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

A kitten that thinks she is a puppy, Jude, and Emily.

Emily is finally home from vacation safe and sound. I was very happy to see her! She had such a wonderful time and is so blessed to have an amazing second family that takes her with them on vacations. She even brought Jude a bear. She is becoming more of a little grown up. She thought of her father and sent him a text asking him to take her to dinner because she missed him and she thought of getting Jude this bear on her own. I am proud of her for putting others first.

When I got home last night Paislee the little kitten came galloping to the door to meet me along with Mike's dog Spot. It was really a funny sight. I have a kitten that thinks she is a puppy. She is very curious! The other night I was in the bathtub and she just couldn't fathom why I was in water so she got so curious she fell in :/. She is still very kind to Jude and naps next to him everyday.

Jude is doing alright. He still has pain in his legs but it's manageable. We go back to see the Ortho in October and we will know more on the surgery. This weekend I am running Regal Princess. It's exciting, but I am missing someone at the same time. I look forward to a great weekend and crowning our queen of hearts and Emily's Smile Box scholarship winner.

Jude's legs.

When I got home last night Jude was pretty calm and happy to see me. My sister came by and brought my nephew and Jude always smiles at her baby.  Jude wasn't very fussy yesterday or stiff in his legs.

Mike told me after speaking with the therapist and Charlotte that he gathered Jude has probably been in a lot of pain from his legs the past two months. This would provide an answer as to why he is wanting me to hold him all the time. He probably just feels more comforted that someone is holding him and patting him. So while I was putting him to sleep last night I thought about the surgery he will have to endure. I know many CP children have this but my child hasn't. I hate the idea of him being wheeled off to an OR. I also hate the idea of him waking up in pain. The thought of them breaking his bones or slicing his tendons makes me cry. Mike said he will probably feel much better after the surgery, but it still make me sad to think of him in pain.

Hopefully the Botox injection will provide some relief. Last night Jude was whining in his sleep so I went in his room, stretched out his legs, and massaged them. It took about 5 minutes and he fell back to sleep. I guess they are probably right about the current pain.

Much better and Jude's surgery

I am in much better spirits today! I was able to sleep pretty well last night and I woke up refreshed. I also woke up very thankful for friends, family, and my husband.

Jude's therapist came out yesterday and said she believes his hip displacement just started recently. She also agreed that the Botox injections should help some. She informed us about what it will be like after his surgery. She said he could be in a double cast up to 6 months, his diapers may not fully fit, and that it's not easy. Well, we didn't think it would be. She said we would qualify for full time nursing with the surgery, but I am not sure we would want that. We can take care of Jude when we are not working. I guess I will just need to see the extent of what this will involve. I have seen several moms on my Facebook post pictures of their children after the double hip surgery. I am sure the doctor will go into depth on what to expect, she was just giving us a heads up. I am having a hard time imagining picking him up and caring for him but people do it every day.

For Emily's 16th birthday she wants to go on a trip. She keeps asking to go to Disney World, but that's hard to think about. It's hard because we feel like Jude should be able to go, but we understand he can't. So do we pick some place else because he cannot enjoy a place that's created for kids or do we take Emily anyway because it's her wish. It's an emotional decision.  Since Jude's surgery is lurking in the future I have decided to try to make this trip work for her after the first of the year.

So the other night I had the new kitten up on Jude's tummy as I was holding him. I noticed he kept darting his eyes at her and smiling. I asked "Jude is that the kitty?" and he would smile big. So this morning Charlotte tells me that the kitten and Jude nap together. When they wake up she has noticed Jude really looking at the kitten and smiling. So I think she has been a big benefit for Jude.


Make it a great day!

This is much more me

I took down my prior blog. I figured the parties that needed to see it probably already have. I decided it's just not me. It may be the way I feel, but angry and bitter aren't generally a part of my life. So I am dusting off the negative and moving forward.

I decided to just focus on what's important

 

 

and to leave you with a positive thought for the day

and to accept all things kind, loving, and good into my life.

A little rough patch or two

I have had a trying couple of days and nothing I want to elaborate on. Sometimes someone forwards you a poem that seems to fit perfectly with what you are feeling. I really liked the line I put in bold. No one is perfect and I choose to learn from the lessons given to me.

"People come into your life for a reason, a season, or
a lifetime. When you figure out which one it is, you
will know what to do for each person.

When someone is in your life for a REASON . . . It is
usually to meet a need you have expressed. They have
come to assist you through a difficulty, to provide you
with guidance and support, to aid you physically,
emotionally, or spiritually. They may seem like a
godsend, and they are! They are there for the reason
you need them to be.

Then, without any wrong doing on your part, or at an
inconvenient time, this person will say or do something
to bring the relationship to an end.

Sometimes they die.
Sometimes they walk away.
Sometimes they act up and force you to take a stand.

What we must realize is that our need has been met, our
desire fulfilled, their work is done. The prayer you
sent up has been answered. And now it is time to move on.

When people come into your life for a SEASON . . .
Because your turn has come to share, grow, or learn.
They bring you an experience of peace, or make you laugh.
They may teach you something you have never done.
They usually give you an unbelievable amount
of joy. Believe it! It is real! But, only for a season.

LIFETIME relationships teach you lifetime lessons; things
you must build upon in order to have a solid emotional
foundation. Your job is to accept the lesson, love the
person, and put what you have learned to use in all
other relationships and areas of your life. It is said
that love is blind but friendship is clairvoyant.

