Tuesday, December 31, 2013

cough cough cough snort snort snot

Jude's cough got much better with the steroids....YAY! Now it's back again...BOO!!! He was up and down throughout the night coughing and when he gets on a binge cough it can last 20 minutes or more. Poor kiddo! Still no fever and his color is still really good.  

Last night before he went to bed I was making farm noises for Jude.

What does the cow say? mooooooooo
What does the chicken say? bawk bawk
What does the pig say? Snort Snort

Oh man he would CRACK up at the pig noise. I mean laugh hysterically. It was so very cute and so special!

I am still at a loss with the cough, but we are watching him closely. We have all the right medication, gadgets, and equipment to help him.

Friday, December 27, 2013

Jude and his cough

Jude has been dealing with a chronic cough for the last month. I figured this may be related to either the empyema or his chronic lung disease. We tried to treat the cough for two weeks with breathing treatments and CPT, but then we gave in and went to urgent care. They stated they believed the cough was due to a sinus infection that was causing drainage and therefore made Jude cough. However, after a round of antibiotics the cough is even worse. Jude cannot sit up straight without coughing so hard he vomits.

 So I called Jude's pulmonologist yesterday and explained all the symptoms and information. Since it's now been a month they put him on steroids and increased his breathing treatments. They also said it's okay to keep him at a 45 degree incline like they would in the hospital. It wasn't a good night because Jude woke up coughing several times.

Jude's oxygen level in his blood is good, his color is good, and he is still smiling which are all good signs. However, this cough is awful. I am wondering if other special needs moms could provide any information they have on chronic lung disease and how you have dealt with it. When did you start to notice it was getting worse? This issue concerns me and I am hoping the steroids will work for Jude!

Also, we got some bad news regarding the bathroom conversion. I am so irritated by it that I can't even blog about it yet. I just have to try to find a solution.

Friday, December 20, 2013

20 things I have learned in 2013

1. It's okay to say no

2. Charity work can be time consuming and stressful but worth every second

3. I complain a lot so I stopped! Okay, I am still working on this one, but I am getting there

4. I may be 40 but I think I am 25, but then body reminds me I am 40.

5. I get noise pollution and I have to excuse myself from the room sometimes

6. Fear and anxiety can be replaced with peace and acceptance if you just let go

7. Mourning a friends loss can happen even without a death involved

8. Forgiveness helps your soul so much more than harboring bad feelings and suspicion

9. I realized I get angry at women about to have healthy babies........let that go too.

10. I am still growing and learning.

11. I can't do it all, but I think Jude's nurse can!

12. I am messy.........and that's just the way it is folks!

13. I am responsible for my own happiness

14. There will never be a proper balance between my home life and my work. I have spent the majority of my life working and I miss my children.

15. I love to walk regardless of my husband giving me a hard time

16. Hospitals should come with mandatory bars

17. That my disabled son has taught me more than a college education could ever give me

18. I understand Jude's medical condition better than I ever have. I understand his potential progress and his limitations. When people give suggestions regarding certain improvements I know are impossible I now simply thank them for their sweet thoughts and move on.

19. My daughter is shy like her father and is not outspoken like I am. I think this could be a blessing. Sometimes my mouth runs away from me!  

20. The innocence in my sons eyes will never fade and I love that. When I say he will never know cruelty or a broken heart and that I am very happy about that.......I mean it!

Wednesday, December 18, 2013

Jude and the little red fire truck

The other day we went shopping for Emily's first Christmas Angel through Emily's Smile Boxes. The little boy had requested a fire truck as his present. As we combed through the different variation of fire truck toys I caught myself getting teary. I quietly turned to Mike who just smiled. He knew that I was mourning again for the boy I wanted to buy fire trucks for. The one that would be running to the tree on Christmas day.  It still happens..........even after 5 years I still on occasion get a bit emotional. Then I get home to Jude and I remember just how amazingly blessed I am. So that very night I logged online and ordered Jude a cute bright red fire truck with working lights and a siren. I know he will love it very much!  

