A wonderful night

I have little time because I am going to help get my sisters wedding invitations out the door. Jude, and Em are going with me so they can see the grandparents! So last night we met up with several other special needs blogging families. We met at a central location in Dallas, and we talked for hours. I learned SO much from them regarding equipment, therapy, wingbo swing, ABR, stem cells, and more. They were in town for a very expensive lesson in ABR therapy. We are so lucky that they are going to share their information with us, and I hope I can share that with some of my other special needs mommy friends.

I will post lots of pictures, the links to their blogs, and more on Monday. We missed those that couldn't join us, and I thank those that were there. Sometimes my life travels fast, and I don't communicate the way I should to let others know how much I appreciate their input, and help with Jude. By the way, I also learned how lucky I am to live in the great state of Texas. I may complain about our mounds of paperwork, but the assistance we receive for a disabled child is WONDERFUL compared to some other states. I am very very thankful!

I cannot wait to share the pictures!!! Have a good weekend all.

Get that paci!!!

I am going to entertain you with pictures today because they will truly explain my update rather than words.

First, let me say how I admire my daughter for allowing Jude to drool all over her. She never once complains, but simply laughs at the huge wet circles left on her. So without further comment here is the first picture:






Do you see what we saw? Yep, Jude is catching his pacifier, and maneuvering it back into his mouth. He did this over and over, hence the reason I could capture this on film. I am unsure if he will remember how to do this again, but it was great to see!!! He has been using his left arm a lot more, which is very promising.

Also.......... drum roll.........................

Jude

Still

Hates

BATHS!



This was right after his bath.....he was still angry!

Therapy tantrums

So Jude's therapist came back yesterday because he threw a fit on Monday. She said she was not going to let him get away with crying to get out of therapy, therefore she made the second trip this week. Guess what? Yep, Mr. Jude threw another fit. She told us to work with him more than we normally do so he won't feel he can just cry to get out of doing work. I am noticing more of a toddler attitude in Jude with his fits, and crying. I have mentioned when I get home at night he doesn't want me to put him down. That has now extended to not even wanting me to hand him to anyone else. I gave him to his cousin Faith the other night, and he started the lip, and whimpering. Is it odd that I find this strangely reassuring that Jude is in fact making a bit of progress?

I should have some of the hematologist results back either today, or tomorrow. I am terrible when it comes to waiting on doctor reports. I try not to hound the office, but I always end up calling early. While waiting on my amnio results I was a nervous wreck! I know there is no sense in getting myself worried, but I tend to anyway.

Tomorrow night is the "Holland Mafia" meetup. I am excited to meet some fellow bloggers, and other moms that share insight into the special needs world. Sometimes I feel like I don't quit fit with others, or I am to loud, and opinionated. So therefore, I hope I mesh will with everyone, but I am sure it will be a wonderful time!! I am having Mike meet me at work with the kids, and we will travel from here to Dallas.

I am off to work, and waiting on a call regarding Em's charity. I am hoping we get great news today!

My girl

My daughter was a funny character tonight, and kept me entertained. First, she decided she was going to help me with Jude's party. She brought out a CLIPBOARD with paper......... lol......... and wrote down everything I said. We decided on a nacho bar, with cute red/white checkered stadium type paper containers. We will set up meats, and vegetables to accent everyone's perfect nacho concoction. We will then set up stations for a hula hoop contest, making book marks, and make your own flower pot. The flower pots will be a representation of Jude!! We will then sing happy birthday to our little man, using the parachute so he can enjoy the song. So Jude' party is a go. I made the party from 2-6 so there is no pressure, and plenty of time for people to come and go. I figured that would make the day more relaxful. I guess the day is what you make it!

While making the nacho menu, Emily was trying to write down "guac" for guacamole, and wrote "waca" which created a huge laugh. She then got funnier as the night went on. During our discussion about the nacho bar, Mike walked in the front door with his loud boisterous voice. Emily looked at him, and said "Your here {with her hand over her eyebrows}, but I really need you here so I can work {and pulled her hand below her mouth}. I um nearly wet my pants!! Mike just walked out the front door to finish his conversation.

Emily and I then discussed her charity. Emily gets a bit shy when talking to others about the work she has done, so we discuss her project to get her more at ease. I told her that I heard from a charity today that could help spread the word about her project to the far corners of the nation. She knew who I was talking about {don't worry I will tell everyone soon} and she was so excited she could barely speak. So we then talked about how much joy her charity could spread if it became a far reaching project. Mike and I discussed needing an accountant, finances, and more. Emily simply looked at us and said, "Look all I know is I am helping other kids, and making them smile so that's all that's matters to me", and that's why she is so special and original. I simply smiled and repeated how proud I am of her.

