Friday, February 26, 2010

A night out

Once I got home yesterday I was worn out from the entire day, and emotionally tired too. I was pleasantly surprised by a birthday card from my aunt, that had some money inside {thank you Caron!}. So since it had been such a long day we packed up the kiddo's, and went to a much needed dinner out. I enjoyed not cooking, and not worrying about the issue at hand. I also enjoyed listening to Jude crack up at Emily in the back of the truck. She took some pictures of him, but I failed to make it to work with my camera today.

When we got home I headed to a hot bath, and then afterwards fed Jude. I then took Jude, and we went to sleep really early. Mike came to tuck me into bed, and told me how much he loved me, and how I cannot leave him. I told him I have no intentions of going anywhere anytime soon! Mike was great about getting up with the cat, and Jude last night so I could rest. I did get up once though to let that naughty kitty outside.

So today I woke up, and I still feel tired, but I am ready to start the day!! Before I was leaving Jude was awake and had taken over my spot in the bed. Right next to him Scooter had laid down, and was letting Jude run his hands through his fur. Jude would smile each time he touched the cat. He doesn't mean to put his hands on him, but when he did he would smile. I asked "Jude is that your kitty cat", to my surprise Jude would look right at the cat each time I said "Kitty", and would smile. I think he gets it.

So the drop off to Children's Hospital is sat for March 6th. Emily's Smile Boxes is taking 100 boxes, and 40 teddy bears to drop off. We also have 4 volunteers that have signed up, Faith, Addison, Casen, and Madison. Each volunteer will be wearing a T SHIRT, that says "I am an Emily's Smile Box helper because kids CAN make a difference in the world!". Em really wants to work on other kids helping the community. So throughout next week they will put the 100 boxes together, and then they will all drop them off together. I am hoping Children's will give them a short tour of the hospital.

Thursday, February 25, 2010

Prayers

Well turns out my trip to the ER wasn't something to blow off. I went to get my results from my doctor today, and it turns out I have a legitimate heart problem. I went into the doctor's office and she read over all my test results from the ER visit. She wanted to do another EKG in the office, so I was patient, and complied. I fully expected her to come back and let me know that the EKG just registered a fast heartbeat. The doctor came in and sat close to letting me know that the EKG was abnormal. She said it's registering Ischemic events with my heart. I understood exactly what that meant, I said " a loss of oxygen". "Yes" she replied. She said she wanted me to start taking an aspirin a day, and immediately get in with a cardiologist.

I asked her what she thought caused this problem, and she said she was unsure. I explained how difficult my pregnancy was with Jude, and that was the first time I ever experienced high blood pressure. I know it was still a bit elevated after the delivery because my OB had taken it in her office. She then explained my pressure probably never went back to normal, and that it has now caused damage to the heart.

I am frustrated! I feel like we cannot catch a break. I choose to believe this will be nothing serious, but prayers would still be appreciated.



PS. My aunt LOVED Jude's nurse, which makes me feel great.

Which side of the brain?

I have mentioned on here before how the brain is controlled, and Katy pointed that out the other day. The right side controls the left side of the body, and vice versa. So it's confusing to me that Jude's stroke was so much worse on the right side, but the left side of his body works better. In fact the last EKG showed the seizure activity was coming solely from the right side. We have only had one MRI done after Jude was born, they plan to do another one when he is two. An MRI is simply a picture, but it does spread some medical insight into his issues. I am anxious to understand why his left side is working better when the right side of the brain is so affected?

Yesterday when I got home Jude was smile, and giggles. He was very calm, and did not get upset one time, which is unusual. I think the stimulation from having the nurse there, and then Mikes mom made Jude more calm. I put his glow globe down that Anna gave us, and he probably sat there coo'ing at it for at least forty five minutes.
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Like the chocolate Pediasure on his shoulder?

After dinner Emily went upstairs to complete some Smile Boxes that are going to a home that houses abused children in Dallas. She has thirty boxes going today, and Mike was generous enough to make the long drive out to drop them off.
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Now that the boxes are flat she likes to draw on them, I thought this one was really cute.
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So our reservations have been set for DC, and I paid for Mike's airfare. Em, and I were included, but we had to pay for Mike. It wasn't much, and I am glad he will be going. I am a CHICKEN when it comes to flying, so I like him there with me to calm my nerves. Also, I want him to enjoy getting away for awhile. As I mentioned my sweet aunt is going with us to help watch Jude while we follow Ems itinerary. My family has been super helpful, my other aunt is watching Jude today while Mike delivers the boxes. I think she was excited because she is wanting to scope out the nurse to make sure she is okay.

I am off to work.

Wednesday, February 24, 2010

The nurse, and Em

I am feeling much better today, more alive, just a headache, but that's all. I noticed my size 8 pants are starting to fall off of me, so if this is a Thyroid issue, maybe I should let it run for a bit, haha! My cousin, and I joked about that yesterday, but today my pants were even more loose.

