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.

Life can change in an instant

To be honest one of the reasons I haven't agreed to Mike's want of another child is because I am afraid something will go wrong. I know that sounds sad.........afraid that something will go wrong. I wasn't just afraid the pregnancy would go wrong, but that something would happen in the future and I wasn't sure if I could handle it. I never thought I would be one to live in fear....but I am. I was afraid of finally.......letting go and being very afraid.

So today when I got a call from a friend that her young niece was very ill my heart dropped. I felt that fear again. My friend had been updating me since her sister rushed her daughter to the hospital a few days ago. I suggested a few possible ailments, but never expected the one she came back with. She told me her niece possibly had west Nile encephalitis. Which basically means her brain was very swollen due to the virus. On top of that she had suffered a stroke..........damn strokes. So as usual when medicine is concerned.... it's a wait and see situation. However, I kept telling my friend that children are RESILIENT. Her niece was healthy prior to the onset of the infection and they caught this early so this gives her great odds. I also told her to be positive. One thing I insist on with Jude is that people are positive around him. I think kids can pick up on that.......they hear more than you think they can. My friend is always full of sunshine and positive thoughts so I know she will spread good thoughts.

So I stepped back and wondered if it's ever actually valid that we live in fear. Jude's situation well "it is what it is". We give him the best possible care with the hopes that he will be with us for a very long time.  We love him with all our heart knowing he gives us the same in return. However, when you have a overall healthy child that is suddenly facing a struggle for life.......do you still allow fear in? No you don't. I remembered that you put on your boots, you dig in deep, and you accept nothing but a positive outcome!

So with that here is another thought. Life can change in a mere second. So let your worries go and just hug your kiddo's or family. Also, if you are a father and cannot take the time to care for your kids in an emergency situation you need to revaluate your life.......but I guess that's my own personal opinion.

Much better and a dedicated teen

Every now and then I just need to have a good meltdown...I feel much better now. I looked around and realized I have a really good life. Jude's situation can be challenging, but he is so worth it. Plus, we are very lucky that he doesn't require a trach or many other things he could possibly have. I have a GREAT job, Mike is working, Emily is thriving, and we are well. We are living very comfortably. Mike and I even have the luxury of meeting once or twice a week for lunch. It's our "us" time and our lunch meetings keep a closeness in our relationship.

So why the change of heart? Who knows. However it could be that I actually got some sleep last night! Jude was still awake due to the new Artane regiment, but the cat..........the cat was introduced to the new storm door! He didn't like it and couldn't scratch it. Mike's dog Spot didn't like it much either. I LOVE to walk during warm weather and generally walk 3 miles within 20 minutes on a spring/summer night. So I take our naughty, but cute Jack Rusell terrier Spot on my lenghty trek. Well I was getting his leash and he spied the new storm door. Right when Mike yelled "He is going to...................". Houdini (AKA Spot) tried to escape and ran smack dab into the storm door at full speed. All we heard was BANG and then ARRRRRRRRRRR and then .......... the terrorist hit the ground. I felt so bad for him, but I have to admit.........we were also laughing. Spot shook it off and came over wagging his tail to go for a walk. I walked him towards the storm door and he whimpered and let out a low growl. Once out the door he was dragging me behind the leash as usual. I am pretty convinced he will never try to escape again. The crazy thing is I think the animals have kept me up just as much as Jude. I could have had another newborn vs all these crazy animals. lol!

So Emily is wanting to try out for her upcoming high schools drill team. She is attending a drill camp to prepare her for her try outs. She started the camp today and text me from her class that she was in over her head. We all know that Emily is an amazing child, but she does have a tendency to try to back out of things when they get difficult. So I stuck to my guns and I assured her she can do this. She has to learn a full 1.30 minute dance routine with kicks, jumps, lunges, and full ballet moves within ohhhhhh 24 hours. If you saw the recorded routine you would say "no way". However Emily has vast experience doing this because of her dance/pageant upbringing. She is upstairs as I type rehearsing. I think it's good for her to remember that not everything comes easy and that most things require dedicated hard work. Tonight she asked me to research what it takes to become an infectious disease specialist. Once we researched the entire outline she said "that looks hard... do you think I can do it". I said "OF COURSE! but you need to follow in your cousin Jesse's footsteps. If this is what you truly want and dream of then you need to put boys and distractions aside and concentrate on it. It will mean lots of sacrifice and dedication". She sighed and laughed and said "Mom it's like 10 years of school". I said "Well Em you will be 18 when you graduate right?". She said "yes". I replied "Well you will be 28 at some point anyway so why not be 28 with a doctrate?". She said "good point mom".  

a little update

I am a bit better. I got some sleep last night which is good. However, after we gave Jude his new medication last night about twenty minutes later he threw up. It's hard to know if it was due to the medication or if it was due to phlem.