Author Unknown"

Jude is alright. He is still wanting to be held and needs Motrin at night, but overall he is a happy boy. I sat and held him for hours last night. If I sat him down for any reason he definitely let me know he was not happy about it. I have been experiencing continuous headaches so I am heading to the doctor myself on Wednesday. I am sure it's nothing serious, in fact I bet it's muscle strain because Jude is getting fairly big...but that's a good thing! He needs to grow and be a happy healthy boy. I plan to call the neurologist tomorrow to go over what the ortho doctor said and to talk about the increase in the Artane to help his tone.

Update

Jude has been pretty restless the last couple of nights, but he still smiles for me when I pick him up. I am not sure if it's because he is having pain in his legs or if he has something else going on. His color is GREAT, he is breathing wonderful, and as long as you are holding him he is very happy. So he could just be experiencing some growing pains or he may have another issue starting. I personally think he just has some growing pains. Mike has been pretty upset at the fact that Jude has to have surgery, even though this is something we knew would happen.

We are both very upset over recent postings on Facebook regarding people losing their children. Tonight Mike walked through the door bawling regarding a post my friend Gena put up. He looked at me to cry and I replied, "God has taught me that it's not the one you suspect will pass but the one you cherish that you think will be with you always that you lose. So you love each and every one for as long as they are here and you love them long after that too. You appreciate everyone you can because you just never know."

The stories I hear affect me. They make me realize that no matter where I am that I should love everyone I can for as long as I can.

Surgery

Mike took Jude to see the ortho today. As Mike put it the news was "Not something we want to hear but not something we haven't already discussed". They did an X ray of Jude's hips and one is 50% out and the other is 90% out. This is his first X ray so this is now the doctors baseline. However he said surgery is inevitable. As time progresses this will begin to cause Jude pain. Their goal is to get Jude Botox injections and increase his Artane to buy some more time for him to grow. They have set a follow up appointment in October to reevaluate the situation. Our thought process is that the surgery will be after the first of the year.

They will do double hip surgery and then look at adjusting the ligaments in his foot to keep his feet from turning.

Not the news you want to hear, but we understand why it's required. We have done the braces, standers, etc. It's just the way the body works when it doesn't get to walk around.

Still sucks even though we understand it.

a whole lot of updates!!!

My head is full of varying topics today and I am not feeling well so let's hope this blog makes sense. I will also try my best not to ramble to much. Jude has been doing very well lately. He looks healthy and he is smiling a lot. Not to mention that he is really looking at us in the eye again. Thursday afternoon he has an appointment at Cooks with an orthopedic doctor. Jude's feet are really turning in and they seem to be starting to hurt him. We put his braces on and he does use the stander, but they still hurt. We will find out more from the doctor.

So this past weekend my family came in from Springfield which was very nice. Emily loves being around my family. She also tends to be very close to my aunt Caron. She kind of adopted her as her grandmother since my mom passed away when I was 7. Emily can get very touchy when it comes to the family doing things without her so we always have to explain to her about immediate and extended family. It's sometimes hard for her to grasp the concept. Anyway, my family does an amazing job of loving and including Emily and they even asked her to join in their family pictures. This is of my aunt and her "grandkids".

 

 

 

The Emily's Smile Box day went fantastic! I cannot say enough about The Ranch At Lonesome Dove! If you need an amazing party, wedding, or charity event contact Mike over there to help you out. The day started at 9:15 when Emily and her dad were registering people for the 3k/5k race that she wanted to support Jude.

 

At the beginning of the Race we had great signs donated by Hawkeye printing. They were so cute and we had one explaining Pediatric Stroke risks and what to do in the event of a stroke.

 

 

Someone actually gave her a bull horn!!! This is Emily announcing the start of the race with Miss Tarrant Katie Sicula. Katie will compete for Miss Texas USA in August and Emily will compete for Texas Teen USA in November. They have become friends and she is a fabulous role model for Emily

 

 
                                          Nurse Allen joined in the festivities along with Jude

 

Emily's best friend, Emily, and Faith enjoy a hay ride after the race

 

 

The official sponsor of the day The Anderson Team with Coldwell Banker in Keller, TX

 

 

We made 250 boxes to benefit local hospitals that were taken and distributed by volunteers

 

So it was a great day! In addition Emily received two more great donations that will fully cover the Christmas box making party and the start of the 2nd annual Emily's Smile Box day next year. We did learn some things. We will have the run either much earlier or later in the day, we will time the racers, and we will have a few more activities on hand. All in all I think it was a success. (Oh and after the event we received two auction donations for next year and Emmitt Smith signed football and a Jim Palmer signed baseball).

Lately there has been a lot of negativity on social networking sites and in the public due to recent tragic events. I enjoy social networking.........I truly do. I love looking at people's pictures they post and staying up with friends lives. I feel it a blessing that were have been given such a remarkable tool I our lifetime. I know some people find it annoying, but I personally love it.  However I read a lot where people can get overwhelmed with the negative. I think it may be the fact that I am getting older, but lately I have just breathed easier. Try not to let life get to you to much and try to see what's important. It's easy to hide someone on a social network site or just skip right past anything you think won't improve your life.  I have decided to just love all my friends and family for each unique contribution they supply to me. Everyone is different, but I firmly believe that everyone in my life has something beautiful to offer if I allow them to. However it takes stepping back and seeing their beauty to truly appreciate them.  

