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.

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".

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 there...it'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!

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 article........read 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. http://www.salon.com/2013/05/07/waiting_to_love_my_child/

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.

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.

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 guys...it 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.

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.

The article Mike sent to me about special needs moms. This is a must read

My husband sent me this article written about special needs mom. I get a lot of articles, poems, etc from people but this one really hit me. It is so true. I encourage you to go read it so you will understand my responses. I don't think any of the "special needs moms club" writes these pieces so people will feel sorry for us or feel a need to reach out. We do this so people will understand.

http://www.huffingtonpost.com/suzanne-perryman-/6-secrets-special-needs-moms-know-but-wont-tell-you_b_3081692.html

1. I couldn't agree more. I may actually get out for a night to see people but it's rare and even when I am there I still feel lonely. It's a different type of lifestyle and any time I wish I had the freedom to run out to dinner or to a movie I feel very guilty. I feel guilty because I know the only way to have that freedom is to lose someone very special to me and that's not acceptable.

2. Wow, this is true. Just this week we had a massive fight over the failure of understanding what the other party needs. We don't get much time to ourselves for "us" time. Yes we have a nurse and we are OH so lucky but that nurse is for us to work. On the weekends we have so many errands to do while the nurse is there we still don't get much time to ourselves. However, we recognize we get more than a lot of other special needs families.  We also get zero time to work out so I don't feel as pretty as I used to which affects the way I display myself to my husband. However he doesn't ever seem to mind.  My husband is a great dad. He is my best friend and I love him dearly.

3. I would prefer someone ask me what happened to Jude. Last week I had someone that was very inquisitive. She herself had battled cancer so I think that is why she is okay with her questions and I had questions for her. It was refreshing to have someone that asked me so much. I want to share with you what happened rather than you just wondering. I am also not easily offended by anything rather it be Jude or just everyday life.

4. Oh my goodness this fits me. I am constantly convinced I am dying young like my mom did. Well okay not so young anymore, but you get what I mean. I am always worried about something happening to Emily or Mike too. Why? I worry about myself dying because I don't want to miss the good times and I don't want to leave my family without me. No one will care for Jude the way I can care for Jude. I don't want him in a home if something should happen to Mike and I both and I worry his care will just be to much for another party. I worry about something happening to Emily and Mike because I just don't think I could make it through something like that. Ugh, just hate thinking about it.

5. That is summed up in the article. We can tell what Jude needs just by his body language.

6. Jude cannot clearly say he loves me, but he tries. I know what he is trying to say. I also cherish each time Emily says those words and I cherish them each time Mike says them. They mean the world to me. I once wrote about and article my cousin shared about a disabled son telling his mother than you for caring for me and she replied it was her honor. I totally agree. It's my honor to be the mom and wife of my amazing family.

Jude's sleep study and the bombing.

This weekend was a whirlwind of appointments and attempted relaxation. I took Friday off work because Jude had a sleep study appointment at the Plano Pediatric Sleep institute. They were planning on studying his recent seizure activty and possible additional sleep apnea. I sent a picture out to family that looked like this.

However this was only partially correct. This is how Jude really looked.

 

 

He hated it! He cried, and cried, and cried. I administered two doses of his Valium and he still cried. He tossed, he turned, he whimpered............he was miserable. I don't think we will ever do it again. I trust the doctor's that they were trying to properly measure his seizure activity and measure his sleep apnea. About 1am I comforted Jude and I then strongly instructed him to go to sleep and he was a good boy and finally minded. He slept from about 2am - 5am. Once the attendant woke us up we gladly packed out bags and headed for home. We entered our neighborhood only to find that NASCAR had already shut our roads down..........very very early in the morning. So I found a back route via a dirt road to my home and slept soundly in my comfy bed for an hour (Fleck would say my bed is NOT comfy..lol). When I got up Jude was still sleeping. Mike and I kissed him goodbye and headed out to celebrate Mike's big 40th birthday.

We headed to Horseshoe Bay Texas and the Horseshoe Bay Marriott. I had points to redeem so the vacation would only cost us dinner and gas. The overall rating of the resort was about a 7, but overall it was a great mini vacay! The wildflowers were amazing in the Texas hill country. They looked like carpets vs our scantily laced roadways. Even the cemeteries were loaded with bluebonnets. I sent this picture out to a few close friends showing a wildflower perserve we found.