Not much to update today, but wanted to assure everyone I have not jumped off the cliff. lol!

I resemble that stressed out Monday cat!

First let me state that I am REALLY irritated that mother nature didn't get the groundhogs note that Winter was suppose to end EARLY! I walked out the door this past Sunday with flip flops and a T shirt on...only to run back in and throw on a pair of boots and a sweat shirt. I was very irritated! I am so ready for warm weather that I could do a dorky Geico ad for it if it would insure the fact that the warm weather would arrive ASAP!

Second this may seem like one gripy blog.........I am tired again. I just am. I need a vacation. Then I feel guilty for saying I need a vacation because so many people don't have the means to take one but I am just TIRED. Sunday night Jude didn't sleep well at all so I drug myself to work (still sick) and propped my eyes open with toothpicks. So last night we introduced a new tone medication for Jude called Artane. Sweet little Jude was just laying there "dinked" out (as I would say) with his eyes open. He just could not fall asleep. So it was another rattled night.

Then I have dealt with a new case manager for Jude's medically dependent children's program and she is a handful. I loved his last case manager! She was so understanding and really worked with our situation, but this one seems to care two craps about the fact I work full time. Plus I have multiple agencies calling regarding various aspects of Jude's life and they all seem to need me to take a day off work. It's life. It's what I have to do, but ..........I am maxed out.

I tried to tell my family yesterday that I need to relax but they thought I was crazy. I don't know why I feel so overwhelmed lately ... I just do. It's to the point that if anyone even suggested I take something else on I just say "No" before they even start. So I have decided to try to de-stress some. I am just sending out Smile Boxes when requested not setting up any new parties right now. Then I am taking in the entries to Regal Princess, but not traveling for it right now. I don't have it in me to do much more.  Em has a lot going on too and I know that has something to do with it. It's not her fault. She is a teen and just naturally has a lot going on.

I took a walk last night and when I got back Mike made dinner. I think he knew that even though we were joking and laughing I truly am a bit maxed out. It will get better........it always does. However, I am looking at taking a few days to get out of town and just relax. However, I am not sure it would be relaxing with all Jude's equipment, etc...but we can try!

Maybe I can win the lottery and then not worry and work so hard anymore.............lol! One can hope :)

I am blessed and grateful for my life just a little frazzled.

Jude update

Well little mister Jude had an auxiliary temp this morning of 101.1 so add a degree and we have 102.1. As a special needs parent you quickly learn to NOT panic on any high fever even 105+. It's the body doing it's job and you learn to control it. However, this means Jude is battling something............again. So is it viral or bacterial? His pulse ox was at 92, respiratory 48 and heart rate was in the 160's when I left for work. Charlotte spent about an hour giving him his breathing treatments, bathing him, giving him Motrin etc. This brought his temp down to 97 aux, resp rate to 40 (still high) and heart rate to 130 (still high but tolerable). She also indicated she saw a seizure that was different than his normal ones. She said he was sitting in his wheelchair and he seems to lose oxygen, but his seizures only last 40 seconds so he was okay. The good thing is Jude is in good spirits and smiling which means if he is ill it's not that bad yet and hopefully won't be.

So we will continue to watch Jude to see if this is anything that warrants a trip in or not. His neurologist got his lab results back and they are good. However, he wants to see him since his tone has been off and seizures look different. His pulmo wants us to take him in if this situation gets worse and his school still wants a meeting about home bound school. Emily needs to go to the dentist Friday and she also needs to see a dermatologist so I need about 3 of me!

I am well but the allergies in TX are terrible today!!! I am sneezing my head off. Well I will update on Jude.

What's that noise?

Last night while sleeping I heard a very odd noise that woke me up. It sounded like a mouse squeaking, but it was coming through the baby monitor we have set up to hear Jude. When I got to his room his breathing was very shallow and he just had a little squeak with each breath. I hooked up his pulse ox and it was at 86 and heart rate was 143. I rubbed on his chest and did some CPT to try to loosen any mechanical obstruction (Phlegm) that might be causing the issue. Mike suggested that I give Jude some Benadryl so I filled a syringe up and administered it through his button. After I felt he was comfortable in bed I went to lay back down, but I never could sleep right. I kept listening for Jude's breathing. If I heard him it kept me awake and if I didn't hear him I panicked.

In the morning Jude's pulse ox was much better. After his neb treatments Charlotte said it stayed around 97-100. She said he is in good spirits, but doesn't seem 100% himself. So we are keeping an eye on him.

