"Life's a dance, we learn as we go,"
Monday, July 9, 2012
To the awesome Dad of my awesome kids.
My kids have an awesome Dad. We all like that guy. He's a keeper- that's for sure!
Sunday, July 8, 2012
Friday, July 6, 2012
One year Trachiversary, and Life is GOOD!
One year ago at this time, our little fighter Wild Man Willie was inpatient at Phoenix Children's Hospital. It was a 35 day hospitalization we will never forget.
Last year Richie was working for MASS Electric on the LightRail in Los Angeles and had been away from home for a while. The project came to an end in May 2011. MASS had a short 10 day project June 2011doing some repairs on a train system that was in Canada- and Richie had an opportunity to go on the short job that paid well. All travel and meals were paid for by MASS. So Richie left for his adventure early June 7th I believe.
For several months William had been so fragile, and had several troubles with respiratory distress. We were on and off lung steroids, been in and out of PCH, using more oxygen via nasal canula that normal, and our suctioning needs had increased. On June 12, William had a really rough night the night before and my mom came over to keep Isabell while I took William into PCH ED. We were at a baseline rate of 0.4LPM of O2 at that time and William was needing 2LPM and really struggling to keep his oxygen saturation's up(struggling to breath). He had no fever, but looked miserable. When I took him into the ED, I explained that William wasn't himself and gave the staff the rundown. He was admitted for observation since he is so medically fragile, and since his oxygen requirements were so high. All labs were negative for infection, and hid blood work did show that his CO2 levels were elevated. We got settled into our room in the late evening of June 12. We had a good night, I was able to get some sleep. William needed 2LPM of O2 all night, and was otherwise stable. Sleepy, congested, but seemed comfortable. On the next day June 13, we were half awake for shift change at 7am. William was receiving respiratory treatments every 4 hours and the nurses were checking on him alot for desaturation episodes. At 10am William had a small desaturation episode. Our nurse the Adorable and Wonderful Lauren (On the Trach and Airway unit) came in to check on the Wild Man. He sounded congested, so Lauren attempted to deep suction William (through his nose) and William gagged and turned purple and blue. His oxygen saturation's had dropped to 30% and we cranked the oxygen as high as we could to a flow of 15LPM. William's saturation's did not come up very quickly, and Lauren was calling for HELP. The hospital has an intercom system, and the Clinical Assessment Team was called in to asses William. Within seconds a group of about 12 Physicians, Practitioners, Residents and nurses were in our room. William had recovered and was back to his 2LPm of oxygen (still higher than normal, but lower than 15LPM!) and the assessment team decided that he may be ok- but they would get a bed ready in the PICU incase of another episode. Within 30 minutes later, William did it again. He turned blue, and it was so hard watching my baby struggle to breath. He was such a fighter though. The assessment team said to bring William over to the PICU. We gathered all the stuff we needed, and RN Lauren, PCT Stephen, and and RT (drawing a blank, I don't remember which of our amazing RT's were with us) rushed from the old building of PCH, 4th floor- to the New building of PCH, 6th floor! What an adventure. The crib William was in was not in great condition, and the wheels didn't roll that well. It took all of Lauren and Stephen's might to push the crib down the mile long hallway of PCH that we had to rush down- while our RT was holding oxygen securly to William's face. I was running ahead with a wagon full of our belongings. William really wasn't doing well by that time, and we got into our PICU room in a total rush. We tried numerous interventions to stabilize William's breathing- and nothing was working except continuous albuterol, with positive force pressure of Oxygen via mask at 20LPM. He was responding to the positive force pressure of oxygen and albuterol, and was saturating at 100%- but someone had to hold it securely to William's face, and keep the albuterol going. Which we couldn't do forever. After doing so for about an hour, the team pulled me aside for a QUICK gathering. We recognized that William was in FULL RESPIRATORY FAILURE, and all efforts being made weren't working 100% to our advantage. There was nothing else we could do to restore William's breathing at that point, OTHER than placing a n INTUBATION tube down William's throat- sedate him and use a ventilator for breathing support in hopes that his lungs will regain strength after they rest.
During the midst of all of this happening, I managed to get ahold of my mom and she was able to get to the hospital immediately. I was there all by myself, and my husband was in Canada. I had talked to him as well, and it was just extremely HARD to be apart at that time. In the position we were in, it was nearly impossible for Richie to return home at that moment that William went into Respiratory Failure. He was going to be back from the trip on June 17- and him being away was super torturous. I am so thankful my mom is so supportive, understanding, ALWAYS there, and just amazing. She was there holding my hand, kissing her grandson who was fighting for his life, and taking care of the world around me when I could not. All I was focusing on was my baby boy, and how I WAS NOT ready to say goodbye to him. He was fighting SO HARD, so I fought with him.......
When our medical team looked at me and said "What are your wishes?" I said "PLACE THE TUBE!" And they asked me if I was staying in the room, and I told them no that I am placing all my trust in them since William was an extremely DIFFICULT Intubation- and would be out in the waiting room with my mom. I knew they would have a difficult time intubating him, and I knew that they would be successful after a challenge. I don't think I could be there in the same room to watch the difficult challenge, watch my baby fight for his life, and watch the chaos of the Interventionist Nurse Practitioner RT's and RN's struggle at a successful intubation. Sure enough- It was such a difficult task after the NP had tried intubating William 2x, the interventionist tried 2x, and they had to call the on call anesthesiologist to come in and intubate in which he did so successfully on the second attempt. After 6 attempts at intubation- the Tube was Successfully placed!