Lastly, I will close with a show I highly recommend you watch. It's called "The Crash Reel". For further information on it you can click here: http://www.nydailynews.com/entertainment/tv-movies/crash-reel-tv-review-article-1.1397400 By chance I stumbled across this program last night and decided to watch it. By the end of the program Mike and I were in tears.........but not bad tears appreciating tears. I became interested in this program when I saw that the parents were not only helping a son with a massive traumatic brain injury, but they were helping their son with Downs Syndrome too. I don't want to go into the whole story and ruin it for you, but it's really worth watching. It's the first time I have wanted to reach out and write a family to tell them how inspiring they are! I also wanted to say, Holy awesome house...I love it!

A shave and a haircut....

The doctor did increase Jude's Artane intake. So far he seems to be doing very well with the change in medication. I have seen a few bruises this weekend, but they are on his arms and he likes to hit his toys hard.

Jude's hair has been getting very long again and I have already blogged about how excruciating it is to give Jude a haircut. It's just awful! He hates the buzzing noises of the clippers and it is just miserable for him. So tonight we decided to sedate Jude and I insisted on cutting his hair myself. Mike was taking Emily to get a new PS3 game and I assured him that I could handle cutting Jude's hair! I kissed Jude softly before I gave him the dose of Valium and told him goodnight. I sighed heavily as I administered the medication and felt horrible I had to sedate him. I waited about 15 minutes and then laid Jude softly on the yellow wedged mat. I began to quickly trim the hair away and Jude looked at me curiously. I assured him the entire time that mommy was just helping him out. He was calm......which was good. The whole process took under 15 minutes and then I ran him a warm bath. I struggled (with my back) to get Jude into the bath and I once again admired Charlotte's strength with Jude each day. I washed Jude off and talked to him sweetly. I then moved him to the bed and covered him in baby lotion. Then I snuggled him into a fluffy blanket and let him fall fast asleep. I kissed him gently on the head and told him to have sweet dreams.

I sometimes struggle with the fact that other people are caring for my child. I shouldn't, but I do. I feel guilty! I am so good at running an office, my own business, and more.......but home is not as well rounded. I don't get a lot of time to clean and when I have the time it's NOT what I want to do. Jude's schedule of doctors appointments are scrawled into my work calendar, but I know I miss some days. However, our family has been blessed. Some how God knew that I needed relief in some form so he sent the most amazing nurse to take care of Jude. Many people struggle with leaving their kids. Many people struggle with finding a good nurse. I guess God just knew that due to my past I would feel the need to continue working to care for my family so he sent the most amazing most organized human being to care for Jude. Charlotte organizes all of Jude's medications and if he needs a refill of medication she now has the pharmacy delivering!! We don't even have to wait in line anymore. His therapists all are on perfect schedules, his so thoughtful teacher just comes to visit, and his doctor visits are fine tuned on the calendar. She even sweetly helps Mike's blind mother around on Fridays as his mother pats and sings to Jude. Charlotte is amazing she is one of a kind. Sometimes early in the morning I answer the door in a haze and Charlotte just knows it's been a long sleepless night......and she doesn't judge. I drag myself back to bed for a few minutes before going to work and when I get up Jude is all smiles. She is so good with him!!! She baths him, washes his linens, and just loves him. On top of that we have a great weekend nurse that looks after Jude too. Don't ever mistake that I don't know our blessings because I really do.

A happy Jude and a a hyper Jude

Well hmmmmmm

That's what I think a lot when it comes to Jude. He is a happy little fella lately. All smiles when I get home and he tries to talk back to me when I speak to him. He opens his mouth real wide like he really wants to get some words out. I posted this last night on Facebook.

However (yes there is a however) Jude's very toned out lately. He seems very rigid and his therapists are having a hard time working with him. His startles have also increased and they are growing more violent. Startles look like full seizures and are brought on by loud noises. We also have noticed some bruising. The nurses asked about increasing his Artane (for tone) but I want to talk to the doctor first.

So here are my thoughts.
1. The bruising I believe is from his AFO'S (leg braces)
2. This could just be a tone issue so it may very well be easily resolved with the increased Artane
3. I began to wonder if this is possibly a reaction to the seizure medication.

I began to add some things up in my head. I had mentioned in a blog some time back that at Cook's they told us Jude's red blood cell county was down. They chalked it up to slight anemia. They said it was so slight there was no issue. Then I began thinking about his recurrent infections lately, and his hyper tone, and his blood cell count. You can Google Felbatol for additional information regarding what we look for with this medication. However, if it is the drug I am not sure there is much the doctor will do. He told us there would be possible side effects with it but that is was the last resort drug for Jude. Hopefully, if it is the medication they can scale it back and increase the Depakene.

Honestly, I think it's all a guessing game with the medical field just like it is for us. Is it something as simple as increasing the tone medication or is it something more complex like the seizure meds.

I put a call into the doctor so we will see what they think.

The full story of the 24 hour debacle and a few things about me.

