We are almost packed to leave for Miss Texas Teen USA 2014............but I got a text from Charlotte today. She said that Judes heart rate is high, his respiratory rate is elevated, and his temp is on the high end of normal. It's Judes CLASSIC symptoms that he is developing aspiration pneumonia. We are hoping and praying Jude is just having either a reaction to the weather or has a mechanical obstruction that we can get out.
Our plan of action is to watch Jude all day tomorrow. If he deteriorates he will not get to go again this year and Mike will stay behind.......again. However if he stays the same or improves we will indeed leave out for Houston. I have a few fears.......I don't want to get to an unfamiliar place and Jude rapidly go down hill thus winding up in a strange hospital. I also don't want to leave him behind when he could come with us and be a part of an important weekend for our family. I want him to be with us and I know Emily does too. However, Jude's health is more important. So we are on a stand still. We will know by 6pm tomorrow which route we are going. We would really like some time away together as a family.
The good thing is that Jude is still smiley which is a good sign. He is resting peacefully right now on his little Futon. I sent some prayers out earlier in the day to a few people I care about asking for prayers. Now we are asking everyone to join in. Not just prayers that he can go, but that he stays well. I am not sure his little body can continue to handle pneumonia.
It's either the Botox or the weather but something isn't working well with Jude. Friday and Saturday night he didn't sleep well. Plus he was very rigid, stiff, and in pain. I did give him Motrin which seemed to help and I massaged his legs. His neck was so stiff that it hurt my left arm to hold him on the couch. He would press it as hard as he could into my forearm. I would eventually have to set him down and he didn't like that at all. However, Jude did sleep well last night. I kept him up later than normal, gave him his sedative, and wrapped him tightly in his blankets. He slept well until about 5:30am.
So I am not sure the Botox is working at all. In fact, it seems to have made things worse. However, like I said it could be the cold. I am not sure on that either since we have kept the house very warm for him.
It's a busy week for us, but a slow one at work. Emily has interview lessons tomorrow and Wed. In addition to nails, tan, and all kinds of prep for her big weekend. Get ready for LOTS of pictures on Facebook. If you don't like it........hide me! Happy Thanksgiving everyone. I wish you the biggest blessings possible and a year of nothing but joy.
Also, we are so much closer to getting Jude's bathroom done. When we get back we are getting some new estimates and we hope to get started after Christmas.
Since Jude's Botox injections he had been sleeping great.........until last night. Oh man it was a long night between Jude and my cat. Poor Jude just could not get comfortable. In the great state of Texas it was very arctic cold last night so we decided to keep our indoor/outdoor cat in. He didn't like that much! He is a very intelligent cat and when he wants outside he raps on our blinds in our bedroom. About 1am he began to rap and rap and rap and rap! Finally, I opened the front door to let him outside for about five minutes. I stood there waiting on him to come back to the front door, but he never appeared. So I went to get a drink of water and suddenly at my back door I hear a knock. I opened the door and there was the cat. So I checked on Jude and then went back to bed. There was my husband and our dog, our indoor cat, and the other cat all snuggled into the bed. There was barely enough room for me. When I repeated this process a few hours later I seriously considered buying a coat for the cat and leaving him outside. Maybe some boots with fur? Insert a giggle.
I am waiting to see the results of the Botox. I know it could take a little while so I am not rushing the possible progress. Hopefully Jude will see more motion and some relief of the pain he was experiencing.
I am happy to report that the fundraiser has done VERY well! We have also had a few friends step forward that work in the remodel industry and they are going to help us accomplish our goal. We will probably wait a little longer to see all our possibilities, but at least now we have a route to go. What a relief.
So today marks the 50th anniversary of the assassination of JFK. What a terrible awful day for the place I live. Dallas is such an amazing city now. It's full of life, love, and historical value. It has a focus on artistic abilities, great food, and eclectic values. I cannot even imagine it being deemed the "City of Hate". When I am out of town and someone asks me where I am from I naturally reply Dallas even though I live closer to Fort Worth. It's like Southerners being asked if they want a "Coke" and then asking "What Kind". Yes, that happens. So to share in history I asked those over 50 on my Facebook to share how they learned of the tragedy. I think it will be interesting to see the responses.
I am blessed. I choose to believe this and I know it's true. This morning I already received two amazing video's/picture montages through social media. The first my cousin sent me and I thought it was so amazing. I really encourage you to watch it.
