Friday, April 30, 2010

I have one hair left on my head

I was about to start my blog this morning when I got a phone call from Mike who was upset. He let me know that the pharmacy department at Walgreens had messed up Jude's prescription, again. So guess what that means? Yep, I was calling all over Texas trying to get it all handled. Each time they get someone new in their pharmacy they end up billing Aetna who denies the Depakote rather than Medicaid. Aetna is our primary insurance, and they have issues with the Depakote, so the Medicaid backs them up due to Jude's special needs. After much frustration with the pharmacy I finally called Medicaid, and got a very nice lady on the phone. She called the pharmacy on conference, and we got the actual pharmacist herself. I thought to myself that the pharmacist was being extremely rude to us, and when she put us on hold.......for 9 minutes......I asked the other lady on the line what she thought. She too said the pharmacist was extremely rude, and there was just no reason for it. So all in all it turns out the medication was entered into the system incorrectly, and the assistant called to tell Mike the medication would be ready in ten minutes. So that was hours ago, and Mike just went to pick up the medication, and they tried to charge him for it...sigh. Boy, I need a nap!

On top of that it's been one stressful day at work. I looked at Jen in my office and said "Girl I need a three Muskateer and a shot of whiskey". I don't even drink whiskey so she thought that was hilarious, and a very odd combination. She just replied, "this week is fired".

Jude had a good night last night, and was full of giggles and smiles for me. I rushed around the house thinking of items we needed to take to DC, and I will be finalizing the packing tonight. Emily was also in rare form last night, and cracked me up. It seems she has become miss saucy pants. Emily is going to DC to accept her award as one of Texas top youth volunteers, and she is so very excited. While in DC they will award the top ten youth volunteers in the nation, which is a huge honor. Not only would it benefit her charity in so many ways, but it would also benefit Emily. Well last night Mike was flipping through the pages of all the state honorees, and he said "Goodness girl.......I dunno.......there are some really good kids in here". Well before I tell you what she said let me give you a background piece. At Emily's pageants, school competitions, etc I try to teach her good sportsmanship. I have a tendency to say the same thing Mike said, but in some other format, so she won't get hurt if she doesn't win. I explain to her there are many great children, and no matter who wins, she is always a winner to me, etc. Well last night she whipped her head around and said "Look I am sick of hearing that! I hear it every time I have something I am going to do. I want to win......OK? There is nothing wrong with wanting to win, and I want to. I will be okay if I don't, but I want to, really really bad So don't tell me I may not OKAY? ". Okkkkkkkk. Mike's eyes just got big, and looked at me. I shrugged my shoulders mouthed "hormones", and Mike continued to read. Then he said, "Wait a minute these kids I am reading are older, and Em is so young.........so maybe just maybe" and Em gave him a stern look. Thus with that enough was said! You had to be there, even though it sounds rough, she said it harmless, and it was funny.

So tomorrow we leave. We have good friends looking after our reservations on American, and I know they will have us in good hands. I will try to blog while we are away, but I may not be able to. On Monday May 3rd they will web cast the announcement of the national winners. Every child that is stepping into this award, and competition is amazing. They have dedicated their hearts, and time to servicing others without expecting anything in return. So this trip is a huge treat for them. I encourage you to tune in, and watch the ceremony because they are all deserving of the win. http://spirit.prudential.com. These kids bring hope to America, and a brighter future to all who encounter them. Congratulations to the 2010 Spirit of the Community award winners, all 102 of them!



Thursday, April 29, 2010

medication update

When I talked to my aunt earlier I assured her there was nothing to worry about regarding Jude's medication. My guess was the Depakote level was a little high, and I was right. It was at 131 so it's something the doctor will watch. He still wants to move forward with increasing Jude's Felbatol when we get home from DC, and then decrease the Depakote after a week. He wants Jude's levels to be around a 40 on the Felbatol, and they are currently at 27. Generally we shoot for 100 on the Depakote, but as long as Jude is alert the doctor seems okay.

Better

I am better today, not completely emotionally healed, but better. Mike, and I had a long talk last night so hopefully that will help. After much digging it seems Mike is just having a hard time coping with the fact that Jude will never get better. It's a realization that no matter what he does Jude cannot be "healed". That doesn't mean Mike doesn't appreciate Jude, it's just something to deal with. Since Mike stays home with Jude he considers our house his sanctuary, and when things get out of whack there, then his life is off balance.

Anyway, I am hoping our trip away this weekend will give everyone some time together, and some time to forget our daily ordeals. I am going to finish packing everyone tonight, and I heard from American Special needs flight services today. I am hoping the flight goes well with Jude in my lap.

We received word that Jude's lab results are back which were measuring his levels of medication. The nurse said she was going to have the doctor call us with the results. Word to the wise, when a nurse tells you that a doctor is going to call you with results, you sigh!! Mike also tried to get his Depakote refilled, but there is a hold on the prescription. So I am patiently waiting to hear from the doctor, and when I say patient, I am lying.


Wednesday, April 28, 2010

breaking point

My heart hurts today. There isn't much that can be done, and really nothing anyone can say, it's just something I am battling. One of the hardest things a couple can face is something happening to their child. It puts a strain on a marriage one that I could never explain in words. Mike, and I have reversed roles, and it's straining sometimes. Many men are not equipped with staying home full time with a child, add special needs to that, and the issues can be very compounded. This is something that I don't normally talk about on my blog, and I am sure most other people don't share either. I guess I am posting it because I have been quiet today, and hurting. I know people have been worried, so I thought I would post a semi explanation. Sometimes life is hard.

