Jude's update and a recap of Miss Texas Teen USA 2013.

So Jude was released from the hospital on Wednesday night and was able to spend Thanksgiving with me. Since Mike and Em had plans Jude and I stayed home and cooked and watched the parades. We had a good time together. However, I want to point out that Jude was still very ill when they sent him home. The doctor said that he felt Jude would do better at home and he knew we were capable of handling the situation vs others that may not be. I was actually very worried about taking him home because he threw up twice before we could even get him in his wheelchair to leave the hospital. However, he seemed to light up when we got home and seemed to be much happier. He is still coughing, pale, and having a few issues, but he is much happier. We are considering getting a night nurse for a few weeks until he is 100% better. If he should vomit in the middle of the night and aspirate then we take the chance of this happening all over again. Here is a picture from last night when I was talking to him.

Since Jude was home we decided that I would take Emily to her Miss Texas Teen USA competition in Houston. She had trained for it for a year and it was only fair to get her there. On Friday at 2pm I dropped her off to her chaperon. She then checked into her hotel room with her roommate and learned what their schedule would be. I didn't see Emily again until the next morning at 8am when they did a "swimwear preview" of all 101 contestants. Emily looked a little nervous her first time out on the stage (it's a BIG stage), but I was SO proud of her. I am also very glad they did the preview because it gave each girl a chance to get accustomed to the stage prior to competition.

After the 8am show the parents were on their own until 7pm that night. The girls went to interview and 5 hours rehearsals for the big 7pm prelim show. I must say I thought Emily looked very pretty going into interview.

 

Emily was responsible for her own hair and makeup the entire weekend. They do not allow hair/makeup artists to come in. The girls are also responsible for being on time, getting to bed, and keeping their energy up with snacks. They did feed them lunch and dinner at a specified time each day. So it was a lesson in responsibility.

So the 7pm show was GREAT! They did a parade of cities, then they competed in swimwear, and then evening gown. I was so proud of my little 14 year old. She really held her own against all the big girls. I think you can tell from her smile that she was having a great time and loved it

The next day we didn't get to see the girls until 1pm. It was the final show and they put on a full Miss USA type production. I was SO impressed. They did  full dance number (Emily's favorite part) and then they called the top 15. Let me state we KNEW Emily would not be in the top 15 this year. I love my child and I have confidence in her, but honestly she didn't need to win this year. She was there learning the ropes and is still to young to take on the job of Miss Texas Teen USA. They won't generally pick anyone under 16 because it truly is a job. So Emily was not disappointed because she knew she was there to learn. After the competition I asked her "Do you want to do this again?". She was quite for a minute and then said "I am very tired and it's exhausting, but I know it will just get easier each year I do this". So I asked her "well you need to ask yourself do you really want to be Miss Texas Teen USA someday" and she said "Mom I want that job more than you will ever know!! I want to work hard, practice, and learn more so I can get the title someday". However, Em's weekend was not without some stress. She seemed VERY upset Saturday night after competition and this worried me. I finally got it out of her that she accidentally stepped on another girls dress twice coming off stage. This happens... especially with trains! Well I guess the other girl turned around and said "just watch where you are going" and it hurt Emily's feelings. She felt she sabotaged the other girl when it was just an accident. On top of that her roommate had friends there competing and Emily didn't know anyone so she was a bit lonely.........and left in a room by herself. So I explained to her that this was a lesson that it's okay to be alone sometimes and that if you want friends..........go out and make them! Be outgoing and don't be afraid to meet people. I also told her that accidents happen and not to let it get to her.

So overall it was a GREAT .......... but tiring weekend. I am so proud of her and the lessons she learned! On the way home she talked non stop about the people she met, her future goals, the dress she wants, and more. I am glad we went. She also met some people that are local and can help her move forward.  I am also SO thankful that Gina flew into Houston to stay with me. I would have been so lost without her. I am also grateful for Carolyn, Kaylee, Lily, Cara, Kendall, Emily's dad, and Emily's grandparents for attending. Her grandparents even said "we will be here every year that she participates!". Made Em and I feel great.   

So now we rest for awhile! :)

update

Jude was smiling at me more last night which is good, but his fever crept back up about 8pm. I am waiting to hear if there is an update from the doctor. Currently Mike's mom and my family is sitting with Jude until I can get away from work. We are very slow today so I am hoping I can break away pretty early. I feel bad that I have missed so much work in the last two weeks, but I guess life happens.