So then I said,

Me: Emily if you could reach anyone about your charity to get help who would it be
Emily: The president {she doesn't play huh?}
Me: Um of the United States?
Em: Yep
Me: K, so what about meeting Taylor Swift someday and getting her help
Em: {thinking hard because she loves Taylor Swift} Nope the President!
Me: The Jonas Brothers?
Emily: The president!
Me: Ok ........... anyone else in the world!!!
Emily: Mayyyyybe my family in England...........but .......... nope .... I want the President!
Me: Well what would you tell him
Emily: "That children are not treated the way they should be, so they grow up to be bullies, and other horrible things because of that. Also, that we need to treat special needs children the same as regular children"
Me: I think that's a great message Em, and I think someday you will tell him

tear!

party problems

So I was sitting holding Jude last night watching "Tori and Dean". Yes, their show is a guilty pleasure of mine, but I truly enjoy it. The show was focused on their daughter Stella's first birthday party. All my friends, and family know that I am an avid party planner, and enjoy every second of hosting a function. So I sat there watching the elaborate party with ladybugs, and activities galore. Then I began to think.......

Why is it that I have not planned the way I normally do, for Jude's party? Normally I find inexpensive ways to host a phenomenal party, well what I think is phenomenal anyway. I would have a plethora of activities, pinatas, and more. So far I have great invitations for him, lot's of Elmo's to put around, and matching plates. I wondered if my lack of party planning is because there are very few activities Jude can participate in. I am not sure he will eat his cake, he cannot hold a cup, and I am afraid all the noise may scare him. I decided this wasn't acceptable, and I needed to do more. So I was determined after watching the show to step up my game, and make this a lasting memory for our family. Elmo is Jude's favorite toy because he can focus on the red, and therefore Elmo has been chosen as theme. I plan on adding more activities to the party, including incorporating the parachute Jude loves at Gymboree (I found a great one at wal mart for $10!!). I will put out more games for kids to play, and just see what else I can come up with.

I am picking up a donation of beanie babies for Emily's Smile boxes today. Therefore, I need to run. I am also saying a few prayers for my hubby that will be on a very hot roof today working on a chimney.

Who is a survivor?

On my way to work today I was listening to a story on the radio about someone battling cancer. The lady was talking about her will to live, and what it has taken for her to survive. This led to in depth thought on my part about what people overcome in their lives. It seems some people are predestined to deal with so much, and some people skate through life without ever encountering serious issues. Who knows why this is, but I began thinking about all the stories of people I knew who have overcome so much. One person stood out to me today. We had a receptionist at the office I managed that had a large scar across her throat. I am one of those that would prefer to ask than stare {forgive my nosiness}, but she told me without hesitation. It was the old tale about someone crawling into the back of your car at a gas station......but it really happened to her. It was dark, and she got into her car, and someone was in the back seat. He made her drive to secluded area, where he raped her, beat her, and cut her throat leaving her for dead. Somehow she survived, and struggled to reach the highway where someone rushed her to the hospital. I remember sitting there with my mouth hanging open when she was telling me the story and hanging on every word. I listened to how she spent months in the hospital, her emotional recovery, and how at ease she is with the story now. She was thankful for her life.

There are many stories like this around the world. I know people that have survived deadly car crashes, a woman that was in the north tower on 9/11, children that have lost parents, and those with incurable diseases. So what drives a person to survive situations like this? Is it instinct? Because they have to? I am not sure the answer, but I can tell you one thing that they all say. They have learned from their situations, and even though they would prefer it never have happened, they have a better outlook on life because of it. I am not sure what brought on all those thoughts, but I was thinking a lot about my old receptionist today, and how unbelievable it was that she survived that attack. We all listen to stories like this with morbid curiousity, but I also listen to them with admiration for the person who overcame the situation, and their drive to survive.

Jude is well, but was very ornery with ECI yesterday. He has a new habit of throwing a screaming knock down drag out fit without tears if he doesn't get what he wants. So his therapist Leah explained she couldn't work with him yesterday, but she would be back on Wed, because he isn't getting out of his therapy that easy. Jude is also wanting to stay awake all day, and refusing to nap, which increases his irritability. When I get home he wants me to sit, and hold him all night until he goes to sleep. If I lay him down for one second, he starts his pitiful crying. I guess I better stop holding him all the time because it only reinforces what he is doing. He sure is cute though......even with a pouty lip!

Many of you remember my blog on Maddie Sphor. She was a bright, beautiful little girl, who suddenly and unexpectantly passed away. Her parents have taken their grief, and have started a charity. In fact it is similiar to Emily's Smile Boxes, but they help parents in the NICU with survival bags. I encourage you to check out their website at www.friendofmaddie.org. Not only do they provide bags, but they also help with finding lodging for parents which is wonderful. I would like to see Em's smile boxes eventually have enough money to donate to research for curing childhood diseases and eliminating strokes. Anyway, please stop by their site, and let them know Jude's family sent you. They could use your support.

Strollers, and the Holland Mafia

Well first off......Emily is home:

I am glad she is home! That is my sister in the background with Jude, he loves his aunt "Chelle". Great news, Em received $300 in donations this weekend, and we ordered all her Christmas box supplies! She is so excited! She also is going to get to speak to a few churches in our area, and this should help her grow her business. I think I told everyone I had a dream the other night about her smile boxes. We were working out of a retail location packaging boxes, and shipping them all over the US. It was a very nice dream.