Last night we went to the Dallas Cowboys kids Christmas party that is given for the children of employees. I watched the kids running around through the blow up mazes and around the field. They threw footballs, ate cookies, and sat on Santa's lap. Mike just looked at me and said "I would probably be chasing after him huh?". I just smiled. He probably would, but Jude enjoyed the party in his own way. He loved the bright lights chasing through the stadium. He listened to the music, listened to the kids, and he really enjoyed being rolled around the field. Jude didn't last long because it all became overwhelming, but before we left we paid Santa a visit. Santa asked if he could hold Jude's head (because Jude kept swinging it out of his wheelchair) and then he posed for the picture. After the picture Santa held Jude's head close and kept saying, "I love you. Remember Santa loves you Jude!". It was SO sweet! I was so impressed with him and his kindness.

Merry Christmas everyone! May you be blessed beyond measure.

Monday, December 16, 2013

Jude's dr visit and the Emily's Smile Box event

Saturday we took Jude into the doctor and they said they believe that he has a sinus infection which is causing drainage which is in turn causing Jude's cough. So she prescribed him Augmentin to clear up the sinus issue. Unfortunately, Jude woke up throughout the night, vomiting, crying, and with bright red cheeks. So he had a reaction to the medication and getting the medication changed out has been like pulling teeth. However I am sure it will get resolved. So Saturday night was full of us using the suction machine and trying to keep Jude comfortable.

I had to be up very early on Sunday to get ready for the Emily's Smile Box Christmas party so I was dragging a bit. However, the party itself turned out wonderful. Our turn out wasn't as big as it normally is, but that's okay. We filled 250 boxes, Santa visited all the kids, we collected 20 coats for the homeless, and 2 boxes full of toys for Toys for Tots. We then went to deliver the boxes to 4 different hospitals, but Cook's in Fort Worth could use them all.

Here are some photo's from the event.


We are blessed beyond measure with supportive friends who continue to help Emily's Smile Boxes. Thank you for all your help!

Friday, December 13, 2013

A happy Jude!

Jude still has a pretty bad cough and today it sounded a bit "barky". So we will be taking him to the doctor over the weekend. He still doesn't have a temp, his lungs are clear after a neb treatment, and his stats are good, so we feel comfortable waiting. He is still smiling at me a lot, but he was rather uncomfortable yesterday.

So we will watch him and just make sure it doesn't get any worse then we will take him into Cook's urgent care some time this weekend to have him evaluated. I know they will do an X ray and Lord let's pray there is nothing on it. Charlotte just thinks Jude might need a little antibiotic to push him over this. He might need that or a steroid.

The good thing is that he is pink cheeked and happy.

Tuesday, December 10, 2013

A quick little update

I am not sure why I couldn't use the proper words on my prior blog, but I am chalking it up to very cold fingers. I am NOT a winter person at all. The dark gloomy skies make me cold and cranky. I would rather be sitting in 105 degree weather vs. being cold and miserable. Some people are cold weather and some are warm weather..........I am most definitely a warm weather person.

Today we have our LAST bid on the bathroom. I am anxious to see how the pricing comes out and then we will make a final decision.

Jude is well. He still has his rotten cough which increases when he is upright, but there is no temperature issues. Charlotte and I both noticed yesterday that Jude would turn towards our voices but he would never "find" us. Meaning he would never focus on us. Generally he will look at you very briefly before his brain scrambles what he is seeing and then he looks away. His brain "scrambles" because of the cortical visual impairment. Yesterday he didn't do this. She believes he is seeing shadows because it's been so dark and gloomy outside. I was very happy to see Jude yesterday whenever I got home from work. After being with him for several days I missed him terribly.

Hope everyone stays warm!

Sunday, December 8, 2013

Jude, Ice, and more oh my!