Emily did not sleep well at all last night and today she feels rather warm. So please amp up the prayers that she stays healthy. She has literally worked for almost a year training for Miss Texas Teen USA. We are suppose to leave early Friday morning so we can get to the hotel in time for orientation. She is still practicing hard, but is a bit nervous. I told her she has to get her nerves under control and she knows how to do this because of her plays.

I will update when I hear more about Jude. I miss my little buddy and I am ready for him to be home.

Jude update

So we went to the ER yesterday and after several tests we learned Jude had pneumonia. They insisted on giving him two bags of antibiotics in the ER prior to admitting him upstairs. Mike stayed with Jude last night because I had to be at work at 8:30. I hated leaving Jude, but I was already out half the week last week due to my illness. I am getting round the clock updates from Mike.

The doctor came in this morning and said a few things. The pneumonia is in one lung and it's in the lower part which is good. It's also good Jude is not requiring oxygen. However he is still very pale and running a high fever. They want his fever broken before they send him home so he will be there a few days. The doctor said he believes the pneumonia may have happened due to a natural breakdown of Jude's lungs. This is so strange to me because I just told a friend the other day I don't think Jude's body is holding up as well as it used to. However, he also said it could be due to him catching my virus and then aspirating on some throw up.

So they are giving him IV fluids and administering the antibiotic and we are hoping he will be home in a few days. I am still planning on taking Emily to Houston unless something happens and Jude takes a turn for the worse. I will then send her with her dad.

A sick Jude and a let down

So if you have kept up with our facebook you know I had one terrible stomach virus that started early last Sunday 11/11 morning. It lasted until Thursday...............it was awful!! On Sunday night (11/11) Jude also started running a fever and acting lethargic. On Thursday we took him into the clinic to have him checked out. They ran a blood test and checked him over. The doctor determined that he was probably fighting my virus, but he was doing a better job than I was. They then informed us to bring Jude back in 48 hours if he wasn't any better. He also informed us Jude seemed a bit anemic according to his blood results and to check with his primary doctor.

This past Saturday 11/17 Jude began throwing up at night around the clock. I thought it was my stomach virus for sure, but we realized Jude was having issues actually going to the bathroom. This causes Jude to retch and throw up. So he spiked a fever again and again we were baffled. Then yesterday he finally seemed to be feeling a bit better and I was relieved. So at lunch with Mike I texted Charlotte to see how Jude was doing only to get a suprising response. Jude's fever was back at 102.1 and he was lethargic again. His other stats didn't sound much better. So I put a call into the primary doctor who informed me that Jude needed to go to Cooks downtown and to be prepared he might be admitted. She also said that his blood results showed both his clotting factors were down. I asked if this could be a concern due to the fact he suffered a bleeding stroke in utero. She said that to her it's concerning and would like to run a few tests.

So I realized in a very teary way that Jude and Mike would not be able to go to Houston for Emily's competition. I know that's not what is important here, but it is important to me and it makes me very sad. So I called and told Emily what was going on and I heard the dissapointment (once again) in her voice. I then saw little updates from her bounce up on facebook from her Smile Box page to her brothers fan page she has. I know she is let down and I am let down. I wanted them with us at this important event and I sure don't want to be there alone. So I put some calls out to see if I can find a friend to go with me. Em will be spending all her time with the group and I will be looking for stuff to do.

On top of this I am also very concerned about Jude. I am emotional and stressed. I want him to be okay and this may just be a simple virus, but I have been noticing something. I have noticed how Jude's body is just not what it used to be. He seems to be having a harder time sleeping, coughing.......regulating. Maybe it's just a mom thing that I sense it..........but I do...I feel it. It's not a matter of not being positive because I am and I love him very much I can just see there is something going on with him.

I just know Jude

Our good friend Gena and her son Frankie were chosen for the Kidds Kids trip this year. If you aren't familiar with Kidds Kids they take terminally or chronically ill children and their families to Disney World every year. We were very happy that they were chosen. I have been watching the pictures they have been posting showing how much fun they are having. They deserve it! Gena does so much for others including us.