The flowers were so colorful and just made me happy! Not to mention there was a great horned owl at the preserve with her two baby chicks. It was an amazing site. She was close enough to see she and her babies very clearly.I felt very honored to look at her so closely.

We took all the country roads we could to our destination and then back again. It was very nice. It gave me a chance to breathe deeply and realize what matters. Sometimes we focus so much on what others think, what they do, and what they see that we forget to...... just be ourselves. It was nice to be reminded of that.

Once we got home I thanked my friends "The Gena/Gina's" and our nurses that helped make this quick excursion possible. I held Jude and listened to Emily's stories. I was happy to be back home. The people that helped make this overnight trip possible are such angels!

So I got back to work today and it was very very busy...which is a good thing. I have realized as an adult that being busy means work... which means you get a paycheck! Then the Boston Bombing hit. At first I was so busy that I wasn't my normal "reporter" self. I didn't panic, or share the information, I just continued to work. However, once I got a break and reviewed the reports I was just heart broken for those that were affected by this tragedy. I have never really understood violence against others. A victim of violence myself I have tried to find a more positive path in life and therefore I cannot understand those that seek a more darker path. I know some of my friends prefer not to even know that tragic situations happen. Even that can hold both positive and negative outcomes even though I can understand their reasonings.  However, I felt the need to mourn for those involved in this situation. My heart had to break  moment for the mom/dad that lost their 8 year old and I had to ask why. What possible polictical statement could their be found in bombing a mass positive function that promotes charities, proper health, and achievement of the human body. I don't get it.......however I guess there is a lot I don't get these days. From friends not being who they say they are to horrific worldy events. Sometimes you just have to throw your hands up and say........I surrender. I accept things are sometimes out of my control.  All you can do is be the best person YOU can be.

Me time!

Last night I came home from work and Mike's parents were over for his birthday. They are elderly and sweet as can be. I listened to his mom misunderstand everyone's discussions and his dad tell me stories from his own childhood. It was great except for the fact that Mike is from a family of 7 and speaks louder than anyone I know when his family is around. It literally makes Emily and I laugh. So when we all parted ways I logged into my computer for a brief moment and took a breath. Emily decided to talk to me at that very second.

Me: huh?
Emily: Gees mom you cannot multi-task
Me: Em I am listening just give me a minute
Em: It's like it takes a second for your mind to wrap around what I am saying
Me: It's because I do so much multi tasking through the day
Em: uh huh

She probably just wanted my attention but I needed a minute. So later that night as  I was heading towards Jude's room where I had set him up with his breathing treatment. I was pushing Jude's IV feed pump with my foot, while holding his toothbrush, and holding all his medications that I just drew up.  I passed Mike in the hallway and playfully muttered "Em says I can't multi task". Mike chuckled and I heard Emily say...

Em: No mom I said you can't multi task while you are on the computer
Me: That's not failure to multi task Em that's me time
Em: oh

She got it!

Jude's little room

When I learned I was pregnant with Jude we were so excited. I did the normal things any expectant mom does like planning what the room would look like and the colors we would use. I knew I wanted to go neutral because our plan was to have two children. Then Jude threw us for a loop. I had decorated Jude's room in adorable farm animals. I decorated large letters that spelled his name that hung on the wall. I had adorable bedding, a hand painted rocking chair, and so much more. Then we kept getting more bad news.........and I shut the door. I couldn't look in his room anymore. Material things don't mean much when you aren't sure your baby will make it.

When Jude was born he spent most his time in our room like most newborns do. However, he stayed in our room because of his seizures and diagnosis that were given at three months of age. I never ventured into Jude's room much except to look around. I would grab some clothes occasionally, but eventually the clothes even made their way downstairs. However, I will never forget taking Jude into his room and laying him down in the crib for awhile. He loved it.

This is one of my most precious video's I keep on youtube.