The title is misleading to me. I thought it might make me feel unsatisfied with my life, but it actually made me smile. I am grateful for every single bean I have and very satisfied with my beans that have passed. Would I rather be rich so I can be at home with my children.......sure, but overall I am happy. My only regret is that I would like another child. It's something we planned and something we talked about, but financially it's not a possibility at this point.
Anyway, the next item I received was this inspirational set of pictures. http://www.buzzfeed.com/txblacklabel/true-love-in-pictures-only-28m7 just take a moment to look at them. This is their normal. She loves him so much that she will carry him for the rest of their lives. People tell us all the time, "I don't know how you do it". We do it because of love and because we want to! Jude deserves 100% and this ladies husband deserved the same.
Jude had a good night after his Botox shots. He was a bit uncomfortable so I put him to bed about thirty minutes prior to his normal bed time, but he slept well. He wasn't super smiley this morning, but I am sure he will be after his Motrin. Last night Mike reluctantly under his own will shared the fundraiser for Jude's bathroom Gena set up. He said he had crunched all the numbers he could and it was time. Within hours his friends had gotten the funds up to $1500!!! In addition several people stepped forward and said they were contractors that did tile, bath's, etc and were willing to help. Mike said if he can find a general contractor to put the sub contractors under and a plumber then we can make this work!!! Mike can do all the demo work. It's finally happening and we will be getting this done for Jude. In fact he had friends that said they can find items very inexpensive and we might be able to keep my tub! I am trying not to get to excited until it happens, but at least this provides hope.
Jude had his Botox shots today. Mike said there were 12 shots total and Jude did very well until the end. Then he started crying. The neurologist doing the shots explained that it takes awhile for Jude's brain to register pain and therefore by the time they were ending he realized what was happening. The doctor told Mike that the shots will feel like Jude has been "frogged" and will be sore. So on their way home Mike mentioned Jude started crying. This makes me sad. However, I did text his nurse about an hour later and she said he was very smiley and happy!
It will take a few days to take affect. We will watch for any respiratory issues from the shots and we will wait to see if they help his pain/tone.
I have had another very busy day today. It started out with Emily reading the story "The Homeless Christmas Tree" to the 5th grade class at Roanoke Elementary. I recommend you read the book to your little ones. While Emily was reading the story I began to realize it was true and an image popped in my mind.
and then tears welled in my eyes. I had to bite my lip so no one saw my tears. It was the tree I passed so many times on I30 towards Fort Worth. How amazing. Then Emily continued to tell the students about the importance of giving back and showed them a new video she made for them last night about her charity.
To continue the tradition of giving back my amazing aunt touched someone's life today too. She posted this story on Facebook.
"I went to applebees alone today, across from me was a guy in a wheelchair, Because of Jude Ortiz, I do not gawk but am very curious, where was his ride, who was he with, I asked him if he drove, he replied no, someone dropped him off, he would take a cab home, I told him I would take him, he asked me to join him, I told him about Jude, he told me about himself (Robert), six years ago he was shot in the back and robbed at his Barber shop, the man wasn't caught, his life forever changed he went on to tell me he lives in a undesirable nursing home and receives only 60.00 a month and he comes eat with it, I told him I was buying his lunch and he said Oh no, I got the 2 for 20 that's to much I insisted, we finished eating, I put my credit card on the table, and the waiter said someone in the place bought our lunch, I demanded to know who, It was a man who was walking to his car, I hugged him and cried and said I didn't even know the guy, the man heard the whole thing and did this for us, As Robert, hoisted himself into the same horrible wheelchair he got 6 yrs ago, he hoisted himself in my car after putting his feet in, his cath bag hit the cement, he pulled it in by his tubing, I dropped him off at what he calls home, I hugged him and left, I pulled over and I cried tears of joy, gratitude and sadness, he said he friended me but it didn't show up, I just know he is Robert. 30 yrs old and that I will NEVER be the same." Very touching! I am so glad that Jude has started a trickle effect that has stretched so far and wide. In addition my friend told me today, ""if you live to be 100, I want to live to be 100 minus one day so I never have to live without you" Winnie the Pooh. Made my day!
