and that most other surgeons would push to do it RIGHT NOW. However, he said he is more accommodating to parents if the hips do not get any worse. I told him that January would be best so I could replenish my vacation time and stay with Jude the entire time he is at the hospital. He said that was understandable and he didn't see an issue with it.

The DR was very nice and spent a lot of time explaining the situation to me and answering my questions. I was afraid I would freeze up at the thought of Jude having such a painful surgery, but my mind actually flooded with questions. He even pulled up a prior surgery he just completed and showed me where the plates and screws were holding the hip into socket. He explained they do this while the patient is little because they are very limited when they get older. He said the casting is around 4-6 weeks (not months like I was told). I asked them the following.

1. How long will he be in the hospital: 3-4 days
2. How will he get home? Via ambulance or a specialized car seat
3. How will they control his pain? Via an epidural and morphine
4. What will they do regarding his seizures? They will have a neurologist on hand and will continue his seizure medications.
5. Will he be in PICU? Possibly especially with his seizure history

They then went on to explain that he will be double diapered and not easy to move. They will send us with a roller for him and it doesn't normally fit through normal house doorways. I explained we installed French doors on Jude's bedroom. He talked to us about the brace Jude just got that we were told he should wear at night. He said that the brace was mainly prescribed to prevent further pain and spreading.......it's not going to fix the problem at hand. I told him that Jude did NOT like the brace at night and he said not to worry. He assured me that Jude wearing the brace for awhile during the day is fine.

So last night my amazing friend Carolyn set up a give back night at Chili's for Aubrey's parents. We ran it through Emily's Smile Boxes. Aubrey's parents came to the restaurant and I was amazed at how wonderful they look and how calm they seem. They are two beautiful people and they truly still look gorgeous. I admire them.........I really do. When Jude had his stroke Mike and I just fell apart........we really did. It may look like on the outside that we held together but our looks went, our sanity went, our sleep went. We tried to function normally, but I feel like I am just now starting to get back out into the world. Last night I looked around at how many kids and families everyone knew and realized we have really been hermits! I know we cannot take Jude out to many events (noise, germs, etc) and we have very limited babysitters, but still........it's like we have been hiding. I know her parents are suffering and will be for a long time, but how amazing their faith must be. When her family said they believed she was called home to be with God and they know they will see her again.........they really meant it. They weren't just one of those families that says things to cope.......so I applaud them and again admire them. God bless them all!

I also applaud the community for coming out last night. I was so overwhelmed at the turn out, all the Love Aubrey T shirts purchased from Carolyn, and all the love in that room. What an amazing job!

The kitten, Jude, missing a friend, and an event

So last week my new kitten Paislee started acting sick. She normally comes bouncing like a kangaroo cat to the front door whenever I get home. However, on Thursday I noticed there was the dog running to greet me.......but not little "Pay Pay". My little zoo had decreased by one so I went hunting for her. I finally found her hidden under the futon. Her breathing was super fast and she felt very warm so I was concerned. Mike accused me of having Munchhausen syndrome and told me I was nuts. So I let the kitten be for awhile, but I was still concerned.

On Friday Mike called and said the kitten wouldn't eat the soft food we had purchased for her and she was indeed sick.....uh huh. So I rushed home and drove Paislee to the doctor to see what they said. Luckily I met an amazing vet who was wonderful with her. He gave her some fluids and sent us home with an antibiotic. He thought Paislee basically had the feline equivalent of RSV. So she FINALLY started coming around last night. I got her to eat several times and drink lots of water. While she was sick Spot kept hopping on the couch just to sniff her and make sure she was okay. Oh and the vet said to tell my husband to also listen to mom because mom just knows when her kids and furry kids don't feel well. Emily agreed.

Poor sick kitty!

 
While Paislee was sick she would hide under Jude's futon. When trying to fish her out to take her to the vet I pulled something in my back. I feel old just muttering that sentence, but it's true. It was so bad that when I turned in bed I would yell in my sleep and wake Mike up. So then on Saturday while shopping with friends I started having this pinching/stabbing pain right above my heart. I didn't panic because I knew it was localized to one area and I had no other symptoms. However each time you get piercing pain in your chest you get a little oogley feeling. So today I went to the dr just to get checked out. She said I had swelling of the cartridge by the sternum and it's very painful. She said most men ask for a pain shot. Yeah well they also don't give birth, I am fine just old it seems. No more lifting futons to look for sick kitties!