With their trip I have been told several times "You guys should apply for that". I would love it, Emily would love it, but Jude ..............well Jude would hate it! I know my son and I also know that his mental capabilities are not like the children chosen for that trip. There isn't anything wrong with that it's just that I understand there are other children who would enjoy it more. Jude's idea of a great time is being on his futon or being held by his mom. He is a little home body. Would I like to take Jude to Disney World and have him enjoy it? Of course. Would I love to take Emily while she is still at an age that things are new and exciting? Yes. However, I understand and accept that this is not in Jude's best interest. I think sometimes special needs parents push their children to do things that "normal" children do to make themselves feel better rather than looking out for their child's best interest.

So today my cousin adopts her foster child and I am thrilled for her. I am wishing them a life of great things.

Pure and perfect

Below is one of the best articles I have seen written by a special needs mother. It does an amazing job of conveying the fact that as desperately lost in grief you are at the initial diagnosis of you child that life finds a way of becoming very special. I highly encourage people to read it especially if you have a newly diagnosed special needs child.

I relate with this mom. The strange thing is Mike's dad was just at my office and said "Does Jude respond to anyone else like you? He just lights up when you get home from work like nothing I have seen".

Ps. Grab a tissue.

http://www.ocregister.com/articles/worth-373806-needs-son.html

Update from this morning.

Well it's another GLORIOUS morning (what show is that from?). Mike called my name this morning about 6:15am to tell me Jude's med port had come open and had leaked his food all over his bed. Of course Mike thought I didn't close it the night before, but I know I did. I watched the food go in because I was checking to make sure the line was open. If I had left the port open his red medication would have been everywhere and it wasn't. I think he coughed so hard throughout the night the pressure opened the port. However, now that we are a few years into caring for a special needs child I can tell you that you do and WILL make mistakes. I have gotten to the point now that if I make a mistake I understand there isn't anything I can do about it after the fact except learn not to do it again.

So I stripped Jude's sheets, changed his clothes, and put him into our bed. I then hooked up his feed again with about 6 ounces so he would get some nutrition. He finally fell back to sleep, but then woke up and threw up twice.

Again, it was another glorious morning, lol! However I did enjoy his sweet smiles with me this morning

Weekend update

Our Anniversary was nice. Jude wasn't feeling that well when I left, but Gena assured me she would take care of him. Sometimes it's really really difficult that we don't have trained people that feel comfortable watching Jude so having Gena around has been great. Don't get me wrong..........our nurses while we work and for some time on the weekend are amazing.

The Emily's Smile Box party was a success too. We made 350 boxes and we are currently setting up the Christmas party. It will not be mixed with Emily's birthday so I hope it will be a little less chaotic.

Jude's had a check up with his neurologist. He seemed very pleased at Jude's progress although he did increase his seizure medication a bit to better control the new seizures that have reared there head. However he seemed very excited at the fact Jude's school is talking about electronic devices for Jude. They want to test putting switches on his head to see if Jude can answer yes, no, etc to certain questions...........that excites me!

Well it's short but wanted to update. It does seem Jude is feeling better than Friday. I am hoping he stays that way.

Also, Emily's Miss DFW Teen USA page is up............stop by and like her :) http://www.facebook.com/#!/pages/Miss-DFW-Teen-USA-2013/416654021734127  she will be competing at the end of November for the title of Miss Texas Teen USA. You can follow her journey there as she gets ready and competes. We are going hoping she has a great time and learns the ropes. I know she will make new friends and have a lot of fun.

5th anniversary and life.

Tomorrow is my 5th wedding anniversary. I have taken off work so I can spend the day with Mike. Well, part of the day. We also fit in a neurologist appointment for Jude in the morning. It wasn't in the original plan, but you do what you need to for your kids. I am very blessed to have such a great husband. He is my polar opposite, but we fit together great. He is funny, witty, loud, caring, passionate, sweet, a stinker, an amazing dad, great looking, and my match. I love him very much.

Lately I have noticed such serious and stern attitudes on facebook. I have also noticed people very set in their ways. I thought I would share something with you. When I got pregnant with Jude I was just like every other new expectant mom out there. I took my pre-natal vitamins, I planned how the birth would be, how the room would look, how I would parent, and everything else that goes into having a baby.