Jude's nurse started today, and he received a bath this morning. Mike said Jude was unhappy that no one was in the bath with him, and was wondering where his mom was. Overall the nurse was wonderful with Jude today. Mike said that she plans to quickly set a routine for Jude, which I think will be wonderful. Our little boy is prone to temper tantrums if he doesn't get what he wants. This is good because it's normal age behavior, but he needs to be taught it's not appropriate. It's probably good that Mike is there because I tend to rescue Jude when I see his cute bottom lip poke out. She is also putting in an order to Jude's doctor for his oxygen monitor, spare oxygen in case of emergency, and the suction pieces for his suction unit. I am blessed we found this lady!

Last night Emily received her large donation. A sweet lady Kenni in our neighborhood works for the company who supplied the donation. She has submitted a request on our behalf. It was our first time meeting her last night, and she asked Emily to tell the story of why she started her charity. She said she had read many things on her site, but wanted to hear it from her. So I was quiet, and Emily calmly told her the story of why she wanted to make Smile Boxes. I listened to her stumble of her words, which I thought was so cute, and then I looked and saw Kenni teary eyed. It was touching.
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Despite all her recent big events, Emily is still very level headed. Last night she helped me bathe Jude, and even gave him a foot massage when he got out of the bath tub. She is so sweet to him, and can make him smile when no one else can.
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Mike went to Em's teacher conference today, which I think is great of him. I wasn't able to get off work to go, but Mike was willing to go. I am hoping she gets rave reviews like she did at the last conference. Tonight, I get to go home, and tell her she received an invitation from Daryl Johnston to an event next week. I wonder if she will appreciate the fact it's MOOOOOOSE, like I do! Bet if it was Marion Barber, she would freak out, but her mama is excited, ha!

We also placed our first order for the official "Emily's Smile Boxes Build A Bear". Build a bear was gracious enough to give Em wholesale prices on their bears, and even made a tiny wee tee with her logo. We were going to put these in the boxes, but they are 12 inches long therefore, we had a discussion last night. The end result of the discussion was to give the Bears to the babies, and toddlers who may not currently receive a Smile Box.

I am going to get Mike to take some pictures of Jude with his new nurse. I will post those soon. In addition, my aunt is still helping out too, and our respite, so Mike will be getting some much needed down time.

Tuesday, February 23, 2010

Snow and it's not stress!

First off let me start this blog off by letting you know this is what I came out to this morning.




Really? really mother nature? I live in Texas, TEXAS! Give us a break already, I am sick of snow! I would like to request that my sweet friends up north, shut their back door, okay? Thanks! I am ready for SPRING.


Second, I still don't feel well today, I feel really lethargic. It took everything I had just to get out of bed this morning, and come to work. I made myself a good breakfast so I would try to get some energy, but it didn't work. Although, I did enjoy turkey sausage, with egg white, on a whole wheat English muffin, mmmm!!! I am 100% annoyed now that I don't feel well! Also, I want to explain something, I enjoy being busy, in fact, I love it! I have never been one to stay at home, and not do anything. I love being on the go, and it does not stress me out one bit. Jude's situation can stress me out, and work can stress me out, but that's it. So when I went in yesterday I initially explained to the doctor this might be anxiety related. He said according to the EKG it isn't, whatever that means. So a bit aggravated with hearing people tell me I need to slow down, and let stuff go. I know people mean well, but it's just not warranted. Everyone has different opinions about other people's lives, but in the end it's up to each individual person on what they like, and how they like to live. I like my life, and I am enjoying it right now. I did some investigating on the thyroid issue the doctor mentioned, and all my symptoms line up accordingly. I am leaning that direction, and I have an appointment on Thursday to get the results. If not, I guess they will chalk it up to the virus I was fighting.

Anyway, so I mentioned I came home yesterday, and Jude was doing so well with his therapist. She explained that Jude is trying to push up on his own, and doing very well on the ball. She also said that he has learned "up up up", which we know because we taught him that. Also, she said he is learning "more". When he wants "more" he hits his toys, or gets very excited and wiggles around a lot. Jude is also eating wonderfully, and even took mashed potato's, and macaroni yesterday. The older Jude gets the more I can tell that the stroke caused paralysis on his right side. I think this is the biggest hold up with him holding his head up. He is using his left arm more and more, he focuses more with his left eye, and he will turn to the left more. The doctor mentioned that when Jude gets old they may investigate removing his Corpus Callosum. This would isolate his seizures to the right side of his brain thus leaving room for his left side to develop more. That's years down the road, but it is an interesting path they are talking about taking.

Here is a picture of Em and her cousin Faith at the Phatom Saturday, aren't they pretty?

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Monday, February 22, 2010

Well I mean really?