Jude goes to the doctor on Wednesday. He will be getting a blood draw to check the levels of his seizure medications and going to the ortho regarding his legs. I am taking the day off so I can get him to the appointments. That evening we also have a function at the chili's in Roanoke.

Emily and I will be going early since she has cheer that day. Our friends are hosting this event and they came up with the shirts that all the kids are wearing. This is the back of them.

Only a select few know what this is regarding so just bear with me. I have no idea why this feeling has crept back up but I am having a hard time with the fact I have lost a close friend. I keep dreaming of songs that remind me of her and situations we have been in. She was like my sister and it's just so sad to me. I don't understand throwing away a relationship over something that could be remedied.....I just cannot seem to wrap my brain around it. I am trying! Mike says that I cannot make sense of something senseless. Maybe he is right. I just don't know. Still I want to text when I see something funny, IM when I hear a song, or email when I get good news........and it's just ODD! I guess we have all been there at some point in our lives. It's not easy though. I still love this person I probably always will.

Anyway, I hope everyone has a great week. I will update what the doctor says regarding Jude. I will also be posting pictures of Jude's 5th birthday. I can't believe he will be 5!!!

WHEW what a busy bee!!! A look at mourning and an update on Jude.

It's been a week that's for sure. I am grateful for my family and my job, but holy cow I am ready to lay down! Emily had freshman camp on Monday night from 6-9, then Tuesday she had another event, Wednesday she had cheer, Thursday I rushed the cat to the vet than ran home to rush her to cheer and back to pick her up, and tonight Mike has an event. Whew, I think high school may break me...giggle.

Poor Jude is just not doing well with his legs. Yesterday Charlotte had to give him Valium again due his pain level. So therefore I made an appointment with the ortho for next Wednesday around noon. However, the ortho isn't convinced this is related to his legs and wants us to watch for signs of illness. I guess we will find out the root cause on Wednesday.........hopefully. You know how that goes, it's a guessing game with Jude.

I was discussing the most recent events I have been blogging about with a colleague. We started discussing mourning and we talked about how I mourned for the child we thought Jude would be. It took about two years for us to get back to "normal". We accepted Jude the way he was and we were grateful he was with us, but it wasn't the life we planned. It also took me about two years to realize it was okay to feel the way I did without feeling guilty about it. We then started talking about losses in our lives and how individuals deal with death. I told her the only way I can describe losing someone very close (like my mom and Chris)  is like there is a huge empty hole in the pit of your stomach. This hole is so deep that there is no end to it and you feel like it's filled with ulcers and just festering up into your throat until you can barely breathe. That at first the people that are trying to help you fill that hole only make the irritation of the ulcers worse. However, over time those same people bring shovels and slowly start filling that hole up with memories and hope. Then you begin to realize that the hole has started closing in and even though it's never filled up to the top again it's bearable and you can begin to move forward.

So on to something more positive. As I mentioned before I started taking Plexus Slim. I am one of those people that believe that diet and exercise are the only true way to lose weight and keep it off. However, I caved and I tried Plexus Slim. I just want to say I feel SO much better! I am more energized, I feel healthier, and yes I am even losing weight. However, I would drink the all natural pink drink the AM just for my health. So why am I blogging about this? Do I sell it? Yes. However, I would encourage you to try it whether it's from me or someone else. I just feel compelled to try to share this with people! My co-worker Chandi is now on it and she always lost 3.5 pounds in 2 days and she said she feels "very energized and better". http://jenniferortiz.myplexusproducts.com/

This weekend we are spending a girls day tomorrow with some close friends and then Sunday we are cleaning for Jude's birthday next weekend and then BACK to cheer! I am proud of Emily for tackling this cheer group. It's for beginners and they are spending 5 hours a week teaching her choreography for a dance and beginning tumbling. In 2 weeks she already has most the dance down and almost has her backbend walk over. I also think it's giving her some much needed social time and she gets her work outs she needs for Miss Teen. We did get Emily's shots back for her miss Teen headshot and they are PHENOMENAL! I cannot wait to see them completed!