What I planned: I planned on a non stressful birth without an epidural. I planned to not be induced since statistically it causes more c sections.
What happened: My epidural was placed even before my labor was even started at 38 weeks. They placed the epidural because my platelets had plummeted and if an emergency should arise this would keep me from being sedated. I was induced at 38 weeks due to Jude's issues.
What I realized: as much as we all want the perfect birth it doesn't always happen and you have to do what's best for you and the child.

What I planned: To breastfeed
What happened: a struggling baby who we didn't know was aspirating on food. We tried as long as we could and finally this turned into placing a g button with a 24 hour crash course in how to use a feeding pump.
What I realized: when it gets right down to the nity gritty food is food no matter how it gets in there.

What I planned: A beautiful bedroom decorated in cute farm animals.
What happened: converting my dining room downstairs into a room for Jude so he would be closer to us in the event of an emergency
What I realized: That Jude loves his room. He smiles every time we take him in there so everything happens for a reason.......and it's just materials.

What I planned: To potty train by age three
What happened: The realization that he will always be in diapers.......this also eliminated cloth diapering.
What I realized: That diapering a 4 year old with adult small diapers is EXPENSIVE and thank goodness for insurance!

What I planned: To make my baby food using the food processor we purchased
What happened: See reference to crash course in using a feeding pump

What I planned: To stay away from antibiotics and other medications because the world pushes them to much.
What happened: a real quick lesson that a little tylenol and motrin sure isn't going to hurt a baby when you give them felbatol, depakene, and other heavy anti seizure medications.
What I realized:  That my worrying with Emily over giving her medications as a baby was not warranted. 

What I planned: To read to Jude to help him do better in school
What happened: Realizing that Jude may not read, but he loves to hear us talk to him
What I realized: Jude knows more than we think because he recognizes stories.

What I planned: To go to the circus, disney world, to see Santa, and do all the great things kids love
What happened: attempted trips brought forth the knowledge that a child with a sensory issue is overwhelmed by the noise that goes along with these places.
What I realized: That staying home with Jude is a really great thing.

What I planned: To let fevers take their course and not to rush off to a doctor because nature knows what it's doing
What happened: a fever can signify a very serious issue in Jude
What I realized: You always have to rush off

What I planned: Life
What happened: Life
What I realized: don't sweat the small stuff, fate chooses different paths than you do sometimes, don't judge others until you have walked in their shoes, be open minded, always be kind because life can change in a second, and embrace the change.

What it's like to be Jude's parents.

Mike was rather emotional yesterday. I attribute it to the fact he has been sick, but sometimes he is just an emotional guy. He got teary when he saw a little boy like Jude walking with the help of his mom yesterday. He then got teary when reading a summative written by a mother in a situation similar to ours. Last night while laying in bed he said

Mike: Did you read this thing Stacey posted about "Neuro mom"
Me: I started too, but I am so worn out from being sick and Emily's party I just couldn't handle it emotionally.
Mike: It's really good
Me: I will read it tomorrow so I can let it sink in

He then read me a bit, but I think he got that I was just physically and emotionally exhausted from putting on Emily's Smile Box event. So he posted it on his facebook and today I read it. So today I sat down and read it ........... at work..............big mistake. So I will for go the blog about Emily's Party and post it tomorrow so you can let this soak in like I did. I think it is the very best writing in regards to Jude's condition that I have read so far. It really sums it up from beginning to today.

I am a Neuro Mom

I just wanted a healthy baby
...

With no tubes
And no surgeries
And no daily meds
I wanted to take my baby home
And go around showing her off like normal new parents do
I got a very quiet baby, who never made a fuss but didn't meet the milestones, and screamed non-stop in car rides meant to calm

Then there we were again, 6 months later. With seizures.
Stuck in a hospital room
Most, almost all really, were afraid to visit...afraid of the unknown, afraid of the sadness of a sick baby
It was sad, and disappointing.