The team came out in the waiting room to get me, and my mom so we could go back to our Wild Man Willie's bedside and be with him. He has been sedated already, and was getting some much needed rest. He was getting breathing support from a mechanical ventilator- and with all the medical 'stuff' all hooked up to him, he looked incredibly comfortable and peaceful. Made my heart slow down just a bit after going through all that, BUT I was still hurting that my little boy was fighting so hard.
William was intubated for 14 days. Richie returned home from Canada on June 17th, and came right to the hospital. Each day William was needing more and more sedation meds to keep him calm, comfortable and to keep him from pulling his ETT Tube out. William had a special test done that determined that his diaphrahms were not moving, and possibly paralyzed from going into respiratory failure. The team came to Richie and I to share that information, and we discussed that William's lungs may be paralyzed and taht we can continue to keep him sedated and on the hospital ventilator and see if he takes a turn and starts breathing OR we could explore the options of having a trach surgically placed into William's airway and give his breathing support through a home ventilator and take him home after he recovers. We made some quick decisions and chose to go with the trach placement. OUR ENT came in on a Saturday June 25th and placed William's trach. Surgery went quick and successful.
William came back from surgery- and we were able to see our little man AWAKE and he looked even more comfortable. We were immediately able to start weening William off of all the sedation meds he was on. He was more and more awake and looking so cute. The trach, vent, and circuit scared the crap out of Richie and I becasue we though we would never figure out how to manage all of that equipment! Within a day we were feeling comfortable with all of the stuff, and started holding William and handeling him with his new gear so we could get used to it! We had to stay in the PICU for one more week, until he had his first trach change. When having a trach- you have to change it to a new sterilized trach each week. The first trach William had was sutured into his skin- so our ENT had to come to the PICU for our first trach change to untie the sutures and place the new trach. He was also checking out the stoma, and evaluating William;s airway. After the trach change, our ENT gave us the go ahead and go to the stepdown unit to the Trach and Airway unit where we would learn to care for William with all his new gear and where William would continue to ween off of all the drugs he was on while being monitored 24/7. We were told we could expect another 30-45 days in the hospital for this process. We transferred out of the PICU on July 4, 2011.
We spent days following our transfer to the trach and airway unit "Nesting". Richie and I spent nearly every second in our little hospital room with William learning all we could learn about William's new trach, and vent. It takes alot of education to learn how to care and manage a trach and also the vent. William also had another Broviac central line IV placed, and we were keeping it for long term access which also meant we had to learn how to manage and care for the Broviac.
In 10 days, we had checked off on all the items on our list to learn before we take William home with all his new gear. When the staff said it takes most families 30-45 days to check off on all the things we had to learn to care for the trach and vent and we completed it in 10 we were so proud of ourselves. The Trach and Airway said we set a Unit record for sure, and they were so proud of Richie and I for being such proactive parents. Richie and I both were so eager to learn and perform all it took to care for William. From suctioning the trach, bagging William, changing the circuits, doing a trach change, flushing the broviac, administering IV meds, cleaning and organizing equipment- Richie and I were in to together.
On July 14, 2011 we learned all we needed to learn, and William discharged from the hospital. We took our Fighting Fighter Wild Man Willie HOME!
After being vent dependant for all of July at and most of August at home- William started breathing all by himself with no vent support, nor oxygen support on August 27th, 2011. To keep William;s CO2 levels down, we still used the vent at night until mid October 2011. By that time William was fighting the vent, and I stopped using the vent 100%. William only needed oxygen here and there.
Fast forward to now- and I am SO excited and proud of where we are. For our one year Trachiversary- where the care we provide for William has dramatically increased and our work is more intense, I can say we are BETTER off now that we have ever been. William has traveled all over Northern Arizona, he has been to New Mexico and loves car rides. We have been able to visit Daddy since he travels 100% of the time as a Journeyman Lineman. We have even taken William on an airplane to Texas and we have been here in Texas for nearly 6 weeks. I have William's respiratory needs so under control, and I am proud of my hard work to flawlessly care for William and all his intense medical needs. I am proud that my husband works just as hard- to provide EVERYTHING for us, and is the best dad, and most pro-active dad I know when it comes to taking part in the needs of his medically fragile child.
Last year Richie was working for MASS Electric on the LightRail in Los Angeles and had been away from home for a while. The project came to an end in May 2011. MASS had a short 10 day project June 2011doing some repairs on a train system that was in Canada- and Richie had an opportunity to go on the short job that paid well. All travel and meals were paid for by MASS. So Richie left for his adventure early June 7th I believe.