Now Jude has his own room downstairs that was made from a converted dining room. We still have a baby monitor that picks up if he is vomiting or seizing. We have a little armoire that holds his clothes and a shelf system that holds his supplies. The walls are red since we know Jude can see that color and the ceiling is blue. Emily spent an afternoon perfectly placing glow in the dark stars on the ceiling so it would look like Jude was outdoors at night time. He has shelves made out of tree branches, a bear rug, adorable matching bedding, and "Welcome to Camp Juders" written on his wall. I know Jude doesn't understand what his room is about, but it's still his room. One of the first things the EMT'S always report to the hospital upon arrival from an ambulance is "he is well cared for with a very nice room". That is both nice and sad to me. Nice they take the time to realize Jude is so loved, but sad that so many special needs kids are unloved and not treated well.

I wanted people to see more than all Jude's equipment when they walked into his room. More than a hospital bed, an IV pump, and oxygen meters. I wanted him to be a kid and my kids have special rooms. It's not that important to some and in the grand scheme it's really not important at all, but I still wanted it for him and I am proud he has it.

A dicussion about divorce and karma

I am writing my blog today without some names to protect those involved with this situation. I felt like I needed to write about it because the whole situation to relieve some stress.

I have been blessed in my life with two amazing children. My first born was with my first husband Joe. He is a kind and decent man but we just didn't click as husband and wife anymore. It was more like brother and sister and I just wasn't happy. It was me that broke off the marriage and I still remember the guilt I felt over hurting my ex. He had a hard time at first, but never once did he ever question my mothering skills. In fact, in counseling he said bluntly that the best place for Emily was with me and that he would never dispute that. The divorce was hard, but it went very smoothly because we were both looking out for our child's best interest. We negotiated on child support, how it would be paid, health insurance, and everything else that is involved with the dissolution of a marriage. We agreed to never say anything negative about each other or the situation in front of Emily........and we held to that deal. We never plotted or schemed to use her in anyway. We never coached her on things to say or ever put her in the middle. It took awhile but now my ex and I are very comfortable around each other. He provides above and beyond what we ask for Emily. In fact, he just gave her the money to obtain her new pageant dress which is amazing. He is a good dad and I KNOW I am very lucky and so is Emily. Not only does she have an amazing dad she also has a great step dad. The kid is set.

So currently I am watching a very good friend of mine go through a very nasty divorce. She was stuck in a loveless marriage that she endured with a smile for a very long time. When she finally got brave enough to ask for a divorce she was under the assumption her husband would comply in the best interest of her children. However that hasn't been the case. One of the problems with this divorce has been that my friend is probably one of the nicest people you would ever meet. I joked with her once that she probably woke up singing Disney songs. I was not at all shocked when we stayed the night at a hotel and the next morning I heard her in the bathroom singing the Sound of Music. I promptly informed her it was way to early in the morning for that merry crap so she nixed the songs until about noon. FYI ~ Don't ever try to watch a musical with her she will sing every verse. Anyway, due to her profound gift of being so sweet and innocent she has wanted to believe that her ex husband still has a heart. She has gotten some very horrible wake up calls and it's been hard watching her golden heart start to turn black due to the cruelty inflicted upon her. She has learned that there are some very dark sides of life. She has slowly started to learn that she cannot just lay down and let someone walk all over her, but it's been some rough roads getting to that point.

I wouldn't use the term "like" for her ex husband, but I would associate with him. I didn't like the way he treated her during their marriage, but I kept my nose in my own business. She would rarely get away without him calling demanding a time when she would be home because he was tired of watching the kids. Those phone calls would also annoy the crap out of me when my friend and I were hanging out. I don't remember him EVER taking off work to take the kids to a doctors appointment, I never once watched him change a diaper, I never once saw him cook, I never once saw him clean, I never once say him be involved with the kids when they were married. I think I may have seen him hang a piñata once as my friends insistence. I did see him constantly playing video games and ignoring all aspects of life going on around him. I also witnessed him "tink" his beer bottle on a table when he wanted another one...........problem is my friend brought it to him. I would have pelted it at his head. Now let's go over what I witnessed my friend do. I saw her crafting with her kids, taking them to see Santa, working with her son on his schoolwork that he was having such difficulties with, encouraging her kids to eat their meals, buying them clothes, taking them to doctor's, planning their birthdays, and so much more. She was really the epitome of a good mom. If anything her only downfall was she let them walk over her sometimes too, but she is getting much better at stopping that issue.

