Tuesday, June 30, 2009

Eat baby!

When I got home from work yesterday Mike was exasperated from trying to feed Jude all day. He was honestly at his wits end. Being a special needs parent does not make you saintly, and doesn't mean you are patient all the time. We are far from perfect, and we do get frustrated sometimes, which I believe is understandable. Sometimes we feel selfish, sometimes we get frustrated, and sometimes we just don't know what to do. So I scooped Jude up, and took him downstairs for a change in scenery, and to relieve from stress from both he, and Mike.

It took me about 45 minutes, but I did get four ounces down him, and then he wanted to play a bit. I watched him as he laughed at the air, and wondered if he was just happy, or if that was some type of response from his brain. I choose to think he is a very happy baby.

So luckily last night Mike got 4 ounces down him at midnight, and he then stirred at 2am but didn't wake. He then got up at 4:15am, and took two ounces, and another 6 ounces at 7am. So the good news is he is eating again, but the bad news is Mike, and I are very tired. I will take tired over having a dehydrated baby in the hospital any day!

Monday, June 29, 2009

A busy Sunday

Yesterday was a busy day. Emily, Jude, and I attended church with my dad, and Kay so Emily could talk to their congregation about her Smile boxes. I am happy to report that Emily raised over $400 for her cause yesterday. I then put a call into Children's in Dallas today about donating her July boxes to them, and they accepted. So after we get all our product in Emily will be having a box making party at our house, for any of her friends that want to join. With her donations we are hoping to make the hospital 50 boxes. At lunch we then discussed making Christmas boxes for all the local hospitals. Therefore, we are delivering her boxes to Cooks Wednesday, and then another 50 to Children's for July, and then she plans on fundraising for Christmas boxes. We discussed a goal of delivering 25 boxes to Dallas Medical Center, 50 to Cooks, 50 to Children's, and a dozen to Baylor, and HEB for Christmas.

After our church activities we came home to do some more errands. Jude slept until about 2pm, but we were able to feed him as he slept. We got about 11 ounces in him by 1pm. I am concerned because he is sleeping a lot, but that could be the increase in medication. Again, it's the never ending question of if it's medication, normal baby behavior, or life threatening. You get to a point when you have an ill child that you don't rush to the hospital anymore. You learn to adapt, watch the child to the best of your ability, and try to go about a normal life. Jude's diapers are wet, he is awake from about 2-10, and when awake he seems his normal self. So we are watching him, and concerned, but we feel that he will be okay. If at any time we get a feeling that something is wrong we will rush him in.

Last night about 5pm we dropped the kids off with my dad. We then went to dinner, and a comedy show with my cousin, and her husband. The food was wonderful, and the entertainment was great. I honestly don't think I have laughed that hard in forever! So it was nice to get out of the house for awhile, and I knew the kids were in good hands. Once we got back we had to give Jude his seizure medication. His big dose of 3ml is at night, and he was not happy about it. Jude got so upset that he was gagging, wheezing, and crying hysterically. I felt so terrible for him! He couldn't get calmed down so I rocked him, and then laid him in my arms until 2:30am. I am very tired today, but at least he finally fell asleep...poor little guy.

As I stated the other night... Jude loves music! When we were being told to terminate, and I was going through all my roller coaster of emotions it was Emily who helped with a simple suggestion of a song. If you remember I had walked into her room and mentioned Jude, and told me to just listen, she then opened up her music box and "Somewhere over the rainbow" filled the air. At that point I knew that Jude was going to be a part of our family. So I played the Hawaiian version of that song over, and over for him while he was in utero. Just watch how he responds to it with Mike.

Saturday, June 27, 2009

Name brand or not?

After I posted Jude slept and slept which again concerned me. I kept shoving a bottle in his little lips even while he slept, and he took about 10 1/2 ounces by 11:30 which made me happy. I had to pick Emily up from her cousins so we went to the mall afterwards. I needed to hunt some shoes for Jude, and Emily needed some items. While there we would stop and again feed Jude while all the shoppers circled our bench. Emily was as patient as always, and even volunteered to mix Jude's bottle for me. I offered her a chance to go into build a bear to look around while I fed Jude, but she informed me she has "outgrown" build a bear. sigh

After I fed Jude we changed his diaper and I noticed his urine was very dark. Therefore, I knew he had indeed gotten dehydrated. My fears were confirmed, but I wasn't overly concerned because it seemed his eating had picked up. I also noticed his spasms had indeed decreased since the doctor ordered the increase in the medication level. A little bit later we fed Jude another 4 ounces, and about thirty minutes later we had a nice full wet diaper. This made me breath a sigh of relief. Since that time Jude seems to have sprung back to his normal self, and I am keeping my fingers crossed.