For several months William had been so fragile, and had several troubles with respiratory distress. We were on and off lung steroids, been in and out of PCH, using more oxygen via nasal canula that normal, and our suctioning needs had increased. On June 12, William had a really rough night the night before and my mom came over to keep Isabell while I took William into PCH ED. We were at a baseline rate of 0.4LPM of O2 at that time and William was needing 2LPM and really struggling to keep his oxygen saturation's up(struggling to breath). He had no fever, but looked miserable. When I took him into the ED, I explained that William wasn't himself and gave the staff the rundown. He was admitted for observation since he is so medically fragile, and since his oxygen requirements were so high. All labs were negative for infection, and hid blood work did show that his CO2 levels were elevated. We got settled into our room in the late evening of June 12. We had a good night, I was able to get some sleep. William needed 2LPM of O2 all night, and was otherwise stable. Sleepy, congested, but seemed comfortable. On the next day June 13, we were half awake for shift change at 7am. William was receiving respiratory treatments every 4 hours and the nurses were checking on him alot for desaturation episodes. At 10am William had a small desaturation episode. Our nurse the Adorable and Wonderful Lauren (On the Trach and Airway unit) came in to check on the Wild Man. He sounded congested, so Lauren attempted to deep suction William (through his nose) and William gagged and turned purple and blue. His oxygen saturation's had dropped to 30% and we cranked the oxygen as high as we could to a flow of 15LPM. William's saturation's did not come up very quickly, and Lauren was calling for HELP. The hospital has an intercom system, and the Clinical Assessment Team was called in to asses William. Within seconds a group of about 12 Physicians, Practitioners, Residents and nurses were in our room. William had recovered and was back to his 2LPm of oxygen (still higher than normal, but lower than 15LPM!) and the assessment team decided that he may be ok- but they would get a bed ready in the PICU incase of another episode. Within 30 minutes later, William did it again. He turned blue, and it was so hard watching my baby struggle to breath. He was such a fighter though. The assessment team said to bring William over to the PICU. We gathered all the stuff we needed, and RN Lauren, PCT Stephen, and and RT (drawing a blank, I don't remember which of our amazing RT's were with us) rushed from the old building of PCH, 4th floor- to the New building of PCH, 6th floor! What an adventure. The crib William was in was not in great condition, and the wheels didn't roll that well. It took all of Lauren and Stephen's might to push the crib down the mile long hallway of PCH that we had to rush down- while our RT was holding oxygen securly to William's face. I was running ahead with a wagon full of our belongings. William really wasn't doing well by that time, and we got into our PICU room in a total rush. We tried numerous interventions to stabilize William's breathing- and nothing was working except continuous albuterol, with positive force pressure of Oxygen via mask at 20LPM. He was responding to the positive force pressure of oxygen and albuterol, and was saturating at 100%- but someone had to hold it securely to William's face, and keep the albuterol going. Which we couldn't do forever. After doing so for about an hour, the team pulled me aside for a QUICK gathering. We recognized that William was in FULL RESPIRATORY FAILURE, and all efforts being made weren't working 100% to our advantage. There was nothing else we could do to restore William's breathing at that point, OTHER than placing a n INTUBATION tube down William's throat- sedate him and use a ventilator for breathing support in hopes that his lungs will regain strength after they rest.
During the midst of all of this happening, I managed to get ahold of my mom and she was able to get to the hospital immediately. I was there all by myself, and my husband was in Canada. I had talked to him as well, and it was just extremely HARD to be apart at that time. In the position we were in, it was nearly impossible for Richie to return home at that moment that William went into Respiratory Failure. He was going to be back from the trip on June 17- and him being away was super torturous. I am so thankful my mom is so supportive, understanding, ALWAYS there, and just amazing. She was there holding my hand, kissing her grandson who was fighting for his life, and taking care of the world around me when I could not. All I was focusing on was my baby boy, and how I WAS NOT ready to say goodbye to him. He was fighting SO HARD, so I fought with him.......
When our medical team looked at me and said "What are your wishes?" I said "PLACE THE TUBE!" And they asked me if I was staying in the room, and I told them no that I am placing all my trust in them since William was an extremely DIFFICULT Intubation- and would be out in the waiting room with my mom. I knew they would have a difficult time intubating him, and I knew that they would be successful after a challenge. I don't think I could be there in the same room to watch the difficult challenge, watch my baby fight for his life, and watch the chaos of the Interventionist Nurse Practitioner RT's and RN's struggle at a successful intubation. Sure enough- It was such a difficult task after the NP had tried intubating William 2x, the interventionist tried 2x, and they had to call the on call anesthesiologist to come in and intubate in which he did so successfully on the second attempt. After 6 attempts at intubation- the Tube was Successfully placed!
The team came out in the waiting room to get me, and my mom so we could go back to our Wild Man Willie's bedside and be with him. He has been sedated already, and was getting some much needed rest. He was getting breathing support from a mechanical ventilator- and with all the medical 'stuff' all hooked up to him, he looked incredibly comfortable and peaceful. Made my heart slow down just a bit after going through all that, BUT I was still hurting that my little boy was fighting so hard.
William was intubated for 14 days. Richie returned home from Canada on June 17th, and came right to the hospital. Each day William was needing more and more sedation meds to keep him calm, comfortable and to keep him from pulling his ETT Tube out. William had a special test done that determined that his diaphrahms were not moving, and possibly paralyzed from going into respiratory failure. The team came to Richie and I to share that information, and we discussed that William's lungs may be paralyzed and taht we can continue to keep him sedated and on the hospital ventilator and see if he takes a turn and starts breathing OR we could explore the options of having a trach surgically placed into William's airway and give his breathing support through a home ventilator and take him home after he recovers. We made some quick decisions and chose to go with the trach placement. OUR ENT came in on a Saturday June 25th and placed William's trach. Surgery went quick and successful.