Last week we decided to make an impromptu trip to California for business mixed with half a day of pleasure. Mike knows I have full panic attacks in traffic so he offered to come with us and drive. He told me how terrible the traffic is in LA (boy he wasn't kidding) and that he didn't want me to have a heart attack. I asked my friend Gena to stay with Jude. She is familiar with G buttons and loves being around him. So when the nurses left on Saturday and Sunday she filled in. Now before I start telling you our tale I want to explain that I have a recurrent nightmare. I am always around 15 hours away from home and I cannot get to Jude or to work. I am absolutely panic stricken. We hardly ever travel for longer than a day or so because of Jude. I just don't want to be away from him for to long.

We flew with my friend Gina who is amazing and always works out "non-rev" tickets for us. Which means we fly stand by and simply pay the taxes on our tickets vs. a full ticket price. We wouldn't be able to travel without her. Gina is the master of flying like this, but I am still learning. However, I have been pretty educated in the past few years. Since we are non rev we have to wait for empty seats that aren't being used. Generally we look at the flights to see if they are showing seats available and if so we mark ourselves on that flight. Next we look at return flights and do the same. We generally always leave a few other open flights after the initial time just in case something happens and other options into other cities if necessary. Well this weekend turned into my nightmare. On our way home we went to check into our flight. Gina sat clutching her phone connected to the companies website watching as people checked into the flight. She turned to us and said "there are 14 non-revs and there are exactly 14 seats...we will make it". You always have a little sigh of relief when you know you will make it. However, I noticed the gate clerk wasn't checking the flight screen like they normally do and wasn't looking like he was assigning any seats. He just seemed...........flustered. So we got down to when the plane would depart and I noticed he printed all the tickets up and laid them on the entrance to the gate. He looked at us and said "I will be right back". He was gone about 10-14 minutes and he was coming back in we noticed the plane............was backing out.... WHAT???????? So Gina rushes to the desk "Sir there were 14 empty seats on that flight!!". He said "we aren't holding a plane for non revs" rudely. Then when asked if we would make the next flight he replied "No, there are 5 seats your aren't making it" again rudely and walked off. Oh the foul language that swirled within that airport is still lacing the skies!! So our adventure started. Those 15 (we soon found out it was 15 empty seats not 14) non revs all rolled to the next flight to DFW. That flight had new people that had more seniority and therefore they were placed in seats first. So then we all rolled to the next flight and we are over 30 non revs now. Mike called his brother who works for a different airline and he got Mike listed on that flight. We had to get one of us home and he was the first one who could get out. He kissed me goodbye and sprinted across the airport leaving blisters on his feet. There were 3 seats available and Mike was number 4th on their non rev. We all gritted our teeth texting back and forth and suddenly Mike got a seat!! I breathed a little easier.

Searching for seats for us continued late into the night until the last 1:10 am flight.......was over sold. Emily looked at me "Mom what does this mean?". "This means we are sleeping on the floor Em!". The gate attendants talked to Gina about what happened and confirmed the gentleman we originally dealt with has serious work issues. The manager was the one that explained there were actually 15 empty seats and he didn't seem very happy with what had transpired. We explained that we understand being a non rev has it's risks for any departure but that being treated less than human isn't nice! He agreed. So the sweet gate attendants went and got us all lovely blankets and pillows. We found a corner in terminal 47A and we all snuggled in. Gina looked up to our swarm of people and said in her friendly Cinderella voice, "Good night everyone!! sweet dreams!!" She always makes everything brighter.

Early that next morning we woke up to a literal sea of people flooding into the terminal. It took me a minute to realize there was an issue. Our first flight......over sold. Second flight........over sold. By the time the third flight arrived the entire terminal was a maze of people, baggage, and cell phone wires. Then we heard the issue. There was very severe weather in DFW and 40 flights had been delayed or cancelled. OH MY WORD.....this was bad. I began texting some friends that work for the airlines. They had different suggestions and my mind was swimming. The wife of a captain that has flown for more than 40 years looked at me and said "This is the worst I have ever seen any airport" even she couldn't get out. We were now at over 100 non revs. Emily and I were 68+67. The nice ticket agent looked at every single flight going out of the airport, orange country, and Ontario. She nicely said "Honey your probably not getting home until Thursday". I called Mike "find us a ticket on S". By a slim chance he found 1 trip with a stop in San Antonio left. It was on a web special and it would only be about $150 more than what our non rev cost was and that's for both! "BOOK IT" I exclaimed. Gina even booked too. We then went and changed into more comfy clothes, grabbed our bags, said goodbye to our new friends, and headed for the new terminal.

We went back through security and since we were now pros this process was very easy. We then sat and waited to be called for our new flight just waiting for the other shoe to drop. Then we heard it "This flight is over sold if anyone would like to give up their seat please let us know.". Under my breath you heard "Oh hell no you better FIND me a seat!" Once we boarded the aircraft I let out a sigh of relief. We flew through turbulent rocky weather and had a double bump landing and it really didn't phase me. I was so happy to be going home I could care less about my prior fear of flying. I am 100% over that now! I could have hopped in an air balloon and steered it home.

Mike and Jude were waiting in the parking lot with open arms. Our 24+ hour debacle was over. I looked at Emily and said "let's take this as a lesson! We had to sleep on the floor for 1 night and were miserable for 24 hours........many people do that every single day in the world". She nodded in agreement and she seemed to really get what I was trying to say.  I also told her that everything you do whether positive or negative has a trickle affect on everyone around you. In this case one persons actions affected hundreds.  We also met a very nice man on our plane who wants to contribute to Emily's Smile Boxes so we chalked it up to, everything happens for a reason!!