So I mentioned I went to the mall to hunt some shoes for Jude. I had read on Caleigh's blog (www.hollydgray.blogspot.com) that her PT suggested getting hard soled shoes with an arch. This would help her toes relax and lay down. This made a lot of sense to me, and hopefully this would help with the CP Jude has that causes his toes to point. So off we went to look for little bity shoes that would help Jude. Holly had stated it was very difficult to find tiny shoes with an arch, and I soon found what she was talking about. I went into a brand named child shoe store, and browsed through the cute styles. I soon found a young sales clerk, and asked her "Ma'am do you have any small shoes with arches". I guess I got on her nerves by asking her question and she replied in a snotty manner, " Um no because they are suppose to develop those on their own". I paused, and probably wouldn't have replied, but her attitude annoyed me. "Well that's great, but he has cerebral Palsy, and needs some extra support" I said. She replied "Yeah well like I said they should develop them on their own". At that point I turned around, and walked out. Emily was so annoyed with the girl, that she just patted me on the back. I didn't have to explain a thing because Emily comprehended the entire situation. We then walked down to Payless (of all places), and I walked in asking the clerk if they had any baby shoes with arches. She smiled politely, and took me to the back where we found a great pair of white tennis shoes, and even some blue sandals. They were both hard soled, and had a bit of an arch to help Jude out. It was just a tiny raised bump in the middle that I knew would help. The lady was so nice, and even measured Jude's foot for me to get an accurate size. The shoes are adorable, and look very cute on Jude's foot. Thanks for the tip Holly!

I guess that just proves that name brand doesn't guarantee good service.


Jude only ate about two ounces last night before he went to bed..........and he is still sleeping at 9:15 am. I can't lie, I did enjoy getting some extra sleep, although my husband accidentally punched me in the nose in the middle of the night...ouch. I am still concerned though, and I am keeping a close watch on Jude. He isn't lacking in "food", it's the concern that Jude can dehydrate very quickly. His diapers are still wet, but barely wet.

The question was asked if we might have to switch Jude from Depakene to another seizure medication. That option was mentioned yesterday, and they plan to discuss that with us when our doctor gets back in town. I will be honest, and tell you that option really scares me. Jude's seizures were so violent prior to the Depakene, that these small seizures are so much more tolerable. I do understand that no spasms is acceptable though. I just really don't want to see Jude going through painful violent seizures again while we search for yet another medication. I know that some children have to be on a cocktail of medication, and I guess that could be the case for Jude. I am unsure if you can mix Depakene with another seizure med, but that's what happened before. Jude had pheno, and topamax, although they did nothing for him at all. They honestly didn't phase the seizures. We have said over, and over that the seizures seem like a demon that is trapped for awhile, but gathers strength to resurface and test our strength.

Mike had a roof to complete this morning, and Emily is at her cousins, so I am hanging out by myself waiting on Jude to wake up. It's nice to have a bit of quiet time. I am researching things to do on our staycation next week. I will be taking off work Wednesday thru Friday with my family. We cannot really go away this year, so we are going to have a good time in the metroplex.

Last night Mike had Jude laying in the bed, and was playing him music from his phone singing to him. If you remember, I played Jude music while he was in utero all the time trying to stimulate brain activity. Jude was smiling, and coo'ing to Mike, and it was so cute. I will post the video on Monday.

Thank you for your thoughts, and prayers for Jude.

Friday, June 26, 2009



Have I mentioned that doctor's offices can at times drive me legally insane? I actually love our neurologist, but talking to the assistants can sometimes leave me frazzled. First off we left a message yesterday about Jude's issues, but never heard back. Therefore, I called again this morning, and then sent the following email:

"I left you a message regarding Jude Ortiz. We are concerned, and would like to talk to someone about him. We are unsure if he is having a reaction to the Valporic Acid, or if this is normal. His cheeks have been on and off flushed, on and off warm to the touch, he has very limited eating ,but at the time is still taking between 4-6 ounces every 5 hours (no solids), he keeps rolling his tongue, his spasms have greatly increased (especially when eating), and he is sleepy.

"This is the reply I got:" ok my oncall DR. said she thinks you should take the baby to his pedi doctor it sounds like it is not seizures related ." (This was copy pasted by the way).

Anyway, I emailed her back:"We went to the pediatrician yesterday who said Jude looked perfect except for the spasms. Therefore this should be an issue with SEIZURE ACTIVITY. Also, this is exactly what landed Jude in the hospital before for a week, which makes me wonder if you even pulled the file"

I have yet to received a response, but Mike just got a call from the doctor himself (hooray). He said he believes that Jude is growing resistant to the medication, and the seizure activity is keeping him from eating. The effect on a baby's brain from seizures can be detrimental to normal everyday activities. Therefore, they are increasing his meds, and we are watching him. We have instructions that if Jude continues to refuse food we need to bring him into the hospital. At least the doctor doesn't think this is a reaction to Depakene which we know can be dangerous.

Sometimes the challenge of being able to properly determine what is causing issues in Jude can be trying. It's always seems to be a question between normal baby issues, and life threatening problems.

Jude not eating

I am afraid Jude is not eating today, and his spasms have greatly increased. Mike is giving him until 11 to eat, and then if he doesn't we are off to the hospital. I will keep you updated.

Thursday, June 25, 2009

My icons are leaving...........

Like the rest of the world I sit here in shock watching the details of Michael Jacksons death with great interest. I was already mournful for the loss of Farrah Fawcett today, although I was thankful she was no longer in pain. It seems this week has been full of losing staple television figures from my childhood. When that happens we have a habit of questioning our own mortality. It's strange how we feel attached to these figures we grew up with in the media, yet we have never personally met them. So now here I am watching with the greatest sympathy the death of possibly the greatest musical figure to hit the pop scene.