Welcome to the re-cap of Iceamegaddon 2013! lol. On Thursday night at work they had predicted there would be some unpleasant weather hitting the Dallas/Fort Worth metroplex. We took note of these warning, but we also know that the weather changes within about 5 seconds here so it's always a wait and see situation. When my boss was leaving on Thursday he went to get in his car and called to tell me, "drop everything and go my car is frozen". So here is the situation with TX and winter weather.....we don't do it! Yes, we know that people up North endure this all the time, but we don't. First, we get ice and a lot of it not snow so this creates extremely dangerous driving conditions. We also have very few sand/salt trucks and I had never even seen a snow plow until this weekend. So Texas just isn't prepared for situations like this.

The ice began falling Thursday night and it fell.........all night! When we got up the next morning this is what we saw

That's ice......not snow.

Jude's nurse couldn't make it in on Friday so I got to spend the amazing day with Jude. Well until I realized I actually HAD to go to work to release a deposit I had forgotten to release. I drove in the Ice bowl of 89 and many others this was the worst storm I have ever driven in. The semi's had melted some of the ice and this had created huge ice ruts in the highway. It was like driving on a horrible old country road with large potholes. Which in turn caused this situation.


That's hundreds of Semi's stranded. I felt so sorry for them! Many of them said they were from up North and had never experienced anything like this. They had been stuck for more than 24 hours, were running out of gas, and now the stations were running out of gas. Luckily I did see some people bringing drivers food and water.

Here is a video of Emily crashing and burning in the back fence.

So we are very thankful for a warm home, electricity, and water during this Texas ice storm. I got three full days of taking care of Jude and it was nice. I gave him his baths and my back can testify we are REALLY thankful for the bathroom money. Anyway, he still has a very bad cough, but we are staying on top of it and he is a super happy little boy. I think he is happy we had some ice days. Tomorrow we head back to work and I will miss Jude. He has really been talking to me and has been insisting I hold him. I got a lot of laundry done, but not without his resistance. I would share a video of him with you, but my links are being stubborn so I will save it for tomorrow.

Wednesday, December 4, 2013

A little update on Jude's health

The good news is that Jude's color is still great and he is still smiling. Bad news is that he is still really coughing a lot. Charlotte mentioned to Mike that she is a little concerned about bronchitis. Jude still isn't running a fever and we can open his lungs with the breathing treatment. We have been keeping Jude at a 45 degree angle or more to help keep any fluids from settling in his lungs.

So we are still guessing and watching Jude. I am still not a fan of the botox. It doesn't seem like it has done much for him at all.

Tuesday, December 3, 2013

Judes isn't well and the recap off Miss Teen

Jude had a bad night and to be honest I was so exhausted that I didn't hear him like Mike did. I would get up after hearing him cough, gag, and try to vomit only to find Mike already standing in his room. Every now and then I have nights like this. I guess it's a build up of not sleeping and it's Mike that hears Jude first vs me. So I would see Jude was being taken care of and shuffle back to bed. About 1:30am Mike gave Jude some Motrin and he seemed to do a little better. We knew he had a wet cough going to Houston, but the car ride upright really helped him. However, stack on the change in weather.......AGAIN and he is not well. Charlotte said his pulse ox was 97 (good), heart rate 125 (a little elevated), but she couldn't hear breath sounds in the bottom left lung in the front or the back. When she told me that I really just felt like crying. However, later she texted that after his breathing treatment that lung opened up. So right now we are just watching Jude. He is still smiling and has no fever so let's hope Jude's classic signs are not so classic at all.

The weekend went well. I think I build up getting away so much that sometimes it lets me down. A lot of parents are so excited about the pageant. I am, but I am also always excited about the mini vacation we get away from home. The families at the pageant get a lot of free time. We drove down to Galveston and had lunch in front of the ocean. We also walked through Moody gardens for a little bit.

