Thursday, April 30, 2009

A new chair!

So I walked in from work yesterday, and I see a new blue baby chair on our living room floor! We have been assigned a new therapist through ECI, and she happens to be fabulous! She had told us last week she was going to bring Jude a new chair he can sit in while eating. We had been let down by the other therapist never providing what she promised, so this was a pleasant surprise! I decided I wanted to see how the chair worked, and decided to put Jude in it. He wanted no part of it.

Jude thinking, "I am not happy about this at all!"
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Jude saying, "The paci is NOT going to help.....get me out!"
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Anyway, the therapist also worked with Jude on tracking objects. We found that he likes his bright red Elmo doll, and that he is on level one of the vision issue. I am rather uneducated on what that means so I plan to review her paperwork tonight. I am encouraged about the Elmo doll, because Jude would laugh at it when we played with him.

Jude was cracking me up last night. He wanted me to hold him, and only me to hold him. Mike, and Emily were playing to "towel popping" game with each other, and just being loud in general. Every time one of them would yell Jude would get this really concerned look on his face, with a furrowed brow, and look directly at me. I reassured him that it was nothing to worry about... that his family is just crazy.

Have a good day, and support childhood stroke awareness!!!

Wednesday, April 29, 2009

Excellent childhood stroke video

Below I am listing a link to a childhood stroke video in honor of pediatric stroke awareness week. I HIGHLY recommend everyone watch it. The first little boy Brady holds his hands in ways that remind me of Jude. I am beginning to see Jude's stroke more and more in his physical appearance.

Jude had a bleeding stroke, and it caused a migration disorder. Our brain cells come from the Choroid Plexus, and according to the neurologist that's were Jude's stroke was. That is also were the clefts from the Schizencephaly are. One of the causes of Schizencephaly is a "vascular insult". In the MRI you can clearly see where Jude's vascular event was. I hope I have all this medical terminology correct, but this is my understanding of what we were told.

I hope this video helps someone out. I have been working on a little video of Jude in honor of this week, and I hope to have it up tomorrow. Please remember Jude on Saturday on national pediatric stroke awareness day, and wear blue and purple. Thank you.

*** I found the link to this video on the CHASA website. CHASA, thank you for your continous informational resources.

Monday, April 27, 2009

It's stroke awareness week!

Seeing how it is stroke awareness week I was asked to write a blog regarding our situation. I have already listed several blogs based on this information so I will keep this short. I hope my post will help educate someone reading it, and reach out to someone who needs it.

"There has been an event in your baby's brain that has caused some issues". These are the words that were spoken to us by a specialist, and will go down as the worst words I have ever heard. I remember saying, "What do you event?". The kind doctor then explained that there was old blood seen on both sides of Jude's brain which indicated a possible stroke. I come from a medically educated family so I was aware of what a stroke meant, I knew a baby could have a stroke while being born, but I never considered a stroke in utero. We were told this news when I was 19 weeks pregnant with Jude, and the months that followed were torture. The specialist had explained to us that she saw cortical thinning, and thought the outcome may be severe. We then took or information to some of the best child neurologists we could find. We were told that Jude's brain could compensate for the damage, or he could be profoundly "retarded". He could have dyslexia, or he may never function. It was a broad range of possible outcomes with nothing but a wait to see basis in front of us. We could not bring ourselves to terminate a pregnancy based on a "maybe". We watched Jude through sonograms as his tiny body grew, and his head grew, which was a great sign. Thus Jude was born in September 2008 with a loud wail, and a perfect apgar score. We were so thrilled to see our tiny bundle of joy in what seemed to be perfect health.

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At three months of age Jude was smiling, rolling, and eating well. I thought everything was going perfectly, until the dreaded day that Jude experienced a grand mal seizure. I immediately called the doctor panicked, and wondering what I needed to do. The neurologist was surprisingly calm, and set an appointment for us to come in a few days later. I tried to smooth my frayed nerves until the appointment, but I then noticed Jude was having several small rhythmic movements with his arms, and mouth each hour. When we got to sixty plus movements a day I rushed Jude to the ER. After hours of testing, and an MRI we were given the news we never wanted to hear. "The event in your baby's brain caused a neuronal migration disorder which in turn caused bilateral closed lipped Schizencephaly." Basically this means the stroke caused Jude's brain cells to go the wrong direction, and he will never be normal. We were told he might not walk, talk, and may even pass away in early childhood. We were devastated, but then we became determined! We knew that we loved Jude with all our hearts, and that with patience Jude may overcome some of what we were being told. Jude will be limited, and he does have cerebral Palsy, but only Jude can determine what Jude will do! No one can put an expiration tag on our baby, and no one can say what his future holds. With therapy, love, encouragement, and prayer he has already accomplished so much! Due to the wrong seizure medication Jude lost his smile, his roll, and his giggle. Luckily, we found the right medication and Jude has regained those abilities, and is learning more each day. We pray that he will continue to amaze us all. Our little inspiration is truly a blessing.

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Throughout this process we have learned so much about Pediatric Stroke awareness. When telling Jude's story I constantly hear, "I never knew a baby could have a stroke". Actually, 1 in 4000 babies will experience a stroke in utero, or at birth. If you think about it, that is a rather large percentage. There is rarely anything you can do if a baby suffers a stroke in utero. Most often it happens with no known cause. In fact our neurologist said "a baby has a very fragile brain, and it's fyrable, but most babies will recover from this, and you will never even know it happened". In Jude's case he just couldn't recover from the stroke. Being aware that a stroke can happen can encourage a parent to get early intervention, and therapy. As evident from our friend Kendall who's parents found out when she was 6 months that she had suffered a stroke in utero. They noticed issues, and delays, and got her the help she needed. They are amazing parents, and doing everything they can for their little girl. You can read her story here,

Ellen is another example of an amazing mom providing a great life for her son who had a stroke. You can read about her son Max here She has been an inspiration to me because she has such an amazing attitude. There are a vast amount of other moms with blogs about their children's strokes. I wish there were zero blogs about this issue, and by spreading awareness, and funding research maybe one day that's a possibility.

Also (in my opinion) I believe there is a large amount of evidence to support that the factor V Leiden issue can relate to strokes in utero. I suggest having your OB do a simple blood test to look for this issue. Some doctor's will disagree with me on that subject, but the vast amount of mothers in my networks that have this issue is evidence to me this is a widespread problem that should be addressed. Factor V is a clotting issue, and your OB can work with you if you test positive. In my opinion I think the test should be mandatory for any young woman interested in birth control or having children. If you have the factor V issue you can only take specific forms of birth control. My OB told me that 20% of the population has this issue. It's worth a simple blood test!

In addition strokes are fast becoming one of the top ten killers in children. So what can you do to help prevent a stroke in your child? Below are some great websites I have found that provide necessary information for stroke awareness. I encourage you to read them, and learn the signs and symptoms. I don't think anyone around me will have a child that suffers a stroke, but awareness is education. An educated mind is a prepared mind!

Note ~ I am NOT a doctor, and only provide this information for you based on research. Please consult your medical professional if you have any questions regarding your child.

This post is really about stroke awareness, but I would like to inform you that Jude is having small spasms again. We are hoping that a slight medication increase will stop this activity. He had several episodes through the night, and was rather grumpy from them.

Please support childhood stroke awareness....
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It's an honor!