An update on Emily and on Jude

Emily and her friends have been very strong working through the death of their friend. There have been lots of hard questions to answer, but that's normal. I was very impressed with how mature the kids have been during this entire ordeal. I explained to Emily that the death of someone so young can really affect people whether they knew Aubrey well or not. It brings into question your own mortality and that of others you love. It seems the kids have all kept that in mind and everyone has been kind to each other this last week. Emily was having a pretty hard time processing her loss, but she seems to be much better! It's truly made her appreciate her friends and family. Emily asked me to post on her Smile Box site to please do something kind in Aubrey's name to pay it forward. This spilled over to my pageant site and the response has been awesome! Aubrey's family is facing some severe financial ramifications of the accident and if you would like to help then I encourage you to make a donation. You can also see how beautiful Aubrey was. Here is the link: http://www.gofundme.com/3zrtew


Jude is still getting up a few times a night lately and mommy is a bit cranky! Monday he had a difficult day at home with Charlotte because he was so rigid and cranky. She gave him some Valium and he was able to get some sleep during the day and rest. However, yesterday she said he did MUCH better and his grandma Susie came over to keep him company. She likes to lay on the Futon with Jude to tell him stories and sing to him. Jude really enjoys her being over. Next weekend Jude will be turning 5 years old and I cannot believe it! I think back to the time when the doctor announced Jude's diagnosis to us and told us that children like him normally don't make it past five. The doctor wasn't being cruel he was just stating the medical facts. However, Jude is very well taken care of and he is a little fighter! We almost lost Jude during his battle with C-DIFF. The day we were leaving the hospital the doctor told us he didn't think we wouldn't be taking Jude home and how lucky we were. We are lucky still! Jude is a bright light and a great soul. He inspires everyone that meets him! Over the past five years we have learned what Jude likes and what he doesn't. He mostly just loves being at home, people talking to him, his futon, being held, and the dog licking his hand. He doesn't like loud noises, crowded places, being cold, or being confined. Jude can speak to you if you listen closely enough. He has a lot going on behind those big brown eyes!

So my baby is turning five and my other baby is going to High School. I am grateful they are both with me!

A great loss for Emily and her friends.

The other night at our house we were talking to Emily about several situations in high school that she would probably encounter. A part of that conversation focused around students and friends that would pass away. Emily half listened to us as we explained that when tragedy strikes fate doesn't give any preference to popularity or grades. It was ironic we just had this conversation.

Friday before I left work Emily texted me: " Mom, a friend of mine was in a car wreck can I make her a Smile Box?". Emily is very laid back, quiet, and naive so when I got her text I got a really bad feeling in the pit of my stomach. I called Em and when she answered I said "Who was in the accident Em?". "Aubrey" she said. "AUBREY?" I asked in shock. Aubrey was the all American popular athlete of her school with a heart of gold. Emily had stayed the night at her house on New Years Eve.  Emily said she knew Aubrey was care flighted but didn't have any further information. Being an adult I knew that being care flighted meant she was fighting for her life. I went home and tried to pry more information from Emily, but she didn't know a lot. She said her friend was in surgery but she wasn't sure what the surgery was for and she was waiting by her phone. My mind ran through scenarios from my childhood and I hoped this situation would have a better ending.

Emily sat down beside me on the couch. She had eaten lunch everyday at school with Aubrey, but all she could talk about was her own best friend Kaylee. Kaylee and Aubrey known each other VERY well and Emily was very worried for Kaylee. Then Em got a text that Aubrey had come out of surgery and everything was fine. We breathed a little easier and I promised I would take her to the hospital the next morning. We got conflicting messages regarding Aubrey's health the rest of the night but hoped for the best.

Saturday morning we got up and took Emily to JPS hospital. We met our friend there and we all got lost in the maze of corridors...........we were frustrated but I think this may have been Gods timing. Somehow he always seems to know where people should be. We finally made our way to the appropriate waiting room and we walked in on grave news. Aubrey's bloodflow had been restricted to her brain due to massive swelling. So we all huddled into chairs in ICU. I knew this was going to be a long morning.