And then in parade the other moms
Strangers
Strangers with babies like mine
Even babies who have finished their battle and are in Heaven
You can see it in their eyes -
They know

And they bring chocolate
And coffee
And Tears and Laughter
But mainly they bring empathy

And so they hold my hand and lift me up
When I cannot stand
And together we walk this journey

I am a Neuro mom
I know things one just should not know
I know what it's like to hear the words status, and slowing, and spikes
and regression, global delay, and hyppsarrythmia.
I know that constipation, fever, loud noises and colds can bring on seizure.
I know that one seizure is one too many
I know how to put a mic-key back in if it comes out
I know the cry of another Mom losing her child
I know what a running group of doctors means
I know what it's like to watch a machine
that has your baby's future written all over it
I know the exhaustion of pushing the button every 2 seconds during a VEEG
I know the "wanting" to watch the EEG machine, even when the techs turn it away
I know what it's like to wake in panic at beeping alarms
I know what it's like to have nurses and doctors know how you take your coffee
I know the guilt of wondering if you are neglecting your other children while sitting in the hospital while you watch this one.

But I also know what it's like
to leap with joy at my baby drinking half a teaspoon
to high five eating a bite of a sandwich
to defy the odds
to lift up another neuro mom in tears
to be surrounded by Warrior Moms, and FFL
to have made friends for life because of my child's condtions
to release a balloon in memory of an Angel
to survive a war
to be in the presence of a Miracle

So today, and everyday, I am a Neuro Mom. I am a warrior mom. I'm so proud to be .
And I wouldn't want to be anything else.

(Borrowed from a friend) ♥

Dreams off track and what to do

Wow, I have been pretty overwhelmed with decision lately and to be honest.........I have completed ONE of them! We have to convert a bathroom for Jude..........and we are unsure how to. Our half bath backs up to our main bath so there is no way to convert the half bath without tearing into the master bath....confused yet? Our master bath cannot be converted due to the tub/shower issue. Which means we would have to convert our master closet into the handicap shower..........this means we lose resale value (big time). I did have one idea. We could convert the half bath and let it take over part of the master bathroom. This would leave the rest of the prior master bath as extra closet space. We could then push out into the backyard and add on a master bath. However, I have NO idea the expense or if I could even refinance with this option. It would add lots of value, but again it may come down to money. Issue is Jude is now over half my height. For moms of four year olds let's put this in perspective......my 4 year old cute disabled little boy is as tall as my friends 9 year old son. eeek! lol.
The other thought has been to move.........but I love my house. I realize it's just a material possession, but I love it. If we move Mike wants land. So the thought was to buy something older so it would be easier to convert a room. So we are really up in the air on this subject and I am at a loss.

I am also struggling with knowing my boss will eventually retire from his position and wondering what avenues I should take in life. I like my job. I have the majority of my family and friends insured at our agency. I just hope I can be here for a long while. Other major decision is my husband and I would both like another child....not to replace Jude because he is irreplaceable, but it was always the plan. We have just been seriously side tracked and derailed from our plan. I have no idea if we will pursue this dream either, but a lot if up in the air right now.

Jude is well. He is smiling and happy. His G button site is a bit pink but the antibiotic ointment is helping.

Oh and now that it is getting colder be be kitty has been popping at the door again. I let him in and he wants back out. I put him out and he wants back in. It's a battle!

An anti bullying message.

I am sure you have seen this, but I had to share.

 

Good for her! Obesity may be a problem in America, but so is bullying! There are many medical reasons that women and men can be over weight. He doesn't know if she has one of this issues .......... he doesn't know her at all. It's time we stop looking at people and see color, or weight, or a disability. We need to look at people for what they are.........people. Everyone deserves to be treated equally and without judgement. She acknowledges she has a weight problem and she understands it. I personally look at her and admire her beautiful hair and what high cheek bones she has. Maybe every one's challenge today is to be kind to someone. Notice something beautiful about everyone you come in contact with today and let them know. It may very well just make their day!

When I was in middle school I was going through a very rough time at home. I had very short hair, glasses, a retainer, etc. I was bullied by several classmates and named "Turtle". As I got older and became more self assure I realized I had no control over that situation. No one knew what was going on during my home life, but they should have known not to treat someone so poorly. So I decided I would always proudly accept the Turtle moniker. I also decided I would raise my children to stand up for those being mistreated vs being one of the children that did the bullying. I am proud to say that Emily is very outspoken when she sees someone being teased (especially if they are disabled). My husband is the same way (and he wasn't always like that). So I hope you will join us and let's stomp out bullying!