So Jude got to test out his big boy car seat this weekend, and he seems to really like it. We have not put it in Mike's truck yet, but we did let Jude try it out in the living room. He sat and watched an episode of Calliou while sitting in his seat, and seemed to be interested. He laughed a bit when they made high pitched noises.


We also picked out the adaptive stroller for our little one. It's red, and black and will offer him a lot of support. We still have to pick the right bath chair, but Jude is moving along in getting items that will help him, and us.

So this weekend Charlie's mom is coming in town. You can see Charlie's story here: birdonthestreet.blogspot.com. We are going to have a meeting in Dallas of families that have met via blogs with special needs children. I am very excited at the prospect of meeting Katy, and her son. She is hilarious, and has dubbed our group the "Holland Mafia". It's nice to meet other parents that understand what you have experienced. I look forward to their advice, and stories. Sometimes I unknowingly blank out when people are giving me advice, but I have definitely learned a lot from Holly and Jocalyn. I am very grateful to them.

I am very busy at work today so I have to cut this short.

Smile boxes, bread mishaps, and the eye doctor

It's Saturday and I am sitting on the bed typing my blog as I watch Jude sleep. It took awhile for him to go to sleep today, because he kept having spasms that were waking him up. I held his paci in his mouth as he occasionally twitched, and he finally drifted off to a deep sleep. Other than that circumstance it's been a nice day of relaxful times. We get Emily back tonight, and I am so excited about that. I know she is ready to us, and we are ready to spend some time with her.

Relaxing for me can include cooking. I enjoy baking nice treats for my family, and it's my way of unwinding. This morning I made homemade banana nut bread, and Zucchini bread from scratch. When I pulled the Zucchini bread out of the oven I received a rather spicy smell, and it threw me for a loop. Suddenly I felt like Homer Simpson and the word "D'OH" escaped my mouth. My cinnamon, and cumin are in the same type bottle, and it was obvious I had used the WRONG BOTTLE. I sighed, and threw the bread into the trash. Luckily the banana nut bread was not harmed by my cooking nightmare.

Jude went to see the pediatric eye doctor yesterday, and she was very nice. She said she noticed Jude's left eye is becoming lazy, and rolling down. Therefore, we have to patch his right eye to try to get him to use his left eye more. Jude's stroke was worse on the left side so I am assuming this is the cause of his current situation. So he has cute "boy" patches for his eye, and we will start this soon. In fact I may put the patch on while he is sleeping so there won't be a protest. She also marked him "legally" blind on all his paperwork, but this is more of a call for therapy vs a permanent diagnosis. The hematologist had noted the day before who Jude "recognizes" us and turns towards us when we speak. She also noted how he will look directly at our faces, so I see some hope for his vision.

To our great surprise we received 4 donations for Emily's Smile Boxes today, and this made me so happy. I called Emily to tell her about it, and she was so thrilled. I explained to her that I had located a shelter in Dallas that houses abused children. Since abused children are a subject close to my heart I asked her opinion on adding them to the Christmas box list. She was all for the idea, and said "That would be great mommy". I know it seems I take on a lot, but honestly I have whittled my load down to work, home, and smile boxes. I make time for my friends when I can, and I have gotten the courage to say "I am sorry, but I cannot make it" to events. I try not to overload our schedules, and I focus on what's important. To Emily, and I the smile boxes are very important. Maybe they are an outlet for grief, but it's a good outlet. As a child I always wanted to help other children, and due to my daughters idea, we are now able to accomplish this. I so enjoy it, and I only hope it grows into a large non profit empire where we can ship these boxes to all the children's hospitals in the nation. It's a lofty goal, but one we are working towards. Emily cannot wait to hold her "smile box making party" for her Christmas boxes.

So I pulled my normal demanding self routine with a friend of mine who's daughter also had a stroke. I feel bad because I kept texting, and emailing her talking about day to day schedules. She was going through a time where she just needed a break from life for a bit, and bad Jennifer hounded her. So please forgive me, I have a tendency to do this when I worry about others, and wonder what I did. Everyone needs a break, goodness knows I take one every now and then. It's needed!

Yes my baby had a stroke!

Last night Mike had to run to the store to get our terrorist Spot another collar. He had gotten out again yesterday, and came home without his name tag, or collar. I decided I would go with Mike and pick up Emily's school supplies. While we were walking into the store two elderly women stopped us to look at Jude. I enjoy showing him off so this didn't bother me at all. They oo'd and aww'd over his adorable curls, and he flashed a little smile. I think it was apparent to the lady on the left that Jude had some issues, so she just politely smiled at us. The lady on the right just didn't get it, and asked "Has he taken his first steps yet?". I saw Mike grow uncomfortable but he simply answered, "No not yet". Well she didn't stop she kept telling us how her kids walked late, not to worry, etc etc. I finally stepped up, and nicely replied, "Jude had a stroke before he was born so we are unsure if he will walk, but we are keeping our hopes up". She still kept telling us how her kids walked at 18 months, and not to worry. I thanked her for being kind, and proceeded to walk on.