Emily did very well this weekend and we were very proud of her. She was great in swimsuit and stunning in evening gown.

 (she is the blue pants second row)
 Emily and friends
 Jude supporting his sister
 Emily's ad page

The best part was that Emily was so much more relaxed this year. She said she met a lot of people and truly had fun back stage. She kept sending me funny pictures and texts all weekend and she felt more a part of a family. She did say she felt a little like she doesn't fit in with certain people, but I feel that way too sometimes. Emily's goal was just to get in the top 15 this year. We really didn't want her to win because she is still so young to actually go compete for Miss Teen USA. That would be better at 16-18 so she is gaining experience right now. When they called the top 15 and Emily wasn't announced I saw her still smiling on stage. Once the other contestants were dismissed Emily went back stage and texted me that she was fine. She said she has three more years to try and she is still very young compared to a lot of the other girls. I knew she was still disappointed but I am so glad she has such a positive attitude. Once the winner was announced Emily was able to come off the stage. She was so excited because her friend Kellie (above in the white) was announced as the new Miss Texas Teen USA 2014. I think Emily will really enjoy watching her online in the Bahamas as she competes for Miss Teen USA. So overall it was a good weekend. Emily will now take a break and then decide if she wants to try for Dallas again and if she wants to try again. I am sure she will.

So we are back home and trying to get fully unpacked. We are watching Jude closely and we will hopefully know more about him soon. We have someone else coming to give us an estimate on the bathroom tonight so we will be making a decision soon. In the mean time we will be praying that Judes illness goes away very soon.

We are super busy SUPER busy at work. So I am off to answer phones.

Wednesday, November 27, 2013


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.

Monday, November 25, 2013

Is the Botox working?

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.

Friday, November 22, 2013

A sleepless night and Dallas.

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.

Wednesday, November 20, 2013

A positive.

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.

Again we are blessed.

Tuesday, November 19, 2013

Botox shots and the homeless tree

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!

Monday, November 18, 2013

Whew it's a long blog!

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.

However, I was very grateful. She collected about $200 so far and that will help a lot. http://www.gofundme.com/JUDE-ORTIZ

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 :)

Tuesday, November 12, 2013

Jude, the bathroom, and Emily

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 :).

Saturday, November 9, 2013

The bathroom debacle.

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 will only 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.

Wednesday, November 6, 2013

It's okay I promise.

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!

Wednesday, October 30, 2013

Jude, Emily's is ready to go, and the stupid Halloween letter circulating

My head is full of a lot of topics right now so bear with me as I try to sort them all out.  Jude is doing well. He is full of smiles and has been very talkative lately. He is still having some issues sleeping at night so I still resemble a frizzy zombie with frumpy clothes. Jude is still scheduled for his Botox injections and then he will have a follow up with the orthopedic doctor. I am still up in the air on the surgery. There is a part of me that doesn't want to subject him to something so painful, but I worry about the future pain he may endure if we don't go through with the surgery. Jude has his Halloween pajama's ready to go tomorrow. He is going to be a "Fire Chief".

Emily is growing up very fast and has a full blown teen attitude. However, she is still a great kid. She has a steady boyfriend who seems very polite, funny, and has huge goals in life. So I am hoping they stay responsible and remember they have a bright future ahead. Emily has exactly 30 days before we leave for Texas Teen USA. Her head shot premiered the other day on the website. You can go to www.misstexasusa.com and click on contestants. Emily is Miss Tarrant. Since her contest is only 30 days away Mike and I talked about what it takes to get ready in life for any type of major goal. In this case she needs to be interview, swimsuit, and evening gown ready. We talked to her in detail about how eating well is good for your body and your brain. We advised her that if she learns proper eating habits now then her body will thank her later. We tried to convince her that what you put into your body is what you get out of it in regards to fuel, looks, brain power, and more. Of course, talking to a 15 year old about this subject without her thinking it's about body image is a tricky thing to do. However, I think we got through to her. I explained how her boyfriend drinks a lot of hydrating liquids and eats protein to prepare for a football game. He does that so his body won't dehydrate and he can give the best he can to his team. So I asked her "what do you think would happen if you cut back on sugary Sprites and pizza and replaced them with water and increase protein". She understood it would mean more fuel for her body and better brain function. Of course a few minutes later she was asking for Starbucks :/, but she is 15 so that's expected. I have always made pretty good meals for our house, but I was to reiterate the fact that proper eating leads to a healthy lifestyle.