I have a massive amount on my mind again today, and I am trying to sort through it before I post. I swear somedays I feel like my head is a jumbled Rolodex that is not sorted alphabetically. I am guessing the reason I am jumbled is because it's Monday, and Monday's as you know throw me off. I already miss Jude! I miss him I miss him, and I want to hold him! He and Emily were both so sweet this weekend, and I had the best time with them. Last night after Emily went to bed, Jude and I watched "The Tudors" together. Well I tried to watch the show, but Jude kept laughing the whole way through. I finally just paused the TV, because it was a serious show last night, and his little laughs were far more important. He spent the better part of twenty minutes smiling, and laughing at me as I sang, and tickled him. As we sat in the darkened quiet living room his laughter seemed so loud that it rang through the house. I thought to myself, "This makes it all worthwhile!". Jude was so loud, that Mike eventually joined our group, and he laughed along with Jude's squeals. I truly enjoyed this time with my little boy! I had been to a baby shower earlier in the day, and was explained to someone there Jude had suffered a stroke. Again I heard, "he did?? baby's can have strokes?". Anyone can suffer a stroke, so please keep yourself updated on the signs and symptoms.

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After we had our laughter time I then finished watching The Tudors. Mike had taken Jude upstairs to their, "man cave". I followed them after my show had ended, and I walked in wiping my eyes. I explained to Mike that Jane Seymour had died, and I was very upset about it. He just laughed at me, and suggested we finish watching the movie "Ghost Town". We had started the movie the night before, but had both gotten to tired to finish it. Mike, and I both ended up crying at the end of this movie. The movie was slow in parts, very funny in parts, and very touching in parts. I thought the movies depiction of "going into the light" was rather ingenious. They also did a great job of showing how your death could truly impact other people.

I guess it was the weekend of tears, because I was also very touched by Extreme home makeover, and an article my cousin sent me. On Extreme home makeover they followed a family that had lost their daughter to a violent crime, and their son to a drunk driver. TWO children?? Who has to endure that? Then I read the article my cousin sent that was in Texas Monthly called, "Still life". This story revolved around a mother that cared for her son after he was paralyzed from the neck down in a football accident. They discussed how everyone in town knew who they were after their tragic accident, but as time faded so did knowledge of their family. Taking care of an disabled family member doesn't fade though, and a mothers love will always last. I wondered how both of these families coped with their fate, and their loss. I wrestled with why certain families seem to be inflicted with so much tragedy. I know they have a better understanding of true loss, and what's important in life. Although, I know they would have preferred learning those lessons another way. After you receive devastating news your whole world changes in a way that many others cannot imagine. As you walk down the street you find yourself wondering if anyone can relate to the way you are feeling. You find yourself listening to the footsteps of others, and they ring in your ears....time seems to slow down. I watched and read both stories with keen interest, and felt empathy for these families. Although, it was when I got to the end of the article though that I was truly touched. Because of new techonology many of us know we may bear a child that has issues, but many other parents face the circumstance of an critically injured child. They never anticipated this happening, and had no warning. This woman did a fabulous job of summing up how you feel taking care of a disabled child. Keep in mind I have only done this job for a few months, and my son is not paralyzed (we think). She on the other hand cared for her paralyzed son for YEARS, and at the end of his life he thanked her for caring for him. She simply replied, "It was my honor".
It was my honor!!! WOW, what an incredible statement!. It will be my honor to care for Jude, no matter what his circumstances may be.

Sunday, April 26, 2009

A busy weekend

I am afraid I have been so busy this weekend that I have had little time to blog. Emily had another softball game Sat morning, and again they won. They are now 3 and 0, so we are hoping for another championship. Her games are so exciting, and everyone gets so excited when watching them. After that we had softball pictures, and after that we visited a friend Linda who was judging a pageant in Dallas. We went, and watched her daughter for awhile so she could finish judging. Her daughter, and my Emily grew up together, and had a great time hanging out together. Today we have a baby shower for my friend Shelley I had blogged about who adopted her baby.

Jude has been a little trooper all weekend, but today he is sleeping a lot. I think he is just worn out from running around. He is laying here on his mat, and has his hands out stretched over his head while he is sound asleep. I have been trying to work with Jude on sitting up this weekend, but he wants no part of it. He cries because he gets frustrated. I am hoping the therapists will begin pursuing getting him to sit. The therapist said they will be providing a chair for Jude to sit in while he eats, so that is great news.

If you remember I had posted that little Maddie Sphor had passed away, and we were raising funds for March for Babies in her honor. Yesterday, Maddie's mom attended the March for Babies event. If you have a moment I would like you to read her speech The video is even more moving! Thanks to those who helped contribute towards a worthy cause.

Friday, April 24, 2009

Boys will be boys, and Kids will be kids

So I think I mentioned that Mike attended Emily's teacher conference because I had to work. The teacher schedules two a year just to go over your child's progress. A fellow friend of ours say Mike there, and she mentioned how impressed her was that Mike knows so many of Emily's classmates. She said when Mike walked by all the little kids would yell "Hey Mikey!! Hi Mikey!!!". This was not only within Emily's class, but throughout the other classes too.

Would you like to know WHY? Because my darling husband is still a little boy himself sometimes. Below is an actual film he and Emily made together, and then set to music. Prior to shooting the movie, they got treats from the ice cream man.......they all got treats......even my hubby. Boys will be boys! Gotta love them.

Now here is the video, I hope you have a good laugh! Click on the link, I couldn't get it to embed today.

Thursday, April 23, 2009

Making lemonade

I learned something tonight which led me to be humbled. While checking the updates on facebook I ran across new pictures, of a very blessed new family. I learned that adopting a baby, brings as much joy as giving birth to a baby. It's's evident from my friend Shelley's pictures, and I am so happy for her. I have so much admiration for her for taking on a baby with questionable circumstances, and loving her with her entire being. Isn't that what we all natural mothers do? We have a baby, and we love every part of their tiny body with everything our heart can offer. So I see her tiny new joy laying in her stylish leopard blanket in her moms arms, and I know that baby will be very very loved! Good for you Shelley! (picture me winking at you!) I never really grasped the entire adoption process, because honestly..... I have not faced that path in life. Again, it's yet something else I never investigated,............because I never felt I needed to. I was again selfish. As moms giving birth to babies we never think of anything going wrong, we take for granted all will be okay. As an adoptive mom you tackle that hurdle head on, knowing something could go wrong, but facing that challenge head on with love. Because of that I know Shelley that God has blessed you with a perfect Angel!

I digress, it seems we turn a blind eye when we cannot relate to a circumstance someone is going through. Not on purpose, but because our brain doesn't recognize that route, and therefore we don't travel it. We feel sorry for someone, and offer our help, but rarely do we grasp truly grasp their situation. For example, I was so excited to try to have a baby in 1997. I read all the books, I took pre-natals, I dressed the part, and I shopped for the soon to be needed maternity clothes. I was shocked when things didn't go my way, and month after month I found a negative sign on pregnancy tests. My heart sank deeper, and deeper with each test I took, and each time I received that time of the month. It took me 7 full months to get pregnant with Emily. To some people that seems like a lifetime, to others that have been through trying to get pregnant for years, it seems only a milisecond. It took my friend Sarah almost 12 months (maybe more) to get pregnant with her current child. I watched her stress even when she didn't speak of her worries. I have a tendency to read her, and I know when she is suffering. I wished nothing more than for her to get pregnant with a happy, and healthy child. With Jude I was pregnant in the blink of an eye. I didn't have time to react, but immediately got on pre-natals, and took the best care of myself as I could.

Yes, sometimes life presents us with circumstances we didn't ask for. Sometimes we worry so much about how we look, what we have, and more to only to realize those things don't mean much. When I was 6 weeks pregnant with Jude I went to the doctor, and had an internal sonogram. They told me they could not see a "fetus", and that I needed to come back at 8 weeks to see if there was a baby, or if he was ectopic. It was a very cold conversation, and the doctor seemed to have little empathy. I left thinking, "This cannot happen to ME!" I thought, "I have a good job, a nice family, I am". Then it's like I heard a higher being say "Of course it's you, and why can't it happen??? What makes YOU more special than someone else". Exactly!!! I sometimes wonder if I didn't get so stressed out over the doctor not being able to see Jude that I caused the issues Jude has. I guess when life hands us lemons we question what we did to deserve those lemons, because we figure.... there had to be someting. We want to make lemonade, but sometimes the sugar is missing. It's up to you to find the happy balance between your lemons, your water, and your sugar. Yep, it's up to you to find your perfect balance!