Well it was an interesting weekend at our household. I got the final bid on Friday regarding converting the bathroom and eliminating the tub. I expected it to fit neatly in to the amount that's allowed in TX to convert a bathroom..........I was wrong, again! After talking it over with several other contractors I found out it was actually a low big. So I was so frustrated at work and so teary that my friend Gena set up a fundraiser for Jude's bathroom. She had been wanting to do this for awhile, but I kept challenging her for a few reasons.
1. We are better off than a lot of other people are in our situation. 2. This is OUR fault because we didn't have the savings when something tragic happened. 3. Fundraiser for us vs. someone else makes me uncomfortable.
I have a lot to cover in this blog so I hope I don't ramble to much. I learned a lesson this weekend and it's one I want to convey. My husband has nicknamed me "Snow White" partly because I am so naïve and partly because I choose to see the good in life vs. the bad. Well we recently had to replace all four of Mike's tires on his SUV which was a little over $500. I had saved for this so we were prepared. I also have been saving for our trip to Houston for Emily's event and for Jude's bathroom. However this weekend we ran over a construction key that was dropped in our neighborhood and my tire in my van had to be replaced. Once they put it up on the jack we found that the front right tire was wiggling because the bearing/wheel assembly HAD to be replaced. My good friend Gena's husband had already discovered this issue, but we thought we had some time left...negative. So it had to be done..........the estimate $450. Gulp. So I just started crying. It seemed like every time we save for a trip and plan to get away to re-coop our minds the devil attacks us. So Mike looked at me and said, "I take this as a blessing because if that key had not have wound up in your tire we never would have known and I could have lost my whole family on the way to Houston". I agreed with him and was surprised that my Snow White outlook had rubbed off on him. I vowed right there to look at this situation differently. So we took the van to his brother and his brother replaced the parts for about half what the facility quoted. I guess God needed to remind me that sometimes things happen for a reason.
So as frustrated as I was about finances my aunt then called to tell me the family has decided to help with Jude's bathroom for Christmas. How nice, how kind, how thoughtful! They understand the basics of it. They know that we can try to convert as cheap as possible (which we still are) but we also need to make it look decent to not lose house value.......especially since we are nixing the master tub. They get there is a shower next to a bath with a window above so there is demo, plus drain routes, and other issues that make this more expensive than we wanted. They have seen the bathroom and the lay out. So as easy as it is for people to think of solutions for us it's hard to understand until you see the lay out why we are in this jam. They also know my goal is to do the bathroom and then get the carpet out of the downstairs. So they are helping and that is very nice.
Tomorrow Jude goes for his Botox injections to help with his tone and pain in his legs. Mike is taking him. He said he will get 15 shots which makes me sad. I hope the shots don't hurt him and I hope this helps his little legs at night while he sleeps. Jude has had a wet cough lately and wants to be held, but I am keeping positive that he is just fine. He has been very talkative and very smiley with me. I think he will do great in Houston and I hope he will enjoy the change in scenery. We have a great place for him to stay with a pull out couch in the living room just like his futon. We will take his tumble seat and more to help him keep upright to prevent any settling of fluids.
Emily has an event tomorrow at a local Elementary school to talk about the importance of community service and about Emily's Smile Boxes. She will also be reading the children a Christmas story about giving. I am looking forward to it. She also has an Emily's Smile Box event on 12/8 at the Marriott. Here is the invitation if you would like to bring your children. Also, we will be collecting unwrapped toys to give to Toys 4 Tots if you would like to bring one. In addition Emily's Smile boxes will be adopting two angels this Christmas, a boy and a girl. If you would like to help you can visit www.emilyssmileboxes.com for information on donating. Let this Christmas be about hope, forgiveness, and giving from your heart :)
Jude seems to be doing pretty well lately. He is wanting to be held at night, but I don't think it's because he is sick. I honestly think the weather change is causing his body to hurt and being held comforts him. He is also pretty toned out which rather confirms to me that pain is the issue we are dealing with. His Botox appointment is coming up and I am really hoping it will help with his tone a bit and any discomfort he may be having.
As far as the bathroom is concerned I have ran all the figures and all the options through my head. Tomorrow I am emailing the contractor and asking him to get us a final estimate on removing the tub and putting in the 5 foot shower. There is still a window issue and I am afraid there may still be a drain issue, but I am not for certain. Regardless I think they can work with the budget with just the shower. This may decrease our house value, but I think it's what must be done. I can always go upstairs to Emily's bathroom to use a bath tub. I can also save to get a bigger tub in her bathroom. So it will all work out. It may not be the ideal situation, but we have options when many don't.