I knew every word, and every move to thriller when I was a child. I was in awe of the moon walk, the glittery gloves, and his impressive "never land". Therefore, I was broken hearted when I heard Michael Jackson had been accused of sexual abuse because I have a personal interest regarding that issue, and it made me angry! Half of me felt like if a child said that happened then it had to be true, and the other part of me listened to the jury that he indeed was innocent. I remember Geraldo Rivera promising to shave his mustache if he was convicted because he was 100% sure Michael was innocent. Regradless of his roller coaster past Michael was indeed an icon many of us followed. We dressed like him, learned his dance moves, and followed his music with great interest. Regardless of what we guessed was true, and what we didn't in his spotty past the fact remains he was an incredible artist.

So how does this all apply to Jude? Let me explain. This afternoon Jude had a doctor check up, and luckily got a clean bill of health (for the most part). While in the doctors office the pediatrician referenced today's Star Telegram article, and mentioned how one of the practitioners in the office also had a child affected by a inter uterine stroke. Why? Because strokes happen and to random people with no known cause. No one "chooses" you for this journey it's just random chaos that can happen to the rich, poor, or famous. Heart issues also have no personal selection of people, it's just random, and this time Mr. Jackson was chosen. Granted Michael may have contributed to his death, but still the fact remains we should be thankful for our lives each day. Death, and disability could care less if you are the King of pop, the Princess of Wales, or your average citizen, for in the end we are all fragile. So it is up to us to remember that our lives can end in a second, and due to this it's up to us to make sure our lives reflect the legacy we want to leave. Jude already has an amazing legacy, and I only hope to leave the same.

So regardless of anyone's opinions on Michael I would like to leave a lyric to one of his songs that inspired me to be a good person.

"I'm starting with the man in the mirror
I'm asking him to change his ways
and no message could have been any clearer
If you wanna make the world a better place
Take a look at yourself and make a change"

I have honestly listened to that lyric with tears. We all have the ability to make a difference in the world. Michael Jackson made a difference in the world because he was a true musical genius.

Now, no more of my childhood icons are allowed to pass away. Ed, Farrah, and Michael is enough.

A sleep baby

So I went home yesterday to work on my bosses cake some more, and then Emily had select team try outs at 8pm. She did okay, but it seems she gets a bit nervous when trying out, and doesn't work up to her ability. It's almost like taking a test in school when you know the answers, but freeze and cannot remember them. Emily is moving from rec to select, so I hope a coach can see her potential skills, and accept her on the team so she can learn more. We have heard over and over that if we leave her in rec she will get "lazy" vs playing up to her skill level. After try outs we went home, and I worked until about midnight on the cake. Sooooooooo here it is............. what do you think?
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It's suppose to be a baseball field, with grass, dirt, and the baseballs.......yeah yeah........it's my first attempt at working with fondant. I know it looks like a baseball jungle, but I tried. So it's my bosses big FIVE O so if you are one of our insureds, you might ring, and say Happy Birthday!

Prior to decorating the cake my husband got busted:
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Actually, he and my daughter were just messing around while I was out of the room, but it was still rather comical.

Since we have been so busy I felt like I have barely seen Jude. I miss him, and promised him I was coming home to just hold him tonight. One of his favorite things is to be in my arms on the couch. He just stares at me, and smiles, which in turn makes me very happy. When I got home last night I noticed his cheeks were very flushed again, and he was drooling a lot. I gave him a small dropper of Tylenol, and guess what? He slept through the entire night.........so I am 100% convinced it's his teeth that are responsible for his sleepless, and my sleepless nights.

If you get a chance please read the article about Jude in the Fort Worth Star Telegram written by Jan Jarvis. I asked the writer to focus more on stroke awareness, and she did a fabulous job!!! Although, the photographer, and I need to have a chat because that angle of me makes me look about 100 pounds more than I weigh. Anyway, please let me know what you think about it. I read the article today with tears thinking about what a journey the past year and a half have been. I am proud to say a journey I have taken while holding my husband, and daughters hands for support, and lending support. I only hope we can continue down the paths to come with courage, humility, and love.


Wednesday, June 24, 2009

If only we could sleep

I am so tired..........really.......I am! Jude is just not sleeping well at all at night anymore, and I am not sure what is going on with him. Mike is great about getting up with him, but once I wake up it takes awhile to go back to sleep. I told Mike that the best thing would to keep Jude up today, but Mike is so tired he wants to sleep too. I know Jude is cutting a tooth so that may be what's causing his odd behavior, and the cold symptoms I mentioned yesterday. Jude also seem to be in a bit of a daze. I was going to try to get him in with the pediatrician today for his check up, but I am waiting until they all wake up.

I was up late last night baking a cake so that contributed to my lack of sleep. My boss has his 50th birthday tomorrow so the girls, and I went in together to get him a very nice cake. I am custom making it, and it should be several levels, and full of baseball stuff just for him. Although, my first cake fell apart right out of the oven, and Mike had to come downstairs to find out what all the fuss was about in my kitchen. I was full of words, and frustrations as Mike looked on with a slight grin on his face. I am sure I mentioned something about wiping his smirk off with a spatula.After cutting a dozen tiny baseballs out of white fondant, re-doing the cake mix, and popping it in the oven, yours truly dove into a hot bath with a glass of wine...whew!

Sometimes I guess I take on to much, but that's just how I am. I enjoy being busy, but sometimes work myself into a frenzy. I then have to take myself back a few steps, and chill out for a bit. So my frustration level probably rose because I had a very busy day at work, then had to pick Jude up from my cousins, off to Costco to grocery shop, fixed dinner, gave the baby a bath, and then worked on the cake. It was a busy day, and mama had a cake baking melt down. Luckily my husband volunteered to do the dishes from last night today. Could be he was a bit afraid of the seething monster covered in flour....kidding of course.

