Sunday, May 30, 2010
I have to say that I respect the fact that Emily didn't flinch when I asked for the "handicap" fitting room. When Jude needed to be changed in said fitting room she just smiled, and when Jude needed to be fed she just lengthened her time when trying on clothes. She is a trooper, and so is Jude. At one point Jude stuck his fist out of his wheelchair so that every passerby was hit. I mimicked a babies voice and said "If you girls are going to make me shop I am going to hit every sucker that walks by my chair", and Emily just cracked up!!! The lady in front of me that heard my impression, also laughed.
I ignored my phone today so I could just spend time with my kids. The minutes raced to hours, and I never even noticed. Soon five hours had passed, and when I told Em she said, "it's seemed like it was only twenty minutes". Soon we knew it was time to go, and headed towards the truck. I saw our big white truck sitting in the tale tale blue handicap sign spot, but that didn't save us from the downpour of rain that came out of nowhere. I loaded Emily, and Jude, and then I tried to figure out how to break down the kid cart wheelchair, as I was soaked to the skin. I laughed as I got into the truck ringing out my hair. Emily said I looked polka dotted with the large rain drops. I smiled at her with a big smile, and just patted her leg. I am very proud of my girl, and proud of Jude too. I am also proud of myself for figuring out the kid kart. I normally just strap it into the back of the truck, but now I knew how to actually break it down.
On our way home we picked up Emily's cousin Faith. They are now upstairs watching a movie, and I am about to slip into bed without anyone noticing. Oh let me just add that I have started Jude on 1.5 MG of melatonin! This lasts from about 10-4, and it is a God Send!! The doctor said we should slowly work up to 3mg. Since the 1.5 has worked so well, I am sure the 3mg will work even better. Maybe I could actually sleep through the night again?? I am thankful for the great advice from our neurologist, friends, and readers. I am still a bit delirious from lack of sleep, but it seems that I will be caught up soon!
Friday, May 28, 2010
Welcome To Holland
by: Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.*
©1987 by Emily Perl Kingsley. All rights reserved
I came home last night, and this is what Emily, and her friend Madison were doing with Jude. He liked Maddie's hair in his face, I guess it tickled. Look at his little feet going crazy, I call them happy legs! Madison was playing with him, while Emily was the videographer.
I just called to check the status of the nurse, but they have not made a decision. I was told they have until June 24th to finalize everything, it seems like ages. I wish they could spend a day in our shoes, and they would decide in our favor. Until that time I may be looking for someone to come to the house to relieve Mike during the week. I tried it once before, but I never followed through. My aunt helps a lot by coming out a day a week, but I think I need to increase the hours Mike has help. I am still praying that they will let Charlotte come back.
So I would love advice on an issue. Jude keeps pulling his legs in strange positions under his body while he sleeps. I have been told this is common for babies with neuro issues. This eventually causes pain, and Jude wakes up crying, and is difficult to put back to sleep. Do compression shorts work, or the special beds I mentioned? Any advice would be great.
Thursday, May 27, 2010
Me: No Jude no up right now
Me: No Jude, it's to early there is no up right now
Jude: (whacks me in the face) uhhhh!
Me: giggling, Jude don't hit mommy
Me: Yes, mom
So I picked him up, and then put him back in his bed turning on his barnyard. We then heard peep peep, moo moo, giggle giggle, uhhh uhhh, for about twenty minutes.
It was a cute morning.
Wednesday, May 26, 2010
Anyway, Mike is going to start trying to feed Jude baby food again in addition to his Pediasure. Since Jude has been more vocal lately we think he may be more accepting of solids. Jude also had therapy today, and I am anxious to get home to hear how he did. He had both speech, and physical therapy. I am wishing we could increase his therapy each week at Baylor. I feel like things are getting a bit stagnet, but that could just be me. I know Baylor offers swim therapy, and we are looking into that.
Jude is now 21 months, and I cannot believe it. With his recent improvements I am hoping that year two will be full of miracles. I have been told that hippotherapy can help children with little control, but I am unsure. I am not sure how they could ride a horse without neck control, and it's something I will have to educate myself on.