A happy Jude and a donation

Jude is doing MUCH better! He started back to school on Tuesday and the day went fairly well. He was very tired by the end of the day and pretty cranky. I think it was just an adjustment after resting due to being so ill. We have come so far as a family within the last four years since Jude was born. We are now our own little rolling hospital and we can care for him very well when he is so sick. I know that if a regular healthy child walked into the ER with the issues Jude had they would have hospitalized them. We are now going on two years without an extended hospital stay (knock on wood).

See I feel much better!

Jude is now smiling again! He finds his own ways to communicate with us, but it's primarily smiling or laughing. When he isn't smiling or laughing.........something is wrong.

Emily is doing well too, but pretty overwhelmed with school. She is keeping her grades up, but I worry about her being over extended sometimes. She has a lot more homework this year then she did last year. She is getting ready for her annual birthday/Emily's Smile Boxes party. This will put her over 5000 boxes passed out to local hospitals to help pediatric patients and their siblings. I am very proud of her charity and how much good it has spread throughout the nation. We just shipped supplies to a church in New York to put together 100 boxes for a local hospital. The hospital had emailed us for help, but we were unable to ship that many boxes. We are very grateful the church is helping make this donation possible.

Well have a good day and keep a positive attitude!

Things my grandparents taught me

Things my grandparents taught me (both sides)

1. Spending quality time with a child is way more important than anything else you can do
2. Everyone is entitled to an opinion, but if you talk about someone without them being there be prepared to admit to it and give them your reasoning.
3. Death is just a part of life and it can be just as beautiful
4. Don't sweat the small stuff
5. Thunder is just Angels bowling so there is nothing to be scared of.
6. A house is just a house but a family makes it home
7. Friends may come and go, but your family will always be there so treat them nice
8. Frito lays, oreo's, and dr pepper are really bad for you but can always cheer up a really bad day
9. Sometimes God takes little ones because he could not perfect them anymore than they already were.
10. If someone is always upset about something than nothing will ever change them
11. Catching tadpoles can be lots of fun
12. Sometimes there are just no explanations
13. It's okay to be quiet
14. A walk a day keeps the doctor away
15. There is nothing better than a big ripe red apple
16. Save your pennies for a rainy day
17. Stand up for what you believe in, but always be willing to listen to the other side.
18. A child's mud pie is made with love
19. your kids are only little for awhile so let them jump on the bed for a bit
20. Take time to meet your neighbors....they will be calling 911 when you are old.
21. People either work hard or they don't and you cannot normally change that. So don't get a case of the lazy's!
22.Thank you notes should be hand written and sent out promptly
23. Words hurt for more than hitting someone ever will so be careful what you say
24. Never scold a child for breaking a dish. A dish can always be replaced.
25. Always dance with your daughter.

Just my memories today.

Still a sick little guy

Jude is still not well. Now we are back into one of those decision modes........do we take him back to the doctor or wait it out? He is very congested which could signify this is indeed just a viral infection. However, he is coughing so much he cannot sleep well. He sounds like he is breathing through a honeycomb with pop rocks mixed in. You can tell it hurts him to cough now, but his vitals are good. His toenails are a little blue, but the rest of him looks pretty good. So it's a toss up! Is it viral or has it become something else? Charlotte said his temp did start elevating again last night. Now my understanding is if it is viral and the temp goes back to normal then a day later starts to elevate again it could be in indication it's now turned into more. WHO KNOWS! It's always a toss up and a wondering game.

We put him to bed early last night so he could get rest. So we administered his sedative, but his breathing so so rhaspy that Mike always gave him the Abuterol and Palmacort (sp). So therefore they countered the sedative. Jude coughed and coughed and then clear as day started yelling "moooooooooooom". Jude rarely makes audible words. So I just had to pull him out of his bed and take him to bed with me and this is what I heard (all you can see is his IV pole it was dark)

Poor guy is just miserable.

I am not sure we will go on our trip in a few weeks or at least not fly. I don't feel comfortable going so far with Jude not doing well lately.