Emily is doing well. She has all her high school courses picked out and is trying out for the drill team next month. She is also still getting ready for her Miss Dallas teen pageant. If you haven't liked her page please visit she would appreciate it.

https://www.facebook.com/#!/EmilyLitesForMissDallasTeen2013

Turning 40 is just fine with me!

The best way to find yourself is to lose yourself in the service of others - Ghandi

Isn't that the truth. Over the past few years I feel like I have been on an expedition to find myself. I have struggled with sorrow and grief due to our situation. Then I would find myself and be satisfied again. However, I never felt the peace and calm I do today. Maybe that is the "wise" that comes with turning 40.

Through Emily's charity and through her other endeavors I have found an outlet for my healing. Through watching others and their daily lives I found found an appreciation for my own life. Now I understand that things aren't easy and never will be, but I appreciate the struggle life brings and the accomplished feeling of riding the storm.

I can look at Jude while he sits on my lap and honestly say without a doubt he is the biggest blessing ever! He has taught me patience, compassion, and that there always is a silver lining. Emily has taught me that raising a teenager IS like nailing jello to the wall, but that they can teach you as much as you can teach them.

Most of all I have learned what I always preach. Everyone has a story.........it's what you do with your story that matters! Fate lays out the choice of paths you can take and it's up to you to choose the right one. You can spend your life blaming your past or you can move forward and embrace the future. It's up to you!

I am okay with growing older. At least I am alive, happy, and still capable of learning so much more.

Blood work and a like or two

Jude had blood work done yesterday. It will take about two weeks to get the tests back to see what his seizure medication levels are and if we need to adjust them. He is having a lot more absence seizures so there has to be something going on. He has also been very "spastic" which means he jerks and turns his head back a lot. Other than that he has been a very happy boy lately. We did decide to keep him from going back to school and have inquired about home bound schooling. He will still get therapy 3 times on Mondays and 3 times on Fridays so he is getting plenty of interaction.

So I have a favor to ask. Emily has decided to compete for Miss Dallas Teen 2013. This will be a stepping stone to try to go back and compete in November at Miss Texas Teen again. However, just the honor of being Miss Dallas Teen would be amazing for her. She has set up a website and if she receives the most likes by 3/10 she will receive a free entry. This would truly help her financially. If you could like the page and share it with your friends that would be wonderful.

https://www.facebook.com/#!/EmilyLitesForMissDallasTeen2013

She also has an Emily's Smile Box party this weekend in Southlake. If you are interested in attending and helping us make boxes please email me for more information. As usual we appreciate everyone's support and donations to her cause.

My Jude.

Jude is doing pretty well. He is still having some issues with his lungs in the morning, but once he has his neb treatment he seems to be okay. He is also having a large increase in absence seizures so Mike is taking him to have his blood drawn on Saturday. The blood results will then be sent to his neurologist who will decide if they need to increase his medication.

Jude has been super happy lately!!! He lights up when I get home and start talking to him. He has still not gone back to school and we are checking into home bound schooling. Overall he is doing very well at home. He has therapy three times on Mondays and three times on Fridays. The nurse works with him the other days and we work with him too. I read him "Mrs Spiders Tea Party" last night, but he didn't seem to like it as much as "Goodnight Zoo."  However it's one of my favorites so I am hoping he will end up liking it.

I have been busy with work and home. It is a bit slow at work so if anyone would like quotes on auto, home, life, etc please let me know. I prefer to keep myself as busy as possible during the day. Emily is doing well and is getting ready to go to high school. I am astonished my little girl is about to be a freshman. I really hope she has a great high school experience and remains as responsible as she is right now in regards to her social life and her grades.

I received another email from a mom who received a similar diagnosis as Jude did when he was 3 months old. I felt sorry for her. To her Jude's situation is the worst case scenario and she is convinced her baby will be fine. To me I feel so lucky. I have an adorable little boy he smiles, knows me, and who is always happy. He is my little blessing.

Jude's issues and Jude's progress

I haven't really mentioned it because it sounds so repetitive, but Jude is having a few issues again. A few days ago I noticed Jude was running a low grade fever. He also sounded a little raspy again, but he was smiling and happy. Yesterday Charlotte mentioned Jude's left lung was sounded a bit "junky". So today prior to leaving I went to check on Jude before I left while he was getting his breathing treatment. I noticed his pulse ox was at 96 and his respiratory rate was at 130, not that bad but not great either. Charlotte said she was still hearing "Junk" in his left lung. So now the question is do we just wait........or do we have it checked out. He seems to be happy, but not tolerating therapy. I think we will most likely just continue the breathing treatments and watch him carefully.