Finally I am sure many of you saw this ridiculous flyer that a woman in West Fargo is passing out to children who trick or treat at her house that she considers "obese".

Shaking my head. It's hard to find a proper response to this letter. I sometimes wonder as a society as a whole why we find the need to be judgmental and tear people down vs building them up. We women are especially guilty of this. Even in our friendships we have habits of belittling our girlfriends and judging them VS accepting them for who they are. We as women should lift each other up as sisters not tear each other down in any negative fashion. So when reading her letter I just sighed. I know in her mind she thought she was doing the proper thing, but basically she is just a big bully. We talked to Emily (who is skinny as a rail) about proper eating habits because this is healthy not due to weight. This lady is pointing out to these children in front of their peers and family that they have a weight problem. People like her can never understand the suicide rate in pre-teens and teens either and see they may be part of the cause. She could have simply handed out healthy treats, tooth brushes, or little toys. There was no reason to single children out and call them FAT! It's just unacceptable regardless of how much she has convinced herself she was going it for the good of others. No excuse.

Saturday, October 26, 2013

Jude's update, moving on, and Emily's charity.

Jude had a pretty good couple of days. He did throw up a lot of yellow substance today, but he is smiley and temp free. He is very smiley and a happy little boy lately. I am very thankful he is here with us!! Last night I posted a video on Facebook that I would like to share. It truly shows he knows what "I love you" means.

So my entire family is coming in town for Halloween. I am SO excited to see everyone. We do a giant haunted cemetery fundraiser every year for Emily's Smile Boxes. We also pass out over 200 brochures to families explaining what Emily's charity is about. Hopefully we will get some donations, gain some box makers, and inspire some children. Her charity has really been touching a lot of lives lately and it makes me very happy! There is an amazing video at https://www.facebook.com/#!/emilys.boxesnonprofit?fref=ts . Emily has a 12/8 Christmas box party made and the day after Christmas she is going to visit the children at Scottish Rite with boxes and her Miss Tarrant Teen crown. Very exciting!
Lately I have really been struggling and grieving over the loss of a friendship. I finally started really talking about it yesterday and touched on it on Facebook. It's always been very difficult for me to just walk away or cut someone I truly care about out of my life. Therefore, I can't wrap my brain around someone who can. However, it's been a discovery for me that this is just a trait that some people have. It's not a bad trait. In fact, I think I wish I possessed it sometimes. My husband can do this and not think twice about someone if he feels they are unworthy of his loyalty. Anyway, I would like to really thank my husband, family, and friends for being patient with me. Some didn't fully know what was happening and were just simply patient and supportive. My husband knew everything and has really been there for me. Last night was a bad night and he just simply hugged me...........then looked me in the eye. He pointed at Jude, Emily, and himself and said "This is what's important.......these people will always love you no matter what". How profound. I feel SO much better today and I am ready to move on and forward. No more looking back! It's time to get busy loving the people that love me back.

Make it a good weekend!

Thursday, October 24, 2013

A relapse or just a bad day?

Tuesday night I noticed that Jude had a pretty wet cough again. However, he was VERY smiley and had no temp. So I just held him a lot and when he was laying down I kept him at a 45 degree angle to keep anything from settling in his chest. I informed Charlotte the next morning of my findings. Later in the day she sent me a picture of Jude smiling very big and said he was doing very well.