For the first time in ten years I walked into my bosses office today, and explained that I needed a day off. I explained that couples have issues sometimes, and that I just needed a break from reality for a few hours. Surprisingly he was very understanding, and gladly let me go. About 1:30 I gathered everything up, and with tears streaming down my face, I left. I went, and had a good long cry, and then I went home. Now I sit, wondering where things stand with life, with the nurse, with my husband, and everything in general. As my cousin says "you have amazing coping skills, better than anyone I know", but sometimes............sometimes I break too.

The good news is Jude's nurse hearing was today, and I think I spoke very well. I had studied what I was going to say, and tried to be as articulate as possible. I am not sure they will rule in my favor, but I spoke on Jude's behalf, and that's what I wanted the chance to do.

Tuesday, April 27, 2010

Precious

I dont' need to write much today, because this is precious! Jude, and Emily last night.


video

Monday, April 26, 2010

The weekend update with Jenn

What a weekend, I am pooped! Friday night we decided to give Jude a haircut, so he would look snazzy for our DC trip. He did well until the last few minutes, and then he was sick of feeling the vibration from the razor. Mike gave him a cute little buzz cut, and I think Jude looks precious.
Image and video hosting by TinyPic.

On Saturday we were up with the sun to greet the day with fundraising. Beverly Moore is a friend of ours and owns a pageant system that was being held in Dallas. A crown company donated a VERY large crown to her to give to one special little girl this weekend. The crown was over 12 inches tall, made of beautiful rhinestones, and at the base it said, "Emilys Smile Supreme".
Image and video hosting by TinyPic, one large crown huh?
Anyway, everyone that entered to win this gorgeous master piece had to pay $30, and all the proceeds went to Emily's Smile Boxes. The crown itsself was custom made, and very expensive. Emily was then able to hand pick the girl that had the best smile, and had the most inner beauty shining through. Emily sat there all day long, while I sat next to her. She made notes on every girl that took the stage, and narrowed the winner down to ten, then to five, and then she finally picked just one. It was a struggle for her, but she was very proud once she made her decision. She kept asking me if I thought the winner would be excited, and I assured her she would be.

We had to be back on Sunday morning when they announced the winner. At crowning they asked Emily to make an impromptu speech regarding her charity. Emily did very well, and then she said "and to date I have passed out over 750 boxes, and raised more than $600,000", I died laughing. She hasn't gotten a full grasp on money yet, and it was pretty cute. I corrected her, and let everyone know it was $6000. They then announced the winner, and the little girl was SO excited. Emily presented her with the crown, a banner, an official Smile Boxes teddy. With the entries, and generous extra donations, Emily walked out with more than $1200!! She will be using that money to purchase more supplies for the Cut A Thon, and box making party on May 23rd. Emily will now have 200 boxes for the kids to make, and 100 Build a bears.

Jude went with Emily, and I on Sunday, and he was so wonderful for me. He would smile, and laugh, and although he battled some large seizures, he still had a good time. After crowning we ventured out to meet a lady who wanted to buy some Scentsy. Then we went by the bank, and on to the mall. Emily needed a dress, and the girl would have shopped all day if I had not made her leave. While at the mall I noticed more people staring at Jude than usual. He was battling the continued seizures, but one person really got to me. She was probably in her 60's, and she started staring at Jude from the moment she saw him, and then continued to turn her head, and stare at him as we passed by. I turned to look, and she actually ran into someone else because she was still looking, and walking. I just chose to believe that she was admiring his new haircut.
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Jude had been dreaming a lot lately, which is something I have wondered about in the past. Does Jude dream with his neurological issues? The answer is yes! On Saturday night he was sucking a bottle in his dream, and last night he was cracking up. He was laughing so hard that he woke Mike, and I up. So then Mike had to make "kissy" noises so Jude would laugh even harder.

Wednesday we have our fair hearing to try to get Jude's nurse back. We now have a letter from Jude's neurologist that states he "feels it is in the patients best interest, and medically necessary to have a nurse in his home for his medical needs". He goes on to explain Jude's diagnosis, conditions, and medical needs. Therefore, if they still deny it, and anything happens to Jude in home, guess who is calling my attorney uncle?? THIS GIRL RIGHT HERE! I just want Jude to have the best chance at this life, and having his nurse made all the difference in the world. Some people do not like having nurses in home, but for 20 hours a week Jude enjoyed his, and so did Mike. I think she made them both feel......safe.

I have so much to do this weekend with our DC trip fast approaching on Saturday. I am taking some time off from doing anything. I will post on facebook regarding Smile Boxes, but I am not running any errands after work. I am tired, and need to catch my breath.

Sunday, April 25, 2010

Rushing about.

I am sorry I have not updated this weekend. We have been running 90 miles per hour since I got off work Friday night. I have lots to update, with loads of pictures, and I will be listing them all tomorrow.

I hope everyone had a wonderful, and blessed weekend. Jude's seizures are still rearing their ugly head, and we should have the blood results by tomorrow. It seems I will have a lot to talk about in tomorrow's blog.