So yesterday I was talking to someone about a situation they were dealing with. I told her that during my experience with Jude I have learned I don't want people to feel sorry for me but I do want people to use common sense and treat me with respect. I thought I would share that because I think everyone should feel that way in life.

Next I want to share Jude's progress. I am just so proud of him! Even though he has these lung issues he has come such a long way................we as a family have come such a long way!
The first video I want to share is the one that is so very hard to watch. So DON'T watch it if you are sensitive. It's of when Jude when he first started having seizures. They were so hard on him. He was on phenobarbital here, but it didn't phase his seizures at all. We were SO lucky to find Dr Riela who pursued medications until he found one that worked.

The next video shows Jude laughing 1 year ago at Emily making noises. Such progress!

and finally the current dated video I shared before showing Jude working on his head control.

He is such a big boy who tries so hard!

What does the Cow say Jude?

So last night Jude's breathing was sounded "crackly" to me again. I gave him a lot of CPT and with that he seemed to get better. He laid in my lap as we watched TV and suddenly the Chick Fil A commercial came on. The cows kept going "moooooooooooooo" and Jude thought it was hilarious. I suddenly realized that for some reason I have never gone over the barnyard animals with Jude. I have read him books, but we haven't gone through your standard "what does the cow say?" lines. So I decided I should treat Jude as normal and this is how our conversation went.

Me: (commercial playing) Jude are those cows? Do they say Moooooooooooooo
Jude: ea (sounded like y-ea)
Me: Jude what does the cow say? Moooooooooooooooooooooooooo
Jude: aaaaa
Me: that's right
Jude: smile
Me: Jude what does the cow say? Moooooooooooooooooooooo
Jude: aaaaaa
Me: yes!
Mike walks in
Me: watch!! Jude, what does the cow say? Moooooooooooooo
Jude: nothing.... just a few crickets chirping!
Me: Oh come on Jude show daddy. What does the cow say ? Moooooooooooooo
Jude: (smile) choir of crickets chirping
Me: Well Jude you little stinker!
So Mike heads back upstairs and Emily walks in
Me: Em watch! Jude what does the cow say? Moooooooooooooo
Jude: aaaaaaaaa
Me: Well that solves it he just likes me better
lol!

So a lesson learned. I need to remember to work with Jude on regular everyday items that we work with preschoolers on. I have always said he knows more than we give him credit for.

The nurse checked his lungs this morning. She said his left lung did sound crackled but it was better after his breathing treatment.

a video of Jude and some sleep

Jude has been doing well lately. He has been giggling a lot and really working hard lately. I thought I would share a recent video of Jude working on holding his head up.

Only issue I still have is that Jude still wakes up at night. Last night I got up about four times with him and that doesn't count the times Mike got up. I know it will always be like this since Jude cannot roll himself over, but it is just taking a toll. I finally broke down and called my doctor to see if there is something she can give me to relax at night. I am not a fan of medication, but I guess I have held out for over four years. It's better than drinking, binge eating, or smoking I guess. Part of what convinced me of this is I had a major heart palpitation attack this morning. They don't usually bother me but this one lasted awhile fluttering on and off. Which in turn sends me into an anxiety attack because at that point I am convinced I am dying (insert giggle).  I guess my body is saying it needs a little rest.

Last night as I worked out I noticed my trainer put a 50 lb weight on the floor. I stared at it and then looked at him like he was 100% insane for even thinking I could lift it (which he didn't expect me to). However, then I realized that Jude is a little over 40 pounds and I lift him all the time. I think he is my little exercise master.

We are still trying to decide if we are going to convert the bathroom for Jude at our current house or look at moving into something different. We still worry about the loss of the master closet and what it will do to resale. 

Have a good week!

a little positive energy

This past weekend Emily and I had a girls trip to Houston for her to compete in the teen side of a pageant. She did very well and we had a wonderful time! However, I did miss Jude. When I got home and walked through the door I said "Juuuuuuuuuuuuuuuuuuuuuuuude" and he smiles so big!!! He was so happy to see me too.

So even though I appreciated the get away with Emily I appreciated coming home too. When I administered Jude's medication I stepped back from his bed for a second. I looked at his IV pole with his food bag hanging from it. The bag was full of his nightly feed and water. I thought to myself that I was happy to be home and very okay with our life. I felt a peace and a calmness as I turned off Jude's light and told him "Goodnight Gorilla"



Ps. I mentioned I would share quotes from a site I found. Here is another one "Let the knowledge that you always have a choice empower you to meet one more day in a negative situation by radiating, and basking in, your own positive energy."