In another totally different thought... I just wanted to confirm a little bit about who I am. It's not directed at anyone. I just hear some comments sometimes. 1. I love facebook........a lot. I love social networking!! I advertise all three of my businesses on there and have written more insurance than I can count thanks to facebook. 2. I am super proud of my kids. 3. I love Emily's work in her pageants...I enjoy talking about them and sharing her pictures. I enjoy dress shopping with her and showing those off. 4. Sometimes I get so wrapped up in work and my kids I forget to reach out to others but know I love you all the same! 5. I try not to judge you so please don't judge me. 6. I am picture obsessed. I love sharing them with people. 7. I am over sensitive a lot. I take things to heart if you say them or react in certain manners. It's just me so try to ignore that part of my personality :). 8. I am a HUGE nerd. So I am just me.......take me or leave me.

Anyway, just wanted to share those things. Jen out and glad to be home!;)

A big huge SIGH (not of relief).

We are suppose to fly out to CA Saturday morning so what happens last night. Jude was rigid, didn't sleep well, and acted anxious. This morning his nurse said he had diminished lung sounds in his lower left lung.......here we go again. Jude is not running any fever yet which is good. Charlotte also said his lower left lung opened up after the breathing treatment but it still "sounded different than the other lobes". So I put a call into the pulmonologist, but he cannot fit Jude in until Monday and even they said "Jude doesn't normally wait". So I had to put a call into his primary care giver and leave a message. If she cannot get him in they suggested urgent care again. However if we go to urgent care we are going to ask them to do the X ray and then conference with his pulmo to get the accurate medication dosage.

So what do we do? Do we go to CA overnight or do we stay and watch Jude to see what happens. I am not sure. My gut tells me if we get him in to be checked out he will be fine overnight until we get back. My gut also tells me if we are dealing with aspiration pneumonia for the 7th time...........well that's not good. Jude throws up even with the Nissen. We keep him upright. He is turned to his side after he eats. We has his elevated bed, wedges, compression therapy, vest, etc. It just happens.

I understand the process. I told a friend today that as I researched online I found this information

"If you continue to aspirate, you could have long-term inflammation of your lungs. This can cause you to get aspiration pneumonia again and again. Your lungs may slowly fail to pump enough oxygen into your blood. You could develop a blood infection called sepsis, or a lung abscess. This means part of your lung tissue begins to die. Any of the risks of aspiration pneumonia can be life-threatening."

They tested Jude for sepsis last time....which now makes sense. They understand that continued aspiration pneumonia causes other problems. I understand why they wouldn't relay this information to non medically educated moms. Reading things online or educating myself doesn't scare me. I don't panic or go into a shock mode. I simply understand it's the way our delicate human bodies are made and work. I think it helps me deal with finding the right treatment and future issues. Well that and faith.

So we will probably be hitting a clinic of some sort today just to insure he is alright.

It's ok to say no and all is okay

Jude is doing well. He threw up on Sunday night and sucked the throw up back down into his throat before we could race to suction it so we are looking for signs of aspiration pneumonia. However, so far he is nothing but smiles and happy.......as long as mommy is holding him. He is still very vocal if I don't hold him. So we set an ortho appointment for Jude for July. His legs seem to be giving him some issues and we are going to find out what else we can do for him to alleviate the pain.

On the other side of life things are doing very well.  Emily's Smile Boxes is still sending out several packages a week. She is also planning her 5th anniversary party and it's growing rapidly. Mike's job is still well and so is mine. So for the most part our life mimicks something normal. We are enjoying it.

After my blog post that upset a reader I decided to re-evaluate things a bit in my life and I realized I had forgotten who I was a bit. I had not truly found my tongue for a long time.  I thought I had posted something really wrong and then I realized I just posted what I felt.......and that was OKAY! I didn't want to read anymore horrible tragic stories for awhile. These stories being sent to me were not associated to Emily's Smile Boxes, my personal blog, or anything else and it was truly okay to say I didn't need anymore additional stress. It's okay to say ........no. I try to teach my daughter that now that it's okay to say "I just cannot do that right now".  Sometimes we have to protect our own frame of mind and emotional well being.

I am feeling pretty rotten today. I think it's allergies, but whatever it is it's whipped my tail. I am ready for my bed. I think I will go home and take Jude into my room and flip on the TV.

A vacation and a plea

I believe a huge issue special needs moms deal with is guilt. You feel guilty for what happened to your child, anything that continues to happen to your child, for going back to work, and for not paying enough attention to the rest of your family. I believe there is some form of guilt issues swirling around in every moms head, but it seems they triple with a child with special needs. I dealt with guilt issues when Emily was sick as a child, but it's even worse now. I am not sure why.... it just is. Maybe it's the understand that Jude's life is so fragile...but isn't every life?

Special needs moms feel like if they speak about the secret guilty wishes they have then everything could collapse. We should just be thankful when our lives mimic something in regards to "normal". If our child is healthy, our jobs our safe, and our family is well.........that's all that matters..right? It is and it should be!

However, I found myself missing private time with my husband. I miss being able to go off on intimate vacations, staying out late, and acting crazy. I held my breathe as I typed this because I would give everything including my life to just keep Jude with us.

However, I couldn't stop thinking about my incredible honeymoon with Mike. For the first time in a really long time I missed just being.............still. I missed laying on a bed with the ocean breeze streaming through the windows and not a worry. Then I snapped myself out of it and reminded myself I have a whole lot more than many other people do and to be very very grateful! I looked around at my nice house, my beautiful family, and I realized what's really important.