Friday, April 23, 2010

Seizures galore

Last night was a tough night. I was counting Jude's seizures, and when I was at a total count of 16 I decided to inform Mike. We came to the conclusion Jude had about 25 seizures last night in total, and maybe more throughout the day. I am blaming the Felbatol, but Mike thinks there is something else going on. Mike took Jude in the get his blood counts today, and we are waiting to hear the results. I am not sure they will be back today, but I did put an email into the doctor. I love the fact I can email my doctors office from work, and always receive a prompt response. Also, that same doctor has said they will be giving us a letter to support Jude's nurse. The fair hearing is 4/28, so say a prayer!

So I mentioned that on May 23rd there will be a fundraiser for Emily's Smile Boxes. Well I put out an event invitation to everyone I possibly knew on Facebook. To date I only have 12 people planning on attending, which is so sad. I know that there will be tons of people from Emily's school, but I was a little disappointed I didn't get a better result with people I know. Granted the event invitation went out to a few people that could never possible attend, but there are some that could. I reminded myself that people already have plans, work, and have other issues going on. I just hope that we have a great turn out that day, and I so appreciate those attending. The salon is offering hair cuts and more to anyone that wants to make an appointment, and all proceeds go to Emily's boxes. Outside we will be putting together 100 boxes, and every child that shows up will get to help decorate the boxes. In addition we will be selling Emily's Smile Boxes helper shirts, cokes, hot dogs, cotton candy, and more. My aunt may even come in from Springfield, and bring their amazing Askinosie Chocolate to sell, www.askinosie.com.

I will keep everyone updated on Jude's blood results. Mike said Jude has had several large seizures again today. I was telling my grandmother about them yesterday, and mentioned we are used to them. She told me we shouldn't be "used" to them, but you just become accustomed to handling the situation you are in.

Thursday, April 22, 2010

Awards and banquets, and then to DC!

Last night was the start of the Prudential Spirit of the Community award festivities. We had an awards banquet in Dallas at the Symphony Meyerson, and then this morning we had an awards banquet at Emily's School. I am sure everyone knows, but if you are just tuning into my blog, Emily was named the Middle Youth state winner of Texas for Prudential's award based on her Smile Boxes charity. We are very proud. It is a huge honor for her.

So Mike met me at work, and picked me up about 4pm, and we headed through Dallas traffic to get to the banquet. We were greeted by nice people with Prudential, and were given a wonderful dinner. Out of a 1000 applicants in Texas there were 74 finalists, and a large amount of them were there last night. The top finalists, and two winners gave speeches. While the other kids were speaking Emily kept nudging me telling me how impressive their work was. They spoke eloquently, and properly delivered exactly what their charity was about. I could tell Emily was beginning to shift in her seat, and she mentioned to me how she thought people would be disappointed in her charity. I shook my head, and assured her she is doing a wonderful job. So it was Emily's turn, and she gathered her little speech we had put together. She had mentioned what she wanted to say, and I had typed it all out for her. She then timidly walked up to the podium, and began to speak....
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"Hi everyone, I am Emily Lites, and I am 11. I know I am not suppose to read a speech, but I get flustered in front of crowds, so just know it's from the heart. I want to thank Prudential for giving me such a wonderful award. I cannot wait to get to Washington DC, and learn about our country. I promise I will represent the great state of Texas with pride! I started Emily's Smile Boxes after my baby brother Jude suffered a stroke before her was born. We actually thought everything was okay, but at three months he had a seizure. Since that time Jude can suffer as many as 70 seizures a day without medication, and as many as 15 with medication. This causes major issues, and Jude has spent lots of time in the hospital. I sit by Jude's side when he is sick but I have found hospital to be boring, and sad. So I decided to make Emily's Smile Boxes to cheer up the other patients, and their siblings. I thought my idea was pretty simple, and I was surprised to receive rewards for doing something I love so much. I told my mom I never do this for an award, but just to make other kids happy. To date I have passed out more than 750 boxes, and I like to think that made 750 people really happy!"

Then she slowly left the stage to a round of applause, and we looked around......we looked, and everyone had tears in their eyes. I patted Em on the back, and she just smiled.
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Even Jude had a name tag
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The other winner for the state of Texas is Ben Slater, who is an amazing young man. I was drawn to his speech, and I couldn't imagine the pain he has been through. He has a disease that causes his fingers to lock into place, and has had several surgeries at Scottish Rite. He said he was so touched when he heard that Scottish Rite does their surgeries for free, and asked his mother how this could happen. She explained to him that generous people make donations to the hospital so they can provide quality, and free healthcare. So he created "Kids Swing", which is an annual golf tournament held to benefit the hospital. Children aged 7 - 18 of all skill levels play in the tournament, and to date he has raised more than $800,000 for the hospital. That's amazing!!!
Ben, and Emily
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The children that flowed in a steady stream to the podium filled me with pride for America's youth. I wish that the news channels had been there to cover such a positive story. I think everyone should hear what these kids are doing because there are some amazing stories.

So interject funny story at this point. We were so tired after the banquet that we drove all the way home from Dallas, and FORGOT my car was at work. So Mike said he would take me to work since Emily had the early morning awards at her school, although my make up was in said abandoned car. This means I used my 11 year old kids make up this morning, to try and make myself half way presentable. Yes, this means Bonnie Bell make up, etc. You can stop laughing now.

