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.