Short and sweet today, I will blog more tomorrow.
Tuesday, May 25, 2010
I miss her.........I hope they decide we can have her back.
Monday, May 24, 2010
Emily and her fourth grade teacher Mr. Chaler (right), and her fifth grade teacher Mr Latwon (left). These men have both been so influential in my childs life. They are such wonderful role models for her.
Reality Steve from the celebrity waiter gala came to help out too. What a great guy to devote his Sunday to Emily's cause. You can see his blog at www.realitysteve.com.
Our good buddy Fleck was there helping out again. She is always on hand for Emily's Smile Boxes. She has been to almost every drop off now, and attended several functions.
My grandmother came in from Missouri, and my aunt Docia drove her over, and they both participated. It was very hot outside which means we are approaching our famous Texas summer! Our crayons were getting a bit melted, but all in all it was a great day! After we finished the fundraiser Emily and I loaded up 100 boxes, and three bags of teddy bears, and headed to Scottish Rite. I have no idea how we fit so many boxes in our car, but it somehow worked. Mr Chaler is taking the other 100+ boxes, and bears to Cook's Children's Hospital today. We are just thrilled so many children will have a smile on their face. Thank you so much to all those that helped support our cause this weekend, it just means the world to us!
Emily unloading the car at Scottish Rite
She filled up the whole security area inside the hospital.
Then it was back home to have some "kid" time. We decided to go to my cousins so Emily could swing, and we could have a nice dinner with the family. Jude was so excited he even dressed up in his swimwear.
While there Jude kept straining forward when I put him in his wheelchair saying"Uhhhhhh". We realized he really does know UP, and is vocalizing it to us. Every time I picked him up when he said "Uhhhh" he would just smile. Our baby is communicating in his own way, and it's awesome!
Friday, May 21, 2010
So I have a video for you that I have been meaning to post. If you have read my blog for awhile then you know who the terrorists are. If not let me explain, when I married Mike I gained three step dogs, all Jack Russell's. They are Spot, Lady, and Jack. Individually they are wonderful, but together they are ROTTEN! If you think I am being vicious then you can wait for some comments from my friends who personally know these little heathens. Of course I call them that, but every time I come from the store I bring them soup bones. They have a fancy dog house that Mike built for them, but they do have to stay outside. Keeping Jack Russell's inside can be cruel, and they like the outdoors. Anyway, our dogs need more attention though, and need someone to walk them.......er be pulled behind them. So anyway, we have been doing some work in the backyard in the garden, on the pond, etc. So we have stored items on our porch, and up on our table. On of the said items were a package of black ties to secure my climbing rose bush to the fence. Well, you can check out what happened, forgive my mess we have been working.
So they climbed on top of the table, grabbed the package, and shredded it. We also have Bigsby our Yorkie poo who stays inside and doesn't care much for the terrorists. Bigsby's favorite past time is chasing the cat around barking until the cat plays back, and then Bigsby yelps. Our cat is a massive bean bag of fur called Scooter, and he is the best mouser in DFW. He is also the best cat, and we believe he is a "Seizure cat". He will lay next to Jude before we can even tell a seizure is about to strike, and he will not get up until it's over.
In addition to my messy patio, my entry way is loaded with Emily's Smile Box supplies for the cut a thon. I was standing there staring at all of it last night wondering how I was going to fit it all in our truck. Thankfully my cousin said he husband would be willing to help us. We have a large amount of people coming to the fundraiser, and I hope it all goes okay. There isn't a lot I can organize and will have to wing a lot of it. The box party should go off well.
My entry way:
Emily packing 200 crayons:
Thursday, May 20, 2010
Emily is sick today, and I am at home. I am going to take her to the doctor about 1:30. She said her throat hurts, and she feels dizzy. I hate running off to the doctor, and usually don't, but in this situation we need to go. Emily has a tendency to get ear infections, and has lost 30% of her hearing in her right ear. She gets really irritated with people when she asks them to repeat themselves and they get annoyed with her.