Emily had to be at her school by 7:50 for the awards presentation. A very nice agent with Prudential, Terry Dunn came to give Emily her award. He made a very nice speech about their company, and Emily. He then presented Emily with her silver medallion, which is gorgeous! Then all of her teachers came up to the podium, and they all presented her with flowers. She got lots of hugs, and everyone had tears again. I even choked up this time, and so did Mike. We were all very proud.
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Image and video hosting by TinyPic

In honor of the day Em's friend Maddie wore her Smile Boxes shirt. Emily wanted her to helpers in the picture with her so she could acknowledge all the hard work they do for Emily's Smile Boxes.
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Image and video hosting by TinyPic

The only downfall of this event was that Jude had about five seizures during the banquet, and what seemed to be a constant seizure at her event his morning. I have put a call into Dr Riela. I told Mike last night I would like to have Jude's medication levels in his blood checked prior to flying to DC next weekend. I would also like to hear what the doctor says about Jude's seizures picking up so much. I am a little worried about flying with Jude in my lap, and I am praying we don't hit any turbulence. A few prayers for our safety on the plane would be wonderful please! Thanks so much.

Tuesday, April 20, 2010

A bucket load of tears

So the medically dependent children's program came out today for our annual reevaluation of Jude. She went over all of Jude's visits, therapy evaluations, and new diagnosises within the past year. She had a long list compared to last year, and Mike said they were very nice. He explained the nursing situation to them, and they seemed sad for us. She pointed out that they are basing the denial for skilled nursing on his "needs", and even though he "needs" constant care, it may not be a "need" for nursing care. So then I received a call from the state that there is another program for just personal care, and everyone denied for nursing goes through them. Although, right after she called she told me that she wasn't sure Jude would qualify for many personal care hours because of his age. That's about the time I told her I was physically, and emotionally beat down, and I couldn't take anymore. I know the lady felt terrible because she became really honest. She said she thinks the states program is like swiss cheese, and has a lot of holes in it. She said that in her opinion there is no doubt Jude needs a nurse due to his seizures, medication, and more. She was sweet.

Today I was sent a link from my friend Fleck, and although it's so sad, I felt compelled to watch it. It's the story of a family in our area that were told, just like us, at their gender sonogram that there baby had issues. Unfortunately, the issues this baby had were terminal problems. I gasped when the mom said that she would hesitate when people asked her about a baby shower, the nursery, etc. I understood that portion of her tape, but the rest I couldn't bear to imagine. Throughout their ordeal this family showed the up most strength, and I admire them for being able to share their journey. No one plans on having a pregnancy with issues, but who we become after those issues are given to us determines the person we will be in the future. If we crumble and give up, then our future will in turn crumble. I too like this mother am thankful to have this experience with Jude because he has taught me so much. I am so lucky he is still with me, and I hope we will have a long life together. My heart goes out to this family, and I congratulate them on their new healthy little girl. I know she can never replace your son, but I also know they have a new appreciation on life itself. So without delay here is the link, and if you decide to watch it, grab a box of tissues. http://www.dallasnews.com/s/dws/photography/2009/thomas2/

Some people say they don't want to see sad video's, but in my opinion we should lend ourselves to opening our hearts to understanding their pain. Only through their pain can we appreciate our lives, and the lives of others. We should be grateful to them for opening their emotions to us, and gracing us with knowing their son.



I apologize for my poorly written blog earlier, I was at work, please accept my apologies.

Sunday, April 18, 2010

The weekend update

If I die, and it seems I didn't qualify to go to heaven, and must be banned to hell, then I can tell you what it will be like. There will be a 4 lane highway lined with alternating small and large harsh Orange cones. There will also be policemen with loud whistles directing me in the opposite direction of where I want to go. There will be a large black sign with blinking yellow verbage that says, "Nascar traffic, highway has all been directed one way". THAT'S right, when Nascar comes to town our highway turns into one way, all westbound. I had to work yesterday, I had to be at my Scentsy party at 2pm, at about 2:20 I considered throwing a HUGE fit in the middle of 114 right smack in the front of Texas Motor Speedway. Why? Because it had taken me almost an hour just to get 5 minutes down the road, only to be redirected about ten miles out of the way. In my opinion the traffic situation is compounded by poor management by the city. Our neighborhood is the only area that has only one way in, and one way out, so we are affected the worst. I believe neighborhood stickers should be issues to each resident, so the police know to allow us into our community. Right now our cross road is shut down during the races, so we are diverted and not allowed into the neighborhood, it's so frustrating!!!!!! Plus, all we get is a letter telling us to be patient, well buddy the patience is GONE!

So yesterday was overall a good day with Jude. He did vomit early in the day when Mike tried to give him his medication, but other than that he did well. He had several large seizures, but that didn't seem to stop him from trying to communicate. At one point Emily was watching "America's Funniest Home Video's", while laying next to Jude on the floor. She was laughing so hard, and Jude started laughing with her. He recognized that she was laughing louder, and harder than normal, so he joined in. He was also making audible noises for almost an hour, while trying to lift up his head. I really hope that someday Jude can keep his head up without support.

While at my Scentsy party yesterday I carried on a conversation with a wonderful lady named Tammy. She has been taking in the Smile Boxes for HEB hospital because she works there. She asked me about Jude, and after some further conversation she revealed she has two boys with Autism. One of her children is high functioning, but the other has Aspergers, and is low functioning. There was a little girl there at the party, and we talked about how at times it's hard to see other children functioning so well. This little girl was younger than Jude, and was holding a rattle, feeding herself, sitting up, etc. I think that I am so used to who Jude is that I forget who he could be, but that's alright. It's not that we want to see these children not function, it's just a slap in the face bringing us back to reality.