After receiving a message I decided to rewrite my last paragraph of this blog. Sometimes we mean our blogs to portray exactly what we are thinking at the time we write them and when reread that sound completely opposite of our thoughts. So let's try this again. Five years ago we found out Jude had a stroke and five years ago Emily started her charity. In those past five years we have received thousands of stories and requests for Emily's Smile Boxes. These stories are tragic, sad, and sometimes hard to read. Many times these stories have ended in the death of the children we send the boxes too. It can get overwhelming, but we signed up to do this. Emily can no longer read the stories with each request as they take an emotional toll on her. However, I read them and relay to her if she needs a box made for a boy or girl. However, over the past five years I have also had well meaning friends/family send me a lot of random struggles of people on the internet or acquaintances through facebook.  I know it's with good intent. They think because we struggle that we will want to see someone else struggle too, but that's not the case. It's different if people reach out to me through my blog or through the charity requesting a box. When you send us other stories without requests for boxes and just for us to read for the sake of reading it's just more sad stories on top of sad. Make sense? I guess my point was that I read a lot of blogs of friends we have that struggle. I see a lot of struggle everyday through the requests through the charity. I hear a lot of struggle through the emails I get through my blog. So rest assured I see these stories everyday and relate to them. I help others as much as I can, but sometimes all the stories take an emotional and physical toll. So if I don't know them, or they don't need a box, or you don't know them personally sometimes it might be okay to skip sending me one or two of the sad stories you run across. It might save me a few tears that day.

A giggle or two!

Jude seems to be doing well lately. He is very smiley and social with all of us. He is going through a mommy phase and wants me to hold him as soon as I get home. If I set him down for any reason he expresses his displeasure very loudly!

He was running a low grade fever on Wednesday night of 99.5 axillary. This concerned me because this is how his last pneumonia started out. I don't even want to think about Jude getting pneumonia for the 7th time! I am not sure his little body can stand it again. Luckily the temp has stayed normal since then.

Here is a short video to show you show funny he thinks dads bee noises are.

The reason behind my "Turtle" post and my stance on Gay rights

Jude is finally doing much better. He is full of big grins that include his full dimple when he is smiling. He is still congested, but that seems to be a normal issue now and we have learned to work with it. We administer CPT (compression therapy), massage his chest to get congestion up, and position him in the best manner possible in case he chokes. His therapists are back to a regular schedule and his teacher is now coming back to the house.

Emily is also doing well. She has made 25 Emily's Smile Boxes to go to a toy drive for Oklahoma children affected by the tornado outbreak. We also purchased toiletries and so much more to send to the hard hit Carney OK that isn't getting much attention. Em also asked if we could go help some of the victims this weekend and I told her that we would try. If we don't make it to Oklahoma we are striving to make it to Cleburne TX.

So today in Grapevine (my work town) they voted to allow openly gay young men to join the Boy Scouts Of America. Honestly, I am not sure why this was ever a debate up for a vote. We all have our own personal preferences whether it be men or women or Hispanics or Caucasians. My mother raised me to see no difference in anyone as long as they had a good heart and for that I see myself as blessed. When I look out to a crowd.......until you prove me wrong you are my equal and everyone else's equal.

When I was in middle school I went through a really hard time. I had very short hair, braces, glasses, and I was skinner than LeeAnn Rhimes post divorce. I was given the label "Turtle". Literally everyone in the entire school knew me as Turtle. I got so used to the name I answered to anyone (including teachers) that called me by my Moniker. I finally broke free from my situation and changed my appearance and was never known as Turtle again. However, I always kept that true identity inside and learned to proudly own it. However, on Facebook tonight I witnessed people calling my gay friends queers, powder puffs, faggots and more. No one likes to be called names!!!

You can disagree without allowing vicious and cruel words. You can disagree with gay marriage. You can agree to civil unions and not gay marriage. You can disagree with people being gay in general, but calling people faggots, queers, and other horrible names is just not acceptable to me. You can agree to disagree without name calling or violence. I believe you can choose to express your opinion through positive channels or choose not to express it around me at all. Doesn't mean your opinion is wrong...doesn't mean I am right, but it does mean we all deserve respect. If you cannot debate your opinion without being cruel then you need to look inside your soul.

For those who have used such cruel words and cannot have an open mind here is something to think about. My sons weekend nurse is gay. He takes care of Jude in every aspect an invalid must be cared for. There are some people that would look over the fact that Allen loves Jude as a patient and a person and just choose to be horrified we allow a gay man to care for him. They would look over the fact that he is a good Christian man who gave up 20 years of his life to serve those less fortunate in Africa. They would look over the care he gives my son..........and just call him a faggot. That's not okay with me. So several people found themselves deleted off my Facebook and I am sure several more will delete me today. To them I say..........I will gladly sit next to any person of any race, religion, or preference as long as they have a good heart. In the end when the Lord asks me why I will tell him because you told me "Thou shalt not judge and to love one another and so that's what I did".

A lesson in simplicity and Emily's weekend.

As I sat down to write tonight I tried to form all the words I wanted to put in my blog. I wanted to write about two subjects that tie together. First will be Emily's pageant and then my quest to get home to Jude.