Well I mentioned in my blog this morning that I woke up from my dream with my chest hurting. I just attributed it to stress, and blew it off. Later in the morning at work my chest started hurting a bit again. Then my stomach got upset, and I mentioned to Jenn at work that I might be getting a tummy bug. A little bit more time passed by, and then my heart started racing. I began to wonder if I was having a panic attack, if it was stress, or if there was something really wrong. I HATE being sick, and avoid doctor offices. There was a time in my life I visited them frequently for anything even a runny nose. Then I found that I had the ability to keep myself well with a healthy lifestyle, and positive attitude. So anyway, Jenn recommended that I run up to CVS to take my blood pressure, it was 157/115!!! I took it four more times not believing the readings. I then figured I might be one of these dumb butts that die in a pharmacy because I didn't take myself to the ER. So I took myself back to work, and explained to my boss that I thought I should be precautionary and have it checked out. When I got to the ER my blood pressure was at 160/115 and a heart rate of 133.

They rushed me right back, and they immediately gave me a bag of IV fluids, and surprisingly it made me feel better. After hours the doctor came in. He said that all my blood work all looked great, which is wonderful news after the platelet issue during childbirth. He then said the EKG showed a fast heartbeat, and palpitations. I inquired if he thought this was stress related, he said he believed there was some stress from being in the ER, but that's all. He thought I was dehydrated (which is crazy because I drink a ton of water), that it might be the viral cold I have been fighting, or my thyroid. It sounded like he was really leaning towards the thyroid. So he took a blood test, and is sending me to a doctor close to my office to get the results. The great news was if was nothing life threatening, and he sent me on my way. I hate being sick, being at the hospital, and having to reroute my day so this was more annoying than anything.

I can tell you it was scary though. I consider myself healthy. I eat pretty well, I am active, and I am young, but my chest hurt so bad that I was nervous. Don't want to do that again!!! I am home resting, and it's back to work tomorrow. Good news is Jude was with his therapist when I got home, and was making amazing progress. I will blog on that tomorrow.

dreams again

We had a nice weekend, which was wonderful. Jude did well all weekend, until yesterday. Mike's mom came to watch Jude for a few hours because I had a Scentsy party, and Mike was painting a salon for a friend. When I walked back in the door Jude was crying, and crying. I took him, and he seemed to calm down for a bit, and we just chalked it up to the fact he needed his mom. Then a little later he started the constant crying again, and I was at a loss. I gave him some Motrin, but he kept crying, so we tried Mylanta. I then tried some teething gel, and I am not sure which medication worked, but he finally calmed down. I then had to hold him the rest of the night, because he would have no part of being put down. Then I about ten I gave him his nightly medication, and he threw up everywhere!! Although, it was his strawberry pediasure that I fed him about five so I think his tummy had been hurting. He then just went straight to sleep, and slept all night long. He woke up this morning in smiles, so whatever it was that caused the issue seems to have disappeared. Jude's nurse starts today, and I will let you guys know how that goes.

So I had two strange issues with dreams last night. I seem to have the same dream over, and over, so I am going to share it on here to get your Freudian opinions. I think I mentioned it before and everyone just said I was nuts, ha! So rather than calling me crazy I am looking for a dissection of the dream itself. I have had this dream so many times that I know the exact route of the streets in my dream, and various people show up in it. Let me preface with letting you know that when my grandparents were alive they would travel to California every summer. Since I lived with them I have been with them twice, and driving all that way was a lasting memory. So in my dream I am always with my grandparents, and I have 16 hours to make it back to DFW to be at work the next morning. I remember being really stressed because I know if I don't make it back I will lose my job. On top of that we have all brought separate vehicles, and I have to drive back alone. I remember being really upset because I don't want to drive back by myself, and I know I have to cross two large suspension bridges to get back home. I hate suspension bridges, so therefore I am very stressed out because I don't want to cross them alone. They are man made twists of metal and scare me to death. So in last nights dream I was sitting on the side of the road crying because I didn't want to cross the bridge, and I was hoping my grandfather would show up. Instead Mike showed up, and told me I was being ridiculous, and needed to get my butt across the bridge. Then I woke up.

After that I went back to sleep, and had a dream my heart was in serious physical pain. I woke up, and realized I had incorporated a real event into my dream. My heart was hurting so bad, and it wasn't like heartburn. I felt like someone was squeezing my heart, and it was just painful. This really scared me, and I woke Mike up. We were both concerned, but soon the pain subsided. I have never had issues like that, so I guess it's something I eventually need to get checked out. Maybe it was just stress from my prior dream? I am normally pretty healthy, so it was a bit of a shock.

So what's the verdict? Do you have any reoccuring dreams? My grandfather always had one that he was on an elevator trying to get to the 13th floor, but everyone knows there is never a 13th floor.

Saturday, February 20, 2010

Blogs

The below blog, is why Em colors all her boxes, thinks of the kids, why I ship so many boxes on lunch, and why we spent countless hours working on her charity. THIS makes it ALL worthwhile.........

http://jesusandesmeralda.blogspot.com/2010/02/emilys-smile-boxes.html

I love the smile on their faces, and Emily loved it too!!! It truly MADE our day seeing the blog, but I wish they didn't have need for one.