So during this split the ex husband began insisting on a 7/7 split and to give my friend ohhhhh about $150 a month in child support..........sigh. Now let me state that I understand some people agree with a 7/7 split. I don't! I don't think it's in the best interest of the kids and I take issue with a man that was not involved with the kids during the marriage but then insists on a 7/7 split after the marriage. This suggestion has financial gain written all over it. However, if a man is genuinely the primary care giver at home and is actively involved then I could see the 7/7 being suggested. Again, this was NOT the case. A 7/7 split can create issues with children who have two different parents with two different views on homework/study time, two different ways of eating, two different sets of bedtimes, etc. However, because my friend is SO nice she didn't insist the kids stay with her until the divorce was final. I won't go into all the details of their case, because it's not my case to share. I would go into examples of horrible nasty things that have been said or done, but again it's not my case to share. I could go into the other settlements in the decree that are 100% ridiculous, but again it's not my case to share. I also don't want to jeopardize anything. However, I will say that a real man knows when to step up and do what's right for his children. I real man knows that a lengthy court case isn't healthy for the kids and in the end will cost him a whole lot more than it would to do what's right. A real man wouldn't belittle, bully, or manipulate the mother of his children. A real man could stand up and admit she was a good mother and again would do what's right!

"As she has planted, so does she harvest; such is the field of karma." Sir Guru - Having people rally around you and support you both financially and emotionally is the result of good karma. It's the result of the amazing deeds another person has done in their past expecting nothing in return from others. It's amazing how people come forth to help in a time of need when you have done nothing in the past, but be kinds to others. However, I have another quote to share too "Every action of our lives touches on some chord that will vibrate in eternity.  ~Edwin Hubbel Chapin" So I encourage you to think about what you are doing in your life today. If you knew that the world would give you back what you are putting forth would you accept your are putting forth your best? If not........rethink what you are doing.

The loss of a life and a very good night

Last night when I got home Mike's dad had stopped by and brought an old picture of Mike to show Emily. Mike chased Emily around the house trying to get the picture from her so she wouldn't share it with the world on facebook. She finally brought the picture to me and I laughed at how adorable he was. I then looked at the picture and told him how similar he looked at this age to the boy I once dated that took his own life. I am sure that sounded odd to him, but he knows how much I love him personally and that this was a long time ago. I then asked him to get down my old trunks from the attic. Since he loves me so much he braved the dirty attic and brought them down.

Emily and I spent hours in my living room floor sorting through my old items from my past. I had my baby blanket, my teddy bear, old pictures, newspaper clippings, drawings from friends, my old phone list (since we didn't have smart phones), posters that hung in my wall, my mums, and so much more. Most of it is falling apart now, but she still enjoyed looking at it all. Then she started flipping through my yearbooks and she had the best laughs at how big our hair was in the 80's and 90's. We read over all the signatures from my friends and I laughed at all the memories I had. She snapped pictures of her friends parents that were in my annuals and sent them via text. Then I pulled out the news clipping of the boy that lost his life. She looked at it and said "he does resemble Mike's picture". She quickly read through the notification about the tragic incident and handed the paper back to me. I then scanned through all the letters his parents sent me encouraging me to carry on and have a fulfilled life. I remembered how hard it was to deal with his loss and how long it took me to feel okay again. I remembered when I finally let go of the heartache that I was standing in the dark over a small stream and I let a bunch of our notes go. I watched them float away and I guess at the time it was my way of watching the pain go with them. I have always encouraged Emily to come to me with any issues she may have. I have also encouraged her to never think someone is just "kidding" about committing suicide and to tell someone ASAP. I made the mistake of waiting. Twenty five years ago today I found out the hard way that you never think someone won't follow through.

I thanked Emily last night. I looked at her and tried to keep myself composed but felt a few tears run down my cheek. I said "Emily there was probably something in my subconscious that realized before I did that it's been 25 years ago and that's the reason I wanted my trunks. However, you turned what could have been a really sad time into something I will always remember fondly. I had the best time looking through all my old stuff and laughing......so thank you". She smiled and said "I really had a great time too!" It was priceless.