We are diligently getting ready for Emily's Texas Teen USA competition in two weeks. She is very excited and we are starting to lay everything out and get out the suitcases. If you remember Jude got very ill last year right before competition and was hospitalized. So we are praying that Jude and Emily both stay healthy, no more occurrences happen that cost a lot of money (recent major car issue), that we get blessed with good weather for driving, and that Emily has a great time and stays confident. So a few extra prayers would be great if you can spare them :).
This isn't something I want to blog about, but I promised I would show all sides of Jude's issues good or bad. We are still struggling with Jude's bathroom. However, now we are at the point something HAS to be done. Jude is getting to big for me to safely lift him without hurting him or my already very messed up back (very very bad car wreck in 01). Charlotte is now giving Jude baths in his bed. Allen and Mike are still good, but even Mike made mention that lifting Jude is becoming challenging and he worries about the future. Jude is a VERY big boy. The good news is that we have a crank lift that is on wheels that can maneuver Jude around the house. However, it makes me very nervous and it doesn't seem that safe to me. I have nightmares about him slipping out of the harness and crashing to the floor. These are probably unfounded but I have nightmares anyway.
The problem we are facing is the way our bathroom is set up. We have a bath tub right next to our shower and the narrow space gives us little room to make major changes without a lot of money. I keep getting estimates hoping they will change, but every time they come out well over $18,000 and the insurance willonly cover $7500. So my mind has been swimming for about a year with possibilities.
1. Take out the tub and make one large shower - Less expensive but we lose resale value. I also lose my love of taking a bath.......my one true relaxant, but Jude is worth it. This will probably be the route we go, but even this way is a lot out of pocket. 2. We lose our closet and build one in our bedroom.......this was a 100% possibility until the estimate came out higher than changing out the tub and bath tub due to a drain re route. 3. We sell our current house and build a house with a handicap accessible bathroom. This was a GREAT option considering the equity in our current house until we learned the medical collections have 100% RUINED our credit.....sigh. It's our OWN fault. We didn't have enough savings built up in case of a tragedy. Kids please take note and save early. Save for retirement too! 4. We could convert Emily's bathroom (an easy conversion), but we would need a lift on the stairs. I am afraid the cost of the lift wouldn't leave anything for the bathroom but it is a route I plan to price.
We also need to get this ratty carpet out of my house so Jude's allergies will be better. This IS something I can accomplish but I cannot do both conversions. In the long run I am VERY lucky. We got into our house prior to Jude's diagnosis so we are in a nice home. We have a good house payment and we have multiple options. We aren't in an apartment which would make matters even worse. However, just bear with me that I am so frustrated! People suggest the roll in tubs they see not realizing Jude needs a 5 foot shower that will accommodate a roll in chair and a nurse/parent. The roll up option bath chairs with an extender over the tub might be a solution, but I haven't truly investigated them.
I am at a loss! I am normally SO great with solutions. I am good with decisions, direction, and I have a lot of determination. I need a loan that I could easily pay each month but have no way of obtaining one. It's just frustrating knowing which direction to turn. Next week I plan on getting a final price on converting our shower/bath area into one large shower that is accessible to Jude.
Despite my frustration Jude is healthy. He is very toned out tonight and wants to be held, but he is well and at home. I will take that over any frustration any day!!! I am sure a lot of special needs moms know the perfect solution but this is the first time I have dealt with this and I have one STUBBORN bathroom. So forgive me for a bit while I debate on the best route of us, Jude, the nurses, and resale. Again, we are VERY lucky I am just....blogging my mind out loud.
Yesterday I was talking to a woman who started asking me about my picture of Jude in my office. I explained to her that Jude had a stroke and that's why he is in a wheelchair. She was mortified. I was proud of her for asking lots of questions.
1. Could I feel it when it happened? No 2. Is he okay now? No
The questions went on and I answered them for her. She finally looked at me and said "I am so so sorry". I just smiled kindly at her and replied "There is no reason to be sorry. Jude is very happy. He will never know the fears, heartbreak, or evil we know. All he understands is pure love and his eyes can tell you he is a very happy little boy". Then I took the opportunity to tell her about Emily's Smile Boxes and she seemed much more comfortable.
All Jude knows...........is love and happiness. What an amazing life that is!