Today, my aunt and cousin made it possible for Em, and I to go to Phantom of the Opera. We went with Sarah, Faith, myself, and Em. Faith's birthday is this weekend, and mine is next weekend, so it was an early birthday gift. My cousin bought us a FABULOUS lunch, and then we sat through my favorite musical. I got a little teary eyed that my daughter was there experiencing something I loved so much. It meant even more that she cried at the end. She said that she felt for the Phantom because he was different, and didn't get the girl. I explained that even though that's true, the phantom also STALKED the girl, which is not attractive. She giggled, and agreed that wasn't right. Em then decided to stay the night with her cousin, Mike went to our friend salon to paint, and I am with Jude alone. I AM ALONE, and it's fabbbbulous! I have a glass of wine, some veggies and cheese, and Jude on my lap. I am just relaxing, and I needed this.

My friend Katy at Bird On The Street, wrote a blog on jealousy. I think it's worth reading, http://birdonthestreet.blogspot.com/2010/02/jealousy-jane.html, Sometimes we are all entitled to be a bit jealous, and it's okay to work through those feelings. Well done Katy!

I am off to enjoy my night of relaxation.


Thursday, February 18, 2010

Nursing, and smiles

Mike has been massaging Jude, and stretching his muscles out each day. Since doing this Jude seems to be more limber, and we are hoping this helps his reaching ability. He is using his left hand a lot more, but isn't reaching to grasp yet. He bats at my face, and swings his arm around a lot.

We heard today that Jude qualified for 20 hours of nursing a week, which is wonderful. The nurse will start Monday from 9-1, and this will help Mike. Due to his seizures, and the other issues we have been having the insurance company approved everything. Which means my personal insurance covered it, AND the Medicaid back up also approved it. We should also be getting an oxygen meter to monitor Jude during the seizures themselves. Now with that being said the nursing was approved, but we are jumping through some huge hurdles to get the Boost VS Pediasure, funny how that works huh?

I have sent off a large amount of Smile Boxes this week. We have new flat boxes, and Emily is spending time coloring each one of them, it's really cute! I am quickly beginning to realize that the demand for Smile Boxes is out running the supply. Even with Em's grant we will be falling short very soon. We have 250 boxes to put together to drop off in April per my prior blog. Now multiply 250 boxes times $7 a piece. See where I am coming from? That in addition to the large amount of requests we are getting to ship boxes. Also, we have kids in other cities, and states that are wanting supplies to drop to their local hospitals. It's so AWESOME to help out these kids, so I am hoping we get some corporate sponsorship soon. I am still waiting to hear back from the radio station, and I am hoping they don't forget about us.

So guess who can make Jude smile likes this?
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This girl!!! Em can always make Jude smile!

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Tuesday, February 16, 2010

Look at me hold my rattle!



video


I am very proud of this video! Jude cannot pick the toy up, but he can grasp it when it is put in his hand. Notice he looks at it, and smiles. I am just thrilled with this!!! It's the little things :)



See my teeth? I am a P-I-R-H-A-N-A!

Monday, February 15, 2010

In home therapy

Last night Mike worked with Jude some trying to teach him to keep his head up. He is really responding to us saying "up up up". He will try his best to lift his head up, but it soon falls. Here are some pictures.




Mike called me earlier, and said that in therapy today Jude grasped a rattle put in his hand, and brought it to his mouth. This is a large accomplishment for Jude, and I am very proud of him. He also at a half bowl of scrambled eggs yesterday, and ate almost 30 ounces of Pediasure.

Things seem to finally be running so much smoother in our lives. Besides having a cold again, everything is working out. Yes we are hesitant to accept life is good right now, but we are enjoying it. Work is good and steady, Scentsy is selling well, and people are hosting parties. Jude is in good health, and seems to be learning more, and our funds are finally getting back on track. In addition to all that wonderful news Emily has all A's and 1 B, and her smile boxes are taking off. Today Emily's Smile Boxes received a $1500 grant from Enterprise Rental Car. This is such a blessing! Our funds were getting so low, and we needed more quickly. While Emily is at school I am receiving a plethora of requests to mail smile boxes. This is wonderful, but we desperately needed funds to make this happen. I cannot WAIT to tell Emily that Enterprise is coming next week to give her this generous donation, and she gets to hold a really large check. I also spoke with Emily's school, and they are holding a drive right now to obtain crayons, stickers, markers, etc. I then talked with them about having the other kids help put the actual boxes together. One of Emily's goals is to inspire other kids to help out, and this will be a great way to do that. They agreed to have a Smile Box making party where all the kids put together smile boxes in the cafeteria. I plan on buying flat boxes, and they will be coloring the outside of them. Our goal is 250-500 boxes this time. In addition to allowing the other kids to put the boxes together, we want to select 7 kids to drop off 50 boxes a piece at selected hospitals. They are going to have shirts that say, "I am an Emily's Smile Box helper, because Kids can make a difference". I have already had a few volunteers for this project. In addition to Enterprise, Emily has also heard from Build a Bear, Khols, and a few others. We are more pleased than you can know. We shipped off two more boxes today, and we have several more to ship tomorrow. We have had so many requests to ship that I started a UPS account today, sure made things easier! It's sad there are so many children that are sick, or affected, but I am happy we can brighten their day a bit.