Jude's lung update

Mike took Jude to see his pulmo yesterday as a follow up. The report was actually really good. He said Jude's lungs look like that of a child fighting a normal viral infection. He said he didn't think there was any issue with mucus plugs or deterioration like the ER doctor stated. He reassured Mike that there is no particular "time limit" on Jude, but also made it clear that the older he gets the harder it is to treat the recurrent infections. He said it generally becomes a pretty big issue in their teens, but that he watches and adjusts medication diligently.

We are happy that it looks like he is doing better. He also says he sees NO reason why Jude cannot go back to school but the therapists disagree. I am going to put a call into Jude's school to check on flu, strep, etc cases. The doctor said what I always tell Mike, "we cannot keep him in a bubble". However, we can be cautious.

We are all beginning to feel better. I am still on quarantine (self imposed) from my sisters new baby and I cannot wait to see him. However, I didn't want to take anything over to a new born (illness wise). I am also very content and very happy lately. Stressed, tired, but happy!

A jude update

Jude has a doctor appointment today at 2pm with his lung doctor. I am anxious to hear what they have to say. The nurse said he sounds much better but still has "coarseness" on both sides. We have decided that we will not be sending Jude back to school any time soon..........if at all. He has therapy by three different therapists in home twice a week. I may also talk to the school to see if they can offer him anything home bound. Since Jude has gotten better he has been very cute! We have noticed an increase in Jude's ability to communicate in his own way. When I get home at night he immediately wants me to pick him up and expresses this through making loud vocal sounds like "Uhhhhhhhh".  When I pick him up his left hand immediately reaches to brush his left cheek, which is the sign I taught him about a year ago for mom. So when I noticed he was doing this again I said "Mom?" and he got a HUGE smile on his face. I said "you are so smart Jude" and he smiled even bigger. Sometimes even I forget Jude is a stroke victim and he knows what we are saying to him. Yesterday Charlotte said he did amazing in speech therapy. He was in his stander and kept hitting the button on the toy every time the teacher asked him to. He also opened his mouth wider last night each time I asked him to so I could brush his teeth. These are small steps but good ones.

So our primary goal is keeping Jude well. We are all washing our hands on a regular basis and not taking Jude out of the house right now. I know he probably gets tired of the inside of our house, but we know he loves to be at home.

I will update tomorrow on what the doctor said.

I wanted to leave you with a quote I found today regarding dealing with negative situations and people while maintaining a positive attitude. I thought it was amazing. "Forgive them. Forgive them for everything they have ever done that has been difficult for you. Then forgive them again and again for each new bit of gossip, sarcasm, or anger."

What happened Friday

I have been at home with Jude and I have not been able to update exactly what happened on Friday. Jude had been up a lot Thursday night because he was having difficult breathing and he was uncomfortable. As soon as Charlotte got there I explained what happened and then went back to bed for a bit so I would function at work. About an hour later I walked into Jude's room and Charlotte was still working with him to get his vitals stabilized. She said she was concerned because she couldn't hear any air moving in his lower left lung. He blood ox levels had been in the 80's and his heart rate was almost 180. She had managed to get his blood ox back up.  So I told her I would go into work until our receptionist arrived and then would head home to take Jude back to the doctor. My plans quickly changed as Jude seemed to continue to deteriorate. I then called Mike asking if he could head home and I finally just ended up calling 911.

They stabilized Jude in the ambulance in regards to oxygen and we went on our merry way to Cook's ER again. Once we got in the room the doctor could tell Jude was really sick. She ran a host of tests including blood counts, pneumonia, and RSV. They all came back fine or negative so everyone was at a loss. The doctor finally ruled that she didn't agree with the FLU B diagnosis from that Wednesday and believed we were looking at a lower lung viral infection. She gave Jude an IV of steroids and gave us a prescription. She said she believed Jude was acutely (there is that word again) sick but was releasing him to us to go home. She knew we had nurses at home that could care for him. So I called our home health care to request a night nurse for Friday and the weekend, but they were unable to accommodate. However, Mike and I did just fine. We hooked Jude's pulse ox up to his big toe and set the alarm to go off at specific numbers. It made for a sleepless night, but at least we knew we would get to him if there was an issue. We also pushed fluids and stayed on top of the medication. Our nurses during the day were wonderful and made sure Jude got his CPT and his breathing treatments around the clock.

With dedication Jude went from looking like this (after a breathing treatment and steroids at the hospital).

to this

 

 

 

Even though I was calm on Friday it was a very scary moment. I hadn't text anyone but very close friends + family. However, the realization that we may lose Jude was staring at us in our face. Mike posted on facebook for prayers and the calls flooded in. We were very lucky but I was a bit overwhelmed until I knew Jude was okay. So I didn't text back right away and I apologize for delays.