William came back from surgery- and we were able to see our little man AWAKE and he looked even more comfortable. We were immediately able to start weening William off of all the sedation meds he was on. He was more and more awake and looking so cute. The trach, vent, and circuit scared the crap out of Richie and I becasue we though we would never figure out how to manage all of that equipment! Within a day we were feeling comfortable with all of the stuff, and started holding William and handeling him with his new gear so we could get used to it! We had to stay in the PICU for one more week, until he had his first trach change. When having a trach- you have to change it to a new sterilized trach each week. The first trach William had was sutured into his skin- so our ENT had to come to the PICU for our first trach change to untie the sutures and place the new trach. He was also checking out the stoma, and evaluating William;s airway. After the trach change, our ENT gave us the go ahead and go to the stepdown unit to the Trach and Airway unit where we would learn to care for William with all his new gear and where William would continue to ween off of all the drugs he was on while being monitored 24/7. We were told we could expect another 30-45 days in the hospital for this process. We transferred out of the PICU on July 4, 2011.
We spent days following our transfer to the trach and airway unit "Nesting". Richie and I spent nearly every second in our little hospital room with William learning all we could learn about William's new trach, and vent. It takes alot of education to learn how to care and manage a trach and also the vent. William also had another Broviac central line IV placed, and we were keeping it for long term access which also meant we had to learn how to manage and care for the Broviac.
In 10 days, we had checked off on all the items on our list to learn before we take William home with all his new gear. When the staff said it takes most families 30-45 days to check off on all the things we had to learn to care for the trach and vent and we completed it in 10 we were so proud of ourselves. The Trach and Airway said we set a Unit record for sure, and they were so proud of Richie and I for being such proactive parents. Richie and I both were so eager to learn and perform all it took to care for William. From suctioning the trach, bagging William, changing the circuits, doing a trach change, flushing the broviac, administering IV meds, cleaning and organizing equipment- Richie and I were in to together.
On July 14, 2011 we learned all we needed to learn, and William discharged from the hospital. We took our Fighting Fighter Wild Man Willie HOME!
After being vent dependant for all of July at and most of August at home- William started breathing all by himself with no vent support, nor oxygen support on August 27th, 2011. To keep William;s CO2 levels down, we still used the vent at night until mid October 2011. By that time William was fighting the vent, and I stopped using the vent 100%. William only needed oxygen here and there.
Fast forward to now- and I am SO excited and proud of where we are. For our one year Trachiversary- where the care we provide for William has dramatically increased and our work is more intense, I can say we are BETTER off now that we have ever been. William has traveled all over Northern Arizona, he has been to New Mexico and loves car rides. We have been able to visit Daddy since he travels 100% of the time as a Journeyman Lineman. We have even taken William on an airplane to Texas and we have been here in Texas for nearly 6 weeks. I have William's respiratory needs so under control, and I am proud of my hard work to flawlessly care for William and all his intense medical needs. I am proud that my husband works just as hard- to provide EVERYTHING for us, and is the best dad, and most pro-active dad I know when it comes to taking part in the needs of his medically fragile child.
Wednesday, July 4, 2012
Tuesday, July 3, 2012
Travel Update!
Howdy Leon Family Fans. We have been in Texas for 35 days, and we have 13 days left of our 6 week getaway. We have been busy spending time with Richie and checking out the sights around Houston- while trying to keep cool from the heat and major humidity!
Richie got a Smoker BBQ and on Sundays we have "Smokin Sundays"- Richies smoked meats are killer. To be quite honest, everything Richie makes is super killer. I always tell people, he could make you a plain jane turkey and cheese sandwich and it would be the best turkey and cheese sandwich you have ever eaten. He has such a magic touch when preparing meals. He made these stuffed jalapenos the other night and they were hot as hell, but so incredibly delicious.
We went to Nasa Space Center Houston a few weeks ago and it was neat to see the Space Center. When we were out on our Tram Tour it started raining. We got to the first building to tour. All the people on the tram train unloaded and we went into the building- it was the command center where they have mockup versions of many space ships etc. We even got to see real live space rover's. When we were inside the building, it started raining so hard, ad lightening. We were unable to re load onto the tram train due to the lightening warning and we were stuck in the command center for 1 1/2 hours! After that, we were unable to finish the tour because we had to hurry and get back to the main building. What an adventure!
The kiddos and I went to the Houston Zoo on June 21st. It wasn't that hot out that day, but was very humid! We were there for 3 hours. It was so beautiful at the Zoo, lots of trees and awesome animal exhibits. Our favorite part were watching baby elephants play and wrestle in a large pool of water. They kept dunking each other, and tackling each other. Cutest thing ever.
It has been interesting going out and about by myself with the kiddos here in Houston. Loading up all William's gear takes lots of extra time, and effort. The travel oxygen we brought with us is big, heavy and bulky. The Wheelchair is big, heavy and bulky- and is in 2 pieces. Everywhere I go, I have to attach or detach the top portion of the wheelchair and load that into the truck. Then fold up the bottom wheelbase portion of the wheelchair and load it up. Loading up takes alot of time and patience- not only with William, but with Isabell too! Richie's ford truck that we are driving is taller than my Tahoe and Isabell struggles to get in, and most of the time struggles with buckling the seat belt. So to get ready I go out and start the truck so it can cool off, and load my personal gear (purse, phone, drink, food etc) I round Isabell up and anything that she wants to bring in the truck with us (a drink, toys, food etc) I hoist her into the back seat and I get in to buckle her and get her set up. Then I round William and all his gear up (feeding equipment, suction machine, ToGo bag, O2, toys, and the prince himself) and I hoist William into his car seat. Buckle him up, throw all the gear in. Then I load up the wheel chair - break it down into 2 pieces and hoist it into the bed of the truck (unless its raining, in which I then put the top seat portion of the chair into the front seat of the truck). I bet y'all were wondering how I did all that- and BAM, that's how!