Anway, so off to the doc we go today! It should be a shock for him that I am there with her vs Jude.
Wednesday, May 19, 2010
I love my husband, but like I said it's hard sometimes. I was reading about making marriages work when you have an ill child, and I read some great ideas that I thought I would pass along.
Use empathy with your partner
Reflect back what you understand
Avoid dangerous comments
Compromise with each other
Keep arguments from escalating
Make repair gestures
One thing I have learned through this experience is that your partner is your support Mike is my wall when I need something to lean on before I fall down. I think that you have to have someone there to help you through this experience, and fall back on. You have to support each other, or you are going to crumble. Since your child already has special needs they need as much stable emotional support as possible. In addition to that their siblings need the same. Emily always needs my attention, but add a brother with major medical needs, medication, and frequent issues into the mix, and she needs even more attention. It's hard to split yourself into different pieces, but in essence that is what has to be done. Parents must find a way to divide their time out equally amongst their children, and their spouses. Easier said than done huh? We must also find a way to not allow everyday simple triggers to ignite unnecessary fights or stress. If you love someone than if there is anyway to salvage a marriage that should be done.
So as a parent dealing with a sick child, or special needs child how do you avoid conflict at home? How do you make your marriage work? Let's share some ideas, I am sure everyone would appreciate them.
Tuesday, May 18, 2010
It's subtle changes, but they are ones that make me smile with pride!
Monday, May 17, 2010
On Sunday Emily, Jude, and I went to the mall. Emily had won a gift certificate from Build A Bear. She has been named one of the top 75 finalists for the Huggable Hero award (we find out in June), and they sent her a gift certificate. She decided she wanted to use her certificate to get Jude his very first Build A Bear. When we walked in I inquired which bear we should get him, and then Emily and I both spotted the same animal, and said "the monkey!" Emily walked with jude around the store, and even though he couldn't participate he still helped in his own way. Emily named Jude's bear "up up up", because he knows what that means, and he can say "uh". She also picked up a nice Hans Solo outfit for Jude's little monkey.
Like I mentioned before Jude had a good weekend overall. Although, last night he had one horrible seizure. They are getting so bad that they are making him cry. The strange thing is that they are no longer scattered spams, like I mentioned there are just a few large hard seizures. So maybe the spasms set him further back, and that is why he is advancing some.
This weekend was a change, because I felt normal in many aspects. Yes Jude is in a wheelchair, yes we get stares, but he seemed like my normal little boy. Em was very good with him too, and that made me very happy.
Friday, May 14, 2010
Mike was telling me a story about an older child with special needs, and I looked at him and said, "So when a child is 7 years old, and you still have to change their diaper.......in public......how do you do that, because they won't fit on a changing station?" He just replied, "Now you know why I stress so much". I replied that I believe that Jude will walk with assistance, and we will work with his issue. Regardless of that topic Jude filled me with hope tonight, he really did.
The nutrionist came today and said she is amazed at how big Jude is. She admitted he needs more calories, and fat so she gave us several samples of Boost, and instructed us to get some heavy cream for his bottles. Lord have mercy the boy will probably have some serious bathroom issues with that ingredient. His physical therapist also came today, and she told Mike, "Somehow Jude is making accomplishments in his own way, it's subtle, and it's on his terms, but I am impressed.". This made me very very happy. On top of that we have avoided the inside of a hospital since December, amen!!!!
Wednesday, May 12, 2010
Jude has new muscle spasms, and I am not sure what they are coming from. I can only describe them as seizures in his legs. His legs will move rapidly over and over in a shaking position. We stretch Jude out very good, so I am not sure what this issue is. I am wondering if the new medication can cause tremors. I will be watching this new issue closely.
Yesterday Jude got the little green dinosaur from his grandma, and at first he wasn't sure what to think about it.
Then he decided he really loves it:
It made me happy that Jude was reacting to a dinosaur like a little boy normally does.