It seems Shelley found her happy balance. I wish you the best girl, I really do! Thanks for teaching me a lesson tonight.... I think I needed it! Sometimes we get lost in our own stories, and we forget to watch how inspirational others are. I have every confidence that our mothers are sitting together talking about our lives. Knowing my mom she insisted they sit on a nice porch swing............sipping a glass of lemonade made with the recipe you created. So just to let you know Shelley...... I find you, and your complete story..... very inspirational!!

Meet mom Shelley, and her new baby Lauren:

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A whole new world

"I am so glad you posted this video"

"I never knew a baby could have seizures like that"

"I was moved to tears, but I am so glad I watched the seizure video"

"Poor baby, I never understood how difficult his seizures were"

"Thank you for sharing the video, and the insight"

These are some of the comments from emails I have received since I posted my blog yesterday. I struggled, and worried over posting that video of Jude's seizure. I wanted to help others, and I wanted others to understand what Jude is overcoming. Although I wondered if it would be like placing Jude on display, and so it has taken me 5 months to finally post that video. I am glad I did though, and I hope someone can learn from it, and find hope in the laughing video. I would like to thank the individuals that took the time to email me, or comment because you eased my worries. In addition the outpouring of support regarding Emily's charity has been amazing! We now have a website in the works, approval from the hospital, and even others that want to run the charity in their cities!

Yesterday while posting the video's I too began to learn from watching them. I finally understood what the doctor meant when he told us the seizures would not allow Jude to develop. I could finally see how detrimental the seizure activity was to Jude's brain. Jude never smiled, he never giggled, and he never tried to roll. In fact, Jude lost all his abilities when he was enduring these monster seizures. It was as if Jude were being electrocuted every couple of hours from these long lasting seizures. I can now see how important it was that we found a medication to keep the issue at bay. We now have to have scheduled blood tests to make sure Jude's valporic acid levels are not to high. I also still need to get my testing done to find out what my underlying platelet disorder is, so we can test Jude.

The therapists came back to the house yesterday to administer Jude's PT, and they have increased his therapy sessions. He will be seen twice a week now, and we will soon be adding vision therapy into the mix. That means he will receive three to four therapy sessions a week, and I could not be happier about this!

I have been very busy at work today, but I did just take some time for lunch. I ran up the street to grab some sushi from the buffet. I know sushi on a buffet sounds disgusting, but it's actually freshly prepared, very yummy, and they charge per it's cheap! Anyway, while driving I noticed three moms walking around with their young babies on their hips. The children were holding their heads up without any problems, and the moms looked at their surroundings vs their children. In my situation Jude cannot hold his head up well enough to look around, or to be carried in that manner. If I did try to carry him that way I would need to watch him and his head, vs anything else around me. I was not envious of them, but I did make a note to myself that I notice these parents all the time.....and I do. I seem to study parents more when I see them out with their children, in a way I never did prior to Jude. I wonder if those parents stop to realize how amazing their babies are. I then got into the place I was going, and I saw a lady that had a disability. She had a limp, and some features that signified she had suffered a stroke at some point. I wondered when the stroke happened, was it as a child, or as an adult. I was encouraged that she seemed rather independent, and in a weird way was proud of her accomplishment. My mind seems to always flow with activity now analyzing the world that surrounds us. I looked at everything in a different manner, I ponder whether that's a good or bad thing.

As I said, my mind races with different emotions, and questions. I hear news stories where parents take their children's life's and it affects me profoundly now. It makes me very angry. I am grateful to Jude for teaching me areas of life that I had never seen before. I am grateful for him for teaching me just how truly amazing my daughter is, and how amazing he is. Thanks Jude!

Wednesday, April 22, 2009

Seizures, Smiling, Boxes, and moms....oh my

I have so much to blog about today, that my head is spinning. This could be a long post people so strap on your big person boots, and hold on for the ride. Let me preface this with reminding you that I am a blogger, not a writer. My sentence structure, and grammar could always be better, but I simply speak from the heart. I feel I lose some of that if I have someone proofread my errors. So thank you for bearing with me.

Yesterday I walked in the door to see my lovely family. Jude was lying on his blanket with his head facing the TV, and I called his name in my high pitched momma voice. He turned his head directly at me, and flashed me the biggest smile ever. I was so excited at this that I scooped him up in my arms, and Emily snapped another huge smile.
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I think the little boy was happy to see his mommy, but the encouraging thing here was his brain activity, and his response. After my welcoming, I suggested we go on a family walk in the beautiful sunshine. It seems our TX weather has finally kicked into high gear, and we are experiencing warm gorgeous days. Emily decided to ride her bike with her ..... ahem......dragon helmet (sigh)....while the rest of us walked.
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We enjoyed the great outdoors, but I could tell Jude was getting sleepy. We went back inside, and my little boy ate 8 ounces in one sitting, and then fell asleep on his daddy.
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It seems Jude is going through a growth spurt, or just growing into wanting more food. We have just increased his prevacid to twice a day, and that could also be the culprit for the increase in food. I am guessing his reflux is a lot better, and therefore Jude is able to eat a lot more. Although to our sleepy dismay he woke up at 3:22 this morning to suck down another 7 ounces. We are happy he is eating, and we hope he continues to thrive in that department. We count our blessings each day that to date there has never been a mention of feeding tubes, or other issues where Jude is concerned.

While Jude was resting comfortably on Mikes tummy, Emily came and sat down next to me. She smiled, and said she had a question for me, and I told her I was all ears. She was asking what she could do to help others, and referenced the March for Babies campaign I worked on in honor of Maddie. I asked her who she would like to help, and she mentioned animals, or children. She discussed collecting dog/cat food to take to local shelters, but then nixed that idea. She then came up with, "Emily's smiles". They are boxes made for the Children's hospital in Dallas. Jude has been there on several occasions, and Emily explained she knows well how boring hospitals can get. She wants to make boxes filled with smiley objects for the patients AND their siblings. She stressed, AND THEIR SIBLINGS. Do you think she was making a point?? I assured her I would do everything I could to help her with her project. I then told her how very proud I was of her, and how great it is she has such compassion flowing through her. We sat and researched where we could buy boxes, smiley objects we could get, and labels we could make. We figured if we collected donations she could spend about $15 a box, and make it nice for the kids. I emailed the child life coordinator with Dallas Medical City who replied this morning, and was thrilled with the idea. We are now hunting a 1 page website, and will move on from there. My Emily, she makes me so proud! She has been through a lot this past year, and has come through it a better person. To me that shows amazing strength, and a determined little being!

Now on the sad note. Below you will find the seizure video I spoke of. It's only 30 seconds long, but it is graphic, and disturbing. I plead with you not to watch it if you think it will bother you. I showed the video to a friend at work that said, "I had no idea baby's seizures looked like that, I thought they just shook". That is a common misconception with infantile spasms, and hence my posting of the video. Infantile spasms can be subtle, to violent like Jude's. His seizures actually started off as a simple rhythmic lowering of his head, and an opening of his mouth. There were no audible sounds like you see in this video, and no whimpering. We only caught his spasms because we watched other U Tube video's, and began to suspect something was wrong. If it were not for those parents posting video's of their child's seizures we would have been lost until these violent episodes appeared. . The spasms then blossomed into this vile evil inhabitant of my child below, and then became even worse (I won't ever post that video). Before having a baby I feel like mothers seeking a pregnancy wish to be a member to, "the mommy club". You feel a bit left out until you have/adopt a child because you cannot fully grasp what being a mother is about. Little did I know there were sub categories to the mommy club. Groups existed like, Mommy's with autistic children, Mommy's with down syndrome children, and Mommy's with seizure babies, etc. They are sub categories one never thinks they we will join. No mom walks by a sign up sheet in the hallway, and puts their name of these lists for their children. Once we are placed in these groups though we find a way to settle in. After the shock, and anger wears off you find how blessed you are to know, and care for this little human being placed in front of you. It's an understanding that you will always have a "baby" with you, but you never mind. It's being a member of a club, that no one else can grasp unless they are a member of the group too. I am just starting my journey down this path of being a mom of a special needs child. I can tell you though that I think being a special needs mom, means simply realizing your a mom to a very very special baby. This is what a stroke can do to a baby, I hope you never experience this. If you think your child shows signs of seizure activity, please see a specialist.