So today it's a bit slower at work, and I am able to catch my breath for a moment. Tonight Emily has another try out for a softball team so that will be another item to run to, BUT we enjoy watching her, and sitting outside on a nice warm night. I am hoping for a solid nights rest tonight, and a baby that sleeps through the night.

By the way, Jude is still doing very well at hitting the button on his fan. I do still wonder about his eyesight though. Any time anything touches his face he laughs, and coos. I guess that doesn't mean much, but he seems to look in different directions where there is nothing to see. I guess only time will tell.

Tuesday, June 23, 2009

Busy ~ quick update

I am so busy at work today that I thought I would share a few pics with you. I will blog more tomorrow, but just a quick update that everyone is doing ok. Jude is fighting a bit of a cold I think. His cheeks are rather flush, but he is still in a good mood. We still plan on getting him checked out by his pediatrician very soon. It's time for his nine month well baby check anyway, and we will find out if he does indeed have a bit of a cold.

Also, just a quick note that a teacher on twitter donated $250 to Emily's Smile Boxes, which is wonderful!!!!!! Her little non profit company is really taking off, and Em cannot wait to now expand to include the Ronald McDonald house (they are our July goal).

So without further delay here are some pictures:

Emily camping with her dad. She is saying "You want me to climb THAT?"
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Emily after her big climb.......a bit tired
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Jude laughing at me last night when I got home (see he had a rosey cheek)
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Jude this morning when I left for work.........after he had gotten up very early.....AGAIN (arms up means he is sounnnnnnnnd asleep!)
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Monday, June 22, 2009

It's the weekend update with Jenn!

It was an eventful, but relaxing weekend. Friday night Mike, and I just hung out together at home watching, "He is just not that into you". The whole time I sat there with a scowl on my face with Mike saying, "but babe that's NOT me!!" Then he would laugh, and tell me that's how all guys are. We had a good time together commenting on relationships, and the movie was pretty entertaining.

Saturday we had grand plans of going out on the town, and getting a sitter for Jude. Since Emily was camping with her dad we would only need a sitter for the baby. I am afraid as the afternoon passed on, our grand plans grew more distant. We took Jude with us to eat a nice lunch out, and then we headed to my cousins house. My cousin Candace was in town watching Sarah's kids while they were on a work related vacation. They decided to get out of the house for a bit so they picked up some chicken, and came to our house. Jude received so much attention that night that he probably felt like he was a celebrity. All the girls were playing with him getting him to smile, and coo at them. His therapist had brought him a fan that has gold tassels hanging from it so when it turned it would catch Jude's vision. With this fan was a giant red button that Jude could hit to get it to turn off and on. The girls tried to help him with this project, but Jude showed them he knew where his button was. He kept hitting it over, and over smiling. I was very proud of him! I believe everyone had a good time, and it was great to spend time with my family that lives so far away.

Sunday was fathers day, and we woke up bright and early that morning. I made Mike some muffins, turkey bacon, cheese, and strawberries, and nicely arranged it on a plate. We then went outside to eat on the patio, and enjoy the nice morning air. Jude wasn't up yet, so we just took the baby monitor with us. We finally heard Jude stirring in his bassinet, so we headed inside to see what he was up to. I peered into his crib only to receive a huge grin with Jude's two tiny teeth showing. He was ready to start the day! We invited my dad, and family over so I cooked most of the day for ready for everyone. It was a nice day of being with family, and I was thrilled when Em finally made it home to share in the festivities.

So I am really pleased that Jude is hitting his red button so often to make his fan go. You can still see the CP in his hands, but even those his fists are balled up he has little trouble with the button. We are still working on getting him splints to teach him to keep his hands open, and ECI comes today. Jude is still having about 10 spasms throughout the day, but they last bo longer than a second. That is a huge difference from the 20-30min cluster seizures he would have prior to the Depakene. What a difference the Depakene has made in Jude's life, and our lives!

Emily's Smile Boxes is officially a non profit company. I just now have to file the non profit information with the IRS so everyone can write off their donations. So we have to save up a little money. Please if you know of someone that would be interested in donating to her cause have them visit www.Emilyssmileboxes.com

Last night Mike and I topped off our weekend with catching up on episodes of, "Fourth and Long" with Michael Irvin. We TIVO the show so we can watch it when we have time. Many people have celebrities they wish to meet. With Mike, and I it's just football players that we would love to meet, and hang out with. Our dream would be to go to the new Dallas Cowboys stadium, and see a game!! We have been lucky enough to meet Michael, and a few others players, and because of this (it was because of a friend of mine) Mike says he will marry me three times over. So to say the least, we LOVVVVVE, Fourth and Long. Last night was particularly thrilling. It seems there were two players that were called into the board room to possibly be cut. Michael took them to the field, and explained that they would be playing each other to see who went home. The wide receiver had to make touch downs, and the defensive back had to keep the WR out of the end zone. They were neck to neck the entire time, and I almost cried for the guy that lost. When the wide receiver hit the ground with the tackling force of the defensive back, his face just immediatley looked crushed. His little heart was broken, and I felt bad for him. I guess that's the way the game works though. I sat there last night watching the plays, the steps, and the movements. I explained to Mike that as much as I love football I never realized how incredibly technical it all is. A person needs intelligence to remember hundreds of plays, balance, rythym, and strength. Anyway, we had a good time, and I highly recommend the show.