I don't reply this way to make anyone feel uncomfortable, I simply share the truth. I am not ashamed that my son had a stroke, and I have no problem letting people know this can happen. I also don't do this to abruptly end a conversation, although sometimes I think I need to. We live sheltered lives sometimes believing that unfortunate circumstances cannot happen to us. I have been told by doctors that we "drew the short end of the stick" during our pregnancy. Harsh, and true to a point, but Jude is definatley not the short end of the stick. My point is people should be prepared that unfortunate events can take place, and that you need to learn to adapt. Of course, I wish that Jude never encountered his stroke, and that he was taking his first steps. Of course I wish he could roll, hold his head up, and hold objects. Although, he isn't, and I love him just the way he is. I love that I can sit and hold him for hours, and that he will just stare at me, and grin. I love his little pterodactyl squeal that he let's out when he is very happy. I know Jude will most likely live with Mike, and I as long as we can care for him, and that doesn't bother me a bit anymore. Jude is special not because his special needs, but because he is JUDE!



So we saw the pediatric hematologist yesterday, and I really liked her. I was happy that her office was right across the street from my work, because the appointment took over an hour. She was very detailed, and took her time with us. In my opinion you can tell a doctor is quality when they do not rush you out the door, and spend time getting to know your case. She reviewed my plethora of information in Jude's medical binder I keep. She looked over all of my blood work, and all of his. She asked Mike and I a long list of questions. She then said she was unsure if she should test Jude for a bleeding stroke, or an ischemic stroke. Old feelings of panic swept through me thinking she was going to tell me Jude didn't have a stroke, and his issues were my fault for some reason. I knew that wasn't true, but as a mom you cannot help questioning why it's your child that had something happen. She reviewed the in utero MRI findings, and saw the bilateral blood. She said this leads her to believe he had an ischemic stroke. That basically means Jude had clots that broke loose, and she believed they went to his ventricles causing them enlarge. She explained that initially she would lean towards the bleeding stroke since I am a bleeder, but the MRI makes her believe otherwise. So she is going to test him for both potential issues both bleeding, and clotting. We were told his risk of having another stroke was only 2% unless they find something underlying. Then she sat on the table, and in a nice tone she explained, " a lot of time parents come in here, as they should, looking for information on why their child had a stroke. Many times our tests come back 100% clean which is wonderful news, but it means you still don't have an answer as to why this happened". I thanked her for her kind words, and explained that I knew this would probably be the case. So Jude gave several viles of blood yesterday, and he goes back in 3 weeks to give more. In 3 weeks he also had to give blood to check his Depakene levels (his meds) so her office is going to do this instead of the diagnostic center we normally go to. It's all a bit confusing sometimes, but it was nice to have a specialist look at his charts, tests, and give us her opinion.

A bit better.

I miss Emily! She is at her dads, and I know she is having a great time, but I miss her. We recorded her session on the news this past weekend, and I keep watching it, so I can hear her voice. I think I am rather sappy!! Hearing her voice makes me smile though, and I know Jude misses her too. I asked him where his "sissy" was, and he kept looking around the room. I believe he knows who we are as individuals.

Tonight when I got home from work I was still feeling ill. I had religiously administered the eye drops every four hours as instructed. I began to feel some relief, but not enough to declare myself well. When I got home Jude had only eaten 9 1/2 ounces the entire day, and I came to the conclusion that he wasn't feel well either. I knew I didn't feel like eating, so why should we assume he does? I made him a bottle, then took Jude from his grandmother, and calmly sat down with him on the couch. I put the bottle in his mouth, and at first he refused to suck, simply letting the milk flow in his mouth without response. Suddenly he seemed to realize what was going on, and he latched on to the bottle. He did not stop until the entire 6 ounces were gone, and I even got him to take 2 more ounces. You could tell he was very hungry, but had been hesitant in eating. So is this just a reaction because his mom was home? I don't think so. It's just timing with Jude, and I happened to catch him at the right moment. Later in the evening I got him to take another 8 ounces with rice. After he took his last bottle I watched with desperation as Jude suffered another long seizure. I sighed with exhaust and relinquished my fight for the night. I held Jude close, but understood there was nothing I could do. We simply waited for the seizures reign of terror to end.

So will Jude ever be seizure free? I don't know, but I hope so. Whether through stem cell therapy, surgery, or Gods will, we hope he will indeed find a way to be seizure free. Throughout our journey of the special needs world we have always hoped for some normalcy. When we begin to achieve that feeling we are always shot down by seizures. I have claimed before that seizures wear demons horns, and I still believe that to be true. They seem to find a way to morph into a different being, and escape the hold of the medications.