One of our favorite places we have visited has been the Children's Museum of Houston. We have been there twice already, we loved it so much. Isabell got to play, and interact with many of the awesome interactive exhibits they have. They have this miniature kid town where kids can play and pretend. William, Isabell and I really enjoyed the kid town. We used our imaginations, played, laughed and had a ton of fun.
We also went to the Houston Museum of Natural Science. I really enjoyed it, but didn't get to see it all because it was incredibly boring for the kiddos. Totally a place where you CANT TOUCH anything. Doesn't work well with my Isabell who touches everything! We did get to take a special tour at the museum featuring real stories and artifacts from the ship Titanic. I enjoyed that, but I had to drag Isabell through it telling her NOT to touch a thing! (She touched almost everything- I am sure the museum staff wanted to kill us!) We were not there for long, but enjoyed our time together. If it weren't so hot and muggy out we would go out and walk around the city more.
Last weekend we went to Galveston. The beach there was so dirty, and it was kindof stinky there! It was raining alot on Saturday, but we got to walk around a bit and see a few things. There was Carnival Cruise Ship docked there with people loading up onto it, so that was neat to see the Cruise Ship.
Richie has the 4th off, so we plan on sleeping in and spending the day together. Over the weekend, we are going to go to Shreveport, LA. The drive over there is beautiful, and it will be nice to get out of the trailerhood for the weekend.
I have something that I want to rant about....
To all my friends and family-
Having a special needs child has changed my entire outlook and perspective on life. I was once that person (like most of you) who would see parents out and about with their special needs child or children and just stare. Not staring out of disrespect per say, but staring like they were different or something. Staring because I didn't understand.
Now that I have a child with many special health challenges and different abilities than the average bear, and I am the one who is being stared at everywhere we go. I would like to help the world understand people like me. I encourage our audience to say HELLO. I encourage those who are staring because we look different, or because you don't understand to make eye contact and smile. It's ok, we are human too. Parents like me like smiles, conversation, and even a helping hand at times. Instead of scurrying along to get where you are going, hold the door open for us at the store if you see us coming. If you see a mother of a child who is wheelchair bound, keep in mind that it takes everything in her might to manage that wheelchair and the child in it who may not be able to care for oneself. If you see her out with her child in that wheelchair, make her day a little easier by holding the DAMN door open for her, say hello and ask her if she freaking needs help! Most of us special needs moms will say "No Thanks, we got it" and that's because we have gotten used to doing it all by ourselves.
Many parents who have children with special abilities and require so much do not venture out that often, and rarely get to have a normal day. It takes alot of patience and preparation just to leave the house depending on how much equipment and gear the child requires. It is also hard to take a child out and about who is immobile. They are heavy, need diaper changing, among other things that require constant care. When you ever see a family like so out and about (at the store, county fair, Disneyland, etc) keep in mind that they are only trying to live life as normally as they can while being different. Would it be so hard to lend a helping hand when they are struggling through the door? Would it be so hard to smile at them and say "Hello"?
Don't be ignorant. Educate yourself, and surround yourself with knowledge on the matter. To better understand us special needs families- volunteer at your local Children's Hospital. Volunteer at local organizations that specialize in caring for children with disabilities. Learn how hard it is to care for these amazing children, but how they are just as human as you and the average bear. They just have different abilities than most. Connect with their parents, and let them know they are doing a good job! It makes their day.
I have to share the sweetest thing. We are here in Texas, and we have been hanging out with Richie's co-worker, Bit's family. He has a really great wife named Dawn, a 10 year old son named Cole and a functioning special needs 4 year old named Reya. The first time I went over to visit them at their house while the guys were at work- I pulled up in the driveway and Cole scurried out to greet me. He asked what he could help with, and helped me unload everything in the truck including the heavy wheelchair and oxygen tank and even helped Isabell out. And he didn't stop helping until he knew were comfortable. I have never had a 10 year old be so kind, helpful, understanding and respectful. And hey- I am not throwing anyone under the bus here BUT many of my very own family members have not even been so helpful and understanding. I am so glad I met Cole, he's a good kid- and is setting some amazing examples to the society we live in. It's because he is the older brother to a special needs child.
So here is to all those friends and family of mine who don't have a special needs sibling. I want to spread awareness about understanding people with special needs. Understanding people with special abilities. Understanding that we are not from another planet, and we love to connect with people. We do not love to be stared at, pointed at, and made fun of.
When people are continuously staring at me and William it takes alot of my might to just smile back. I would love to make smart comments to them like "Take a picture, it will last longer" BUT how can I spread awareness that we are HUMAN like you if I am always attacking the staring audience? I don't say things like that to people, I just hand them a Team William business card- and sometimes hand out a Team William wristband which has links to our Facebook page, and a link to this blog. I hand those out to share our story, and share how we are living life to the fullest. We have hopes, dreams and goals too- they just are extra special when caring for our special children. It takes extra time and patience to achieve hopes, wishes and dreams when your the parent of a special needs child.
