Friday, May 31, 2013

A giggle or two!

Jude seems to be doing well lately. He is very smiley and social with all of us. He is going through a mommy phase and wants me to hold him as soon as I get home. If I set him down for any reason he expresses his displeasure very loudly!

He was running a low grade fever on Wednesday night of 99.5 axillary. This concerned me because this is how his last pneumonia started out. I don't even want to think about Jude getting pneumonia for the 7th time! I am not sure his little body can stand it again. Luckily the temp has stayed normal since then.

Here is a short video to show you show funny he thinks dads bee noises are.

Friday, May 24, 2013

The reason behind my "Turtle" post and my stance on Gay rights

Jude is finally doing much better. He is full of big grins that include his full dimple when he is smiling. He is still congested, but that seems to be a normal issue now and we have learned to work with it. We administer CPT (compression therapy), massage his chest to get congestion up, and position him in the best manner possible in case he chokes. His therapists are back to a regular schedule and his teacher is now coming back to the house.

Emily is also doing well. She has made 25 Emily's Smile Boxes to go to a toy drive for Oklahoma children affected by the tornado outbreak. We also purchased toiletries and so much more to send to the hard hit Carney OK that isn't getting much attention. Em also asked if we could go help some of the victims this weekend and I told her that we would try. If we don't make it to Oklahoma we are striving to make it to Cleburne TX.

So today in Grapevine (my work town) they voted to allow openly gay young men to join the Boy Scouts Of America. Honestly, I am not sure why this was ever a debate up for a vote. We all have our own personal preferences whether it be men or women or Hispanics or Caucasians. My mother raised me to see no difference in anyone as long as they had a good heart and for that I see myself as blessed. When I look out to a crowd.......until you prove me wrong you are my equal and everyone else's equal.

When I was in middle school I went through a really hard time. I had very short hair, braces, glasses, and I was skinner than LeeAnn Rhimes post divorce. I was given the label "Turtle". Literally everyone in the entire school knew me as Turtle. I got so used to the name I answered to anyone (including teachers) that called me by my Moniker. I finally broke free from my situation and changed my appearance and was never known as Turtle again. However, I always kept that true identity inside and learned to proudly own it. However, on Facebook tonight I witnessed people calling my gay friends queers, powder puffs, faggots and more. No one likes to be called names!!!

You can disagree without allowing vicious and cruel words. You can disagree with gay marriage. You can agree to civil unions and not gay marriage. You can disagree with people being gay in general, but calling people faggots, queers, and other horrible names is just not acceptable to me. You can agree to disagree without name calling or violence. I believe you can choose to express your opinion through positive channels or choose not to express it around me at all. Doesn't mean your opinion is wrong...doesn't mean I am right, but it does mean we all deserve respect. If you cannot debate your opinion without being cruel then you need to look inside your soul.

For those who have used such cruel words and cannot have an open mind here is something to think about. My sons weekend nurse is gay. He takes care of Jude in every aspect an invalid must be cared for. There are some people that would look over the fact that Allen loves Jude as a patient and a person and just choose to be horrified we allow a gay man to care for him. They would look over the fact that he is a good Christian man who gave up 20 years of his life to serve those less fortunate in Africa. They would look over the care he gives my son..........and just call him a faggot. That's not okay with me. So several people found themselves deleted off my Facebook and I am sure several more will delete me today. To them I say..........I will gladly sit next to any person of any race, religion, or preference as long as they have a good heart. In the end when the Lord asks me why I will tell him because you told me "Thou shalt not judge and to love one another and so that's what I did".

Sunday, May 12, 2013

A lesson in simplicity and Emily's weekend.

As I sat down to write tonight I tried to form all the words I wanted to put in my blog. I wanted to write about two subjects that tie together. First will be Emily's pageant and then my quest to get home to Jude.