Have a good week.

Friday, February 12, 2010

Snow, standers, and tears

Well if I thought the light dusting on my car that I posted yesterday was a lot of snow, I had no idea what a lot of snow was! Probably still don't, but nine inches is more snow than I have ever seen!!

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Bigsby searching for a place to do his business. This is before the snow accumulated so much we would just sink, and we couldn't see him.
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We put Jude in his new stander last night, that Our House loaned us. I must get Jocalyn their loaner stander back to them. Anyway, he was alright at first until Mike cranked the lever to stand Jude upright. That he didn't like much. We didn't leave him in there for long, because we didn't want the stander to be associated with an unpleasant experience.

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So last night Mike and I were watching Home makeover again. He was really interested in this one because it was set in Hawaii, and he loves Hawaii. He has promised to take me there someday, and I hope that can happen. We were chatting about how we had these big plans to go, but we have had to delay that goal. It's not that big of a deal because we want the best for Jude, and to get financially stable again. The big thing that got me was at the end of the show, and I have no idea why. It was one of those things that affects you, and you didn't expect it to. They showed the couples baby girls room, and it was a beautiful pink with big hibiscus on the wall. Mike said "Wow, that is gorgeous". I said "Yep if we had a little girl I would want something like that". He just replied "We cannot have any more kids", and tears streamed down my face instantly. It was just something that happened, and I couldn't control it. Mike started tearing up, and came over and hugged me telling me not to cry. I am not sure WHY I responded that way. Our plan was to have one more baby after Jude, but I have accepted we cannot, WE both have. If our house was paid off then maybe, but it's not so we both accepted it wouldn't happen. Plus, who knows how my health would have been through another one. Plus would I WANT to go through that again?? I guess I just still held out hope somewhere that we would try for a little girl, but I knew we couldn't. Anyway, I quickly recovered, it was just an odd reaction to something I already knew.

I am listening to what sounds like someone stuck in the snow in our parking lot, so I have to go check things out. Have a good day!

Thursday, February 11, 2010

Snow snow snow

This is what I woke up to this morning:
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No I don't live up North where the blizzards are, I live in Texas. I am blaming this snow for my earache, and sore throat. This year has brought the most snow, and strangest weather to our region. One day it's 70 degrees, and the next day it's 32 with blizzard like conditions. I really have to have a talk with that groundhog! It's suppose to keep snowing all day, and where I live may see 8 inches. EIGHT? Are you kidding me? Emily went to school today, but my prediction is that the district will release at 10 so the kids are countable for a full day. I think they have run out of snow days this year. I was hesitant about putting Em on the bus, but it's suppose to be worse tomorrow than today. Plus the little old man that drives her bus goes very slow, and has their best interest at heart. Although, my drive to work proved challenging, not due to the roads, but the sheer amount of snow falling. I couldn't see very well, and I couldn't find the lane on the highway. I am hoping my boss let's us leave about 3 so I can head out before the sun sets. It took me over an hour to get to work, so that would give me plenty of time to head back to the winter wonderland I currently live in.

Jude woke up laughing today before I left, and I talked to him a bit while he rested in his bed. It was good to see him in great spirits. Mike is working on getting Jude on a regular schedule which includes therapy time, patching his eye, and being in his stander. I am sure Jude will be resistant, but it's time to get him in a routine. Last night, Mike and I watched a recorded episode of Extreme Home makeover. The little girl had holoproencephaly. We had heard that term before because they did a head sonogram on Jude prior to the MRI, and they mentioned this term. It turned out that is NOT what Jude had because he had suffered the stroke, which caused Schizencephaly. Although I had researched Holo, and was so upset by what I had read. Although, this little girl was disabled, but happy, still alive, playing with toys, and could make sounds like "Ba". Mike seemed disturbed by watching this show, and said it just spreads reality on our situation. I thought about what he said and then told him that the reality of our situation set in a long time ago, and that all I saw was hope looking at that show. If this little girl who has more challenges than Jude can grasp and hold toys, make noises, etc, so can Jude! I think he may have seen the show in a different light because he called me this morning telling me he believes Jude can accomplish so many things as he grows. I agree!

Well wish me luck getting home today.

Tuesday, February 9, 2010

Therapy, and handling comments

Yesterday at lunch Jude went to see the speech, and physical therapists at Baylor Our House. Speech therapy went amazing, and Jude is mimicking us by opening and closing his mouth, when we talk. He wants to talk back to us, but has not yet found his voice. Although he is saying ....... mum (he knows his English heritage), agee, da, and ahhh. He will talk more when he is on his side, in a dark room, without noise. He is also making progress when the speech therapist places her finger inside his mouth to simulate a spoon. Rather than clamping down on her finger he allows her to touch his tongue, pull forward, and then pinch his lips. This is encouraging.