I recently had a jackasaurus approach me to tell me that it was disturbing that I left my William sitting in his wheelchair outside of an RV while I went inside to look inside. Here's the scene... We went to the Houston Boat Show and luckily there weren't many people there, so it wasn't busy. In one area of the showroom was some RV's. Richie, Isabell, William and I scurried over to look at the RV's, and we popped into one to check it out. Obviously, wheelchairs cannot go inside. We parked William outside the RV we wanted to look at, and popped inside for 5 minutes. Meanwhile I was chasing Isabell back and forth and I glanced at William 5-6 times in the 5 minutes. After I was done looking inside, Isabell and I walked around the outside of the RV and then I got William and started to push him along. An older man, who I have nick named Jackasaurus, approached me to tell me how disturbing it was that I left my child sitting out in the middle of God Knows What. For those of you that know me, I wouldn't put William in danger or harm if MY life depended on it. NOR was he left in an area alone with no supervision. I responded to the jackasaurus that I am sorry I have offended him, but my child is perfectly fine and to mind his own business and scurry along. He proceeded to call me a Fucking Bitch. being that I am the feisty gal that I am, and this jackasaurus was in the wrong- I hauled off and hit him as hard as I could in the arm, grabbed him by the arm and told the guy "I would like you to meet my husband and tell him what you just told me" and I yelled for Richie who came running out of the RV so fast! By that time the jackasaurus was yelling "Assault" and Richie asked him what the hell his problem was and the jackasaurus had nothing to say. This guy popped out of nowhere, seen something that he thought he should take charge over- and was mouthy to the wrong special needs momma. I have fought tooth and nail for William, and have gotten this far with him in his last 2 1/2 years, I'd have to say that I am doing something right. Anyone who is disturbed by that can go fly a kite. We immediately left the Boat and RV show with no visits from Security or the Law. We realized we are better than that, and I hope that jackasaurus had a bruise to remind him of what a HUGE Jack Ass he is.
So to all- I am now and forever going to be passionate about spreading awareness. Spreading awareness NOT to be ignorant! Spreading awareness that some people need to set their ego's aside, and stop being ignorant to the fact that People with Disabilities are PEOPLE too.
Richie got a Smoker BBQ and on Sundays we have "Smokin Sundays"- Richies smoked meats are killer. To be quite honest, everything Richie makes is super killer. I always tell people, he could make you a plain jane turkey and cheese sandwich and it would be the best turkey and cheese sandwich you have ever eaten. He has such a magic touch when preparing meals. He made these stuffed jalapenos the other night and they were hot as hell, but so incredibly delicious.
We went to Nasa Space Center Houston a few weeks ago and it was neat to see the Space Center. When we were out on our Tram Tour it started raining. We got to the first building to tour. All the people on the tram train unloaded and we went into the building- it was the command center where they have mockup versions of many space ships etc. We even got to see real live space rover's. When we were inside the building, it started raining so hard, ad lightening. We were unable to re load onto the tram train due to the lightening warning and we were stuck in the command center for 1 1/2 hours! After that, we were unable to finish the tour because we had to hurry and get back to the main building. What an adventure!
The kiddos and I went to the Houston Zoo on June 21st. It wasn't that hot out that day, but was very humid! We were there for 3 hours. It was so beautiful at the Zoo, lots of trees and awesome animal exhibits. Our favorite part were watching baby elephants play and wrestle in a large pool of water. They kept dunking each other, and tackling each other. Cutest thing ever.
It has been interesting going out and about by myself with the kiddos here in Houston. Loading up all William's gear takes lots of extra time, and effort. The travel oxygen we brought with us is big, heavy and bulky. The Wheelchair is big, heavy and bulky- and is in 2 pieces. Everywhere I go, I have to attach or detach the top portion of the wheelchair and load that into the truck. Then fold up the bottom wheelbase portion of the wheelchair and load it up. Loading up takes alot of time and patience- not only with William, but with Isabell too! Richie's ford truck that we are driving is taller than my Tahoe and Isabell struggles to get in, and most of the time struggles with buckling the seat belt. So to get ready I go out and start the truck so it can cool off, and load my personal gear (purse, phone, drink, food etc) I round Isabell up and anything that she wants to bring in the truck with us (a drink, toys, food etc) I hoist her into the back seat and I get in to buckle her and get her set up. Then I round William and all his gear up (feeding equipment, suction machine, ToGo bag, O2, toys, and the prince himself) and I hoist William into his car seat. Buckle him up, throw all the gear in. Then I load up the wheel chair - break it down into 2 pieces and hoist it into the bed of the truck (unless its raining, in which I then put the top seat portion of the chair into the front seat of the truck). I bet y'all were wondering how I did all that- and BAM, that's how!
One of our favorite places we have visited has been the Children's Museum of Houston. We have been there twice already, we loved it so much. Isabell got to play, and interact with many of the awesome interactive exhibits they have. They have this miniature kid town where kids can play and pretend. William, Isabell and I really enjoyed the kid town. We used our imaginations, played, laughed and had a ton of fun.
We also went to the Houston Museum of Natural Science. I really enjoyed it, but didn't get to see it all because it was incredibly boring for the kiddos. Totally a place where you CANT TOUCH anything. Doesn't work well with my Isabell who touches everything! We did get to take a special tour at the museum featuring real stories and artifacts from the ship Titanic. I enjoyed that, but I had to drag Isabell through it telling her NOT to touch a thing! (She touched almost everything- I am sure the museum staff wanted to kill us!) We were not there for long, but enjoyed our time together. If it weren't so hot and muggy out we would go out and walk around the city more.
Last weekend we went to Galveston. The beach there was so dirty, and it was kindof stinky there! It was raining alot on Saturday, but we got to walk around a bit and see a few things. There was Carnival Cruise Ship docked there with people loading up onto it, so that was neat to see the Cruise Ship.