It's been hard on Jude lately. He battled pneumonia, then the flu, now the lower respiratory infection. I am concerned about his immune system and the ongoing respiratory issues. Also, as thankful as I am in regards to my life I am teetering on the edge of ........ losing it (well kinda). I am tired! I am tired of not sleeping, of everyone being sick, of working on hard, and having to be out of work. Emily now has an upper respiratory infection and Mike is sick too. When I got to work today and was so overwhelmed with the stacks of paperwork sitting in front of me, the never ending ringing phone, and a computer that decided to go down ...... that I just lost it. My poor boss just kinda walked away...lol. However, my tribulations are nothing in regards to Jude fighting everyday to be healthy. So I will look forward to my vacay in April and hope that we actually get away this time. Em and I are suppose to be going to Houston on the 18th, but if Jude doesn't continue to improve that will not be happening. So we will see.

My sister had her baby this weekend! A little boy named Caleb who was 7 lbs even. I wasn't able to be there as I didn't want to spread anything Jude may have had that may have passed to me. I will get to see him every soon! He is in the NICU for low blood sugar, but that is common since my sister had gestional diabetes. I am sure he will be just fine, but a few prayers would be great.

A little update on Jude

I will go back when I am by a large computer vs my phone and explain to
Everyone in bloggerville what happened with Jude yesterday but until then I am posting a small update. After our huge scare the hospital felt comfortable enough releasing Jude to go home. What you have to remember is we basically have a small hospital here with nursing at least ten hours a day. Plus we are medically trained so if they can avoid keeping Jude in a building crawling with germs they will. His pulse ox was still in the low 90's but his respiratory waves were consistent which is good. We hooked his pulse ox/heart rate monitor up last night so we could all sleep. It went off about 5 times but we were able to quickly remedy the situation. Our nurse (god luv her) got here about 7 and I went back to bed until 10.

She said it took her about an hour of working with Jude when he woke up to get all his vitals looking good. He just has a lot of junk that builds up while he sleeps. He is still very pale and we are watching him close. The doctor prescribed him steroids and we are hopeful they will work. I will
Update the full story Monday. We are thankful to everyone that has texted or emailed.

An update on Jude on his new bout with flu and more

Sunday night Jude started getting really cranky with me and wanted to be held constantly. This is generally an indication he is not feeling that great. However, on Monday he was once again smiling so I just chalked it up to a bad night. Then he decided to get cranky again. So yesterday morning he woke up and I went in to give him his good morning kiss. I said "Good morning Ju Ju" and he smiled real big, but when my lips touched his forehead I said "WOW!". I asked Mike to get me the thermometer and Jude's temp was 102.7. I pulled the covers back to let him cool down as much as possible and his fever went down to 100.7 (all these were taken auxiliary so add a degree). A fever isn't necessarily a bad thing. A fever is the body's way of fighting infection.........however in Jude it can signify pneumonia.

So I went into work and then left around noon to take Jude into the ER. We spent 7 hours at the ER getting tests and waiting. They tested for Flu, pneumonia, etc. I told them he had the flu last month so I doubted that was the issue......but sure enough he has it again. The CDC said the time lapse between the last case made it impossible to be a remaining virus... so somehow he picked it up again...sigh. So in a non-chalant way the ER doctor said Jude's chest X ray showed mucus plugs but no apparant pneumonia. Ok back up rewind...........what's a mucus plug? I mean other than when you are pregnant. So he explained that in people with chronic respiratory issues they can develop mucus plugs. Here is some information. http://www.livestrong.com/article/264808-complications-implications-of-mucus-plugs/ I asked him if this can be a sign of the breakdown of Jude's lungs due to the continous issues he has had. He said it would make sense because there are decreased breath sounds in Jude's lower lungs which is an indication the top is working better than the bottom. What does all this mean? Who knows......... another we wait and see issue obviously.

So last night I was rather upset after hearing all this and felt pretty despondent, but then I reminded myself of something. As great as the ER doctor was he was not a specialist. So I told myself I would not panic until I talked with the Pulmonologist (I figured this out after I texted my closest friends in despair..sorry guys). I placed a call to him first thing this morning. Once they called back I...... well was both irritated and relieved. I was irritated that they did not review the actual X ray like I asked them to and only reviewed the report. His nurse said that the Pulomonologist has deemed Jude as "acutely ill". The relief part came when the nurse said the specialist believes all of Jude's illnesses lately are the direct result of the mucus plugs and not a sign of a chronic issue. However, they can't be sure. They basically said to continue the CPT (compression therapy), continue his breathing treatments, have him rest, and give extra fluids. However, if he continues to grow weaker, or more irritable, or runs a fever again to bring back to the hospital. So basically everything I already knew. Anyway, he is already more irritable today. Charlotte called earlier and had given him a dose of diazepam (Valium) so he would sleep. He is whining, rigid, and miserable....but he does have the flu.