So we confirmed that Scottish Rite would also like to receive Emily's Smile Boxes, and we need your help. We are about $100 away from her goal to be able to now fill 175 boxes for Christmas. Please visit http://www.emilyssmileboxes.com/. If you know anyone that can donate even $5, it will help us.

I am off to take a bath, and wash my itchy eyes. I plan on patting Jude, thinking of Em, and hugging my husband good night. I will dream of seizure free days, relaxful evenings, and the Dallas Cowboys winning the super bowl! NIGHT!

Crazy nights mixed with pink eye

Well it's been a crazy week! So far I have fallen, and I now have what looks like pink eye in both eyes, and feel like poo. Oh well, I will get over it.

Last night was a terrible experience with Jude. I didn't feel well so I went and laid down early, and took Jude with me. I knew he needed to eat so I asked Mike to make sure he got his last bottle, and medications if I fell asleep. I began to drift off when I heard the terrorists (aka Mikes bad dogs) begin to bark, and this woke me up. At that time Mike began to get Jude's medications and formula ready, and decided to feed him in our room. Jude was refusing his bottle, and was getting very upset. When Jude doesn't want to eat, he also doesn't want anything in his mouth, including medications. Jude began throwing a terrible fit, and choking on his medication as they went down his throat. We have no choice but to administer the meds so Mike had to keep struggling with Jude. The more Jude screamed the more upset Mike got. Finally, Jude got to the point that he was so upset that I knew he was going to throw up. I began to hear Jude gagging, and then as predicted he lost everything. Poor Mike had to change his shirt, and I sat trying to calm the baby down. He was doing the breathless cry, hiccups, and gasps that you have after a very good fit. Once I got him calmed down I gave him a bit of Tylenol which he didn't mind, and then snuck in the rest of the Depakene. Let me tell you his feelings were HURT! Mom is who he runs to when he is upset, and the fact I gave him his seizure medications really upset him. He cried for at least ten minutes with intermittent screams mixed in. Mike, and I both felt terrible, and it's heart wrenching to hear Jude cry so much. He is normally a happy quiet baby, so when he puckers out his bottom lip, and wails it's very sad.

As of this morning at 10am, Jude has only taken an ounce, so he is very behind in eating. It seems we have great days where he eats normal, and then down days where he eats terrible. I am encouraged to hear from other mothers of stroke victims that this is rather normal. In fact, Katy told me she had issues with her son eating, but now he eats solids. I am crossing my fingers Jude makes progress in this area. I am also about to defy doctors orders, and try a tiny bit of pediasure with the medication. I am thinking that the vanilla taste may spark Jude's interest. We are a month from his first birthday so this should be acceptable.

I felt bad leaving him today, and Mike's frustration level did rise again when trying to feed Jude. He has called his mom over who has the patience of Mother Theresa, so I know Jude and Mike will both be okay. I am hoping I can make it through the day today because I need the hours at work. My bed, my pillow, and my tv sound really nice though.

Call me Grace

What happens when you put Jenn in the rain, with oily parking lot pavement, a baby carrier in one hand, and milk in the other?

This:


Yep that's my foot covered in an oily nasty mess from my graceful fall in the parking lot. Luckily Jude was in his carrier, and I even saved the milk. My toes are a little bruised, and so is my pride. Jude got a little thump from his car seat, but he didn't seem to mind. So thankfully everyone was okay.

So I am a bit tired lately, and a little stressed. Between work, Em's smile boxes, showers, and birthdays I need a bubble bath. I take a lot of this on myself so I have no one to blame but me, and I enjoy being busy. Although, if you are a friend that calls me, forgive me if I sound out of it, or distracted. Just remember I still love you, and bear with me. I had to deal with MDCP again this morning, employer Id Numbers, etc...so I am rather frazzled today.

I talked with my family in Missouri yesterday, and they are talking about taking a trip to TX for Jude's birthday. This is very kind of them, and I am very happy they have thought about doing this. I am making Jude's birthday rather laid back, and a come and go basis. I have had friends volunteer to bring some food, which is so wonderful, and well help a lot.

I did get to go see little Jude today on lunch. Mike has a paint job he is working on so he dropped Jude at his moms house. I went over there and got a bunch of kisses, and a few smiles from him. It was a great visit, and I was so happy to see him in the middle of a work day. Thursday, we go see the pediatric hematologist who is a childhood stroke specialist. I am very interested in seeing what she has to say about Jude. I have gathered all my blood tests, and Jude's to take to her. Jude will also go back to get his eyes checked on Friday, and will also be fitted for her adaptive stroller Friday. He has a very busy week ahead of him.

Charities, and accomplishments

What a weekend!

First let me say how proud I am of Emily. I had mentioned she did a fabulous job at the hospital, and when we saw the interview on the news I got chills. If you didn't get a chance to see her, here is the link to channel 8 http://www.wfaa.com/video/wfaageneral-index.html?nvid=383622&shu=1. Emily was so touched by seeing children walk around with her boxes, and I think it really hit home. She knew she wanted to give these items, but I don't believe it's ever been a reality for her. She watched the girl with the IV walking with her box, and her sister next to her clasping one as well. I could see the impact it had on Em, and I know she will work very diligent at getting more boxes to more hospitals. Soon we are going to try to learn how to market large chain stores.