However when I got home Charlotte informed me the rest of the day didn't go as well. Jude got toned out and ended up falling asleep during his school hour. He also had an elevated temp (not a high fever just elevated) and his respiratory rate was high. I also noticed he was beginning to look pale again and his cheeks were flushed. I watched him the rest of the night and he started smiling again. He had a decent night and only woke up a few times. My aunt pointed out that the antibiotic is probably just now leaving Jude's system. We knew the Empyema would take a long time to go away so that may be the culprit. Charlotte also mentioned that since he is still recovering he will have good days and bad days.

We will keep a very close watch on him and this time I am pushing whatever my gut instinct says because it tends to always be accurate. However, I am really praying that he doesn't begin to digress and have to go back to the hospital. My main concern is Jude, but the thought of going back makes me want to hurl! So I am saying big prayers it was just a bad day and he will continue to improve.

Wednesday, October 16, 2013

An MRI for Jude.

So Jude's neurologist called me yesterday while I was at work. When I picked up the phone I was surprised to hear his voice. He wanted to go over the findings from the other neurologist and also to request a 3T MRI for Jude (fabulous let me find the time...insert googly eyes). I love Jude's primary neurologist. He is so smart, kind, and when he talks to you he inflicts a type of confidence in his voice that you just feel comfortable accepting his answer. He said the other neurologist could be right that Jude had a neuronal migrational disorder. However, he said that a well known cause of schizencephaly is a stroke or vascular bleed. He mentioned the in utero MRI  we had and said that could prove the stroke or could just show bleeds where bleeds sometimes occur in a fragile babies brain during development. He said he wants an MRI because he needs one of Jude's "adult" brain. Did you know the brain is complete by Jude's age?

Anyway, he said the MRI is needed, but will also tell us more about the cause of Jude's condition. He said if it is a migrational disorder there is no way to tell if it's genetic or not without an MRI. However, he still seemed to lean towards the stroke. He also said........you may just never know and it could have just been a fluke situation. That's what I figured.

So I need to figure out a time to take off work when I have no further vacation time at work to get the MRI completed. I know this will help the doctor further treat Jude and possibly open up ideas to stop his startles and decrease seizure medications.

Also, I read this blog today on forgiveness and I really think it's worth the read:

Friday, October 11, 2013

Jude's doctor visits and updates

Jude had three doctor appointments yesterday. The first visit was a follow up with his regular pediatrician to see how his lungs are doing. Mike said the doctor was amazed he had double pneumonia and an empyema. She said those are very difficult to get over and she was impressed Jude fought through it. She said his lungs sound really good and she thought Jude looked well too.

The next visit was with a new neurologist that will be giving Jude his Botox injections for his legs and the pain he has. They scheduled the injections for 11/19. Even though we will be staying with Dr Riela for Jude's seizure management the new neurologist reviewed his file anyway. He had access to the 3 month MRI that was completed at Cook's hospital when they gave us the dreaded news that Jude would have lasting medical problems. Anyway, by that MRI the doctor told Mike he believes Jude didn't suffer a stroke, but had a neuronal migrational disorder. However, I pointed out to Mike that the new doctor did NOT have access to the in utero MRI which clearly showed the two dark spots (blood) in the choroid Plexus which led that doctor to assume there was an ischemic event (stroke). She said by 3 months the blood would have dissolved. However, if for some reason this doctor is accurate then there are basically two causes Genetic (most are) or something was just wrong with Jude's biological makeup. In the grand scheme of things what happened to Jude doesn't matter it's just taking care of him now. However, if this was genetic and Mike and I were considering having another child........well that's scary!

The last appointment Jude had was with his GI specialist. Mike said the doctor was so happy to see Jude. He said it had been a long time and he was worried about him. He did increase Jude's formula some so Jude will be getting some more nutrition now.