Jude, Bigs, and homes

Last night Jude went through one of his "hold me mommy" phases again. So this morning when Charlotte got to our house I did "Jude's" voice for her.

Jude: "Charlotte I was not going to let mommy put me down last night. Any time she put me on my futon I would say AHHHHHHHEHHHHHHHHHUUUUUUUUUUUUUU very loudly!"
Jude thought that was hilarious and laughed outloud. He was very smiley and very happy this morning. He also smiles so big any time someone says "I love you Jude". He knows what it means and he knows it's a good thing.

His teacher is now coming to our house twice a week. She just loves him so much and we are very lucky to have her. She constantly thanks us for "allowing" her to be in Jude's life. It just astounds me how many people are touched by him. He just has a good soul. So now Jude has his nurses, his therapists, and his grandma coming to the house every week. He is getting lots of attention.

I have an update that Biggy is doing well. He has been having some issues eating, but that's normal for him. He is finicky and any change of scenery makes him lose his appetite for a few days. I was updated this am that his new owner mixed some soft food with his hard food and he gulped it down. She also sent me a picture of him laying on the couch with his new friend the mini schnauzer. I am told if Bigs whines the schnauzer runs to his side. So I think he found a "life partner".

I will update more when I can. I have been VERY busy at work, but that's a great thing. It means people are buying houses and our economy is picking up!

Bye Bye Biggy

I made a hard decision last night. One that I am very teary about right now and one I have wrestled with for some time. 

I said goodbye to my little Biggy

Bigs is a great dog. He is calm, submissive, and smart. However, his shrill bark would constantly give Jude large seizures or spasms. Which would in turn cause someone to yell at Bigs and then he would take out his frustrations on our floors. I will miss Bigsby sitting by my feet every night. I will miss him swiffering the floor when he wanted scraps that I dropped while cooking. I will miss Bigs sitting at the base of the stairs trying to out maneuver the cat so he could get to his crate. I will miss him thinking my friends and the nurses come just to see him vs the family. I will miss him nipping at Casen's feet when he left because he either didn't want him to go or thought he was protecting me. I will miss him crawling on top of my head when there is a thunderstorm (literally).

Bigs and Emily just never really hit it off so she wasn't very upset last night. I had cried several times the night before so I tried to keep myself calm last night. I had some friends that are huge dog lovers that wanted Bigs. They are actually perfect for him. They are at home during the day and only have 1 other very small older dog. They spoil him rotten so I know they will spoil Bigs too and that's what he needs.

They came to visit to see how Bigsby reacted to them and it was instant love. So I grabbed a big plastic bag and packed up his bed, his blanket, all his clothes, and his mountain of toys..............and then put him in their little crate. I was determined not to cry in front of them or him. However, I kept picturing him waking up the next morning wondering where I was at. I reminded myself that this is best for Bigsby. He won't be yelled at ever again for doing what comes natural to him. He will be loved, spoiled, and cared for.

You were a good dog Bigs...............thanks for loving us.

A weekend update

Saturday was a good day. I took Emily and Mike to meet my cousins family for breakfast. After we exchanged some laughs we parted ways to complete our day. Emily and I went to get her shoes to go with her interview dress for Miss Teen. She picked a pair of funky but cute shoes to go with the darling dress she picked out. I said "I don't think those are normal interview shoes". She replied "well I am not normal and they show off my personality". Well said......I let that subject go. We then went to get her hair done in Dallas which afterwards I professed to her that I would be buying MYSELF some clothes and items in May. She agreed.

Once I got home my husband was frustrated from trying to put together a pottery water feature he has had pictures in his head. Jude was sleeping soundly.........which I found odd because he seems to be sleeping a lot more lately. Once Jude woke up I grabbed him and we sat together on the couch for a long time.

Jude's seizures have increased along with the sleeping. The neurologist cut the new Artane down to once a day. I thought I would see a marked difference this weekend, but I didn't. Mike is not convinced it's the new medication, but I am. Yesterday Jude cried for over an hour, but I think that's because our little dog had given him several seizures due to his barking. However, for the most part Jude is happy. He wants to be held a lot, but he is happy. It's always a mystery with Jude..........wondering if it's just "Jude", medication, or a sickness.