Now since I know that video can be sad, I am going to leave you with the below video showing how amazing Jude is doing now. This was taken yesterday, and if you can ignore my high pitched momma voice you can witness his pterodactyl laugh. After we got his seizures controlled, and his medications reduced, Jude started learning regular development. Some children never find a regulatory medication, and therefore do not develop any further. Those moms in that "mommy group", and in my prayers every day! We hope, and pray that with our help Jude will continue to learn new abilities. Blessings, and have a fabulous day.

Stroke tip of the day: Make sure your child gets some form of exercise each day. Local sports, swimming, walking, running, and biking are great ways to achieve healthy levels of exercise!

Tuesday, April 21, 2009

I should have been in pictures!

"Oh No" exclaimed little Jude, "Mommy put my down on my blanket!!"
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"No really I don't like it at all!!! Pick me back up mommy!!!" Whispered little Jude.
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"What was that?.......oh whew, it was just the couch. NOW PICK ME UP I SAID"
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"Ok, that is much better. I like being on Daddy's tummy. I am going to get you mommy for setting me down!"
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Thus was the story of Jude last night, but he sure is cute! He makes our hearts smile.

I finally got Emily's new camera in yesterday, and we both went crazy snapping pictures last night. I am so happy that her old memory card works in the new camera. I have decided to start a new blog where our family will give reviews on products we use, places we dine, and vacations we take. I figure my family has to many opinions on things, so we might as well put it down in writing (giggle). The first review I did was on Em's camera. You can visit the website here: I hope you will stop by and visit. In addition here is a photo Emily snapped of herself with her camera last night. I think it's beautiful!

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I am currently working on finding a host, and getting a code for the video of Jude's seizures. I am for warning you that it is very difficult to watch, and it has taken me a long time to get comfortable enough with showing parts of it. Therefore, when you see a title pop up "Seizure video", disregard it if you don't wish to see it. I finally came to the conclusion that if the video can help someone in the future than it's worth posting.

Stroke awareness tip of the day: Don't smoke around your children. Not only is second hand smoke dangerous, but children learn habits from you. Smoking greatly increases your chance for stroke. Make an effort to stop not only for your health, but for their health!

Monday, April 20, 2009

It's Monday again

Well it's Monday again, and I am back in the office. I have complained before that's it's difficult being a working mom, that I am grateful for my job, but sad I leave my family. It's the never ending struggle that afflicts so many moms today. Jude was so precious this weekend that I knew I would miss his laughs, and I am already wondering what he is doing. I have been rather busy though, so my mind has been occupied until now. I am encouraged that Jude is becoming so much more interactive with us. I only hope that the therapists can work with him more, and help him sit up. I would also love to see him reach for objects at some point. I see the potential in Jude, and I am encouraged that he has such strong legs. When we put Jude on his tummy he uses his legs to scoot around his blanket. If he can get control of his arms I am sure he will be able to maneuver himself around. The problem I am having right now is Jude's left arm is very stiff, and he still will not relax his fist. He stiffens his arm so much that I am worried if it's bumped in the wrong manner, something terrible could happen.

Jude did have a reaction last night that I have never seen before. I had placed him in the bath water in his tiny bath chair last night, and he made a grimace. I thought the water might be a little to warm, so I turned the faucet on to cool down the water a little. The water was still warm and hit Jude's foot. It scared him so bad that he nearly jumped out of his bath chair. I ripped him out of the water quickly, and held him until he stopped shaking. I felt terrible, but I was also proud that he had brain activity. I had felt the water with my hand so I knew it wasn't hot or cold, it just startled him.

So I have been feeling a bit lonely lately, and I am not sure why. It's probably my normal girl hormones messing with my mind. I tend to be over sensitive about issues sometimes, and I am working on that. Everyone has their flaws, and that is definatley mine.

I have several friends that have recently found out they are pregnant, and I am so happy for them. I had one of the soon to be moms email me her concerns regarding her pregnancy, because of what happened to me. I reassured her that I am sure she will be fine. I told her that 1 in 4000 babies suffer a stroke, so I have ALL my friends covered. She laughed, and then felt a bit more at ease. I told her to relax, and enjoy her pregnancy because it's a wonderful experience to feel a baby living inside of you. One of my best friends Sarah is also pregnant, and I am so happy for her. I know she will be an incredible mom. I have been wanting to do something for her in honor of this joyous occasion, and sat in my bed last night thinking about the proper gift. I thought I would go make a bag of items I found incredibly useful after I delivered. I am a huge fan of Johnson and Johnson's head to toe baby wash, and I thought this along with other items would be appreciated. I then started thinking about how I was so excited when I first got pregnant. I dreamt of baby clothes, maternity clothes, sweet smelling baby feet, and more, only to have my dreams shattered. I was a normal everyday mom planning a wonderful smooth pregnancy. I then sat and prayed as hard as I could that her pregnancy will be easy, and result in a perfectly healthy baby, and a smooth delivery. I know my prayers will be answered.

So each day I thought I would start leaving with you a stroke tip. Childhood strokes are fast becoming one of the top ten killers in children. Jude's stroke was in utero and there was nothing to be done, but if we can help save at least one other child by promoting stroke awareness then we will be so happy. By promoting Jude's story and blog I hope to promote awarness, and help other children

How can you avoid a stroke?
Monday tip: Feed your child healthy meals low in saturated fats and low in cholesterol. Childhood obesity is one of the causes of childhood strokes!

Sunday, April 19, 2009

Baby on my lap

Jude seems to be going through an intense phase of not wanting to be put down. He wants to be tightly cradled in someone's arms while flashing his toothless grin...........the entire day. He doesn't like his chair, his swing, his blankets, nothing! If you put him down he will wait about a minute until he realizes he is not in your arms, and then scream until he turns a bluish red. I am debating on whether this is a normal baby issues, or Jude wanting to feel more secure. Emily went through a phase of wanting to be held all the time. I know babies go through this because they have no concept that you are coming back, and will pick them up again. Again, I am not sure if this is normal, or if it's part of his awakening from the medication change. In other words since he is more aware of his situations it might scare him a bit, and he feels more safe in your arms. I guess I could let him cry, but I figure he has been through enough already, and I enjoy holding him.

Jude has also started this hilarious pterodactyl laugh. He screeches with a huge smile, and we have to laugh right along with him. I am hoping to get this on video so I can share it at some point. I have received a million smiles this weekend, and that is worth so much to me. Mike teared up yesterday watching Jude laugh telling me how this has all been worth these little giggles we receive. We are still questioning the arching that he does. I am interested to know if other mothers of children with CP notice extreme arching? Jude arches back, turns red, point his toes, and cries. I am trying to figure out if this is break through seizure activity, Jude throwing a fit, or a part of the CP. If you have any advice it would be wonderful to hear.