It's always a toss up of wondering with Jude. I am very thankful for his nurses at home because I would probably be a walking panic without them. So we will continue to watch Jude closely. It's always a guessing game with him, but I am very thankful for all the equipment we have for him. I honestly don't know what these continued illnesses mean for Jude. I don't know if it's a fluke or an indication that his body is just that immune compromised. We all wash our hands so well, Jude had the flu shot, we keep him indoors with no school.......so it's up in the air. I can share with you something personal. I don't want any backlash on this or email about how everything will be fine. My worse fear is putting Jude down to sleep and losing him during the night. It keeps me awake a lot lately and I am always placing my hand on his little chest while he sleeps. I fluctuate between thinking everything is fine and just our normal to knowing Jude is not well lately. He still smiles for the most part and still vibrates with the positive innocent energy he always shines with. So we will continue to monitor him and continue to help get him well.

Help a friend

Please help my friend Kim that is battling brain cancer. She is so brave and could use your help for daily living expenses. If we got 100 people to donate $5 it would be amazing. She is so brave and doing this on her own. Your contribution would be greatly appreciated.

update

If you are on my Facebook then you know Jude already has the flu. So he got through the Pneumonia and came down with the flu. Before you ask...........yes he had the flu shot. The doctor explained Flu B is not in the shot and therefore people are spreading it quickly. She said they think if the person has had the shot it lessens the severity.

Today Jude's nurse is pushing fluids. He still looks very pale and you can tell he doesn't feel well, but he is smiling. To top it off Emily is not feeling well and is at home today in bed. I am also still not up to par. I am at work, but really would like to sleep.

I am hoping our house gets well soon! We appreciate the continued prayers. The flu can be dangerous for Jude so we are watching him closely.

Jude Jude Jude

So Jude finally came off his antibiotic last week and we were very relieved. However on Friday night 12/7 Jude cried when I got home for hours. He threw huge screaming fits like he was in pain. I administered the Valium, but Jude continued to cry. I then gave him his clauzapam (sedative) because it was near bedtime, but again he continued to cry. That means he cried through two full doses of sedation medication. We had no clue what was going on. The next day Jude seemed to be fine..........tired but fine. He went the rest of the weekend with smiles.

Yesterday Charlotte encountered a repeat of Friday, but this time the valium did put Jude to sleep. She also said he had taken two 1.5 hour naps prior to his three our crying session. Again, she couldn't find a cause.

So today he woke up at 9:30 and she said he was smiling. He then took a 45 minute nap, spent some time in his wheelchair, and then cried again. She said he is now back to sleep AGAIN. We have no idea what's going on with him. I don't know if he is still recovering, if he is having a relapse, if it's effects from the antibiotic use, if he is dealing with migraines, or what. I put a call into every doctor he has (pretty much) and I am waiting on calls back.

I on the other hand have hit a wall and am very aggravated today. I am not aggravated at Jude, but at the situation. I will get over it........I am just meh!

Jude's update and a recap of Miss Texas Teen USA 2013.

So Jude was released from the hospital on Wednesday night and was able to spend Thanksgiving with me. Since Mike and Em had plans Jude and I stayed home and cooked and watched the parades. We had a good time together. However, I want to point out that Jude was still very ill when they sent him home. The doctor said that he felt Jude would do better at home and he knew we were capable of handling the situation vs others that may not be. I was actually very worried about taking him home because he threw up twice before we could even get him in his wheelchair to leave the hospital. However, he seemed to light up when we got home and seemed to be much happier. He is still coughing, pale, and having a few issues, but he is much happier. We are considering getting a night nurse for a few weeks until he is 100% better. If he should vomit in the middle of the night and aspirate then we take the chance of this happening all over again. Here is a picture from last night when I was talking to him.

Since Jude was home we decided that I would take Emily to her Miss Texas Teen USA competition in Houston. She had trained for it for a year and it was only fair to get her there. On Friday at 2pm I dropped her off to her chaperon. She then checked into her hotel room with her roommate and learned what their schedule would be. I didn't see Emily again until the next morning at 8am when they did a "swimwear preview" of all 101 contestants. Emily looked a little nervous her first time out on the stage (it's a BIG stage), but I was SO proud of her. I am also very glad they did the preview because it gave each girl a chance to get accustomed to the stage prior to competition.