Richie has the 4th off, so we plan on sleeping in and spending the day together. Over the weekend, we are going to go to Shreveport, LA. The drive over there is beautiful, and it will be nice to get out of the trailerhood for the weekend.
I have something that I want to rant about....
To all my friends and family-
Having a special needs child has changed my entire outlook and perspective on life. I was once that person (like most of you) who would see parents out and about with their special needs child or children and just stare. Not staring out of disrespect per say, but staring like they were different or something. Staring because I didn't understand.
Now that I have a child with many special health challenges and different abilities than the average bear, and I am the one who is being stared at everywhere we go. I would like to help the world understand people like me. I encourage our audience to say HELLO. I encourage those who are staring because we look different, or because you don't understand to make eye contact and smile. It's ok, we are human too. Parents like me like smiles, conversation, and even a helping hand at times. Instead of scurrying along to get where you are going, hold the door open for us at the store if you see us coming. If you see a mother of a child who is wheelchair bound, keep in mind that it takes everything in her might to manage that wheelchair and the child in it who may not be able to care for oneself. If you see her out with her child in that wheelchair, make her day a little easier by holding the DAMN door open for her, say hello and ask her if she freaking needs help! Most of us special needs moms will say "No Thanks, we got it" and that's because we have gotten used to doing it all by ourselves.
Many parents who have children with special abilities and require so much do not venture out that often, and rarely get to have a normal day. It takes alot of patience and preparation just to leave the house depending on how much equipment and gear the child requires. It is also hard to take a child out and about who is immobile. They are heavy, need diaper changing, among other things that require constant care. When you ever see a family like so out and about (at the store, county fair, Disneyland, etc) keep in mind that they are only trying to live life as normally as they can while being different. Would it be so hard to lend a helping hand when they are struggling through the door? Would it be so hard to smile at them and say "Hello"?
Don't be ignorant. Educate yourself, and surround yourself with knowledge on the matter. To better understand us special needs families- volunteer at your local Children's Hospital. Volunteer at local organizations that specialize in caring for children with disabilities. Learn how hard it is to care for these amazing children, but how they are just as human as you and the average bear. They just have different abilities than most. Connect with their parents, and let them know they are doing a good job! It makes their day.
I have to share the sweetest thing. We are here in Texas, and we have been hanging out with Richie's co-worker, Bit's family. He has a really great wife named Dawn, a 10 year old son named Cole and a functioning special needs 4 year old named Reya. The first time I went over to visit them at their house while the guys were at work- I pulled up in the driveway and Cole scurried out to greet me. He asked what he could help with, and helped me unload everything in the truck including the heavy wheelchair and oxygen tank and even helped Isabell out. And he didn't stop helping until he knew were comfortable. I have never had a 10 year old be so kind, helpful, understanding and respectful. And hey- I am not throwing anyone under the bus here BUT many of my very own family members have not even been so helpful and understanding. I am so glad I met Cole, he's a good kid- and is setting some amazing examples to the society we live in. It's because he is the older brother to a special needs child.
So here is to all those friends and family of mine who don't have a special needs sibling. I want to spread awareness about understanding people with special needs. Understanding people with special abilities. Understanding that we are not from another planet, and we love to connect with people. We do not love to be stared at, pointed at, and made fun of.
When people are continuously staring at me and William it takes alot of my might to just smile back. I would love to make smart comments to them like "Take a picture, it will last longer" BUT how can I spread awareness that we are HUMAN like you if I am always attacking the staring audience? I don't say things like that to people, I just hand them a Team William business card- and sometimes hand out a Team William wristband which has links to our Facebook page, and a link to this blog. I hand those out to share our story, and share how we are living life to the fullest. We have hopes, dreams and goals too- they just are extra special when caring for our special children. It takes extra time and patience to achieve hopes, wishes and dreams when your the parent of a special needs child.
I recently had a jackasaurus approach me to tell me that it was disturbing that I left my William sitting in his wheelchair outside of an RV while I went inside to look inside. Here's the scene... We went to the Houston Boat Show and luckily there weren't many people there, so it wasn't busy. In one area of the showroom was some RV's. Richie, Isabell, William and I scurried over to look at the RV's, and we popped into one to check it out. Obviously, wheelchairs cannot go inside. We parked William outside the RV we wanted to look at, and popped inside for 5 minutes. Meanwhile I was chasing Isabell back and forth and I glanced at William 5-6 times in the 5 minutes. After I was done looking inside, Isabell and I walked around the outside of the RV and then I got William and started to push him along. An older man, who I have nick named Jackasaurus, approached me to tell me how disturbing it was that I left my child sitting out in the middle of God Knows What. For those of you that know me, I wouldn't put William in danger or harm if MY life depended on it. NOR was he left in an area alone with no supervision. I responded to the jackasaurus that I am sorry I have offended him, but my child is perfectly fine and to mind his own business and scurry along. He proceeded to call me a Fucking Bitch. being that I am the feisty gal that I am, and this jackasaurus was in the wrong- I hauled off and hit him as hard as I could in the arm, grabbed him by the arm and told the guy "I would like you to meet my husband and tell him what you just told me" and I yelled for Richie who came running out of the RV so fast! By that time the jackasaurus was yelling "Assault" and Richie asked him what the hell his problem was and the jackasaurus had nothing to say. This guy popped out of nowhere, seen something that he thought he should take charge over- and was mouthy to the wrong special needs momma. I have fought tooth and nail for William, and have gotten this far with him in his last 2 1/2 years, I'd have to say that I am doing something right. Anyone who is disturbed by that can go fly a kite. We immediately left the Boat and RV show with no visits from Security or the Law. We realized we are better than that, and I hope that jackasaurus had a bruise to remind him of what a HUGE Jack Ass he is.