Friday, June 19, 2009

What is Fathers day

So imagine that you have the wedding of your dreams, and the possibility of starting a wonderful new life with someone you love. Mike, and I were both married before, and even though the marriages didn't work out we did learn from them. Therefore, we knew going into our new life we would use our past to educate ourselves on how to treat one another. I also knew that Mike wanted children, and probably pretty soon after we got married. He had mentioned his parents were older, and he wanted them to see his children. It took me a long time to get pregnant with Emily, so I was so surprised when I was pregnant with Jude by December (we married in October). I knew Mike had lost several children with his first wife, and was heart broken each time. She had complications that caused tubal pregnancies, and losing another child was something Mike feared. So I knew Mike was going to be apprehensive about anything happening to me, or the baby. I assured Mike that my pregnancy was uneventful with Emily except for her being two weeks past due. I highly doubted anything would be wrong with our pregnancy, and that we would have a happy healthy baby.

So we went into the pregnancy with high hopes, and big dreams. We looked at baby furniture, picked out cute outfits, and planned for our future addition to our family. We were like any other newly married couple expecting their first child, we were giddy with excitment. Then the news came.... how do you tell a man that has lost five children, "Your baby is going to be disabled". How do you explain to him that a doctor has said the life expectancy of the son he wanted so bad is 3-5 years? Mike's greatest moment in life was when the doctor told him he was having a son, and in the next instant they told us something was wrong. I saw his heart shatter into bits, and the worry spread across his face. I was also upset, and bargaining with God, but I was so concerned for Mike.

Over the next few months we went through the most complicated pregnancy imaginable, and a roller coaster ride of emotions. I saw Mike sink into a depression only to be pulled out when they told us they thought Jude had beaten the odds, and might be alright. I then saw Mike hit bottom when Jude had his first seizure at three months. I had been home with the baby alone, and I noticed the seizure activity. It was simple repetitive movements of Jude's mouth, and arms, and maybe nothing anyone would normally catch. Mike walked through the door, and I quietly said, "I think the baby is having a seizure". Mike fell to his knees in front of Jude crying, and rubbing Jude's legs "No baby no" he said, and my heart broke for both my boys. The next few months were intense, and horrible, and Mike didn't want to get out of his pajamas. I watched him battle with his emotions, and watched him worry about how he would make our situation work. I just kept assuring him I would be there for him, and we had to stick together.

It's now six months later, and rays of sunshine has popped out from behind our storm clouds. We are slowly adjusting to our "new normal" life, and we have found our blessing in Jude. Mike says that he thinks Jude was meant to be his all along, and he just needed to right person to be his mom. Mike has told me many times that when he asks for patience, and understanding God has a way of teaching him in a way he never expected. His mother always tells him that "God is pruning you for something special". He then replies "Mother if I were a tree I would now be a STICK!" Which is hilarious, but he also knows that God was pruning him for Jude. We all have our flaws, but Mike is honestly an amazing person. He is an amazing father not only to Jude, but an incredible step father to Emily. He always knows the right thing to say to her, the right way to joke, and is the "fun" dad of our neighborhood. He has grown more as a person in the last year then I think I have ever seen anyone grow. From our situation he has a new outlook on life, and more patience then I think he ever thought he had. I am proud of him as a person, and proudly call my my husband.

So what is a father? A father is a man that can step up in a time of crisis, and love your child unconditionally with all your heart.

A father is the man in this video;

To Daddy from Jude:

Daddy, I love you
For all that you do
I'll kiss you and hug you
Cause you love me, too.
You feed me and need me

To teach you to play,
So smile 'cause I love you
On this Father's Day.
Author Unknown

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"Til Kingdom Come" by Coldplay is on my player at the bottom of this page. It played at my wedding with meaning, and it still plays with meaning. I love you Mike, thanks for being a great dad, and an incredible husband!

Thursday, June 18, 2009

A visit, and a kitten

Good morning, as I told you my cousin is in town from Missouri. So we ventured over to see them last night, and it was a very nice visit. She was very impressed to see that Jude has made so much progress. The last time she was in town she experienced him very doped up from the pheno, and a horrible violent seizure. She kept pointing out that Jude was looking at his hand, and then slowly tried to maneuver it to his mouth. Sometimes we would hear a sucking noise, and look to see he has been successful, but sometimes he just couldn't get his hand to cooperate. I have mentioned before that there are times Jude truly reflects a stroke victim. He knows what he wants his body to do, but unfortunately his body just will not cooperate. Sometimes Jude will get very frustrated, and at other times he seems content with the fact he cannot perform the task. I wonder what lays ahead for us, and him with his frustration levels.

Candace also noticed that Jude is looking in our eyes a lot more. There is a tiny kitten at the house that kept playing around Jude last night. I noticed Jude was following the kitten with his eyes, so I picked up the kitten and rubbed his fur on Jude's hand. Jude had a great big smile for the kitten, and kept following him, and I would say "Kitty". This small accomplishments bring us a lot of hope, and great joy. Jude is still having difficulty keeping his head up, but as I said before he is getting better. We work with him everyday on tummy time. He also sees his ECI therapists twice a week, and we will look into more therapy as well.