As a parent we trust our instincts to guide us in sad situations, but I wasn't sure what to do. I knew that the restriction of bloodflow would have a very poor outcome. I knew this because of Jude's brain and everything we have learned, however I kept hope. I hugged Emily and I nervously sat down between she and her friend. They were all quiet so I finally got up and walked towards Mike who was relying on the window to keep him up and waited there with him while scrolling on my phone. We were hidden behind a sectional and suddenly I heard someone scream out with pain and I knew what had happened. I came around the corner and my heart broke for Emily and for her friend. Despite whether you are close to someone or not when they play a role in your life their loss is always great. I walked to Emily who looked very confused and to her friend. They looked at me and I saw Emily mouth  "what??" I said "She is gone Emily" and she burst into tears. I didn't know what to say. I didn't know what to do (I just cried). I just knew Emily needed some time with her friends. So I walked on the other side of the elevator and I cried..................I cried because I felt so guilty that...........I was grateful it wasn't my child. I felt so selfish! DAMMIT why was I being selfish!!!! Walking out of the unit I bent down to pick up a white box decorated with such emotion and handed it to Emily. It said "Emily's Smile Boxes" on the label and on the back it had a long note to Aubrey about being strong. Emily looked down at the unused box and burst into tears. "Why mom? why? I don't understand because it seems so unfair!". Mike saw me tear up and he responded, "Emily it's just random chaos........when it makes sense for those that are sick it makes no sense for those that aren't. Right now no one will have the right answer". True.

I told Emily that she needed to let us know when it was the right time to leave the hospital and she took that literally. Hours later we were still in the ICU wing. I think Emily wanted to see her friend Aubrey, but it wasn't the time. I also think she was really worried about her friend Kaylee and didn't want to leave her either. So we were in a bind. So therefore, I texted my sister who is a youth pastor and asked for her guidance. Soon I sat down next to Aubrey's loving  but shocked friends and said "My sister is a pastor and she is going to come pray with you guys and then it's probably time to leave so the family can have some time to themselves". Tracy had pushed this too and he knew it was time to go. The girls were so mature and just accepted that explanation. So my amazing sister showed and held a large prayer circle in the ICU unit of JPS. We all joined hands and while in the midst of prayer even more people came and nudged their way in. Hands were grasping other hands without a glance. My sister spoke the perfect words and everyone on our side was finally able to break apart for awhile. However, my heart ached for Aubrey's parents who I knew were struggling with her loss. I wasn't even sure what to say to them. This wasn't my personal loss............or maybe it was a loss through my child's innocence, but no one knew Aubrey's parents pain........no one.

In my life I have shared the loss of many people. My mother was only 28.......Chris was 15, My grandmother, grandfather, aunt, Luis at 18, and so many more. It really doesn't matter how many funerals you attend, it never gets easier especially when it's unexpected and that of a young amazing life. It's also never okay when it's your own child. So tonight I sat the Aubrey's vigil and my friend Melanie sat next to me. I realized that life had come full circle. We laid our friend Luis to rest at only 18 together and now we sat with our children as they laid their friend to rest. My heart broke for her family just like it broke for Luis's so many year ago. We supported each other during the vigil and found our children after. Life is cruel it seems no matter what age you are so all you can do is trust in God's plan.

I cried so much today. My main reason for crying is because I cannot imagine what Aubery's family is going through. It's just to much to comprehend. Tonight Emily asked me, "but Mom what will her parents do with all her medals and specials awards". (She was named all around best female athlete at their school). I said "Well I Guess they will just............cherish them".  They will just celebrate her amazing life Emily and what a life that was."

Maybe they will feel like this one of my most favorite quotes, 

“How very softly you tiptoed into our world, almost silently, only a moment you stayed. But what an imprint your footsteps have left upon our hearts.” Dorothy Ferguson

This was someone's newborn, someone's sister, someone's daughter, and someone's friend.

This is not my tragedy, but it's one I felt needed to be shared because I know the loss of an amazing life. Emily and many others like Kaylee do not understand this loss. So I think we should be there, but only if they need us to be.