Now to Jude's accomplishments. I had a great time with my little boy this weekend because he was full of smiles, and giggles. He also seemed to be more attentive this weekend than I have ever seen him. Although, I am afraid that he did have three long, but quiet seizures. While sitting on the couch with him on Friday night I talked to him, and smiled. I then put my hand on his chest, and said "Jude, put your hand in mommy's hand". To my surprise I saw his eyes dart downward towards his hand, and this caught me off guard. At first I thought it had to be a coincidence, but I repeated "Jude, put your hand in mommy's hand". I again saw him turn his eyes toward his left hand, and he began to try to raise it. I held my breath, and watched Jude try to work his arm. The scene was similar to a stroke victim's movements you have seen in a movie. As I repeated myself he began circling his arm, and you could see him truly concentrating, until finally.............his little hand landed in my hand, and his face LIT UP. He knew he had done well, and a huge smile spread across his face. He didn't just do this once, no little Jude did this THREE times before it became to much for him. He repeated actions like this throughout the weekend. I would ask to see his tongue, and he would slightly open his mouth. I would ask him where his foot was, and he would look down towards his feet. I also put his pacifier in Jude's hand, and asked him to hold it. For the first time, he clasped his fingers around his pacifier, and held on to it. Although, it's not funny that Jude cannot get the paci in his mouth, it still made us smile watching him try to get his hand to his mouth. He never accomplished that task, but he tried. He would watch his pacifier in his hand, and turn his head towards his hand, opening his mouth. It's these little movements, that restore our hope. Then last night I put Jude into his high chair to include him at the dinner table, and I opened a jar of sweet potatoes. I would say "bite Jude bite", and he would slightly open his mouth, taking in the baby food. I was so impressed with him, and I can only hope these trends continue! He is such a little inspiration to me.

Emily has gone to her dads for a week, and we miss her already. Mike said he isn't sure what he is going to do without her for the week.

Here are so pictures from the weekend.

A smiley Jude:


Emily and Michelle from Children's, She is giving Emily a tour of the hospital.


Emily and her interview


My two boys

Emily's Smile Boxes on the news, and more

I have such great news about Jude that I cannot wait to share with you, but it's a secret until Monday. Only because I have been running all day, and I have to go give Jude a bottle. We just got home from our long day dropping off Emily's Smile Boxes to Children's in Dallas, but it was so wonderful. The staff at that hospital was simply amazing, kind, and went above and beyond. I was impressed to hear that some of the women at the hospital read Jude's blog.....so thoughtful! When we arrived child life was already waiting on us to help unload. To our surprise channels 8 and 11 were also waiting to film Emily. I was so impressed with my daughters cool and calm answers. Emily also got to see patients, and siblings with boxes for the first time. She turned to me and said "Mom I want to give a box to every child in every hospital!".

She is such a joy! Em also got a tour of the hospital, and she loved the trains in the front. I have pictures to share, and more. I am afraid I have to make this very brief. I will provide a large post on Monday explaining Jude's accomplishment, and pictures from Emily's drop off.

Reflection

Last night while talking to Emily I noticed that as the light drifting across her face and she looked very pale. I knew she could just be tired from a long day of softball practice, and vacation bible school. Although, my thoughts began to race, and worst case scenario scenes flashed in my head. It's horrible I know, but my mind does this now. I try to control it and remind myself that worrying doesn't do anyone any good, and to be thankful for everyone around me. I am not sure if this is a reaction to our situation with Jude, or a lifetime of situations. When I lost my mom at 7 my life seemed to encounter many hardships. I feel like the army commercial, "I have seen more death and issues than most people before 50!" Everyone has their stories, but trust me I have a doozie. Anyway, so I have a tendency to over worry about things sometimes. I have always wondered if certain people are pre destined to deal with more in life? Doesn't make anyone better or worse, it's just fates straws that you draw. Thus leading to my point of today's blog which will follow.

Next week Jude will be fitted for his adaptive stroller which is, well his wheelchair. I sat around my house last night looking at doorways, floors, and more. I am thankful we have tile, but I still need to change out the carpet in the living room to make things easier with the stroller, and future adaptive aids. I also understand that Jude's stroller will not go up our stairs. So I began to wonder about eventual conversions of rooms, doors, floors, and more. I wondered if during Jude's life we will need to make these changes, only time will tell. Then I began to feel sorry for us, and Jude.......bad mama! In the next instant I heard Jude's shrill laugh, and I smiled, and the pity party quickly drifted away. This morning I got in my car, and turned on the radio only to hear a sad story coming through the speakers. I listened with interest as I heard a dad talking about his daughter who has terminal cancer. He talked about how the whole town is getting together to create Christmas in July, and fulfill her dying wishes. I swallowed hard, and I thought about how lucky I am. I thought how I can have a pity party that my child is special needs, but I still have my child. We just never know .... do we? They didn't know.....the had a perfectly healthy child until this last December. I know Jude will always need my help, my home, and more. Although there are children out there all over that have predestined plans by the parents regarding college, and more.......but they won't ever see those plans. For one reason or another fate intervenes and derails our life. I guess it's what you do with that life no matter how long or short it is that matters. We can plan, but sometimes life makes our plans for us, without bothering to ask us if it's ok. So we need to live our lives to the fullest possibility, just in case.