The Celebrity Gala went wonderful, and Emily was a charmer. After all was said and done raised a good amount of tips to benefit the Child Abuse Prevention Center, in DFW. She told jokes, did tricks, sang with Miss Texas, and more. She even got up in front of the entire ballroom and offered to do a line dance for $100 per table. I was amazed! I was told many times what a wonderful daughter I have, how bright she is, and how poised she is. I was very proud of her! She also made some great contacts including Reality Steve. He was such a delight to meet, and you might check out his blog on Reality TV: www.realitysteve.com. Here is a picture of Emily with Daryl Johnston. Everyone who reads my blog knows I am a huge Cowboys fan, so this was a great treat for us.
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Emily was most fascinated with Miss Texas, and they chatted a bit. She told us about the Lone Star Princess program available through the Miss Texas organization. This where a young girl between the ages of 6-12 accompanies one of the contestants for the week of competition. I think I may be to late to sign her up, but it would be a great experience for her. Let me also add that I too had dressed up for the big gala, and left the house feeling pretty. When I got home I looked through some of the pictures I was in , and was floored at how big I looked in the dress I bought, and it was ONLY an 8!! I showed them to Emily and she said, "Wow mom, yeah that's really bad don't wear that again". Sigh, thanks for the honestly Em.

Saturday, April 17, 2010

a loss, a life, and a gala

Today Emily will be participating in a Gala in Dallas that will benefit the DFW Child abuse prevention center. She is one of the waiters that will be attending one of the tables. Each waiter has a goal to collect $1000 in tips for the charity, but Emily is shooting for $2000. She is coming up with idea's on how to get tips, and one suggestion she has was to tell jokes. Although, my daughter has many talents, joke telling is not one of them. For instance, she said "Mom why didn't the skeleton go to the ball........because he had no one to go with". I sat there, turned my head in question, and said "Um do you mean NOBODY to go with" Em said "oh yeah thats it".

Anyway, Jude seems to be doing well, but we have noticed some bruising on his legs. I also thought I caught a glimpse of a yellowish color in his eyes, but that could just be the lighting. We try not to over stress about possible side effects of the medication, but we do have to be aware there could be. Liver failure if the worst side effect because there is no "fixing" that issue. SO therefore, we are watching his little bruises closely. He has been using his legs a lot more, with his "happy legs", so I am hoping the bruises are just from kicking his legs about. Mike is also making Jude a corner chair which will help with Jude's back tone when he is eating. Jude is staying with daddy tonight while Em, and I go help the charity.

So yesterday we laid my friend Kelly's dad to rest. He had a long fight since he had the accident on New Years Eve. I will no longer let Emily be around anyone who is using any type of fireworks. Kel's dads firework malfunctioned, and shot him in the face. He put up a bold fight, but his body just couldn't take anymore. The burial was in the national cemetery in Dallas, and it was a full military burial. It was an amazing service, and very touching. After the funeral I drove from Dallas to Springtown to see our friends baby that was born the same day Kels dad died. It seems any time someone dies, I know someone who is giving birth. It seems like the natural circle of life to me, and it's amazing how things work out. Maybe the one passing away touches the life of the one being born. Anyway, her new son was so beautiful, and I enjoyed the visit. I then hopped in the car, and started the long drive back home, and through NASCAR traffic. Without question the LARGE glass of wine I had when I got home was needed.

Also, my good friend Sarah was in a car wreck yesterday that could have had deadly consequences. I am very thankful everyone was okay!!

Here is Emilys recent interview if you would like to listen. She did this without Mike, and I there to support her so I am so proud of her!! http://67.72.16.166/krld/2332274.mp3


Thursday, April 15, 2010

A few lessons for the soul

Here is a video of Jude last night, and how smiley he was with me. Again, please excuse my high pitched mama voice. He made my heart happy again.

video

On top of that I received this yesterday, and I just love it. It reminded me that as frustrated as I get with others for not realizing how great their lives are, that mine is pretty great too!!!

I AM THE CHILD

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much -- whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it. What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk. I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk. I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.I am the disabled child.
I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

- Author Unknown -

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Wednesday, April 14, 2010

A little down time.

After work I went by my cousins to just chill out for an hour. We chatted awhile, and then my friend Fleck showed up. I so enjoyed the visit, but I wish it could have lasted longer. Mike had taken care of Jude all day, so it was only fair that I hurry home to take over. Although, the short time I was there helped me so much.

When I got home it turned out that Jude had fallen asleep for the first time that day, and was so cute laying in Jude's arms. I smiled to myself, looked down, and I realized what is really important. I may get stressed, I may feel a bit trapped in life in general, but goodness knows my children make it all worthwhile. When Jude woke up he had big belly giggles for me associated with a seizure, but well that's just Jude. I hugged him tight, and told him I loved him. I will tell Em the same when she gets home from church.

It's the little things.

Mary Poppins has left the building

I am in a funk. I hate to admit it, but I am. Today Mike was talking about his favorite vacation destination, Hawaii. I replied, "We won't ever go on a vacation alone again". I think this took Mike by surprise. He said "Quit being so negative", and I replied, "I am always the positive one, always! I try to find the good in every situation, but I cannot be your Snow White all the time". He then explained he needs me to be my normal Snow White, because it keeps him sane. Yeah well buddy I am a little burnt this week. My job is so busy, and since Sarah left I have more to do. Jenn is amazing, and fits right in, but it's still taxing sometimes. On top of that I am working on a lot of other stuff concerning the kids lives, and well being. Emily has stuff going on, and so does Jude.