911 What's your emergency? The issue with FT Worth's Annexed section.

When my husband and I decided to move to the popular city of Roanoke, TX we were not aware we were moving into an area of land that had been annexed for TX Motor Speedway in 1995. The only thing we were concerned about was finding a great school district for my child and the new baby we were going to have. We also wanted to find a nice house they could call home. When we purchased our home we had no idea our baby would suffer a massive stroke and need full time medical care. We have had to call 911 due to Jude's condition a handful of times. The Fort Worth Fire Department and Med Star EMT'S have been AMAZING. However........did you catch what I wrote? That's right...we live in Roanoke and Fort Worth emergency responds. Due to the annex we basically feel we are a floating city that no one wants to claim. We know to stay calm in situations with Jude and if possible we transport him ourselves. We do this because we have learned that calling 911 in our area equals a very slow response time.

Sunday morning I heard Jude coughing over the baby monitor. This is not unusual and it generally takes a pat on the back or rolling him to a different side to remedy the situation. However, on Sunday he was having a very difficult time. I first administered CPT which is where you use a small cup to pat on the front and back. My assumption was that Jude had phlegm stuck in his throat and needed help dislodging it. However he continued to wheeze and started to turn very pale. I then administered an abuterol treatment and connected his stats monitor. His Blood oxygen read 70. This is real low, but I know the machines are not always reliable. So I secured the toe monitor tighter and rechecked his vitals. I counted his breaths 1, 2,3,4,5......to fast I thought. I took his abuterol mask off and turned Jude on his side. I checked his fingernails........blue.........his toenails.........blue.........around his mouth....blue. Heart rate - 220. Respiratory rate 67. Time to call 911.

I walked into our bedroom calmly where Mike was sleeping, "Mike I need you to wake up and call 911 please". He looked like a cat coming out of a net "WHAT????". He then followed me "what is going on". I had Jude still on his side started giving CPT on his back again. I explained the situation quickly, but Mike was still half asleep. He responded "I think we should transport him". I said " The baby has blue fingers and toes I will not be one of those mothers that thinks she can transport when I know he needs oxygen". So I called 911...............and thus the reason for my rant today.

I cannot remember verbatim the conversation but it went something like this....
911 how may I help you?
Me: This is Jennifer Ortiz and I have an emergency with my son I am in Chadwick farms and I need Roanoke to respond.
911: You are requesting Roanoke?
Me: Yes. They are 3 miles vs FT Worth who takes 18 minutes.
911: Roanoke? This is FT Worth 911 with caller requesting transport from Roanoke

After that basically Roanoke said they wouldn't help us and sent me back to FT Worth. Luckily FT Worth knew and had already dispatched Med Star. It took 14 minutes for the fire department to arrive and 18 minutes for the ambulance to arrive. Once they got there they were amazing, but it was an unnerving scene. They immediately hooked up oxygen and an IV and carried Jude to the ambulance vs using the normal stretcher. Mike said we spent over 20 minutes in front of our house stabilizing Jude prior to transport. His seizures were coming in waves one after another with full convulsions on some. He was one sick little guy with a fever of 103.8 auxiliary which is actually 104.8. They believe he had a viral infection that caused febrile seizures on top of his regular seizures which caused his blood oxygen to drop and heart rate to sky rocket. Once at the hospital he was tended to, regulated, and we felt comfortable taking him back home.

We have had continuous issues with the response time after calling 911. I even had an issue once being transferred FOUR times to different cities because 911 wasn't sure which city should respond. That was the incident where Jude had aspirated and the doctor's were amazed he made it. On one trip (I won't mention which one because this EMT was amazing) an EMT looked at me and said
"Ma'am I am sorry it took us so long to respond"
Me: "I didn't want to say anything because I know it's not your fault"
EMT: "No it's not, but something needs to be done about your area and everyone in this vehicle knows it"
Me: "What happened to the Med Star that was stationed off West Port Pkwy?"
EMT: "They cancelled it for budget reasons"
Me: "Sigh, wonder how they would feel if it was their child that was sick"
EMT: "Good question"
Me: "Look we are well educated and know how to care for our son, but what if someone in this neighborhood had a massive heart attack? Every second counts!"
He agreed with me.

In my mind the medical industry should render aid first and ask questions later. I don't know the politics going on between the cities due to the annex. I do know Roanoke wouldn't allow me to rent their clubhouse at a resident rate because I was technically in FT Worth with a Roanoke address. However, not renting me your clubhouse is very different then not helping a child. Again in an emergency situation every second counts and 18 minutes feels like a lifetime. Something needs to be done! I want to make sure that anyone that suffers a heart attack, a stroke, falls, or any life threatening emergency can be handled in our area. In fact, I read on the blog of the mother of the little boy that drowned it took about the same time to respond to him. I wonder if that situation could have been different?