Work has been so crazy that I had to shut more door during lunch to be able to blog. I feel like I am ignoring everyone who has called, or chatted with me, but it's just one of those weeks. During work today I got a phone call from the state about Jude's MDCP benefits. The lady asked me, if Jude can walk, and I replied no. She then asked if he could crawl, and I said no. She asked if he could hold toys in his hand, and I said no. She asked if he could life his arms to be held, and I said no. So she then said he was marked ambulatory pe 1, which is another term I never wished to learn. She made my day I tell ya, sigh.
Time to open the door!
Jude is very smiley lately, and had "happy legs" all night long. His seizures seemed to have diminished some, but then I noticed they have just taken on a new form. Jude gets very quiet, and his eyes dart to the right, and his eyes stay there. He then will gasp for air (which scares me), and continues to look right. This can last about five minutes. I think we may have another EEG soon.
I am still very busy at work, and with my CE so I feel a little lost this week. I am trying to catch up on everything, so I can feel more normal.
Monday, May 10, 2010
Here is a cute pictures of Jude from this weekend. I was getting him to smile for me.
My sister got a new puppy, "Winston" and the puppy really liked Jude. Jude seemed to like the puppy, until said puppy licked him on the mouth before Mike could stop him. He was pretty cute though.
I have been very busy today, and I am working on my continuing education, so I apologize if I am quiet this week. CE credits are required in Texas for insurance professionals. Currently I am on hour 8 of 40.....whew.
Sunday, May 9, 2010
Friday, May 7, 2010
Other than that we are doing well. We are settling back into our lives post vacation, and in about thirty years I will be caught up on laundry.
Nighty night all.
Wednesday, May 5, 2010
My aunt flying with us
Jude's first plane ride:
Emily's First Plane ride:
Once we got into DC, we were greeted by the wonderful staff of Prudential, and the National association of secondary school Principals. They made sure everyone had their luggage, they loaded us on a beautiful bus, and we headed out to the hotel. On our way we were given some history on specific monuments, bridges, and rivers. Once we were at the hotel, they explained they were taking my baby girl to the students floor, and we were to go to our room. I was letting Emily go for the first time, and it wasn't easy. Little miss independent rushed away from me with a gung ho attitude, and she was very self confident. After getting into her room they took her to do radio, and TV interviews, and us parents were escorted to an information meeting. After our meeting we then went to an amazing dinner hosted by Prudential where we watched amazing video's made by many of the children being honored. There were 102 kids that were state honorees, and I have never been so humbled in my life. These kids who seek no recognition performed amazing selfless tasks. One of Emily's new friends Austen planted and maintained a garden for a low income area that yielded more than 7000 pounds of vegetables, and fruit.....and he is only 12. Throughout the following days we would meet more children that would take our breath away.
The next day we boarded a bus, separate from Emily, and we went to Arlington Cemetery for an amazing tour. I was in awe while walking around reading the stones of those that protected our country. I approached JFK'S grave with hesitation, and much emotion. When walking away I saw Robert Kennedy's grave, Ted Kennedy, and many generals, admirals, and more. It was history which I am always interested in. I listed with fascination as we were told this cemetery was originally Robert E Lee's plantation, and the graves started in Mrs. Lee's rose garden. History enthralls me! We met up with Emily's group, and then we all walked to the tomb of the unknown solider. We soon began to hear the chimes of the clock, and it was time for the changing of the guard. We were all teary as the soldier was inspected, and then the Sergeant approached our group. He whispered some instructions, and then Four of our kids laid a wreath marked "Spirit of the community award" in front of the tomb. That's right, our group laid a wreath at the graved, hooray for Prudential. After our tour we headed back to the hotel tired, and sunburned. Unbeknownst to me, DC can get VERY hot!