Easter was a good day too. We don't do much at my house in means of a big dinner. My family is a bit scattered around so it's hard to gather everyone together. So I sent Emily with her dad because they do a huge hunt, dinner, etc. Mike and I stayed home and we worked our buns off. I cleaned the entire Emily's Smile Box room and sorted everything into appropriate bins. It looks so much better. I marked all our garage sale items, cleaned my closet, potted plants, Mike cleaned the carpets, I unpacked a bakers rack and pulled it outside for a potting bench. So it was a very productive day.

Jude is having his revaluation for the program he is under in Texas. Due to the cuts to these programs he will be losing some of his benefits. I like to say it's the fact the state thinks Jude has gotten better, but the reality is there have just been governmental based cuts. However, we are still lucky that he qualifies for benefits and help. We don't use all our benefits each year anyway. However many kids I know are losing their benefits all together because they no longer require skilled nursing. Due to Jude's aspiration and other issues he is determined to have a medical need. I am sure I could handle Jude on my own via my nursing degree obtained through osmosis (lol), but I work. We are also VERY lucky Jude gets some nursing on the weekend. We love and trust his nurses and it gives me time to spend with Mike. I think this has been vital to keeping our relationship healthy.

I will leave you with this quote because I feel it's needed.
 Happiness depends upon ourselves.
- Aristotle

Jude update and a little rant on debates

Charlotte had a rough morning with Jude again yesterday, but finally in the afternoon he began to become his old self. I am very thankful because I was beginning to research other issues and we all know the Internet can be your enemy. Jude had started Artane which is a medication for his tone about two weeks ago. I was beginning to think this might be the issue: http://www.ninds.nih.gov/disorders/neuroleptic_syndrome/neuroleptic_syndrome.htm . Jude was fitting most every symptom. So I was very happy to see his smiley face when I got home last night. The only lasting issue we seem to have that is a common occurrence is extremely cold feet with bluish toenails. However, I have been reading this is common in CP patients so I will mention it to the doctor.

So this week has been full of debates from various people on my facebook and in life in general. One debate was been with a friend who is so nice that she has basically been railroaded in a divorce. A man who never once tended to his children before will now be awarded a 7/7 split because she wanted to believe the best in him. As I shook my head and wanted something different for her and her children I realized it's just not my choice. I also realized that being to "nice" is a quality I once possessed before the world took hold of me. Being nice is something we should all strive for. Yes, it can cause you to get ran over in life, but well.........there is a defined line between good and evil. I for one believe in the end good will always win no matter how long it takes.

Another debate has been of the equality of marriage issue. I am one that believes everyone should have the same rights. Would civil unions provide the same "rights" as a marriage does......yes, but the republican state of Texas will never allow the civil unions. As we were watching Lincoln last night they showed a scene in the Senate were a man bent down and said "Would you vote for something that goes directly against God?". These people believed God didn't want blacks to be equal. My husband looked over at me and said "reminds me of the Gay marriage topic today". It amazes me that he is so in touch with sensitive topics.  No I am not comparing the topic of gay marriage to slavery, but I am comparing it to equality. I am showing a pattern that any times people don't agree with equality ie blacks voting, women voting, etc then they say it goes against God. I live by his rule that thou shalt not judge. It's just my personal preference, but it seems to me a whole lot of people are very judgemental these days. I haven't gotten into the debates on facebook and I don't plan to start on here. I was just expressing my opinion so no need to reply on the issue.

I guess sometimes I get over loaded with everyone's opinions on what they think is right. Sometimes it's just to much negativity. Gay marriage, non marriage, giving birth, hospitals, c sections, politics, non politics, voting, non voting, vegan, non vegan, pet lover, non pet lover. Just let everyone be themselves and think how they want. If they aren't committing crimes then it's within their rights.

Body temp regulation?

Charlotte said Jude stayed about the same today. His fever didn't come back, but she had given him Motrin early in the day. About 6:15 she gave him Valium (diazepam) due to Jude being so uncomfortable. He slept until 9pm.

He woke up with a few coughs and like he wasn't sure what was going on. I noticed he felt very cold.......when I took his temp it was only 93.4 aux. I checked his toenails and they looked pretty blue. I would chalk this up to being cold, but he was under a blanket. So my next question is wondering if the medication could cause this issue.