I had a terrible dream last night that I was back in the hospital with Jude. The nurse raised Jude's bed up to much and I saw Jude starting to slide off the bed. I was to far to reach him and the nurse just stood there. I sprinted but couldn't catch Jude before he hit the floor and his head. He had a horrible bruise on his head and I kept trying to tell everyone he needed a CT scan to check for a brain bleed. It was terrible! I have no idea what it meant, but it was a scary dream! Maybe it's the loss of control from not being with Jude everyday like I was when he was sick? I don't know.

This weekend Emily will be turning 15. I am so proud of her and the young lady she has become!

Friday, October 4, 2013

Jude's update at home

Jude seems to be doing pretty well. For the most part we are keeping him in his bed since it can keep him at an angle. However, he is also spending some time in his tumble seat and on his wedge on his favorite futon. When Jude starts getting very pale it means he is weak and needs to go back to his bed. We have also learned he needs at least half his feed prior to giving him the antibiotic or he will vomit. Tonight I think he had to much stimulation and when I laid him in his bed he did start to gag on mucus and tried to vomit. I don't care how sick you are.........if your child starts to vomit after having severe pneumonia you can sprint from room to room in about 2.2 seconds!

Jude's poor hands and feet all have the bruises you see in the picture because his IV line blew several times. They will get better, but they sure don't look friendly.


Overall I think Jude looks much better! My adorable friend Gena said Jude should be a Ninja for Halloween because he fights and wins everything that comes his way. He has had pneumonia, C-diff, The flu A and B, A pleural effusion, MRSA, and more but he straps on his gloves and kicks booty.

We do have his pulse ox machine on and set to 88 for alarms. Our night was rather sleepless becasue he kept dipping but we could always get him back to normal. On top of me being EXTREMLEY sick.....Mike didn't get much sleep and is rather grouchy. I am not sure Emily understood how sick I was until Mike said tonight, "Emily your mom has a serious upper respiratory infection". Darn hospital germs! My husband just ran to get me Pho! I think it will make me feel much better! I sound awful, but I honestly feel better.

I am glad to have my family under one roof :). Tomorrow is Emily's birthday gathering and I sure hope we get to go. Again, I want to thank everyone for being so understanding during this recent visit. It's the worst illness he has had. I appreciate my friends that understand how stressful things can be, my family for always being there, and my work for their understanding.

Thursday, October 3, 2013


Jude is HOME! We are so happy! Make no mistake that Jude is still VERY ill. The empyema will take a long time to heal per the doctor. We have him in his sleep safe hospital bed at the house and he is sleeping soundly. Charlotte got there about 10:30 and I know he is in good hands! So I drug my sick carcass to work!

This has been a very hard nine days! I look at people like Aidan's mom and I have to admire her. I was worn out with the hospital, the traveling, and the very little sleep. We get little sleep anyway, but that was VERY little sleep. So again I admire you parents that are in the hospital for months and years.

The doctor said this fight at home will be up to Jude. We are all watching him carefully for vomiting because he can aspirate very easily. A minute amount caused the aspiration pneumonia he got in the right lung the other day. Jude will also be on antibiotics for the next fourteen days. We understand this will also make Jude for susceptible to additional respiratory issues in the future. However, we have him with us again and we are so glad! I cannot even begin to thank everyone so much for all you have done from us. From the food, the gas cards, coming to see Jude, the balloons, sitting with Jude, and more. We have one amazing support system!

My boy is home!!!!!!

Wednesday, October 2, 2013

The update and a possible jail break!

Mike stayed with Jude last night so I could get some sleep. I woke up even more sick than I was............so annoying!!! Anyway, they pumped Jude full of oxygen and antibiotics. If he can hold his oxygen today and through the night he will get to go home tomorrow! I am praying this will happen because we are pretty tired of the hospital. The doctor said it will be up to Jude on how well he does recovering at home. It will be up to him to fight through this and not come back to the hospital. The doctor said he really doesn't want him coming back in worse shape.

So let's pray Jude holds those oxygen stats today!