We never stop to think much about wheelchairs, cancer, losing a baby, losing a child, or even stemcells, or health care reform......until we have to. Why? Is it because we canot relate? I had no personal vested interest in George Bush holding back stem cell research....until now. I never knew the personal heartache of possibly losing a child.....until now. So maybe we should all take a minute to not feel sorry for people in these situations, but to try to relate to them. To understand what they need, and help them obtain it. To take an interest in politics that will help those that are ill. To stand up and make a difference in someones life.......to make a difference in the world. It may be something as simple as.........Emily's Smile boxes, but it's something.

Have a good day!

Conflicted

I am conflicted today........at a loss of words.....maybe. I had a little time this morning to post my blog, but I could find the right things to say. Yesterday I received an email from my friend Linda. We have been friends for a long time, and our kids have grown up together, and she told me some dreadful news. An old friend of ours just had a civil suit filed on her because she confessed to embezzling almost 2 million dollars from her company. I read the article, and the suit with my mouth hanging open. The sum of 2 million echoed through my head, and I wasn't sure how to respond. I knew her husband had lost his job, I knew she had been very ill, but I never would have guessed something like this would happen. She was one of the nicest, most kind people I had ever met, and I wasn't sure how to react. I wasn't sure if I should be angry, sad, or how to feel. I finally decided that this is something the criminal system will handle, and that what mattered was she was my friend, and will continue to be. I am not sure her reasoning nor is it any of my business, and honestly I am not sure I will hear from her again. Sometimes we all pass judgement to quickly (ie the Jon Benet case, and her poor mother died before she was exonerated) so it is not up to me to judge. I am sure she will be tried in a court of law, but in the end all I can do is be her friend. She was always supportive of my family, so I owe her the same respect. I guess sometimes good people do bad things.......and then they pay the consequence. Her family, her children, and all are in my prayers.

Jude is doing well today, he has eaten on time, and Mike said he is very smiley, and playful today. I get so down that I cannot see him today. Last night I found myself growing very angry at Mike that he is in my position at home and I am working. I knew that was wrong because I have an incredible job, and he is an incredible dad. I have since worked on getting my feelings in check. As stated I hear the first year after your child is diagnosed with irreversible brain damage is a roller coaster of ups and downs.

I will say Mike is cracking me up today because he is at home cleaning out our fridge. Emily and I have a bit of an obsession with pickles......all kinds of pickles. So I received a text (that has been edited) "How many pickles are in the fridge? I feel like the count on sesame street.......eight eight jars of pickles" Then he called me a pickle freak.

Saturday Emily will be dropping off 42 boxes to Children's hospital in Dallas. We will then begin getting all her Christmas boxes together. If you would like to help fill them please consider donating. You can see her site at www.emilyssmileboxes.com.

So as I suspected Jude was much older than the other babies at Gymboree. He also could not do as much as they could, BUT never the less he loved the class. He especially enjoyed the parachute!! I think he enjoyed the breeze in his face, and the texture against his skin. So we will be taking him back next week.

The people that own the place are so nice, and welcomed Jude back with open arms. I (of course) immediately shared with the class when we were introduced that Jude suffered a stroke. This #1 allows people to understand what is going on with him, and why he cannot hold his head up. #2 always provides an opening for someone to ask "babies can have strokes" (which I heard), and therefore I can educate on pediatric stroke awareness. Overall, I am happy we took Jude, and I pray that he will someday be able to use more of their equipment. Time will tell what Jude will accomplish.






Yes, Jude is in his Dallas Cowboys outfit, because again I reiterate that Football season is around the corner. Now if I can only convince Jerry Jones this broke girl needs some tickets to just ONE game...(giggle)

I would like to start today's blog out with a picture of my baby's natural mohawk. That's right, his hair is now so long that after his bath it stuck up like a rooster!

Although, I think a little mohawk would be cute on him, the boy needs a hair cut. I sent the picture to my husband who is adamant I am not cutting Jude's hair, and I did not receive a response.