I took him into his bedroom and changed his clothes, diaper, etc. This got his temp up to 96.4 which I could deal with. His pulse was 134 and his ox level was up to 98. He still cracked a few smiles for me so I am still hoping he is on the mend.

He isn't sleeping with me tonight like he did last night so I am sure I will be in there about every hour to check on him.

I am not sure what else would cause an issue with Jude not regulating his body temp, but it is a bit strange.

What it's like when Jude gets sick

I thought I would give you a glimpse into the way my brain works when Jude is ill.

Wednesday Charlotte had to give Jude some Valium because he was so rigid and cranky. So I began to wonder if he was starting to get under the weather.

Saturday night Jude started running a fever and wanted me to hold him constantly. I informed our weekend nurse on Sunday morning that Jude was running a fever over night and we had gotten very little sleep. As I staggered back to bed and covered myself with my blankets the nurse came to my door in a panic.

Nurse: Jude's heart rate is at 219!!!
Me: Ok well let's evaluate this
Nurse: I just... I mean I know I need to call when it's that high (he was very worried)
Me: This happens with Jude

So I start looking at the machine running things through my head.........pulse ox: 96, heart rate: (now at) 186. Fever: Axillary 102.2 (so 103.2). Cheeks are flushed and skin is dry/flaky, urine is dark. I immediately start rationalizing things in my head. I know you can't always trust the pulse/ox machine...especially with a seizure patient...but it's probably pretty accurate. So then I start wondering if the dark urine and chapped lips are due to dehydration from the fever or if we are dealing with a kidney issue. I noticed that his nasal area is swollen near his eyes and he winced when I touched his ear.....hmm possible sinus/ear infection? I took out a stethoscope and listened to his lungs.........hmmmmm clear up top for sure.........bottom lobes sound a little diminished........could be respiratory. I ask the nurse to draw up some Motrin. I feel if we get his fever down his vitals will stabilize better. I also asked him not to administer the abuterol because it wouldn't be a good combination with a high heart rate. I explain again that Jude does this sometimes and we have learned not to panic right away. Poor nurse.....he isn't used to this with Jude. Charlotte is a pro but she deals with Jude being ill about every 3 months.

So we give him the Motrin and I woke Mike up and sent him to the store for pedialyte. I turn Jude to the left side and then turn off the lights. I am patting him and his pulse ox goes up to 98 and his heart rate starts coming down. When Mike got home I put 3 ounces of pedialyte in his IV and Allen poured in his food, etc. I let the nurse know that Jude needs to sleep. The sweet concerned nurse said when Jude wakes up he would give him his breathing treatment if his heart rate is down and I agreed.

I went to lay back down for a little while. I knew Jude needed to go in but I also knew this probably didn't warrant a trip to the ER and Cook's Children's clinic in Southlake probably didn't open until 10am since it was a Sunday. I also figured Jude needed the rest and we needed to get everything stabilized on him before we stressed him out moving him. So about noon we took him to the clinic. The doctor drew blood and did a chest X ray. My poor boy is going to wind up glowing from his every 3 month chest X ray.  She said the blood looked like he had a viral infection, but that she thought he might have a sinus infection too. So she did prescribe him an antibiotic and instructed us that if he wasn't feeling better in a few days to take him back in. I knew she was giving us her best guess..........but isn't that what we all do with Jude? So I am hoping that the antibiotic will cure whatever his ailment is.

So we went home and last night Jude would NOT let me put him down for any reason. If I laid him down to go to the bathroom by the time I got back he was in a full on raging fit. He was just miserable. So finally about 10pm we administered the Valium and I took Jude to my bed. I asked Mike to sleep on the couch so I could be next to Jude to assure him he was okay.......that as a good decision. Jude woke up several times throughout the night, but I would lay my hand on him and he would go back to sleep. About 3am he woke up with over 104 degree fever so I gave him more Motrin to bring it back down. He slept pretty soundly then until 5-6am and he woke up crying. I soothed him back to sleep until about 7:30. Then he got up seizing and throwing up, but then he mustered a little grin. The grin made me feel like he is doing okay just having a hard time. So we will watch him for the next few days. We have learned not to panic just evaluate the situation and take it a step at a time.