I have had a lazy Sunday, and I think I truly needed it. Sometimes work, family, and life in general can take a toll on my physically. Mike is out leaving cards on homes who might need roof work in hopes to get some extra business. Jude, and I have kept the couch warm and just enjoyed watching "Grey Gardens". This movie starred Jessica Lange, and Drew Barrymore, two stars I think are amazing. This is a movie based on a documentary that was made in the 70's about Jackie O's cousins the Beale's. I was so fascinated by these two eccentric women that I couldn't peel myself away from the movie. I highly recommend watching it. It's amazing to see two women from wealth fall into a complete penniless existence, and live the way they did. Bravo to Drew Barrymore for an award worthy performance.
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Forgive any misspellings etc.........I have a baby in my arms.....still.

Friday, April 17, 2009

A humble thank you

I would like to thank all those that contributed to March of Babies. I just got involved with this project, and I am afraid I didn't have much time prior to the walk date to reach my goal of $500. I am happy to announce that we have exceeded the goal by $165, and the number is still climbing! I have incredible friends, family, and supporters. I know this money will be put to GREAT use! I plan on volunteering with this organization as much as I possibly can. Jude was not a preemie, but premature babies carry a greater chance of having a brain bleed or as stroke, therefore any organization that can help in research is one I want to help!! Maddie inspired me to get my tail end moving, so little Maddie this is for you! I picture purple balloons drifting into the sky, and I hope it makes you smile. Please see the tribute Maddie's parents did for her here:

Jude has inspired me to set up a walk for Pediatric stroke awareness. I am targeting September, and I have already talked with several other moms who's children were afflicted by strokes. We are all looking forward to working on this event, and getting to know each other better.

Remember that strokes are fast becoming one of the top ten killers in children. There is little that can be done with an in utero stroke like Jude, but there are a few things. I plan on posting some stroke awareness tips in the upcoming days. Until that time you can research information on this website: Emilie runs this website, and has been a blessing to me with information, and answers.

I have to run or I would give you more information right now. It's Emily's weekend to go to her dads, and I would like a hug before she leaves. I have been so busy at work I have not had a chance to chat with her.

Have a blessed weekend.

Friday Friday!

So yesterday my darling husband called me at work and he was a complete stressball. He was yelling again about how difficult it is to take care of a baby. I explained to him that I know first hand how trying it can be to take care of a baby all day. I chalked it up to a man not being able to handle the situation, because we all know how they can be. If you need an example, just take a moment to remember a time your husband was sick. Although, when I got home I realized just how difficult Jude was being. I personally didn't have a problem not eating, or getting housework done, but Jude was trying to say the least. He would scream at the top of his lungs if you were not holding him, and he would get so upset that he would hold his breath. I am unsure if it was gas, him teething, or the medication again. I am praying it is not the medication. I am sure many people that read my blog have experienced a baby with colic like symptoms so you know it's stressful. Although he would flash you one of these every now, and then and everything would be okay.
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So I apologize to my husband for not understanding that he was having a difficult day.

So Mike called earlier, and said one of the Terrorists escaped again. Lady escaped even with her new collar, and the fencing. Fencing, electric fencing, cages, and I think even steel would not deter these dogs, nothing can hold these Houdini's in. I wrestle posting anything on my blog about these dogs because it makes me sound like a dog hater, which is not true. I grew up with a Yorkie named Muffin that I adored, and when he passed I had a Cocker named Gabriel. My dogs went everywhere with me, and I loved them so much. My poor little Yorkie was with me since I was three, and was subjected to doll clothes, bike rides, and swinging. The movie "My Dog Skip" brings me to tears every time, because it reminds me of my relationship with Muffin. Oh, and yes he was named after the puppet on Mr Peppermint. Who is old enough to remember that show? I was glued to the TV every Saturday morning watching Mr Peppermint, and Muffin.
Spot saying "What did I do?",
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In regards to last night Mike had a very difficult time with the dogs. They are petrified of the rain even though they have a 200 square foot covered patio, and an amazing large dog house with a 100 pound roof. Mike built them a dog house that is for police dogs, and it even has comp shingles like our house. It resembles this:
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Minus the flower box, although Mike did want to add one at the time he built it. You could literally hear the dogs singing "Movin on up" when he completed their home.

So last night when I got home I heard a horrible squealing coming from outside my window. Mike bolted out the door with great fury only to find a mud lathered dog shocking herself digging under the fence. He wrestled her back in, and then worked feverishly on her collar to get it working again. As he walked in and out of the back door his other dog Spot would use his football moves, and knock Mike out of the way to get inside. Emily, and Mike would then sprint around the two corners of the kitchen to trap the dirty dog, and lead him back outside. This became a game with Spot every time Mike had to go out the back door. Mike would repeat pulling Lady out, trapping Spot, and yelling at them all. My favorite dog Jack gave up early in the game, and went to the dog house like a good boy. You could literally hear his thoughts in a bubble over his head, "Stupid dogs I am taking my butt to bed before I get in serious trouble". So this debacle went on for about an hour, and Mike was very frustrated. He went through this entire event only to his surprise to learn Lady dug out in the night, and was missing again. My thoughts are that if the dogs don't like their posh dog house, walks, premium dog food, and dog toys then they can find somewhere else to live. I know that's mean, but once Spot trampled Jude again I was officially done with the SPOT THE TERRORIST! I love Jack Russell's, but three together should officially be named Jac Queda!

Ps. As you can see there is a button on my blog for March for Babies! Please help me reach my goal, and help healthy babies be born everywhere.

Thursday, April 16, 2009

Disturbing dream

I had a very disturbing dream last night, the type that you rarely fall back to sleep from. I was up at about 1:40 am, and just milled around the house for a bit. My dream involved the entire family, and we were on vacation again. I had gone and put Jude down for a nap in another room, and came back to talk with my family at the dining table. Soon I heard Jude crying from the other room which is unusual, and I rushed in there and couldn't find him. I searched everywhere, and finally found him wrapped in white sheets in the sink. I remember that in my dream I began unwrapping each layer of white sheet, and right before I pulled it back to see his face I woke up. I am not sure what caused this dream, but it was horrible.
I think my mind was playing off my fears, and I have been affected by others losing people so precious to them lately. I remember feeling so sad, and at such a loss in my dream. I guess it is weighing on my mind today.

Any time anyone asks me what my biggest fear is I respond, "Losing one of my children, and scorpions". I know the scorpion comment probably made you laugh, but those little suckers scare me!!! Just looking at them sends shivers down my spine,
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When I was younger the heat wave of 1980 hit Texas, and it was unreal. We had just moved into a new neighborhood, and there was construction all around us. Since scorpions live underground the construction crews were disturbing their homes, and they did not like it at all. So to find new shelter the little villians ventured into our homes. My mom was alive at that time, and she would make me wear slippers around the house. Due to the fact scorpions like dark damp places my mother would turn the faucet on to clear them out prior to my baths. I was never stung, but I saw so many scorpions I lost count, and my parents were both stung. These little nasty creatures stuck in my mind, and I do not like them at all. I tried to tell my husband that I hated them, but he saw first hand how much when we encountered one at the lake house. It took him two days to recover from laughing at me. In addition to the scorpions there were tarantulas EVERYWHERE during the heat wave!!! They loved the sand, and the little boy next door would run and jump in the sand piles creating a volcano of tarantulas. He always brought his baseball bat with him, and basically played whack a spider with them.

Spiders never truly scared me that much. I don't like them, and prefer my husband kill them, but I am not overly scared of them. You would think I would be though because I was bitten by a black widow about four years ago. Here is my thumb....see the fang marks?
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I was in my shed cleaning boxes out, and accidentally lost my shoe in the Christmas tree box {I had lost my balance, and my foot went into the box}. I reached in to grab my shoe, and felt something sharp poke my thumb. I figured it was a limb from the tree, and didn't give it another thought until two days later. I was so sick, and every lymph node on my body was swollen. I could not figure out what had happened. I came into work, and told Sarah "Do you think it has anything to do with these two ant bites?". She replied, "You silly girl those are fang marks!" The doctor confirmed I had been bitten, and there really wasn't anything to do but watch it. About 6 weeks later I finally felt better. I swear, I am not normally a ditzy blonde, but I had no clue I had fang marks in my thumb!