I blogged the other day of how Emily mustered the courage to try Miss Tarrant teen only two weeks after Miss Dallas Teen. Some people see pageants as shallow, but if you knew all the work these girls put into this "sport" you wouldn't ever think that again. The other night we had some of Emily's friends over and they wanted me to ask them practice pageant questions. So these little boys got in their "pageant stance" and I asked them about world topics. Finally one of them looked at me and said, "wow, you have to be smart to do this". I giggled. So Emily woke up feeling very ill on Saturday morning and I was not happy with her. Granted she could have been worn down from the week of hospital visits with Jude, but she also didn't take responsibility and go to bed on time. We had a discussion about how responsibilities and commitments come before friends and texting. I asked her if the boy she likes would be up so late the night before a big football game. She said he wouldn't have been and said she really wanted to do this pageant and was going to suck it up and get herself together. I told her that in life there are many times we have to be at work, class, or a big event and if we don't prepare we have to accept the consequences. She agreed and she made the decision to walk into the performing arts center and give it her very best shot and boy did she! She looked gorgeous in swimsuit preview. This is where the judges have their first look at the contestants. Then she went to interview and she texted me that she thought it went very well too (no I can't be there...it's all up to Emily). So the primary show was at 7pm and all the girls performed in their swimsuits and then evenging gown. Then they announced the top three finalists. Emily was the last finalist called and we were so excited. Then she had an on stage question and I am sure my heart was beating as fast as hers was. They asked her "Who do you think is a good role model today?". I saw Emily's mouth turn into a smile and I knew she already had the answer in her head. She replied "Dr Rice...Condolezza Rice. I got to meet her when I flew to Washington DC for my charity and I found her to be a very inspirational lady and leader. Also she was an expert pianist at the age of 3 which I think is amazing". It was something like that and I was impressed. Even Mike leaned over and said "Well she knocked that out of the ballpark". After the the on stage answers were calculated they called the finalists back to the stage. They called the second runner up leaving Emily and another very beautiful girl. I saw Emily reach for the girls hands and they both waited to hear the announcement. They called the first runner up and you could see the answer of who won on Emily's face in the picture.

At that moment all the practice and work faded into excitement. It didn't matter how big or small the pageant was it was just her moment and she was thrilled.

So in celebration style we took Emily out to eat at Saltgrass...she was STARVING. She wore her banner and her crown into the restaurant. Mike asked, "Emily this is the first crown and banner I have seen you wear and keep on.......why?". She replied, "It just means a lot to me. This is hard work and I am just proud of it." Sometimes parents that are involved with children in pageants lose track of what's important. They begin to think that their child always deserves a title or a crown when in fact it's the judges decision. The USA side of pageantry is just as expensive and just as time consuming, but it teaches you to truly appreciate a very beautiful bouquet of pink winning roses and to be very very grateful for them! I sometimes think a lesson in being grateful for simplicity is a lesson everyone should have to learn.

I didn't get to see Jude much yesterday because I was taking care of Emily's needs at Miss Teen. I kept picturing his little face with his bright eyes. For some reason I kept thinking about him. I came home twice and gave him kisses, but I had to run back out again. He was already asleep when we got home. Today I had my nephews dedication, but after that I really wanted to see Jude. Mike had family in town, but I just wanted to sit in my house and do nothing. I grabbed Jude and we snuggled into the couch to watch a few shows. It's simple with Jude. We don't have big ambitions it's just all the tiny moments that are perfect... just like the simple pink roses!

Hitting the nail on the head

My cousin is an amazing writer and she also loves a great read. Today she sent me Heather Lanier's, "Waiting To Love My Child". Since I come into work early on Friday and cannot make phone calls I took a minute to read over the article. It literally took my breath away. What a profound outlook on life this woman has and she expresses perfectly what I have wanted to say. Recently I was sitting on the couch holding Jude and I was talking to him in my mom voice. He looked up me with these big bright brown eyes. He knew he was my baby and he knew I loved him with all my heart. At that moment I realized I had been really afraid to take all of Jude into me. I always loved him, but it was a moment of realizing I needed to let my fear of losing him go and just appreciate him for who he is and all he has brought us. So this quote in her writing really got to me.

" I think it’s to be brought to our knees with a love we have no choice over. To surrender to that love. To say, Yes, yes, yes, I will love whomever we find ourselves holding. Nothing seems to underscore this love more than the possibility of its loss."

Another moving part of the article was when she was pumping her gas and realized everyone around her was able bodied. I have done that. I have looked around wondering why the world keeps turning when my child is so sick. She said "I was pumping gas, and the world, including the gas station, was filled with able-bodied people, and my child was not one of them, was now slated for a swallow-study to see if she could even handle her own spit without slowly killing herself". Man I can relate even down to the swallow study!

She has had the courage to try to have another child, but I haven't. I haven't found the courage to do that because of the exact fear she had and what turned out to be the actual realization that something can go wrong again. However, when reading her article I didn't feel sorry for her or want to help her. I found her brave and inspiring. She had found her own courage and her own emotional well being to survive this issue and be the best parent to a wonderful child.

I encourage you to read the article........read it for me. It's the best piece I have ever read that is able to express what it's like and even though she doesn't know me personally I felt like she was speaking for me. http://www.salon.com/2013/05/07/waiting_to_love_my_child/

Ironically while we were in the hospital Mike was contacted by a friend who was on the same floor we were and her son had just been diagnosed with the same issue the child has in this article. As much as hearing the Holland poem now annoys me it's the first thing that went through my head. "Welcome to Holland". If you don't know the poem you can Google the title and it will pull up.