I blogged the other day of how Emily mustered the courage to try Miss Tarrant teen only two weeks after Miss Dallas Teen. Some people see pageants as shallow, but if you knew all the work these girls put into this "sport" you wouldn't ever think that again. The other night we had some of Emily's friends over and they wanted me to ask them practice pageant questions. So these little boys got in their "pageant stance" and I asked them about world topics. Finally one of them looked at me and said, "wow, you have to be smart to do this". I giggled. So Emily woke up feeling very ill on Saturday morning and I was not happy with her. Granted she could have been worn down from the week of hospital visits with Jude, but she also didn't take responsibility and go to bed on time. We had a discussion about how responsibilities and commitments come before friends and texting. I asked her if the boy she likes would be up so late the night before a big football game. She said he wouldn't have been and said she really wanted to do this pageant and was going to suck it up and get herself together. I told her that in life there are many times we have to be at work, class, or a big event and if we don't prepare we have to accept the consequences. She agreed and she made the decision to walk into the performing arts center and give it her very best shot and boy did she! She looked gorgeous in swimsuit preview. This is where the judges have their first look at the contestants. Then she went to interview and she texted me that she thought it went very well too (no I can't be's all up to Emily). So the primary show was at 7pm and all the girls performed in their swimsuits and then evenging gown. Then they announced the top three finalists. Emily was the last finalist called and we were so excited. Then she had an on stage question and I am sure my heart was beating as fast as hers was. They asked her "Who do you think is a good role model today?". I saw Emily's mouth turn into a smile and I knew she already had the answer in her head. She replied "Dr Rice...Condolezza Rice. I got to meet her when I flew to Washington DC for my charity and I found her to be a very inspirational lady and leader. Also she was an expert pianist at the age of 3 which I think is amazing". It was something like that and I was impressed. Even Mike leaned over and said "Well she knocked that out of the ballpark". After the the on stage answers were calculated they called the finalists back to the stage. They called the second runner up leaving Emily and another very beautiful girl. I saw Emily reach for the girls hands and they both waited to hear the announcement. They called the first runner up and you could see the answer of who won on Emily's face in the picture.

At that moment all the practice and work faded into excitement. It didn't matter how big or small the pageant was it was just her moment and she was thrilled.

So in celebration style we took Emily out to eat at Saltgrass...she was STARVING. She wore her banner and her crown into the restaurant. Mike asked, "Emily this is the first crown and banner I have seen you wear and keep on.......why?". She replied, "It just means a lot to me. This is hard work and I am just proud of it." Sometimes parents that are involved with children in pageants lose track of what's important. They begin to think that their child always deserves a title or a crown when in fact it's the judges decision. The USA side of pageantry is just as expensive and just as time consuming, but it teaches you to truly appreciate a very beautiful bouquet of pink winning roses and to be very very grateful for them! I sometimes think a lesson in being grateful for simplicity is a lesson everyone should have to learn.

I didn't get to see Jude much yesterday because I was taking care of Emily's needs at Miss Teen. I kept picturing his little face with his bright eyes. For some reason I kept thinking about him. I came home twice and gave him kisses, but I had to run back out again. He was already asleep when we got home. Today I had my nephews dedication, but after that I really wanted to see Jude. Mike had family in town, but I just wanted to sit in my house and do nothing. I grabbed Jude and we snuggled into the couch to watch a few shows. It's simple with Jude. We don't have big ambitions it's just all the tiny moments that are perfect... just like the simple pink roses!

Friday, May 10, 2013

Hitting the nail on the head

My cousin is an amazing writer and she also loves a great read. Today she sent me Heather Lanier's, "Waiting To Love My Child". Since I come into work early on Friday and cannot make phone calls I took a minute to read over the article. It literally took my breath away. What a profound outlook on life this woman has and she expresses perfectly what I have wanted to say. Recently I was sitting on the couch holding Jude and I was talking to him in my mom voice. He looked up me with these big bright brown eyes. He knew he was my baby and he knew I loved him with all my heart. At that moment I realized I had been really afraid to take all of Jude into me. I always loved him, but it was a moment of realizing I needed to let my fear of losing him go and just appreciate him for who he is and all he has brought us. So this quote in her writing really got to me.

" I think it’s to be brought to our knees with a love we have no choice over. To surrender to that love. To say, Yes, yes, yes, I will love whomever we find ourselves holding. Nothing seems to underscore this love more than the possibility of its loss."

Another moving part of the article was when she was pumping her gas and realized everyone around her was able bodied. I have done that. I have looked around wondering why the world keeps turning when my child is so sick. She said "I was pumping gas, and the world, including the gas station, was filled with able-bodied people, and my child was not one of them, was now slated for a swallow-study to see if she could even handle her own spit without slowly killing herself". Man I can relate even down to the swallow study!