That night we readied ourselves for the awards ceremony honoring all 102 state honorees. The awards banquet was at the Smithsonian Museum of Natural History. Prudential shut the museum down for us, and we had our dinner in the rotunda with the dinosaurs. It was a night of a lifetime. On top of that the key note speaker was Condoleezza Rice, someone I so admire. I was at a loss for words, and Emily inquired who she was, because she could tell how affected I was. I explained that she was the Secretary of State with President Bush, and at one point the most powerful woman in the world. Emily then listened to her address with fascination. I wasn't sure how Dr Rice would relate to the children, but she was amazing!! She told stories the kids could understand, and because of her Emily now says she wants to work in DC someday. Emily then met the Dr, and introduced herself, and her charity. She shook Condoleezza's hand, and they had their picture made together. As we walked off I leaned down to Emily and said "What an honor it was for her to meet you", and I winked at her. Emily smiled real big, and just said "Oh mom you are silly!"
The next day we had the national awards ceremony in the Hall Of Flags at the Chamber of Commerce. We looked around the room in fascination, and looked at each flag that represented an explorer. Soon the awards ceremony started, and we were all a bit nervous......except Emily. Why? Because Emily had several kids picked out that she wanted to win, and she wasn't one of them. So they began calling the names of the kids that were the national honorees, and tears started flowing. One by one we watched these amazing kids walk to the podium. They called Megan Johnson, and she was so excited that even Mike started bawling. She ran to the podium in such a way that everyone laughed. She then explained that to date she had received 27 facial surgeries to try to correct a cleft pallet, and other abnormalities. Megan smiled through her deformities, and explained how she understood the seclusion the homeless feel from society. She said she understood because she too felt secluded from what society deems a normal child. She explained how she has passed out thousands of blankets to the homeless, helped people find homes, and sold necklaces to earn the money to do so. We were all so touched. Emily did not get called, but Ben her fellow Texas honoree did, and we yelled for joy when his name was called. To date Ben has raised more than 850,000 dollars for Scottish Rite Hospital through his charity Kid Swing a gold tournament for kids.
That night we went on amazing boat ride up the Potomac where they served us another amazing dinner. We watched the adults break loose and dance their little heart outs, and Mike, and I laughed there was no alcohol involved. Mike took plenty of pictures, and explained he would be black mailing everyone. The most impressive dancer was a 72 year old grandmother from Japan. She said she still runs everyday, and two years ago completed s 27 mile marathon.......wow!
The next morning Emily had appointment set with her US state Senators. We were led to the capitol where we stood overcome by the very history under our feet. Then Emily was led underground to the Senators office, and we passed offices marked with amazing names. We passed "John McCain", and then "John Kerry", and more until we rounded a corner and saw the Texas Flag. Then we saw the words Kay Bailey Hutchinson, and Emily entered the office. She was not able to meet with Emily, but her assistant was. Senator John Cornyn did meet with Emily, and shook her hand. He congratulated her, and then listed to Emily's ambition, and took a picture with her. We were so honored, and I hope the people Emily met during this trip can help her further her goal to touch more children's lives.
Emily and Ben off to meet their senators:
I would like to thank my aunt for taking such good care of Jude. I never could have taken this amazing trip with Emily without her help. A big thank you to my other aunt Docia who came over to watch Jude while we got ready, and then took our puppy home with her for the weekend. A big thanks to Prudential, and NASSP for sponsoring these amazing function. None of these children do their community service to receive a reward, but good for these company's for recognizing these amazing children's efforts. By enforcing the need for community service these company's are only helping the future of America. A big thank you to everyone who helped us get to where we were going this weekend. Also, a big thanks to the amazing parents we met, I know how much each of you do to help your kids help others. What was so amazing to me is that these kids left even more motivated than they were before. Last night Emily printed dozens of flyers about her cut a thon fundraiser beind held 5/23. She then went door to door passing them out, and trying to recruit kids to help her make 200 Smile Boxes that day.
We are now home, and tired. I go back to work tomorrow, but inspired by our nations history. I may even work at completing a goal I have had for a long time. I will talk more about that later. Jude seems very happy to be home. Even though he suffered many seizures while away, he did very well.
Emily says thumbs up for a great trip!