During physical therapy, poor little Jude got very upset. The physical therapist explained that even though Mike massages Judes limbs every morning, he is very tight. In other words Jude is in pain, and there is a reason for his tantrums. She explained that he feels like a football player that has been working out constantly. So Mike finally admitted to me that I was right and he must give in, and take Jude to my cousins friend Judd, and Pam who are chiropractors. They are amazing, and Pam was the one who naturally turned Jude from a breech position to ready for birth without any medical intervention. So he will be contacting them soon.

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Poor Jude:
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Also, Emily received some mixed responses to her huge award from Prudential today. I let the comments come in regardless of what they were, and I watched how Emily handled them. She received so many wonderful comments from generous people who knew this major exposure could only further her charity work. Although, children are young, and Emily heard some snide remarks. I sat back and watched her friend tell her she was jealous, and I wondered what Emily would say. Then she spoke.. "I would trade this in a minute if my brother was healthy". She blew me away! In addition to that she received a text from a friend who said she was a tad bit jealous. Em just responded "I only do this for the kids not the awards" she then told her friend she needed an award too for being so wonderful. Em means it too, and that makes me happy because it's me that nominates her, teachers, or strangers, not herself. Many kids don't realize that Em spent over a 100 hours last year working on her project. She went to fundraisers, she walked her neighborhood, put together boxes, toured facilities, wrote countless thank you notes, and more. On weekends when many people were having fun in the sun, Em was walking the halls of hospitals. I am proud she has won this award, and I only think it will further her goal to grow her charity Nationwide. She also has a goal to now have boy, and girl boxes, vs generic boxes. The real question here is if I can keep up with her giving heart.


Now let me also assure you that little miss giving also has a naughty side. Tonight she threw a really good tantrum. She was so angry that I told her she needs to be neater she threw down her unopened yogurt smoothie. Said yogurt smoothie exploded upon impact and coated me, Mike, the walls, the couch, and more. I initially got very upset until I saw Mike polka a dotted in pink liquid, and then we all laughed. Then Em got a swift kick in the rear (just kidding.......well kinda), and we talked about why we shouldn't jump to irrational behavior.

My daughter

Is a pretty cool person: http://finance.yahoo.com/news/Texas-Top-Two-Youth-bw-3732577783.html?x=0&.v=1

Jude is very happy to be home. He is smiling, eating, and his eyes are very bright. He listened very quietly last night when I turned on some music that was in a book. It played "This little light of mine", and "Deep and Wide". Jude would get very quiet, turn towards the music, and his eyes got very big, and bright. He seemed to really love the tunes.

A big thanks to Anna for the wedge she gave us, it is working wonderfully for Jude. I am keeping this short, because I am a busy bee at work.

Monday, February 8, 2010

A little queen

This mama, this mama right here is EXHAUSTED! What a whirlwind weekend of fun. Jude did very well this weekend, lots of seizures, but he still did well. Once we got into town on Thursday we stopped and had lunch with Anna. I mentioned that she explained to me about the possible loss of our children in a way I could understand. I had someone ask me to elaborate on that. She explained that if we don't walk or stand up straight, that our bodies will not grow the way they are suppose to. If they don't grow properly then they will eventually have some sort of organ failure. In Katy's circumstance it was kidney failure, and I can tell her mom misses her a great deal. We have a stander on order for Jude, and we hope that it will help, but he still has very little head control. Anna, and her daughter Kristi came every single day to watch Emily. They were so patient with how busy we were, and it was such an honor to meet them both.

After lunch we ventured to our hotel in Round Rock, and we got all checked in. Mike brought his PS3, and hooked it up to the hotel TV, which is hilarious! He had also gotten a new game, and he was in his version of boy heaven. He couldn't think of a better vacay then a hotel room with a PS3, and no one bothering him. So he kept Jude, while I went and toured around the hotel. On Friday, Em and I got up, and set up our tables for Scentsy, and Smile Boxes. Mike even helped Em out by putting up her lollipop tree. People would donate a $1, and get a lollipop throughout the weekend.


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After we set up our tables, Emily had to run to registration for the pageant itsself. There we finally got to meet Maura, and her daughter Caitlin. Maura and I met through email, through my blog. Her daughter Kayden also has special needs. Emily, and Caitlin immediatley became good friends, and they were pals all weekend. They cheered each other on when each of them competed, and they spent lots of time chatting together.


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As you can see Jude also made great friends with Kayden. I think she may be his girlfriend now.