So to all- I am now and forever going to be passionate about spreading awareness. Spreading awareness NOT to be ignorant! Spreading awareness that some people need to set their ego's aside, and stop being ignorant to the fact that People with Disabilities are PEOPLE too.
Thursday, May 31, 2012
Call us Master Travelers!
We Made It!
All the packing, planning, organizing and preparation that it took me to get ready for our Texas Summer Adventure is already paying off. I am so proud of myself for accomplishing this goal, and crossing this off the ole bucket list of things to do with a Differently Abled child that requires so much care. In my efforts to live life to the fullest, and make some amazing memories- I am glad to check this adventure off the list.
Traveling with the crazy silly amount of bags and luggage went so smooth. Our airport and security experience was good. A super sweet friend of ours met us at my house early AM yesterday to help get us and all our gear to the Airport. And I must say I am the luckiest daughter in the world- I had help from my mom and I don't know what I would have done without her. I am so thankful she was able to take the day off and help us get to Texas. When checking our bags at the Curb, we notified the SouthWest Sky Captains that we had arrived with a disabled child and needed assistance. They were so nice and very helpful. I had to show them my letter from William's pediatrician that stated his diagnosis, and that he was medically fit to fly with all his specialized equipment. I got really nervous for a few minutes because the sky cap asked me if I had the official form printed out from Southwest.com that stated that I am the caretaker of the child and that I know how to manage and operate all the equipment... and I did not have that printout! I explained that I am William's mother/Caretaker and that I am the only person that can operate the equipment! A Southwest Airlines supervisor had to come speak with me (I'm assuming to see if I was competent enough to manage the equipment) she asked me a few questions, and sent us on our way wishing us happy travels. Another Sky cap got us luggage carts and we piled all of our 9 carry ons onto the cart and a transport aid worker helped us with all our belongings from the curb, through security and to our gate! Security was a silly adventure in itself- but went super smooth in my opinion. We had to walk trough the metal detectors and a TSA agent pushed William in his wheelchair past the metal detector. TSA did inspect every medication and every item we had. They even did a full body pat down on me.... not once, but YAY me- Twice. Boobs, Butt, Inner thighs- the whole bit. After getting felt up twice, TSA gave us two thumbs up and wished us Happy Travels! We got to our gate, and had time to grab breakfast at Fox Sports Grill. We tipped our transport aid guy, and we were all set to board the flight! We got a pre-board pass and we were the first peeps to board the plane. William sat in his carseat, and (Between 77%-98%, so I was adjusting the oxygen flow from 0.5LPM to 1LPM to 1.5 LPM to 2LPM. William seemed unaffected, though! He slept for 20-30 minutes. Isabell was a super good girl, she had to hold her me-maws hand during take off and landing! It was cute. Richie met us in the Houston Hobby airport and helped us get our checked bags. We were so HAPPY to see daddy! After we got done at the airport and unloaded all our bags at the RV- we went out for a steak dinner at SaltGrass Steakhouse and then dropped my mom back at Hobby so she could fly back to Phoenix. We had a great first night here in the trailerhood.
Enjoy the photos of our Airport Experience (I wish I had better ones, but this gives y'all a glance of what it was like!)
More updates and photos to come as our summer adventure continues!
Sunday, May 27, 2012
Houston
Hey Leon Family Fans! I am so anxious to leave for our Houston trip. We leave in 3 more sleeps! The past few days I have been restless, and excited to take my kids on one wild and silly adventure. I have everything pretty much packed except for our clothes- I am going to do laundry one last time before I pack the clothes!
The 2 suction machines, pulse oxcimeter, and Oxygen Concentrator that we are taking on the plane are not included in this photo lineup....BUT here is a sneak peek of a few things that are stacked in my living room ready to go!
Pictured below is William's SmartVest Gear that fits nicely in it's designed luggage. I combined the two pieces of SmartVest luggage into a large bag. This will be checked luggage.
Pictured below here is a large suitcase full of Medical Equipment & Supplies. Nebulizer and Neb kits, a variety of different suction catheters, trachs, gravity feeding bags, feeding pump bags, formula, tape, stethoscope, trach cleaning kits, etc. This will be checked luggage.
Pictured below is William's Kangaroo Joey feeding pump. At home it hangs from an IV Pole, and when on the go I put it in an insulated lunch bag (I do not prefer the provided ToGo feeding gear backpacks!). This is attached to William at all times and will be goin with us on the plane.
Pictured below is all of William's medications. There is 1 small lunchbag that will have William's refrigerated compounded liquids with cool packs and the other lunch bag will have a month worth of inhaled antibiotics (AKA Tobi) with cool packs, and they will be placed into the larger Zebra striped bag along with all the unrefrigerated meds-respiratory meds-creams and pastes. It is important that all of these medications stay with me at all times- this bag will go on the plane with us.
Pictured below is what we call our Trach ToGo Bag that will be going on the plane. This goes everywhere William goes, and it has just about everything in it to aid in the event that William has difficulty breathing, or if I need a replacement of something (ex: gauze, syringe, tape). It also has a stock of supplies I need to manage the trach everywhere I go (ex: suction catheters, extra trach ties, saline bullets, saline wipes, scissors, etc) and of course supplies for a diaper change. Kindof like a diaper bag on steroids!
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