My cousin also asked if people are noticing that Jude has issues now that he is getting older. I told her that they do make comments now. I hear "Oh he is so sleepy", or "did something happen?", or they will just stare (Fyi ~ I prefer you ask). I explained to her that I have no issue with this, and that if someone make a comment I tell them he suffered a stroke. It's a way for me to lead into stroke awareness, and Jude hopefully educates a few people with his experience. I really feel like we were blessed with Jude, and he has a purpose in life.

Emily has practice tonight with her possible select team for softball. She also starting hitting, and batting practice this week, and she seems to love it. It's a lot of time out of our schedules, but if Emily has the drive, we will support her. My boss helped me get in touch with someone that has been in select ball for years, and he directed us to the batting/pitching coaches. I am thankful I got this advice because we love them both. In fact the batting coach has his own batting cage at his house, and Emily really learned from him, and he was funny!

One funny, remember how I posted the video of Jude saying "Moooooom". Well my husband gives me a hard time that he isn't in fact saying that word. The other night Jude was laying in his bed just playing away (at 1am!!), and Mike and I were both so tired. Suddenly we hear him fuss a bit, and say "Mooooooom". Mike so nicely says "welp he is calling for you so I am going to sleep" and turns over. Nice!

Wednesday, June 17, 2009

Baby Einstein

Last night I was inspired by another blog, and put a baby Einstein video on for Jude. I decided to play the video on my lap top, and position it close to Jude, because we are still unsure of his vision. Jude seemed to immediately take to the video, and was interested in what was going on.
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I watched him for a few moments, and then I asked Emily and Mike to keep an eye on him while I took a bath. When I came back from my bath, it seemed everyone was interested in the video.
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Jude's favorite part was the two monkey's squealing to each other. It seems Jude really likes high pitch noises, and thinks they are very funny. It was wonderful to see Mike, Em, and Jude so involved in a joint activity. (See Emily's smile boxes in the background? She put together 12 more last night).

I am interested in getting Jude back into his Gymboree music classes. I think the bright colors, music, and social interaction would be good for him now that his seizures are controlled. For awhile the stimulation seemed to provoke his seizures, and we took him out. His therapy at home is going well, but I do think he needs a little bit more stimulation.

My cousin is in town so we are going to see her tonight. I think Jude will enjoy being around the kids, and I may even take him swimming for the first time.

If you get a chance please check out Emily's interview with her school district. Just go to this link: http://www.nisdtx.org/120710426161837123/lib/120710426161837123/Video/index.html
and to the right click on Emily's Smile Boxes.

Monday, June 15, 2009

Bend Jude Bend

I am so tired that I am over tired, therefore I am having a hard time going to bed. Does that make any sense? Sometimes when I am over tired I have a hard time winding down, and today seems to fit that category. So we all know what that means.......... a new blog.

I had to post a quick update because I have noticed a few encouraging signs in Jude lately. He has been looking in our eyes a lot more, and today he stared into my eyes for almost a minute before darting them away from me. I have been picking him up like a 9 month old lately....expecting him to hold his head up, rather than helping him hold his head up. In return have noticed that he is getting more confident about attempting to hold his head rather than just letting it fall. I know this doesn't work for everyone, but Jude seems to be responding. He also wrapped his legs tight around me today when he felt as if he would fall. I had a tight grasp on him, but sometimes his head tilts to the back, and that can make him feel unsteady. I had a flashback to when Emily was a baby, and how she would squeeze her legs tight around my waist.

Tonight when I held Jude close looking deep into his eyes I started to cry. I wondered if there was hope that he will communicate, walk, and eat normally. I have faith, I do! I hope, and I finally let myself hope.... when before I just accepted that fate held a definitive answer of "no" for us. I believe in my little boy, and we are working with him. In fact, my darling girl put together "level" cards of Jude. She has been working with him every night after we work with him. He gets a kick out of hearing her voice, and honestly responds to her. She says "Bend Jude", and he will bend his leg. She says "Put it back Jude", and his little leg goes back. It sounds to good to be true, but I have it on video, and will be posting it soon. Maybe it's the repetition, maybe it's wishful thinking, but regardless it makes this mama happy for a few seconds. It makes me breathe a little easier, and it makes me restore my faith a little more.

My Jude! He may not be what everyone considers normal, but he is my little miracle, and will continue to be. I am a little emotional tonight, but I guess that just happens sometimes.

Oh Sleepless nights

Wow, I haven't been this busy at work in awhile. I am taking a break for a moment, and writing so I can relax for a second.

So this weekend I got to spend a lot of time with my kiddo's and I really enjoyed it. On Saturday I put Jude in his crib to sleep for a nap. Suddenly, the baby monitor started "peep, moo, peep peep, oink," then I heard "Mom Jude is up!". I walked in and this is what I saw:
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Jude's moves were a bit spastic, and uncoordinated, but he did in fact hit the button every time. It's amazing how excited I can get over a simple movement that all of us do everyday without an extra thought. This experience with Jude constantly reminds me how much we as individuals take for granted. I count my blessings everyday, and count Jude's too as he learns more and more.
Later that night Emily was watching Jude while I took a bath. I walked in to find the watching TV together in my bed which was pretty cute.
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She just adores him.