So have I given you the creeps yet today? I grew up in Texas where it's hot and dry, and in a time where kids played outside all day long. I learned to look for snakes, spiders, and more and to deal with them when I encountered them. I guess that made me a little stronger, and a bit of a tom boy, but if I see a scorpion I am still a little girl!

Wednesday, April 15, 2009

Jude smiles

I finally got a picture of Jude smiling, and as promised I am here to share it with you. For those of you that are new to my blog, this is a huge accomplishment. It is a sign of emotion from Jude, and that warms our hearts. When Jude was about 6 weeks old he had a tiny grin he would flash me. Atlhough. when the seizures started, and we were given the devastating news, our fear was his smile would diminish. I remember asking the doctor, "Will the medication or the seizures wipe out his cognitive abilities........will he lose his smile? Please tell me no because it's all we have left!!" The doctor told us it was a possibility, and within a few days Jude's smile was gone. With the removal of the pheno, and topamax and the introduction of the depakote Jude is finally becoming himself again. He will never be normal, but he is Jude and so precious and inspiring!
So we are so overjoyed to be able to share this picture with you. Thank you for sharing.

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Fashionista I am not

So Jude was rather grumpy last when I got home, and I didn't get very many smiles. He just wanted to be held which is generally what he does when something is bothering him. He then fell asleep, and finally got up for a bit to take his medication and drifted back off. I am hoping that he is feeling okay, and was just tired. This morning he woke up about 7:45, and his eyes were darting like they do during a seizure. I am positive they will up his medication at his appointment in May. We worked with Jude a bit last night, and this morning on holding his head up more. The therapist has indicated that Jude has very strong legs thus giving him an advantage to someday being able to walk. The issue is that he still doesn't have the best head control. He has no problem lifting his head, but a few seconds into holding his head up it flops backwards. We will keep working on this, because our goal is to get Jude to sit, and walk.

Here is a pic of Emily helping Jude learn his colors on his music player that Kelly and Sarah purchased him.
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So I am a huge fan of taking very hot bubble baths each night. This is my way to unwind and I love it. I normally pour myself a glass of white wine, grab a magazine, and soak in the bath tub for at least twenty minutes. That is my "me time", and a way for me to unwind from the daily grind. Somehow I have always pictured my stress as dirt washing away in the hot water, and it makes me feel better. Last night my magazine of choice was the subscription of Elle my aunt purchased for me. I love flipping through the pages admiring the beautiful clothes, and sparkly jewelry. I picture how great the pieces would look on, and imagine going grand places in them. Last night I found a pair of strappy Sandals with an African edge to them particularly appealing. ....until I saw the $1492 price tag...REALLY? I know that I cannot understand having the type of money where you can spend almost $1500 on shoes, ONE pair of shoes. I would like to say that if I did have that type of money I would still be in my tennis shoes and jeans, but who knows. I have learned from my experience with Jude you never know WHAT you will do until you are actually in that situation. I can tell you that as much as I like fashion, I am not a fashionista, and would not fit in the lovely pages of Elle. I prefer a nice pair of Jeans, a nice shirt, and high heels if I am going out with a matching necklace. I do love jewelry, but I prefer costume jewelry over expensive diamonds, and precious stones. I have never understood the ridiculous prices placed on diamonds, and what people go through for them. Besides jewelry winds up coming off my body about half way through the day because I get annoyed with it. My co-worker Sarah has always laughed that my rings, necklace, and earrings will be sitting on my desk about noon. I guess I am a mix of fashion breeds because I love looking at the beautiful pieces, but I also want to be comfortable. Plus my kids clothes come before mine so I am a bit tattered lately. I believe I am beginning to resemble Annie prior to being adopted by Daddy Warbucks, I am kidding. As far as stars go I have always thought Charlize Theron dressed beautiful with class.

Anyway, on to another topic. So Mike, and I were watching "Heckler" last night, which is a documentary staring Jamie Kennedy. Basically Jamie is talking about bloggers......., well not my type of blogging, but those that review movies. He and others stars were talking about how critics can affect them personally, and emotionally. Now that blogging was invented there are now non professional movie reviewers, therefore stars are subjected to even more scrutiny. I myself think that reviews from the average Joe could be beneficial, BUT I do see his point. I have never considered the fact that when we talk about movies we discuss how the star is bad, not that the star is bad in the movie. Does that make sense? He pointed out one reviewer that stated "Jamie Kennedy sucks and must be stopped", not that "Jamie Kennedy was horrible in this movie and his acting abilities need work". Therefore, it sounds like a personal attack on him,and I am sure that can be damaging. The funniest part of the show was that Jamie was confronting these reviewers in person, and they were very flustered. I like that he showed us the human side of hollywood. As much as stars benefit from their lifestyle I am sure it can be very trying too. Years ago I wrote to People magazine when they covered a piece on Leonard DiCaprio after the premier of Titanic. I told them I couldn't imagine being in a position where I could not run into a mall due to being mobbed. That it must be aggravating sometimes not being able to stop at the grocery store, or anywhere without being surrounded by people and paparazzi.
I understand a star subjects themselves to this, but it still must be hard....just think about it. In response to my People ad I had an older woman I know tell me "Well that's what they get, especially those dumb women like Madonna!". Really??? I responded "I think dumb would be the incorrect word to use considering she is one of the wealthiest women in the world....she seems rather smart to me". So I sometimes wonder if we sat back and realized how critical we are of others, and worked on being positive, how our own personal lives would change. Why must we always have something negative to say about someone? Is it human nature? What do you think?

Tuesday, April 14, 2009

For the love of Maddie

Yes, I am blogging again. I am heartbroken......I learned that a baby I follow on her mothers blog passed away. As I read the outpouring of emotion from her family, and friends my heart sank. News like this is the type you like to dodge, but life slaps you in the face sometimes. This poor mother is now blogging about writing a eulogy at her daughters funeral. I know she must have an empty hole in her stomach that she cannot fill. I only hope that someday she can find happiness again. Her baby was premature, and had battled illnesses and overcame the odds, but ended up losing her battle. I have placed a button to the side of my blog. Her supporters are trying to rally people to donate $5 to the family to help with final expenses. I have just scanned over all her twitters, and I can tell this was unexpected. My heart aches for her.

I wept as I read her mom, and her friend Meghans blogs today. I then cursed the world, because moms and children have to suffer this way. I put my hand on the cold beige office phone that lay on my desk, and I called to check on Jude. I asked Mike all about him, and then asked him to send me a text of one of Jude's smiles.

Hug your family tonight, and be thankful for all you have.

Her mom's link:

Medication frenzy

Last night we ran out of the Axid which was taking the place of the Prevacid due to the recent pharmacy disaster I blogged about. I realized there were refills on the Axid, so I called to talk to the pharmacist. I asked her to check the total co-pay that we would have to muster to purchase his medication. I figured it was the normal $60, but she said she was once again going to try the MDC program's medicaid. After a long wait she said she had been entering the code wrong this entire time, and did get the medication through. She apologized profusely, and I assured her that it was okay. So we picked up our first medication without any out of pocket expense, and it was such a relief! If I could start a foundation that helps parents financially when a child is sick, I would.

While we were vacationing in Arkansas this weekend I let Emily pick one item to bring home with her. She decided on an illustory book, which was an excellent decision. Basically this amazing little invention allows your child to become a published author. It comes with several pages to write a story on and then you must provide illustrations for your story. Emily dedicated a night to writing her story, and then she and her little cousin carefully drew the pictures to correlate. Emily again wrote an amazing story about Jude, that I will share below. She is such an amazing little girl, and I love her very much. Please enjoy Em's story, and please remember she is only ten.

