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.

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.











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.




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





Kayden was truly precious, and Emily just adored her. It was amazing watching Caitlin with her too. Plus Maura is just so nice!


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.










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!

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.

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.

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.

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.

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.

Seizures and more

When Jude went to bed last night he had racked up a total of 14 seizures through the day. I say 14 because those were visibly violent to me, and we could count them. Although, he also kept opening and closing his mouth which is an indication he is continuing to seize, even though we don't see the spastic moves. Jude used to register seizures activity on his first EEG's even when we didn't see anything going on. He is having so many seizures that he is beginning to lose his smile again, and he is rarely laughing. So last night I laid him to bed hoping he wouldn't have any seizures through the night, but he did. If you remember Jude's Depakote was decreased at his last hospital stay. Mike and I believe the medication level needs to be increased again. As I stated yesterday my major concern is that Jude is now losing oxygen, and may need emergency intervention with some of these seizures. That is why the MDCP nurse is suggesting a nurse for Jude during the day. I doubt we will get one because he doesn't have a G button, but they are looking into it. My guess is that if Jude is losing air the neurologist will prescribe oxygen to be on hand if needed. This is all just assumptions though, and guessing where I may not need to guess.

When I look at Jude's MRI the seizures make sense to me because of the clefts in his brain, although they are still hard to watch. No one wants to ever deal with seizures especially in their child. I am positive that the neurologist will eventually want to do another EEG, but we are hoping to put this past next weekend so Emily can have her time she has looked forward to. Speaking of hospital stays, I received the information from my insurance company on Jude's last stay in December. He was there for 5 days, and the total bill to just THEM was over $42,000!!! That isn't even what they billed to Medicaid. That is equivalent to many salaries in America, which makes me wonder what people do who don't have insurance. America needs reform in the amazing cost just to receive treatment. I am SO lucky that we have good insurance, I am not sure what we would do without it. I am also thankful for the skilled doctors, and I know they deserve good pay, but that just seems so extreme. My guess is this was over a $45k stay.

On a more positive note Emily competed in the battle of the books last night. This is my understanding of the whole competition. Basically the kids at her school were given 9 novels to read since the beginning of the year. They were then tested, and put into groups based upon their tests. They then battled between themselves until there was one group standing, and it was Emilys. Those six kids went on to the district championship last night, and after three rounds Emily's team took first place! They were super excited, and I was so proud. There is a picture below of Em with her medal.

Also, I was thrilled to come home yesterday, and see that Jude had gotten his new Tomato chair. He cannot keep his head up in it for long, but it's still nice. Emily wheeled him all over the house last night, and that was really the only time he smiled. It made me happy.

The neurologist just called and wants to see Jude next week. I know Mike has a crazy busy schedule already next week, but this will over rule therapy.