So one of my best friends, and co-workers is pregnant. I have talked about her before, and how excited she is about her baby. Today she had her gender sonogram, and I found myself on pins and needles. Last night I literally sat in my bed praying that everything was ok. I didn't expect to get so nervous, about her sonogram, but I guess all the old feelings rushed back. I remember being like her, looking at names, and being so excited about my level 2 sonogram. Mike, and I went in with great expectations, only to be told something was wrong. No mother should go in to find out if she is having a girl or boy, and come out knowing something is wrong with the child they are carrying. So she texted me that she knew what they were having, but she won't tell me, and that she was waiting on the doctor to come in. Over an hour later I had not heard back from her, and I literally got very very nervous. I knew in my heart everything was fine, so I guess this was a reaction to my own prior emotions. Luckily, all was well, but the woman still won't tell me what she is having. I am just so thankful her baby looks happy and healthy!! Now I just need to know what she is having so I can buy her outfits.

So reflectively I looked back on a perfect sonogram picture I had prior to our gender sonogram, and before we knew anything was wrong. Little Jude on his tummy made me smile.

It's hard to describe to anyone the feelings of being told something is wrong with your baby. It's overwhelming. It's lasting. It's haunting.

Today Jude is trying out Gymboree again. I will take a lot of pictures, and we will see how he reacts with the other babies. I reminded Mike that he cannot look around envious of the other children that are "normal", but to look at Jude and what he is accomplishing.

Another busy day....

I feel out sorts because I am so busy this week. Work was been unrelenting, and I have had stuff to do on lunch, and after I am off for the day. I am currently taking a 10 minute break because I need to de-stress for a second.

Jude had a rather long seizure last night while we were visiting my dad and Kay. Kay said a nice prayer for Jude while he was going through the motions. Jude has a few spasms throughout the day, but he rarely has a long drawn out seizure like he used to. This one lasted about 15 minutes, and even though he did not yelp I could hear his breath become forceful with each crunch of his body. Jude's next neurologist appointment is in August so at that time we will discuss further medication options. I know it sounds like Jude's medication is always changing, but thus is the roller coaster we ride. I informed Kay, and Mike both about the bone marrow stem cell study I mentioned yesterday. Kay said she believes if any stem cell would show promise in neurological issues she would think it would be from Jude's own bone marrow. It's all scary, but fascinating. IF there was a possibility that the stem cells could help with his seizures, then that would be wonderful, but who knows.

So I mentioned I would share Jude's first bday party invites. I generally order invitations early because if people's schedules are as busy as mine, I figure they need plenty of advance notice. In addition I have several showers, a wedding, Jude's bday, and Ems bday coming up...whew. So here are his invites, hope you like them.
Front ~

Back ~


I would also like to share some pictures of Jude in therapy the last few days. It seems he is still making progress with his head control. His lovely therapist Leah brought Jude a brand new shiny bouncey ball to balance on. He loves his new ball!



Jude is going to try out Gymboree music and play again tomorrow. I will be sure to let everyone know how he responds. I am going to meet Mike, and Jude at lunch time so I can participate with them.

One last thing I would like to share. Emily completed an interview with "Kids who inspire", and I would like to share it with you. http://www.kidswhoinspire.com/emilys-smile-boxes-interview
I hope you enjoy it, I did!

Also, I received my blood results from the hematologist that completed all the testing months ago. If you remember I was informed I had some sort of platelet disorder, but there has been no further testing since. I knew I would need my tests for the pediatric hematologist we are seeing for Jude, since she does in utero stroke research. When I received the paperwork I scanned through the results. Under my bleeding time it's marked not as high, not as an issue, but critical?!? That word seems a bit concerning, you would think they could use something less....dramatic. Anyway, I am trying to find out who I see to narrow down what the issue may be. I love my hematologist though, so I am confident I will find the right person to isolate what the problem is.

Quick update

I have been unable to post an update today because I have been crazy busy at work. I will tell you that Jude is currently at 12 ounces today, which isn't much. Although each bottle has been full of rice so that is extra calories. Mike sent me some great pics of Jude at home with his therapist from ECI. She brought a great ball for Jude to work on today, and Mike said Jude enjoyed the therapy session.

I also received an email from senior research nurse with a university. She stated they will be conducting clinical trials in 2010 using bone marrow stem cells for treating brain injuries, CP, and hypoxic ischemic events. She wanted to keep Jude's information on file, and I find this very encouraging. I am apprehensive about extracting Jude's bone marrow, so that would be something I have to really think about. It was nice to have someone contact us, about future possibilities though. I will be interesting in hearing all the pros and possible cons to the procedures.

I also received all of Jude's medical records from his neurologist. It's the first time I have read in bold dark writing "Intrauterine stroke noted". I guess I always think maybe there was something I just did wrong, but there it was in black and white. it was also referred to as a prenatal cerebrovascular incident. What was strange was I received the above mentioned email from the nurse, and I remembered I read hypoxic ischemic event in Jude's medical report somewhere. I believe that is a overall lack of oxygen to the brain, which Jude's stroke caused. It's a little confusing, and I will have to read back over his records, but I am sure it said that somewhere. Anyway, the medical records are just opinions, but they are interesting. Plus, I find this doctor's information a lot more positive than the last dr we had.

I am off, I will hopefully have a chance to update more tomorrow with pictures.