Jude, Emily, and marketing

Last night we kept Jude up until 10pm. I had to take Emily to cheer again so he watched TV with his dad. Once I got home I got him ready for bed and he didn't put up any fight. He also slept pretty well except for one large startle seizure. So maybe the trick is keeping him up a bit later than normal so we can get sleep. However, he still wants me to hold him when I get home, but I really enjoy that. He is getting so big that he is over half my size but I will hold him as long as I can. He just smiles when I cuddle with him and it's very cute.

Emily is doing very well. She joined a competitive cheer team to fast train her to try out for high school cheerleader. She knows I am not a big fan of cheer, but it's something that she really wants to try. So therefore, her dad and I decided that we would let her. So far she loves it!! She is also starting back to school and is going to be a freshman..........where has the time gone? In addition to school she is beginning training for Miss Texas Teen in November. She had some photo's taken this past weekend for her headshots and I am trying to patiently wait on the proofs. I am so bad at waiting! So I am hoping Emily has a great first year at school.

So anyone that knows me knows I am multi marketing Jenn. I am an insurance agent, I run Emily's charity, I sold Scentsy (about to sign back up), and now I am on the Plexus band wagon. I am NOT one of those individuals that believes that you can just take a magic pill and all your weight just comes off. However I do believe you can have a great product that can boost start your weight loss. Then just control your eating habits and get to walking some or some sort of exercise. Anyway, a friend of mine has lost 85 pounds in the just a few months on Plexus! I have watched her transformation and I am amazed! She drank 1 Plexus Slim and took 1 accelerator a day. I was worried about the accelerator because of my heart condition, but I haven't had any side effects. So if you are interested in joining me on this journey here is my website:
http://jenniferortiz.myplexusproducts.com/
 We can lose weight and feel great together :)

Botox and Jude

Jude needed to be repositioned several times last night. He would start whining and I would drag myself in there to flip him or pat him. I am not sure if his legs were hurting or if he just wasn't feeling that well. He seems to be getting a bit congested and has a small cough so it's a toss up if it's his legs or allergies. Charlotte said he slept until 9:15 so I guess he made up for some of the sleep he was lacking.

His Botox appointment is set for October which is the same time as the follow up with the Ortho. My gut reaction is that we should take him for the Botox and then take him to the ortho so he can evaluate the effect the Botox has. The therapist told us that any time Jude is on his side they want a pillow in between his legs to keep his femur from extending past his hips. We generally do this, but it's a good reminder to everyone.

Here is a picture I posted of Jude the other night. I had just gotten home and was telling him "Hi". This was his reaction. So cute.

Botox

So the neuro is looking at increasing Jude's Artane by 1ml a day to see if it helps with his legs/hips. We also are receiving a referral to a neurologist at Cook's that can perform the Botox injections to help with his pain and rigidness. Jude's current neuro doesn't do the injections.

We are working on figuring out the house situation with Jude and his need for the roll in shower. We have two choices which are move or remodel our currant home. Our current home is ideal and we have a great deal on it. Plus or credit is pretty shot after what happened several years ago with Jude. However, our current home presents a HUGE problem with the bathroom conversion and it's presenting to be a very large expense. There is just limited room and limited drains for the plumbing. So I am not sure what the answer is, but we are working on it.

This weekend we have 10-5 nurse time on Sat and Sunday and we have about one million things we have to cram into those hours. Emily needs school clothes and more. So we will be very busy bees this weekend. She also talked me into letting her try cheer this year. So we drop her off Sunday for her first session. I am not sure how I feel about it, but she is really wanting to try.

Overall Jude seems to still be doing well. He has been waking up everyday with seizure activity at 4am. It takes awhile for him to settle down to go back to sleep, but he eventually does. I always check his diaper when I walk in there, but it's dry. Charlotte says he likes to save it all up until about 8 and then he decides to make everything wet. He is a character!

The Regal Princess Pageant update.