After the 8am show the parents were on their own until 7pm that night. The girls went to interview and 5 hours rehearsals for the big 7pm prelim show. I must say I thought Emily looked very pretty going into interview.

 

Emily was responsible for her own hair and makeup the entire weekend. They do not allow hair/makeup artists to come in. The girls are also responsible for being on time, getting to bed, and keeping their energy up with snacks. They did feed them lunch and dinner at a specified time each day. So it was a lesson in responsibility.

So the 7pm show was GREAT! They did a parade of cities, then they competed in swimwear, and then evening gown. I was so proud of my little 14 year old. She really held her own against all the big girls. I think you can tell from her smile that she was having a great time and loved it

The next day we didn't get to see the girls until 1pm. It was the final show and they put on a full Miss USA type production. I was SO impressed. They did  full dance number (Emily's favorite part) and then they called the top 15. Let me state we KNEW Emily would not be in the top 15 this year. I love my child and I have confidence in her, but honestly she didn't need to win this year. She was there learning the ropes and is still to young to take on the job of Miss Texas Teen USA. They won't generally pick anyone under 16 because it truly is a job. So Emily was not disappointed because she knew she was there to learn. After the competition I asked her "Do you want to do this again?". She was quite for a minute and then said "I am very tired and it's exhausting, but I know it will just get easier each year I do this". So I asked her "well you need to ask yourself do you really want to be Miss Texas Teen USA someday" and she said "Mom I want that job more than you will ever know!! I want to work hard, practice, and learn more so I can get the title someday". However, Em's weekend was not without some stress. She seemed VERY upset Saturday night after competition and this worried me. I finally got it out of her that she accidentally stepped on another girls dress twice coming off stage. This happens... especially with trains! Well I guess the other girl turned around and said "just watch where you are going" and it hurt Emily's feelings. She felt she sabotaged the other girl when it was just an accident. On top of that her roommate had friends there competing and Emily didn't know anyone so she was a bit lonely.........and left in a room by herself. So I explained to her that this was a lesson that it's okay to be alone sometimes and that if you want friends..........go out and make them! Be outgoing and don't be afraid to meet people. I also told her that accidents happen and not to let it get to her.

So overall it was a GREAT .......... but tiring weekend. I am so proud of her and the lessons she learned! On the way home she talked non stop about the people she met, her future goals, the dress she wants, and more. I am glad we went. She also met some people that are local and can help her move forward.  I am also SO thankful that Gina flew into Houston to stay with me. I would have been so lost without her. I am also grateful for Carolyn, Kaylee, Lily, Cara, Kendall, Emily's dad, and Emily's grandparents for attending. Her grandparents even said "we will be here every year that she participates!". Made Em and I feel great.   

So now we rest for awhile! :)

update

Jude was smiling at me more last night which is good, but his fever crept back up about 8pm. I am waiting to hear if there is an update from the doctor. Currently Mike's mom and my family is sitting with Jude until I can get away from work. We are very slow today so I am hoping I can break away pretty early. I feel bad that I have missed so much work in the last two weeks, but I guess life happens.

Emily did not sleep well at all last night and today she feels rather warm. So please amp up the prayers that she stays healthy. She has literally worked for almost a year training for Miss Texas Teen USA. We are suppose to leave early Friday morning so we can get to the hotel in time for orientation. She is still practicing hard, but is a bit nervous. I told her she has to get her nerves under control and she knows how to do this because of her plays.

I will update when I hear more about Jude. I miss my little buddy and I am ready for him to be home.

Jude update

So we went to the ER yesterday and after several tests we learned Jude had pneumonia. They insisted on giving him two bags of antibiotics in the ER prior to admitting him upstairs. Mike stayed with Jude last night because I had to be at work at 8:30. I hated leaving Jude, but I was already out half the week last week due to my illness. I am getting round the clock updates from Mike.

The doctor came in this morning and said a few things. The pneumonia is in one lung and it's in the lower part which is good. It's also good Jude is not requiring oxygen. However he is still very pale and running a high fever. They want his fever broken before they send him home so he will be there a few days. The doctor said he believes the pneumonia may have happened due to a natural breakdown of Jude's lungs. This is so strange to me because I just told a friend the other day I don't think Jude's body is holding up as well as it used to. However, he also said it could be due to him catching my virus and then aspirating on some throw up.

So they are giving him IV fluids and administering the antibiotic and we are hoping he will be home in a few days. I am still planning on taking Emily to Houston unless something happens and Jude takes a turn for the worse. I will then send her with her dad.