Last night Emily met with the select softball team she was trying out for. I think she was a bit nervous because she didn't walk a whole lot on the way there. Once she met the coaches she ran on to the field to practice with all the new girls. Overall she did well, but she is lacking in skills compared to the other girls. Mike was optimistic, and pointed several things out to me. He said #1. she is younger than the other girls, #2 she consistently stopped the balls even if she didn't catch them which means a lot to a coach, #3. when batting she hit every ball, #4 these practice drills are new to her and she kept up the entire time, #5. they are playing with a larger ball and she still did well. They asked her to come back, and practice with them again Thursday. Even if she doesn't make the team this will be great for building her skill level. Also, Mike pointed out I am a mom and always worried about my little one. I cannot help it.........those fast balls scare me!

Jude handled the try outs very well. He sat and laughed every time the wind would hit his face. I tried to catch his smile on camera, but of course he wouldn't cooperate.
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By the way, the above adorable baby went to bed at 1am last night, and slept until 4am.........argh.

Sunday, June 14, 2009


Well I hurt my back last night lifting Jude's car seat out of the car. So I am rather miserable today, and trying to get myself better. My friend Kel is having a party today at her house, and I am trying to get myself in check to go.

Jude has done pretty well this weekend although he is still waking up at about 4am to eat. I am sure the reason why he is waking up early is because he still won't take baby food. He used to eat baby food and formula just fine, but then suddenly he stopped eating the solid food. We put rice in each bottle so I am pretty sure he is getting enough calories. Jude has been attempting to hold his head up a lot more, and is looking at us in our eyes for a few moments at a time. I started thinking today that Jude's first birthday will be coming up soon. I cannot believe we are rounding a bend to a year since he was born. We will have a celebration of his life, and I am sure Elmo will have to be involved somehow. Jude loves his Elmo doll, and it's the only toy he reacts to. A celebration of his first year is something I think he deserves!! It's been a year of Jude being questioned on his determination. We still have a few months to go, but it's definatley surreal thinking about his birthday.

I have lots of pictures to post from this weekend, and I will put a longer update tomorrow. I am currently watching Jude, and Emily together on the couch. It warms my heart how much she loves him. I know if something ever happened to me she would make sure Jude still had so much love.

Have a good Sunday!

Friday, June 12, 2009

Photo's and tornado's

Here are some shots from the littlest hero shoot I told you about. I get the rest of the shots today. These are untouched so we have some flaws, and goodness I need a tan. Again, a big thank you to Tiarra from Littlest Faces Photography: http://www.littlefacesphotography.blogspot.com/

I love his little curl flying in the wind:
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The Family:
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Also, here is the new member of our family (totally kidding), but my daughter has dubbed him "snakey". He lives in the crevice by our gutters. Like I said yesterday he is non venomous so he is keeping the bugs away. By the way, "Snakey" is about 2 feet long........
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I am glad it's Friday, it has been a long week with claims, and storms. We are working diligently at my office to try to get everyone's claims questions answered. I drove down one of the worst hit streets last night on my way home. It honestly looked like the tornado took a direct path down their block, and then lifted back up. Their houses have huge holes in their roofs, their trees are split apart, power lines are down, and more. They are in my prayers, and I hope their lives are put back together quickly.

Jude has ECI today so I will post a report soon of how he does. Have a good weekend.

Thursday, June 11, 2009

Where are my ruby slippers Dorothy??

I am normally very aware of the weather, and any imminent danger. I have mentioned I have been in two tornado's, and I have a tendency to panic when the weather turns bad. So I was a little surprised when Mike flipped on the TV, and we hear "Tornado warning take cover", for our area. Wha?????? I looked outside, and it was beginning to look a little cloudy therefore I decided to venture out into the front yard.

I turned to look at the sky, and this is what I saw.........not a good site. Nice wall cloud huh?
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I turned around quickly to tell Mike that the sky looked tornadic, and this is what I ran into.....
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I don't mind snakes.......as long as they don't surprise me. This little sucker surprised me! I did however regain my composure, and snapped a picture. I believe it's a copperhead....any guesses? See his tail....he was rather long. I guess he didn't like the impending storms either, goodness knows our dogs didn't. They were going insane in the backyard.

Suddenly the sky turned a very dark eerie green, and I knew what this meant. I went to the back window just in time to see rotating black clouds getting lower, and my heart sank. I grabbed the baby, and yelled to Mike. Mike seemed rather nonchalant until the wind picked up, and it became so loud that we couldn't hear the tornado sirens. He yelled for us to get into the bathroom, and I huddled with Jude in the dark (the electricity went out) praying we would be ok. It is hard to describe how loud the wind sounded, and I was unsure what was going on outside. I pictured roofs being torn off, fences down, and flying debris. When it was over I emerged from the bathroom, and Mike ventured outside. I had let Emily go with a friend to the ballpark. I was worried about her, but I knew a cement structure like the ballpark would be a safe place to be. Mike surveyed the house, but to our surprise we didn't see any major damage.

My cousin called right after the storm. She normally gives me a hard time for being panicked in weather, but she said she herself was "mildly concerned". I got a kick out of that statement. She had been eating at a restaurant, and then began telling me about all the damage around the city. Since Mike sells roofs we decided to hop in the car to pass out cards, and to see exactly what happened. Also, we still didn't have electricity, and I didn't want to keep the baby in the hot house. We were able to get out for a few hours, and keep Jude in a cool temperature. These are some of the sites we saw.