Anyway. moving on. Last night we loaded the kids up, and went to look for some herbs, and plants for our garden. Thankfully, my loving husband set up the dog fence to where the terrorists can no longer access my "sanctuary" in the backyard. Last year we planted flowers, and beautiful plants only to have those terrors ruin them all. Yes, I still battle with Mike's dogs, you have to know them personally to understand. I may take Bigsby outside, put him on the side they no longer have access to, and have him say "nanana boo boo!". I told Mike I really wanted to get a swing for Jude to go on our porch so he can sit outside with us.

I am at a loss on what to do regarding Jude's head control. I hate to admit he may never have any, but we are not seeing any large improvements. He has therapy twice a week, and we work with him as much as we can at home. I am still very frustrated with our new Britax car seat they gave us for his special needs, because it just doesn't help with his head control. We found the little "sleeper" pillow that I posted yesterday, but it starts slipping. When it slips Jude winds up face first in the pillow, which isn't good at all. I am wondering if the aquatic therapy will help Jude with his muscle tone, and it's something we intend on exploring. They do offer swim therapy at the therapy center Jude visits.

Jude has speech, and PT today, but sometimes it seems he is getting the same lessons without making any progress. I hope we get to see more, but I do think back to what the original neurologist told us. "It doesn't take much brain to be a baby". The words are harsh, and we can harp on the way he delivered them all day, but in some circumstances these doctors are right. It doesn't mean I love Jude any less than I did before, it just means I have began to think back to the circumstances revolving around his initial diagnosis. I actually revisited the entire scenario this morning with Jenn. My perinatologist office called regarding the bill I have been paying on, and she asked what that type of doctor does. I explained they were the ones that told me there might be something wrong with Jude's brain. She was a bit confused, and thought it was my OB. I then explained the situation. I was 35, and even though my OB'S sonograms showed a perfectly healthy baby she always sent her moms 35 or above to the perinatologist for their gender sonogram, and to check the baby. So we were all excited to go find out what we were having. They scanned Jude carefully, and they told us he was a boy, and in the next sentence they said his ventricles in his brain seemed slightly enlarged. So from there we did an in utero mri, tracked his progress, etc etc, until he was born. When he was born we were told he was perfect, but at three months we found out otherwise. In other words, I can see how some mothers don't know there is anything wrong with their child until they are 6 months or older. Without that perinatologist visit I would have had any inkling there "could" be something wrong until Jude was 3 month. Even at three months he was simply opening and closing his mouth, I am not sure i would have caught that if it had been my first pregnancy. So we were at Cook's and once Jude's MRI was done we heard the news that Jude had several things wrong with his brain. We haven't done another MRI, and I am not sure we ever need to. Its just a picture, and that picture will never tell us what all Jude will accomplish. We do EEG's several times a year, and one test that was slightly positive was his latest eeg. I mentioned that it showed all the seizure activity is coming from the right side of Jude's brain vs the entire brain. This means that at some point in the future they may discuss removing the Corpus Collasum to separate Jude's two sides. This would keep the seizure from spreading to the other side of his brain. Another test we need to follow up on is the bloodwork through the hematologist. We got the first round of Jude's blood tested, but we had two more visits before we tested everything. They were looking to see if there was a particular reason Jude suffered a stroke.

Sometimes I feel like all the therapy is taxing, but we hope it will yield results, and help Jude. I think the BIGGEST help he could get is his loving nurse back. She brings jude out of himself during the day when I am away. She helps keep Mike sane, and helps Jude feel secure. I sometimes wish I could be there with Jude, actually I wish that a lot. Although, Mike is more stern with Jude, and that is needed to push him to do more. I end up caving when Jude cries, and I just want to hold him, but Mike will push him to do more.

Anyway, I will be over my funk soon, it's just one of those weeks. I am looking forward to going to DC for Em's award in two weeks. Although, I HATE the anxiety leading up to getting on a plane, which is crazy because they are safer than cars. I cannot wait to see the sites, it will be amazing.


Monday, April 12, 2010

update

So as I mentioned it was a really long day! I came home, and my house was in chaos, but I think my hubby got the idea that I was done with working today. I professed i wasn't cooking dinner, but I later retracted that statement, and made something quick. About an hour ago I finally sat down, and poured a glass of wine. I am on a diet, but I gave in tonight.

So one thing I haven't mentioned is that I have seen an increase in the nature of Jude's seizures. Yesterday I counted 15 seizures, which is nothing we cannot handle, but they are mimicking the old seizures. He is squeezing his body together, clapping his hands tight, rolling his head back, and either making a unusual laugh, or making some type of audible noise. After he completes this motion he is spending about ten minutes opening and closing his mouth, this indicates strong seizures in Jude. Jude's repetitive opening and closing of his mouth led me to initially think he was having seizures, and his original diagnosis at three months. I am unsure as to why he is reverting back to his old seizures, but making some progress physically? Is this an issue with the medication? So confusing.

SO while out this weekend we noticed that Jude's issues are so much more apparent in public now. We don't have a problem with this, it's just more noticeable. We feel so much more comfortable in our own environment with him because here he is just Jude. No one is staring at him, no one is pointing, no one is asking us what happened. I know I shouldn't feel this way, but again it's a true feeling, and I stated I would be truthful on this blog. I just like holding him at home, and relishing in his own beautiful traits.