She has had the courage to try to have another child, but I haven't. I haven't found the courage to do that because of the exact fear she had and what turned out to be the actual realization that something can go wrong again. However, when reading her article I didn't feel sorry for her or want to help her. I found her brave and inspiring. She had found her own courage and her own emotional well being to survive this issue and be the best parent to a wonderful child.

I encourage you to read the it for me. It's the best piece I have ever read that is able to express what it's like and even though she doesn't know me personally I felt like she was speaking for me.

Ironically while we were in the hospital Mike was contacted by a friend who was on the same floor we were and her son had just been diagnosed with the same issue the child has in this article. As much as hearing the Holland poem now annoys me it's the first thing that went through my head. "Welcome to Holland". If you don't know the poem you can Google the title and it will pull up.

Jude is doing much better and we thank everyone for your prayers.

Wednesday, May 8, 2013

Jude is home and with an update

Jude is home from the hospital. He actually came home Monday afternoon I just haven't had much time to update my blog. He had pneumonia in the mid left lobe.

He was very happy to be home and gave us lots of smiles on Monday afternoon. However, yesterday Charlotte noted that Jude needed to be held and was grumpy. When I got home he was the same way. Jude was not happy unless someone was holding him and even then he complained a lot. Granted he is still ill and pneumonia takes awhile to conquer, but of course it concerned me. He also felt like he was heating up again to me, but luckily his temp stayed normal. He was still sleeping when I left today and Charlotte noted his temp was still down. She is also using the NT tubes for suction to try to keep his airways clear.

I got up about five times last night checking on Jude. I was worried about him. I am still worried about him. I guess that's normal.

Saturday, May 4, 2013

Jude's update

We are at Cook's Childrens. We bought Jude ito the ER yesterday hoping they could give him an iv round of antibiotics with fluids and send us home, but that wasn't the case. They ended up admitting him. Thepneumonia in his lower left lung had gotten worse.  WE thought this might be the case because Jude kept vomitting and therefore couldn't get the medication into his system. Also, when he vomits he aspirates and thats what starts the pneumonia in the first place.

They took Jude off all his feeds to let his tummy rest. They gave him his antibiotics and fluids all by IV. They are doing breathing treatments every four hours and CPT. However they won't release Jude until they get his blood culture back, which will at least be Monday.

He seems to be in pretty good spirits and we did get some sleep last night. I know Jude is anxious to get home, but we want to make sure he is well. I think this is our fifth round of pneumonia or maybe 6th? Any parent with a child like Jude can tell you his is one of our biggest concerns.
I do want to thank a few people in a public manner. We brought all of Jude's items with us but due to lack or sleep and rushing from work I forgot everything. My long time fiend Kelly braved Friday night traffic to bring me two pairs of sweats and t-shirts. She even snuck in goldfish and oreo's as snacks. She also texted and called today several times checking on Jude's condiion and me. Then my friend Gina showed up at the hospital bright and early with breakfast, movies, and cheer. She literally stayed the whole day and only took a break for lunch. She even sat her the whole time with Mike while I went home to shower. Not to mention my co-worker, Fleck, Linda, etc who were all texting and checking on us. Thank you means a lot. I understand that Jude gets sick a lot and I appreciate my friends realizing there is nothing routine about being confined to a hospital room.

Emily is with her dad and friends. Her best friends parents leapt into action by letting Emily come home on the bus with their daughter and staying the night. Mike is going to bring Emily up tomorrow to see Jude.

I am currently on the hospitals great "get well network" so my blog is going to run together and have misspells because this keyboard is the WORST! However, it's so nice they offer these items now. It's amazing how comforting this hospital is for Jude.

Thursday, May 2, 2013

Jude is just sick or is he better? I am so confused!!!

I look back at my teenage years and I wonder why I waisted my time and not furthered my education. I would have proudly have become a nurse or a doctor, but I didn't take the necessary steps to fulfill that career. However, somehow I got thrust into that field. I sometimes think about pursuing a medical career and then I have nights like tonight. I am confused. I want to think Jude is getting better, but it doesn't seem like it tonight, but then again it does. I am so confused that I couldn't tie my own shoes right now!