For those of you that don't know I run a talent/pageant competition every August. It's called Regal Princess. It's a pageant for 0-11 months thru 21-up. We also host a separate talent competition. It's a lot of work, but it's worth it.  I wanted to create a pageant that teachers girls that being pretty on the inside makes you beautiful on the inside. While working the system I go into what my friend labels is "pageant mode". I keep myself calm and I can seem like I am a bit zoned out but it's because I am running schedules in my head, going down inventory lists, and watching everyone around me. So I wanted to post some things I noticed this weekend.

I noticed my aunt who was in from Missouri watching my cousins still taking the time to drive my cousin Faith back and forth from the pageant to help me with side work.

I noticed our neighbor across the street who has become like family there before cheer, after cheer, and any time he could be to help me with props, crowning, and more

My husband who showed up on Sunday knowing I was 100% wiped out exhausted after 8 hours of sleep in 72 hours and took care of everything. He closed out bills, swept everything on carts, and made sure I had everything I needed to go home. He also walked me to and from every room and bathroom to make sure I was okay.

My daughter who got just as little of sleep as I did who emcee'd for the first time on her own Friday night and who worked her tail off helping me. My daughter who begs every year when I want to give up, "Mom please keep doing this".

The amazing little girls who hugged my neck and said "Thank you Ms. Jenn I had the best time ever!" (made me teary)

The moms who said "I really appreciate all the little things you did to make the weekend special for my daughter!"

My daughter's best friends parents who printed for me and worked back stage long exhausting hours

The hotel who goes above and beyond for us. Whom I told "the royalty party will be Alice in Wonderland this year" and they presented this.........

I noticed my nurse at home taking care of Jude and allowing me to run back and forth from the hotel to Jude to give him kisses without complaint.

Marilyn who set there in registration running everything she could to make it smooth and seamless for contestants.

My lifetime queen and her mom driving over an hour everyday just to help out.

 

 

 

 

I noticed my friend Dane offering to do our Queen of Hearts hair/makeup without charge just to make her day better.

 

After driving for 12 hours I noticed the amazing stage our photographer set up based on my requests. I was so impressed.

How about our beautiful Kaylee who sang amazingly to open our grand finale show

and the incredible Julissa who ushered in our royalty with her fabulous dance.



 

I work to try to teach the girls about the importance and the impact of customer service. We had a People's Choice award this year. Everyone could donate $1 per vote and all the proceeds went to benefit Kidds Kids in the honor of Kidd Kraddicks memory. I gave the task to Julissa (above) and another royalty Ashley. I explained just how important this task was and they immediately set a goal to raise $550! They actually far exceeded their goal and we mailed off a check to Kidds Kids yesterday for $772!!! These girls are truly amazing. I am SO impressed. The little girl that won the title is shown below. Isn't she darling?

 





 

 

At the pageant we give another two very distinguished awards. The first is the Emily's Smile Box scholarship award. Girls submit their community service work that they do throughout the pageant. Here is one of the finalists with Emily.

 



 

The winner was Abby Belcher. She started a foundation that focuses on stopping bullying. She barely got to crowning in time because she was in DC lobbying congress to start laws for anti-bullying..........a lot to do for someone so young.

 



 

Our next award is called the Queen of Hearts. This is given to someone who despite facing a tragedy or a difficult situation provides inspiration and hope to others through a positive attitude. This year we picked Mikaela Hudson. Her brother has RTS which is an affliction that affects only 600 people in the world. Mikaela is always there holding her brothers hand and helping him every step of the way.

 



 

Our next Queen of Hearts was Margaret. Who despite being in a massive car wreck still keeps a great attitude and even still attends her competitive cheer gym. I am going to post her picture and then her video we showed and I encourage you to watch it.

 

 

 



 

 

The entire group of girls that competed this weekend were beautiful and special! I wanted each one of them to remember that. The best compliment I have received by far is from someone that said "Jenn your slogan should be .... So much more than a pageant". I think I will go with that. Thank you to my friends, family, and all the contestants for making this such a fun and positive weekend. I hope someday you can look back and have learned some valuable lesson and remember the fun memories.

 

If I didn't list you on this blog just know that I NOTICED everyone and everything. No work and no help when unnoticed. See you next August ;)

 

 

 

Photo's courtesy of Labelle Fille
Kidds Kids: www.kiddskids.com
www.theregalprincesspageant.com
www.emilyssmileboxes.com