I also stated that I sent Jude's fair hearing packet off to the state today, but when I got home there was another packet waiting on us. It seems it was Jude's pediatrician that signed off on the fact he doesn't need more help, yet his therapists, nurse, and neuro seem to think otherwise. I was rather shocked because we have had great results with this doctor. Sometimes I think he is to passive regarding medical situations (ie, when Jude had CDIF, and pneumonia and he sent us home). In some circumstances I think this is great because I believe antibiotics are over prescribed, but this time I don't agree. It also surprises me that someone in the medical industry would make this assumption, when they have to know how difficult things are. I just remind myself that there are many other children with more pressing needs.


Calgon took us away

This day is fired! It's been so busy it's crazy.

Quickly, I would like to share some pictures of Jude from this weekend. Here is what we are using to keep Jude's head up in the car.
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This is Jude after he got out of his bath yesterday. I love babies in white shirts, and overalls.
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I did complete the packet for the fair hearing on Jude's nurse, and I hope it helps. Every therapist Jude has is pushing for us to get the nurse back, and one suggested sending a picture with the packet, so I followed her advice.

Saturday night went very well, and my aunt did a great job of watching Jude. She said he slept in the bed right next to her all night long. Mike, and I had a great night away. We stayed at the Marriott, and had dinner. I had purchased a "romance package" which included a nice dinner at the hotel's steak house. Well I found out said restaurant was closed, and all that was available was the bar, and hot wings. . I am sure that you can understand I was rather upset. The manager was very nice, and got us the dinner we wanted, and even comp'd it. We also got upgraded to a suite, that was just beautiful. It was a GREAT treat!! We so enjoyed our time away together.

We were anxious to get back to Jude the next morning, and we also got Em back from her dad. They had been camping, and she was exhausted.

Jude threw up again on Friday, and it was horrible, but there hasn't been any throw up since. We got approved for his suction unit so this will help clean our all the vomit from his nose, mouth, etc. It will also help with the build up of saliva Jude has. I really never thought I would have to think about a suction unit, but I am glad it's available.

Sorry it's so short, I will try to post more about the weekend later tonight.

Friday, April 9, 2010

PROGRESS

So Mike is VERY proud of himself, and rightfully so. He made Jude a scooter board for therapy, and to help him move around.


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They used it today in therapy, and Jude was lifting his head up a lot. Also, they put a lighted keyboard in front of him, and Jude kept hitting the buttons. The therapist said it's as if Jude has suddenly broken out of his shell, and is so alert. We have noticed that he has been more alert too. He is babbling, smiling, trying to roll, and my favorite thing his happy legs! Happy legs are when Jude gets so excited to see me, that his legs just go crazy. It reminds me of what Emily did about 4 months old, but regardless of age I am just thrilled. It's almost like he is discovering he has legs, and arms. He is reaching for his bottle again, so I bought him a cup with handles today.

Jude still has a long way to go, but progress is GREAT! Now if I can just get Charlotte back. I think the constant attention, and stimulation would be a wonderful thing for Jude.


PS. Volcano baby erupted last night, and then laughed while he, and I took a bath. I had vomit everywhere, ugh! At least he laughed about it, I didn't!

Thursday, April 8, 2010

Videos

I think these video's will do the talking for me today. They are of Jude trying to roll, and Jude seeing me when I got home from work.

video

video

Wednesday, April 7, 2010

rolling

Well I got some great recordings of Jude last night, and I left my camera at home, sigh! I was really excited about the recordings too, because Jude was really "talking". In addition to that he was trying to roll over, and he seemed to understand me when I would tell him to roll. He would stir his little arm like he was getting his motor ready, and then he would try to flip over. He was never succesful, but he definatley tried.

So maybe the Felbatol is working? I swear we go back in forth everyday with wondering if it's doing any good, causing the throwing up, etc. Anyway, I will post the video's tomorrow.

We got our airline tickets, itinerary, and everything else for Emily's Washington DC trip. We leave May 1st, and we are all very excited. I HATE TO FLY, but other than that it looks like a great trip!

Tuesday, April 6, 2010

Volcano baby

Jude, Bigsby (our dog), and I went on a walk when I got home yesterday. I originally put Bigs on a leash, but he really hates leashes, he also hates to walk. He ended up going for a "ride", while I walked.

He enjoyed the walk, and so did Jude, and Jude ended up putting his hand on Bigs while he was riding.

Today I start working out again on lunch, and I am looking forward to it. I am ready to have more energy, and get myself back again. It's not exactly what I want to do with my lunch hour, but it's the perfect time to go. It seems when I get home at night I have little time for anything, even my walk. So I will incorporate my working out into my work day.

Jude threw up again last night, and it's so frustrating. I like Candace's idea of having a trash can in each room, but with Jude it's more of a need for towels since he has no head control. Last night Jude required a bath, I required a bath, and we had to suction his nose. I am hoping this issue will resolve the most used to the medication her gets. Although, he threw up last night BEFORE I had given him the felbatol, which makes me think this may be an issue with boost. Mike says he mixes Pediasure, and Boost, but I believe Jude got more Boost yesterday.

Good news is the little car sleep pillow that straps on the front of the car seat worked to help keep Jude's head up. Also, Mike saw the GI specialist yesterday who proclaimed that Jude looks GREAT! He said that as of right now he doesn't think the G button is necessary unless we want to go that route for medications, etc. He explained that a nutritionist is going to tell us to get Jude one, but he believes that if we want to continue to wait we can. He stated that Jude is in the 25th percentile on weight, and 95th on height, so he is going to be thin. So therefore, we are going to wait a bit. I don't think this will help us retain Charlotte, but we will see. Insurance did approve all of Jude's suction equipment, which will help with the throw up, saliva choking issues, etc.