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Kayden was truly precious, and Emily just adored her. It was amazing watching Caitlin with her too. Plus Maura is just so nice!
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On Saturday we ran all day long! Emily competed in casualwear, Valentines wear, and Crown Jewel wear. Crown jewel was suppose to be your interpretation of what you think that meant. So we made Emily into an adorable miner with a pink hard hat, a fake pick axe, and a jewel bucket. She walked on the stage to "Heigh ho Heigh ho" to Snow White, and it was a hit. She had so much fun that day that she just fell into bed.

Sunday she competed in natural beauty. She went to hair and make up to receive very light make up for the bright stage lights, and to have her hair styled. She felt so pretty that she kept staring in the mirror smiling at herself. She wore a dress we found off the rack on sale, and a friend took it in for her. She honestly looked breathtaking, and she was amazing on stage. She received straight tens with 14 check plus marks.


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Sunday afternoon was crowning, and I think Emily was a bit nervous, but excited. They first introduced their presidential service award winners. They had 6 girls that qualified due to community service work, but Em received the gold pin. In addition to that she also received the pageant "Diamond" award which is based on community service. They gave her a very large crown, and banner. After that Emily made a speech to the whole ballroom about why she started her charity, why she continues it, and how to donate. She didn't leave a dry eye in the house!

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After she made her speech, they began calling out winners at the pageant. There were almost 100 kids competing, and they were announcing the top 15........Em didn't make it. She realized that she couldn't get the ultimate winner award if she wasn't in the top 15. I looked at her and said, "Em, we came here for your charity, the pageant was just a bonus. There are kids here that do this every single weekend and are trained for this, you are not. Be thankful for what you have received ok". She smiled, but I could tell she was a little let down because in her mind she had done very well, I think it was a good lesson for her. She her age group was called to the stage, but no one was crowned. Emily, and I both understand that this meant she won a bigger title. So we waited with our breath held while they started calling out the big winners, and we waited, and we waited. Then the emcee said "The 10 and up beauty supreme winning a beautiful crown, and banner, and a ring worth $1250 isssssssssss...............EMILY". OMG!!!!!!!!! She went running to the stage, and had the biggest smile ever! It was so big that the people behind me were laughing because she was so excited. My heart was happy for her. She received the highest scores in facial beauty. I will post pictures of her in her crown when I get them back. Caitlin won her age division so both the girls came home with crowns, and more. Emily's ring is gorgeous, and we will be putting it in the safe for her when she gets older.



After crowning we ventured back home only to find another amazing surprise. On our door step was an express package, and inside of it amazing news. In August Emily and her principal had filled out several essays for the Prudential Spirit of the Community award http://spirit.prudential.com/view/page. Prudential picks 2 children from each state that are named the top youth volunteers for the year. Out of thousands of entries........Emily was chosen! I couldn't believe it! She will receive a $1000, a silver medal, and a trip to Washington DC. The trip will include a national awards banquet where 10 national honorees will be named. Emily is up for consideration for this award. The winner will receive $5000, and $5000 for their charity, and their school will receive a crystal trophy. We are so honored and humbled!!


I was concerned all this attention may take the focus off Emily's charity so I went to chat with her. When I told her she won, she was thrilled, but then she said "I don't understand mommy, do other kids not help out people too?" I said "Yes Emily, but sometimes not as much, or they don't know how." I also explained that in this situation they looked at many kids that helped out, and she was just lucky enough to be chose. So my sweet girl I thought would be influenced by all of this said "Well I am going to use this award to tell other kids they can help out too, and make a difference". She has a good heart! Emily and I both get to go on the trip, and we are going to take Mike and Jude with us. It will be so exciting, even though I hate to fly!


Jude was visited by Angels of Care today to see if Jude qualified for nursing. While there Jude had several small seizures. He also will be suctioned out now, and they are ordering a oxygen level reader for Jude. Therefore, they believe he is going to qualify, which will be nice for Mike. He has therapy tomorrow, and I will let you know how that goes.


Tonight Emily is speaking at the Lions Club meeting in hopes of receiving more donations for her smile boxes. We also shipped three boxes to a family that needed them in Illinois today. You might say a prayer for their son who is battling Leukemia.


Friday, February 5, 2010

We are here

We are here, and Em is currently jumping on the hotel bed. Jude is in the other bed watching her, and giggling. We had a great time last night catching up with our old friends Cristina, Michael, Valerie, and Dane. We ate great food, and toured the hotel.

Although prior to that we had met Anna for lunch, and it was a wonderful visit. We talked a lot about her loss of Katy, and it just broke my heart. She also explained why children who cannot walk, etc eventually have organ failure. She put it in a way I could relate to, and understand. Mike and I both explained that we understand our time with Jude may be limited, so we are grateful for everyday. It was comforting having someone to talk to about issues we can understand. We get comments that we shouldn't ever discuss losing Jude, or him not walking, but it's also reality that this could happen someday. We don't like to think about it, but there is no shame in saying we are thankful for every day we have Jude. I then pointed out to Mike that we should be thankful for everyone in our life regardless of special needs, or not. You just never know. Anna and her daughter were so nice, and gave Emily a little necklace to wear this weekend. I think Emily really took to Anna.