Jude is doing much better and we thank everyone for your prayers.

Jude is home and with an update

Jude is home from the hospital. He actually came home Monday afternoon I just haven't had much time to update my blog. He had pneumonia in the mid left lobe.

He was very happy to be home and gave us lots of smiles on Monday afternoon. However, yesterday Charlotte noted that Jude needed to be held and was grumpy. When I got home he was the same way. Jude was not happy unless someone was holding him and even then he complained a lot. Granted he is still ill and pneumonia takes awhile to conquer, but of course it concerned me. He also felt like he was heating up again to me, but luckily his temp stayed normal. He was still sleeping when I left today and Charlotte noted his temp was still down. She is also using the NT tubes for suction to try to keep his airways clear.

I got up about five times last night checking on Jude. I was worried about him. I am still worried about him. I guess that's normal.

Jude's update

We are at Cook's Childrens. We bought Jude ito the ER yesterday hoping they could give him an iv round of antibiotics with fluids and send us home, but that wasn't the case. They ended up admitting him. Thepneumonia in his lower left lung had gotten worse.  WE thought this might be the case because Jude kept vomitting and therefore couldn't get the medication into his system. Also, when he vomits he aspirates and thats what starts the pneumonia in the first place.

They took Jude off all his feeds to let his tummy rest. They gave him his antibiotics and fluids all by IV. They are doing breathing treatments every four hours and CPT. However they won't release Jude until they get his blood culture back, which will at least be Monday.

He seems to be in pretty good spirits and we did get some sleep last night. I know Jude is anxious to get home, but we want to make sure he is well. I think this is our fifth round of pneumonia or maybe 6th? Any parent with a child like Jude can tell you his is one of our biggest concerns.
I do want to thank a few people in a public manner. We brought all of Jude's items with us but due to lack or sleep and rushing from work I forgot everything. My long time fiend Kelly braved Friday night traffic to bring me two pairs of sweats and t-shirts. She even snuck in goldfish and oreo's as snacks. She also texted and called today several times checking on Jude's condiion and me. Then my friend Gina showed up at the hospital bright and early with breakfast, movies, and cheer. She literally stayed the whole day and only took a break for lunch. She even sat her the whole time with Mike while I went home to shower. Not to mention my co-worker, Fleck, Linda, etc who were all texting and checking on us. Thank you guys...it means a lot. I understand that Jude gets sick a lot and I appreciate my friends realizing there is nothing routine about being confined to a hospital room.

Emily is with her dad and friends. Her best friends parents leapt into action by letting Emily come home on the bus with their daughter and staying the night. Mike is going to bring Emily up tomorrow to see Jude.

I am currently on the hospitals great "get well network" so my blog is going to run together and have misspells because this keyboard is the WORST! However, it's so nice they offer these items now. It's amazing how comforting this hospital is for Jude.

Jude is just sick or is he better? I am so confused!!!

I look back at my teenage years and I wonder why I waisted my time and not furthered my education. I would have proudly have become a nurse or a doctor, but I didn't take the necessary steps to fulfill that career. However, somehow I got thrust into that field. I sometimes think about pursuing a medical career and then I have nights like tonight. I am confused. I want to think Jude is getting better, but it doesn't seem like it tonight, but then again it does. I am so confused that I couldn't tie my own shoes right now!

When I got home Jude was asleep on his futon which is unusual at 6:30. He slept until about 8 and he woke up very "spastic". Spastic means he is having a type mini seizure type activity. He body is just "spastic". I held him for about thirty minutes while he fought with this issue. This is not unusual for Jude and fairly the norm when he wakes up, but it was a bit excessive. I held Jude while we watched the Big C and I tried to get him to smile for me. Occasionally he would flicker a tiny grin at me, but he wasn't his normal self.

I began to feel Jude heating up. The back of his neck was hot and then his forehead started to heat up so I took his temp. 99.7, 99.9, 100. ....sigh... low but still. Days of antibiotic but the fever has crept back. I know the doctor said if Motrin can control the fever than Jude shouldn't be in any immediate danger, but my mind began to wonder if this is normal or if there is something else going on. So we took Jude to his bed to get him ready for bed. I hooked up his feed to his tummy so he would get some substance prior to all his medications.

Mike started his breathing treatment now laced with more abuterol while I gave him his medications. I noted the below.

Fever - axillary 100 (add a point)
Color - he looked pale (bad)
Smile - slight smile so that's good
Toenails - blue...very blue...but cold. Is this a temp issue or oxygen?
Fingernails - pinkish (good)
Noted Jude trying to pull the mask off his face during breathing treatment (this is good)
Cough - bad.........actually worse I would say (bad)
Breath sounds - Diminished on the lower left side, but mid level seemed better. (real bad but good) 

Wait........suddenly Jude threw up. Sigh. Throw up equals aspiration. He keeps throwing up since he was diagnosed. We sprung into action with towels and suction.

So is Jude getting better, worse, the same? I have no idea. We are watching him closely. I have no idea how doctor's deal with their best educated guess on a daily basis. They have my admiration.

On top of being concerned Jude's little "Seizure cat" is very flustered tonight which makes me wonder if he can feel something I can't or if they little piece of fur just wants outside.