I feel this is about money. This is two cities fighting over the annex and no one wants to officially claim us. 14-18 minutes in my mind is an unacceptable response time. I work for an insurance company and we will not insure any home with more than a 7 minutes response time....why? Because by the time you reach 14-18 minutes what do you think a fire is going to do? Let's put this in perspective........if you had a child that was seriously injured and every single second count.........how would you feel being on the line for that long?

Something needs to be done. I am asking the local TV station or someone to pull my 911 call and listen to it. I educated, I am medically aware, and this is unacceptable! That is my rant for the day. I am however very thankful Jude is doing better.

a little update

Things are still going well. Jude is adjusting and loving his new wheelchair and we are working on getting a van to house it. He got new AFO'S yesterday which is wonderful. They support his feet and keep them straight vs curling under due lack of use. Jude is still have asence seizures. It makes me wonder how long he was having these before we caught them. I thought his seizures had been decreasing, but it looks like they just took on a different hard to detect form. However, he is still very happy. He is also having great "reactions" to certain people and items. He gets excited when he hears people he knows and he literally squeals every time I read him "Good Night Gorilla".

Emily is as busy as ever, but doing well. I am hoping to let her participate in a little pageant near our house in September to see how she does with her own hair/make up and her modeling prior to Miss Texas Teen USA. We also have her annual Smile Box party set for October. We will be putting together 350 boxes to benefit the DFW Pediatric hospitals.

His wheelchair is here and a reflection

Jude got his new wheelchair! We are just so excited for him. His other chair was so uncomfortable for him and I think it really hurt his back. The mobility sales person and the therapist met at my house last night to fit Jude into the chair. He loved it so much that he fell fast asleep.

Then this morning he actually got to see out of the school bus.

 

The head rest is really working for him so far in regards to positioning. He has about 30 seconds of neck control before his head falls. So we really like that this rest if keeping his head up for him. We are very blessed. The wheelchair is even in Dallas Cowboys colors and has his name on it.

We are trucking along lately. Mike and I were reflecting today on how far our lives have come in the last few years. We are in a really good place in life right now. We are accepting of what has happened, feel blessed with our children, and we are happy in our marriage. With that being said my life is still pretty chaotic (who's isn't?). So if I don't call, or write, or forget something vitally important to you just know it's not intentional at all.

It's really nice to finally feel happy and accepting. I truly love our life!

A party and a story

Me: Mike look! We could move here and our house payment would be SO cheap. We could literally pay it off in no time! I wouldn't have to work so hard. http://www.realtor.com/realestateandhomes-detail/8535-Brahma-Dr_Justin_TX_76247_M81684-90018
Mike: Um it's a mobile home
Me: It's a nice mobile home sitting on an acre of land. We could plant trees and save up to build our custom home.
Mike: That's it you have lost it
Me: I have not!
Mike: I meant that as much as you hate storms/tornado's you are going to live there?
Me: Well.............we will get a storm shelter!

Guess he didn't go for it? I love love my house, but the idea of not having a house payment.......well it makes you consider other options. Just imagine the possibilities.

Jude is well. He had a great birthday party and had so many loving people attend. He did have a seizure when a balloon popped and everyone got very quiet. A few people were also very concerned, but I explained it was a mild seizure and something we are used to. I forget that people are not used to be around him all the time. My friends/family came and all gathered around celebrating his life and I even felt my moms presence with us.

So I do have to share something adorable. Jude doesn't give full expression of communication to us very often. Well I generally read "Goodnight Gorilla" to him, but we have taken a break from that story lately and had moved on to "Brown Bear Brown Bear". Last night I pulled out "Goodnight Gorilla". I just said the title of the book and Jude squealed and smiled. He then made audible sounds throughout the entire reading. He really loves that book. Here is a picture after Jude's party

 

Perfect

Acceptance of one's life has nothing to do with resignation; it does not mean running away from the struggle. On the contrary, it means accepting it as it comes, with all the handicaps of heredity, of suffering, of psychological complexes and injustices.
Paul Tournier