We couldn't go down this road:
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Poor people had their trampoline wind up in their front yard, their shingles were everywhere, and their back roof was ripped off.
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All their trees were blown down.
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That was just a bit of the damage. After passing out cards we headed to my cousins house. Her city got hit worse than ours, and she was without electricity.............and still is today. Which means everything in her fridge, freezers, etc is gone. Her fence is gone, her pool furniture is in her pool, etc, but thankfully nothing worse happened. I told Mike that this was just a small tornado picking up and touching down, I cannot imagine an f3-f5 tornado! I grew up around tornado cellars, and this made me want one.

We finally got back home. I talked with Em and wished her good night (she was staying with her friend), and we luckily had electricity back. We went to bed thinking the storms were over only to get woken up by more severe storms at 4:30, and 5:30. My drive to work was atrocious because all the stop lights were out, so it took me hours to get here. Once I got into work we got hit by yet another storm, and we are bombarded with claims. We have asked our receptionist to stay today to help field phone calls, and we are praying these storms stop soon. I joked that I was building a concrete ark, and it seems everyone wants on it. So a few thoughts for those that lost their roofs, and are still getting tons of rain. I know that must be so upsetting.

The weather seemed to affect Jude last night as well. For some reason Jude's seizure activity increases during storms, and he had a long attack last night. He quickly recovered once the seizure was done, and I rocked him for a bit. He also didn't like the loud lightning in the early morning hours. I am truly interested in knowing if research has been conducted on severe storms and increases in seizures.

Little Face photography that held our Littlest Heroes shoot should have our previews pics on their blog some time today. Crossing my fingers they are good.

Ps. My dad said the snake is a diamond backed water snake, and non venomous....still to big for my taste.....

Wednesday, June 10, 2009

A little hope, a crazy dream, and a great picture

Last night when I got home I knew my little man Jude needed a bath. He isn't that crazy about baths anymore, and pretty much just whimpers through the whole thing (unless I am in the tub with him). So Emily decided she wanted to capture his cute bottom lip poking out on video. Don't worry guys he was not suffering, there are no tears coming out of his eyes at all, he is just playing pitiful. She also did a great job of just capturing his face, and um nothing else. The reason I am posting this video is because I believe he is saying "Mooooom" in one shot. I have heard him say this a couple of times when he was upset, but no one else ever heard it. Therefore, I just chalked it up to my wishful thinking. Last night as we were video taping you can hear Jude, and then you hear me repeat "Mom!" After we finished the bath, Emily watched the video five times repeating "He said Mom!! Write it down, he said mom!". So what do you think? It means the WORLD to me that Jude may be communicating with me. (You can turn the music off at the bottom of my page)

Mike also got this adorable shot of Jude yesterday. He is actually laying down, but it looks like he is standing up in this picture, and he looks older.
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I am anxiously waiting on our pictures from the "Littlest Hero Project", I cannot wait to see them. Also, my friend Roy who is an attorney graciously donated his time to set up a non profit corporation for Emily's Smile Boxes. Now all we have to do is figure out the IRS portion, and a tax ID. I am super excited, that he volunteered his time to do this for Emily. Today she has an interview with the person that keeps up her school districts website. They are going to feature her on their site to stimulate donations for her cause. Right now we have boxes, and a few fillers, but no more donations so we are on hold for a bit. I am sure when the districts article comes out, the Star Telegrams article comes out, and the non profit is in place she will get more monetary support.

So I had to tell you about a strange dream. This morning Jude decided he wanted to get up at 4:30 again, and eat. After that he didn't want to go back to sleep, and we struggled with him a bit. Finally I laid him on my tummy, and he immediately fell fast asleep, so I just slept like that. I curled my arms around him to make sure he was safe. When I feel back to sleep I had a dream that I was in the world trade center. Although, it was set up like a hotel in every capacity except the lobby. The lobby looked exactly how the trade center lobby did prior to 9/11. I remember thinking to myself that we had nothing to worry about because this was after the planes had hit, and the center had been rebuilt. So I carried Jude downstairs to the lobby to get some food, and left Emily, and my cousin in the room. (No worries Sarah it wasn't you....for some reason in was Candace??). Anyway, when I got down to the lobby I looked around, and recognized people from pictures in the magazines after the tragedy. People that had been injured, and people that had been covered in duts. Suddenly I realized that I had gone back in time, and this wasn't AFTER the tragedy, it was before. I panicked and looked at the clock and knew I had just a few moments to get Emily. Suddenly, there was a huge crash and what felt like an earthquake that rocked the building, it seemed SO real. I knew the plane had stuck the building. I knew I had to save Jude, but I had to get back up the stairs to get Emily too. Since she was on the 9th floor I knew I would be able to get to her, and it was only a question of how long it would take to get up the stairs. Suddenly I saw people beginning to flee, but some were going up the stairs, and up the elevators. They were listening to the guards tell them everything would be okay, and to go back to their offices. I was screaming at the top of my lungs "NO NO, don't listen, don't listen, You guys GET OUT THE FRONT DOORS, AND RUN AS FAR AS YOU CAN BECAUSE THIS BUILDING WILL COLLAPSE!!". People began looking at me wondering how I knew the building would fall, and then I realized I still had to get Emily.........then my alarm went off! ARGH! Such, a strange dream, and it was so stressful. I am not sure what it meant. Random chaos?