When I got home Jude was asleep on his futon which is unusual at 6:30. He slept until about 8 and he woke up very "spastic". Spastic means he is having a type mini seizure type activity. He body is just "spastic". I held him for about thirty minutes while he fought with this issue. This is not unusual for Jude and fairly the norm when he wakes up, but it was a bit excessive. I held Jude while we watched the Big C and I tried to get him to smile for me. Occasionally he would flicker a tiny grin at me, but he wasn't his normal self.

I began to feel Jude heating up. The back of his neck was hot and then his forehead started to heat up so I took his temp. 99.7, 99.9, 100. ....sigh... low but still. Days of antibiotic but the fever has crept back. I know the doctor said if Motrin can control the fever than Jude shouldn't be in any immediate danger, but my mind began to wonder if this is normal or if there is something else going on. So we took Jude to his bed to get him ready for bed. I hooked up his feed to his tummy so he would get some substance prior to all his medications.

Mike started his breathing treatment now laced with more abuterol while I gave him his medications. I noted the below.

Fever - axillary 100 (add a point)
Color - he looked pale (bad)
Smile - slight smile so that's good
Toenails - blue...very blue...but cold. Is this a temp issue or oxygen?
Fingernails - pinkish (good)
Noted Jude trying to pull the mask off his face during breathing treatment (this is good)
Cough - bad.........actually worse I would say (bad)
Breath sounds - Diminished on the lower left side, but mid level seemed better. (real bad but good) 

Wait........suddenly Jude threw up. Sigh. Throw up equals aspiration. He keeps throwing up since he was diagnosed. We sprung into action with towels and suction.

So is Jude getting better, worse, the same? I have no idea. We are watching him closely. I have no idea how doctor's deal with their best educated guess on a daily basis. They have my admiration.

On top of being concerned Jude's little "Seizure cat" is very flustered tonight which makes me wonder if he can feel something I can't or if they little piece of fur just wants outside.

Jude, Emily, and me

Jude has had pneumonia again and it's not been pleasant. When Emily and I left for her to compete at Miss Dallas Teen Jude was not feeling well. My husband said he would watch him and let me know if he needed to go into the doctor. We all thought Jude was just suffering from another sinus infection or allergies. Once we got home on Sunday night I noticed Jude really didn't look well and he had a very rough night. My husband was trying to avoid Jude being on antibiotics again and I definitely understand that reasoning. However, I decided to go ahead and take Jude to the doctor on Monday. Once there I was sure they would diagnose him with the sinus infection and send us on our way with mediation, but I was wrong. He had mid lung pneumonia......ugh! So now it's gotten to the mid lung vs the lower lung.

We got another upteen bottles of antbiotic and a probiotic and we headed home grateful that we were going to the hospital. The last few nights have been tough and I have had very little sleep, but Jude is finally starting to smile and laugh again. That's a great sign. He was very bright eyed whenever I got home last night, but his cough is still really bad. Now I just have to get myself in check because I am very grumpy.

Emily did very well at miss Dallas Teen. She looked beautiful on stage and I think she really held her own for being only 14. She placed as a runner up in evening gown which is a great accomplishment. She is going to try one more time for a city title on 5/11 before she focuses on state again. However, I she did express being a bit discouraged and waiting until she is older. Mike and I talked to her and told her how Tony Romo was not selected in the first NFL draft he was in. How he was picked up at random and practiced and practiced. Now he is one of the highest paid quarterbacks in the league with some of the best stats (Yes, I know he needs a better line but this isn't a football debate). We talked about how some of Emily's friends are really good at cheer and how some are really good at dance. Then we asked her "What are you really good at Em? What do you truly love?" She replied, "pageants". We asked "then with practice what do you think you can really accomplish". She said "Miss USA!". There ya go!

After the pageant as tired as she was Emily mustered up the strength to visit a local Elementary school to talk about the benefits of community service. It was at Jude's prior school. They had invited her to come speak and she was so excited. She made her own power point presentation to help her during the presentation. Here she is with the principal.


I also wanted to say I don't post these posts on blogger or facebook because I need anyone to feel sorry for me. I am a strong woman and capable of handling any situation. I do this for information. However, I can easily get irritated with people that don't think before they speak or don't recognize what a great situation they have so forgive me.