Today we set up Emily's smile box table, and my scentsy table. We register Em at 2, and then she competes in "commercial" tonight. They give you the choice of commercial, or talent and Emily chose to do a "Emily's Smile Boxes" telethon. I thought that was pretty cute.

Jude is doing fabulous, and has already eaten 8 ounces of Boost today.

Wednesday, February 3, 2010

and we are off

It's as if Jude truly understands that we are leaving to have a weekend solely for his sister. He is eating more, limiting his seizures, and sleeping so well. I am both grateful, and in awe!

We have had so much help to get us to the point of having this weekend away. I would like to thank everyone that participated. From my aunt who took Em's dog, to our neighbor that is watching Mike's darn terrorists, Cristina that has helped Em so much, to the director that made all this happen, and our family that has supported us. My cousin even promised to get Em to her function if Jude got sick.

We will arrive in Round Rock tomorrow about 2pm, and we are having lunch with Anna. I am so excited! We will get to meet Maura on Thursday night or Friday. I am thrilled to have the chance to meet other special needs moms who can relate to our situation, I feel truly blessed. We will then get to see old friends, have dinner out for a change, and just relllllllllax.

Have a good week everyone.

Tuesday, February 2, 2010

Forgiveness

So last night I sat down to watch my recorded episode of Extreme Home makeover. I love that show. I know the houses are over the top, but I still enjoy watching it. This episode was about a mother who had her child kidnapped merely 50 feet away from her. My heart broke for her, and I admit this is a huge fear of mine. I watch Emily like a hawk, and I know I should let her go a bit. At one point during the show they were talking about the mothers charity work. One worked hit the nail on the head when he said she works so hard because she hasn't forgiven herself yet.

I enjoy working, and have always delved into charity work, BUT I do not I have not personally forgiven myself yet. I know Jude had a stroke, but I have mentioned before that there is always the looming questions mothers deal with of "What did I do wrong". Eventually I will work through my emotions on that, but as of now I haven't yet. The show was emotional, and it touched me.

Tomorrow is my last day at work before we leave for Austin. I get to meet Anna who recently lost Katy. I also get to spend time with Maura who has Kayden who struggled with open heart surgery. Maura has followed my blog from the start, and I feel like I know her already. Her older daughter is doing the pageant with Emily, so we will get some great bonding time. Mike and Jude are coming along to support Em, and we are looking forward to our little trip away. I will update how Emily is doing when I get a chance. She starts competing on Friday night, and crowning will be Sunday. She will received her community service and presidential award for her charity on Sunday. Em doesn't like the attention she receives for her charity work, but she understands it's a great way to spread information about what she does, and therefore help more children.

Have a nice Tuesday.

Monday, February 1, 2010

Seizures are down

Ever had one of those days at work that you are so busy that you aren't sure which project to tackle first? Welcome to my day! It's been great though because the day has flown by. It's now pretty slow so I have a second to update. I didn't update all weekend because I had two large Scentsy parties, and I am so grateful to the girl who hosted them.

Jude actually had a very good weekend, and I think we found the seizure culprit. Jude had been battling congestion for a few weeks, and per the pediatricians orders we were giving him Benadryl. We cut out of the Benadryl, and we are now back to 3-4 small seizures throughout the day. He is still eating well taking 26 - 30 ounces a day, but it's still not enough. The nutritionist brought us a bunch of Boost today, and we are hoping Jude likes it. It has more calories than the Pediasure. She also said Jude had lost a pound since his last visit. This is a concern, but she said she isn't to worried since he was so sick, and in the hospital in December. It's still a sign the G button is looming, but we have accepted that eventually Jude will need one.

Jude had a few cry fits this weekend, but he was quickly quieted when I picked him up. Mike got a weepy look on his face and said he thinks Jude has outgrown him, and that he just wants mama. I assured him that was not the case.

Emily is so excited about this weekend. Poor girl woke up with pink eye in BOTH eyes on Saturday, and she was in a panic. I brought out the antibiotic eye drops I had, then alternated boiling cotton balls in sea salt, and tea bags on her eyes throughout the day. By the next day, it was GONE! I now know the cure all for pink eye. I reassured her everything would be just fine. We will start packing the kids tonight, and going through our list of everything we need. I also have to hit the grocery store after work, which I loathe.

Emily received a request this weekend to be a "celebrity" waiter at a black tie gala in Dallas. The gala will benefit the child abuse prevention center of DFW, http://www.excap.org/Home%20Page. I emailed the requester and advised that Em is only 11, and not really a celebrity just a little kid, but they still wanted her. Emily got a huge kick out of being asked, and is planning on attending. Therefore, we are hunting some well known celebrities for them, because we would like to help their cause. We also thought it was so cute they included Em. They said they will give her some small tasks to do. It's April 17th in Dallas, so if you know of a celebrity that would be willing to donate a night for a good cause, let me know.