"Liquid or Pills?" by Emily

"GREAT JUDE! but now don't throw up" my mom says. You see, my mom loves Jude, but Jude has seizures. We have him him on medication, and he is on a pill form. He went to the hospital when I was at school, and I was really worried about him. The doctor was coming, but he didn't make it before we left. Then suddenly Jude threw up on my step dad. My mom cried because she couldn't stay with Jude so she sang, "Somewhere over the rainbow" instead.
It's stressful, but I can count on my mom to always take care of me. Then finally the doctor comes and says, "The problem is he is getting to much of the medication", "So what do we do" my step dad says. "We give him a liquid form instead of a pill" the doctor says. So we get him on the liquid form, and wait, and wait, and wait, and now he is OKAY! He now has no seizures! He smiles at you, and talks. He's seven months old and healthy. I love you Jude, and I hope I inspire you as much as you inspire me.

Here is a picture from her story:
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Monday, April 13, 2009


Mike said Jude was very cranky today whenever the therapist came, and was not cooperative. Mike suspected his reflux was acting up, and quickly administered Jude's medication. Within ten minutes the therapist, and Mike noticed an improved difference in Jude. The therapist then began to work with Jude on sitting up, rolling over, and unclinching his fists. The therapist also asked if the Vision ECI center had contacted us by phone yet, and we told her they had not. She then saw a slight smile from Jude, and she was very happy. She said that before she felt Jude was just a baby that was over medicated doing whatever we wanted him to do. He is now a baby that still has severe issues, but expresses resistance to things he doesn't like, and acceptance to those things he does like. She said that is a large accomplishment, and that made us very happy.

Without drowning in our happiness we do try to keep a level mind. I had mentioned that Jude is showing signs of break through seizures. I saw this activity again tonight, and I mentioned it to Mike who confirmed he had noticed it too. Jude does a rhythmic motion with his arms dancing over his head, and his eyes seem to wiggle to the right. These are the dancing moves of seizures, and I have mentioned before that I feel like seizures are demons. I can understand why the uneducated in the centuries before ours believed this was a sickness of those afflicted with possession. It seems that once you get the seizures under control they find a way to combat what is holding them at bay, and surface again. With time I believe the seizures will begin to increase again so this will cause an increase in the medication. The good news is we found a medication that works, and we have room to raise the dosage if needed.

Mike picked Jude up today and sat him on his tummy singing, "You are are my Sunshine". I began talking to Jude in my high pitched voice, and he smiled SOOO big. I told Mike, "I remember the little handicapped girl in her wheelchair at Emily's softball game. Her dad was hugging on her, and seemed to look right through her disabilities. At the time I felt sorry for him that he had a child with such handicaps. Now I understand why he hugged on her so much, because you just love and appreciate everything your children do despite their limitations". Mike followed that statement up with, "You are just thankful for what Jude accomplishes, and you love him regardless". I just nodded my head yes. It made me a bit teary.

As mentioned before the terrorists (Jack Russells) have been found so everyone can relax....sigh. To my dismay they are again in my back yard tearing it apart. I do love Mike's dogs.........well I love Jack mostly, but I would sound like a pet hater if I said I have issues with Spot. I will admit it though........I do have issues with Spot ........ because he is a just an instigator. He is the one that starts EVERYTHING!!!! He bites, he chews, he just is BE BE! He gets walked, etc.... he is just onry! When the Brady bunch merged I don't remember there being a butt sniffing, blanket humping, ground digging, baby trampling, duckling killing, cat killing, Houdini that ate everything in site. He is Marley times 200!!! Mike is currently trying to convince me that Spot is a special needs dog, but I told him not to EVEN pull that card.

Good night all!

Monday Madness

I have been swamped at work trying to catch up on emails, phone calls, and more. I am currently taking lunch so I thought I would update the blog. I was very tired this morning after the drive home, and the grill fire experience. I also really didn't want to leave Jude after being with him for five days. Luckily, he woke up right before I was leaving and I got a huge smile when I said good morning. Jude has a therapy session today at 3:30, and I am anxious to hear what she has to say about his new interest in expressing emotion. He is still clinching his fists so I think we are going to need to pursue the splints to keep his hands open. We also received information in the mail regarding vision therapy for Jude, and will be pursuing this avenue as well. Jude does seem to be experiencing some sort of spasm through his medication. It is barely noticeable, but it is something I will keep an eye on. It is still nothing compared to what we were dealing with before.

While on our vacation I noticed a lot of little boys digging in the dirt at the diamond mine. They would jump in and out of holes, getting as filthy as possible. It made me a little sad for Jude, but it also made me realize that I love this little boy very much. I read another moms blog that had a baby that had a stroke at birth. Strokes at birth can happen due to the lack of oxygen to the baby, the use of forceps, etc. Anyway, she said that once the doctor came in to tell her what happened she immediately thought, "I don't want a retarded baby". No one does, and it was a profound and honest statement from her. I am sure every mother thinks that very thought when the doctor initially breaks the news. I now realize just how lucky I am to have such a special little boy in my life. I am truly blessed!

While on our vacation I spent some time with my two aunts. One night we were sitting around just talking about life in general. My aunt Caron was there and we talked in detail about the day my mom died. I haven't mentioned my mom a lot on my blog, but most people that know me know this happened. When I was seven my mom passed away unexpectedly at my grandmothers house. I won't go into the details, but it was tragic, disturbing, and pretty much shut my family down for years. She told me that everyone has one dynamic person in their family that holds everyone together. The person that calls, plans, and is just overall sweet to everyone. She said this was my mom. It was interesting hearing details I never knew before, but sad that one persons outcome can affect so many others. So if you ever wonder if you make a difference in the world, I promise you that you do. Also, get life insurance!

It was nice spending time with them all. My aunt Caron and her husband Shawn own a chocolate factory in Springfield. He was a well known criminal defense attorney that gave his career up to follow his dream of becoming a chocolatier! He now has one of the only bean to bar chocolate factories in the nation. It's primarily dark chocolate which is good for you, and they even make their on cocoa power, and cocoa butter. You can see their chocolate here:

My cousin came and hung out with us as well, but I didn't get as much time with her as I would have liked to. She lives by me though, so I will see her soon. It's hard being with a large group sometimes, and can be a bit chaotic, but it was so fun!!! I am anxious to go back again. I am thankful we all got this chance to build some memories together, and that we all got home safe and sound.

By the way, I highly recommend the Self Creek Lodge in Kirby Arkansas. They were wonderful, friendly, and did the best they could to offer a pleasant stay at their lodge. If you are going to take a trip anywhere this year you might consider their resort. It sits on Lake Greeson, and is close to Hot Springs, and other attractions.

I am waiting to hear from Mike regarding Jude's therapy, and I will update on his progress tomorrow. Until then here are a few vacation pictures.

Jude in the car playing with his sister.
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Our cabin
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Emily outside
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Ps. We have recovered the dogs............not sure if I am happy about the terrorists return...jk!

Sunday, April 12, 2009

So much to tell so little time, and a fire

We got up today with heavy hearts that we were having to leave our little cabin in the woods. Although, we were so thankful for the wonderful time away with family. We waited until about 11:45 to hit the road again, because the rain was so heavy. Mike was tracking the weather, and instructed us when it would be a good time to leave. We then said our farewells, and after packing everything tightly in the truck we cruised down the road. My cousin had left about twenty minutes before us, and about the time we were leaving her husband texted that we needed to keep an eye open for the town afflicted by the tornado's. He said that it was only ten miles west of us, and we were very lucky! We kept our eyes open, and as we drove through staring at the huge trees snapped in two, a barn in the river, and devastation we discussed how that little cement bathroom made us feel pretty safe.