So my aunt is watching Jude this Saturday so Mike, and I can get away for a night. We are going overnight on a mini vacay for Mike's birthday. We need the break, but I am worried about leaving my aunt with a puking baby! Hopefully, this won't happen. I am trying to work out in my mind how we can time the medications so we can give them before we leave for the night. I also think we will venture with JUST Pediasure that day. We love Jude, and Em with all our hearts, but it will be nice to have a night with uninterrupted sleep, and to just relax. After Jude threw up last night he cried for ... again ........45 minutes, just screaming. Mike, and I laid in the bed holding him just staring at the ceiling, wishing for Calgon! So again, it will be nice to get away, but I know we will call her fifty times. I trust her with him 100%, and she just dotes on him, but let's home for a puke free night.

Monday, April 5, 2010

The weekend

Friday I pulled into my driveway from work, and I found Jude, and Mike waiting on me. They were enjoying the wind, and waiting to show me that Jude got his new special needs car seat.

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Jude likes his new seat, but his head still doesn't stay up. We really cannot use the horse collar, because of the big pieces surrounding his head. We did find a little cushion that goes under the chin, and we are going to try that.

Saturday I spent the better part of the day cleaning out my daughters room, and rearranging it. My cousin gave us a great dresser, and a desk with a piece above it for storage, and decorative items. Emily was not happy about giving up her white daybed, but we got her a new mattress and that made her happy. I pulled her old twin sleigh bed out of the attic (well Mike did), but I assembled it, and I like it in there. It's a mixture of white, and nude woods, but I think it works. I still have a lot to finish, and she does too. My daughter is a great kid, EXCEPT when it comes to cleaning, and organizing!!! She is a mess! Emily had made Jude a little pallet to lay on while we were fixing up her room, and he seemed to enjoy himself. He was a very good baby while we were working.
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Saturday night the Easter Bunny made up the kids baskets
Image and video hosting by TinyPic. Mike seemed a bit upset that Jude didn't have candy, and only newborn type toys. I assured him he would like his hand rattle, and he did. We then ventured to my dads house, who has the perfect property for an egg hunt. Emily participated, and seemed to really enjoy herself. Everyone made comments that this was probably Emily's last year of wanting to hunt eggs, it made me a little sad. She looked so grown up this weekend, and is starting to take time doing her hair, lip gloss, etc. Jude hunted some great Elmo eggs, and then gave his sissy his candy.
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Nice finger dad!
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Our Easter bunny, he hung out in the yard right by us. My dad talks tot he bunnies in his yard, so they all sit around us without issue.
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While at my dads my Aunt, and my friend Fleck both texted me that I should watch Extreme Home Makeover last night. I knew I was in for a good episode if everyone was texting me, and indeed we were. It was about a large family in Texas who adopted several children, including to special needs kids, one of which reminded us of Jude. We watched how disabled he was, and admired how the parents took on the responsibility of raising him despite his issues. We also loved the fact she said "Every child has a purpose in this world even if his is only to share his laughs, and giggles". Amen!

After that I gave Jude his medication including his increase dose of Felbatol. About thirty minutes later I heard Jude's stomach gurgle, and then vomit spewed everywhere. When I heard the gurgle I yelled for Mike, who came running with a towel just in time. Jude then screamed, and puked for forty five minutes. I tried everything I could to get him to calm down, but there was nothing that could be done. FINALLY, he began to calm down. Soon he was smiles again, but now I was worried about him. Mike took him upstairs so I could get a little sleep, but when they came back I kept waking up to check on Jude. I was exhausted this morning, but so was little Juders.

Today Mike has an appointment with the GI doctor to discuss the G button. Poor Mike is literally about to pull his hair out trying to get to the appointment. Jude woke up with multiple seizures, and wouldn't eat. He then had to get him arranged in the car seat, and go get gas. His gas card wouldn't work so he had to drive all the way to my office. I think the guy needs a beer, and it's only 10:40. I will update on what the GI doctor says as soon as I know more.

Thursday, April 1, 2010

Differences

I have been following the carebridge for little Margaret Romph for a long time, http://www.caringbridge.org/visit/margaretromph. I am going to reference her post on Wednesday, March 31, 2010 1:00 AM, CDT. I was reading her update, and of course I felt for little Margaret, but I felt for her parents too. I read sentences like "So I decided to get the pulse ox and check her stats and she was at 80" and "Eric and I bagged, suctioned her for about 45 minutes and could not get her oxygen up at all." After reading the entire journal entry my mind began to think back to my times when we have wondered if we should take Jude to the hospital or not. I then thought back to when I was sitting in the ER with Jude, and a lady came in frantic demanding to see a doctor immediately because her daughter had pink eye. I looked down at her child, and her eye was barely pink. Granted, this was an emergency to this particular mother, but well there are no words. I wondered how she would react if she had to bag and suction her child in the back of her car, hoping she wouldn't flatline. It's amazing the education you get on being a doctor when your child has medical needs.

I cannot imagine the strength that Sherline (Margarets mother) has had to muster to deal with all these medical issues everyday. I guess it falls back on to how I respond, "You do it because it's your child, and there is not other choice because you love them".

One of Em's first Smile Boxes mailed was to Margaret, and we still think about her!