Jude did so well in the car, but ended up getting very aggravated near the end of our trip. Jude is still rear facing in his car seat, and even though Emily was with him he strained to see me. He would push himself up towards my voice with his neck bent in my direction. I thought this was a great sign that Jude is beginning to recognize certain people. He spent the better part of the night wanting me to hold him once we got home.

I have so much more to talk about regarding our trip, but I am so tired I cannot even think straight. I do have a little story to share before I leave. My aunt sent us home with some amazing steaks, and I decided to grill them for a great end to our vacation. I put the steaks on, and then went back inside to bake some potato's. When I went back out to turn the steaks, to my surprise my entire grill was engulfed in flames. I panicked, but tried to think of the next steps to extinguish the fire before the propane blew up, and the patio caught on fire. I ran and got a pitcher of water to put out the area by my water hose so I could get to it. I then started the water hose, and put the majority of the fire out on the grill only for it to start up again. I had turned off all the knobs on the grill turning the propane off. I was yelling at the top of my lungs for Mike, and smoke was everywhere. Emily was in hysterics, and I yelled at her to quickly take Jude and go to the front of the house. I then realized that I needed to shut the actual valve off to the propane itself. About that time Mike rounded the corner, and came to my rescue. He grabbed the water hose extinguishing the fire long enough to turn the propane off. He burned the bottom of his foot on some melted plastic, but it wasn't that bad. Turns out somehow our outside grill fork had rolled into a crevice without us knowing, and slowly caught on fire thus engulfing the entire grill. Why the company that manufactured an outside grill fork would make their handles flammable BEATS ME! Anyway, Mike commented on how high my adrenaline was pumping. It took me a long time to feel back to normal, and relax. All I could think about was getting my kids away from the possible danger. You had to be hear, but trust me that the entire large grill was engulfed!!! YIKES!

My grill is destroyed, my patio has smoke damage, and we are minus one grill fork, but everyone is OKAY. So that makes me realize we are a very lucky family!! So all I have to say is Welcome Home Ortiz family! lol

Saturday, April 11, 2009

A diamond hunting we go

So yesterday my Aunt Caron drove in, and we met them in Hot Springs for a great day looking around. We took in the history, dripped our toes in very hot springs, and just enjoyed the day. We also went and saw the strangest little animal farm with more alligators than a normal person should EVER see! I will have to put pictures of the gators up when I get home, and comment a bit more on that scene. I didn't get to spend as much time as I wanted there, but it was cold and we were ready to head home. Everyone then came back to the cabin, and we had a wonderful time of playing games, and sitting in the hot tub.

Jude did very well, and spent the better part of the day yesterday laughing and smiling. Everyone here has commented on how encouraging it is that he is so interactive with us.

Today we are going diamond hunting in the diamond at the crater of diamonds in Arkansas. Wish us luck!!! Emily says she is going to find a HUGE diamond so I can retire...wish makes me feel great. Emily got a little something from the toy store yesterday. She can write a story, illustrate it, and then we can send it off and they will publish it in a hardbound book for her. She worked very hard on it last night, and made a story about Jude. It's very touching and once we get it back I will post some pictures. Emily read it to everyone last night, and my aunt started crying. She is a great child.

Thursday, April 9, 2009

Tornado shelter Thursday night

The kids, and I laid down to take a wonderful nap about 4pm, and I awoke to my aunt being home about 5:30. I could hear them shuffling about the house which woke Emily, and she got up. I held camp in my bed with Jude, until I felt I just had to get up. I finally awoke, and we cooked some burgers, and just relaxed enjoying each others company. I then took Emily on a hike, and we collected some fascinating rocks together. Some of the rocks looked like glass, and that led to the discussion of possible multiple volcanic pipes in Arkansas. Once we got home we nestled in for a great game of Uno. We had the TV on while we played and we heard the tale tale signals of a thunderstorm. Being from TX we never take these things lightly.

In the south you familiarize yourself with the beeps, and signals the TV gives when there is a large severe storm heading your way. My husband watched the warnings, and tornado vortexes, and let us know what was heading our direction. He also checked our computer, and I relied on his advice. Our cabin is amazing, but it is easy to tell that it is a manufactured home, which is easily destroyed by high winds. Since we have two children here we watched the TV closely. Once they drew a line of a tornado on the ground heading towards our area, we hit the road to the cement/steel bathrooms by our cabins. We held camp in there for about an hour until the storm had cleared. I had met some older men that said they spent many a night in the bathrooms riding out storms. It sounds terrible, but we actually had fun minus the tornado scare. My aunt was funny, and she made me appreciate what a genuine soul she has. I believe if you can take a second to over look people's faults, and just appreciate who they are then you get so much more out of life!! We even enjoyed the spider " Charlotte" that joined our party.

So Mike and Wayne gave us the, "all clear", to leave the bathroom. I have been in two tornado's in my lifetime, and I do not wish to be in anymore. I would rather be safe than sorry. The tornado's I was in were only an F1, but were enough to leave a permanent impact on me. When a tornado strikes I have noticed that the scene seems to be similar. There is light rain and lightening, and then suddenly the air become still.........EVERYTHING becomes still. The sky is green, and it seems that the air around you is sucked into a vaccum.... that eventually explodes upon your area, and sounds like a loud freight train. I was in a storm shelter in one tornado, and the other was just the tail winds, and I was in closet. I seem to have a personal relationship with storms. Tonight we seemed to get little more than rain and lightning. Once we got home we realized just how lucky we are. The storm seemed to make a V, and leave our town alone. Mena, and DeQueen Arkansas both received major damage. Mena is so bad they shut the roads in and out of their city, and many people are trapped. I never take for granted that I will be the city that was left untouched, because I was once the city that was touched. Make sense?

I guess it's a bit like Jude. I never take for granted what he does now, because once upon a time I never could! Anyway, we are safe and sound, but I feel for the city that was hit. Tomorrow we have a big day in hot springs. I am looking forward to it.

Terrorist Thursday

So it's raining in Arkansas! Mike, Emily and myself drove into Glendale, and found a place to eat for lunch. We also drooled over the houses with tons of acreage, and pretty creeks. We found out that we are only about twenty five minutes from Hot Springs so we will be going there tomorrow. We plan to find a nice place to eat for dinner for Mike's birthday. Jude was good during our little outing, and his medication is still holding his seizures at bay. We did forget to bring the medication with us on our outing, but we were home at 2:30 so all was well.

All was well until we walked in the door anyway!!!!!! Mike brought his littlest terrorist Jack, because our dog fence isn't working at home. Jack is so tiny that he can slip through our rod iron fence on our greenbelt. Of all three of the Jack Russell's, Jack is the best. He is well mannered, quiet, minds well, and is overall just a good dog...........NORMALLY! We had put Jack in the large master bathroom of the cottage while we were away. We made him a bed, and left him plenty of food and water. To our great surprise Jack SHREDDED the blinds in the window. He was just sitting in the window sill looking at us as we walked up. I gasped, and Mike just lowered his head. I guess Jack got very upset when the rain started pouring, and he had separation anxiety. Anyway, Mike had to take a long walk of shame to the marina store to tell them that his naughty Terrorist destroyed the house already. To our surprise they were very nice, and told him not to worry about it. In fact, they were more concerned with the fact we would be inconvienienced without blinds, and said they would replace them ASAP. Let's check this place off as a vacation spot to re-visit in the future!

So Mike has determined that he is unlucky on this trip because he also broke Emily's camera. I assured him that all will be great, and we will still have a wonderful time. I also pointed out that we are lucky, because the marina let us off the hook.

Jude just woke up, and Em put him in our bed and they are watching cartoons's pretty cute!