Friday, May 29, 2009
During the assembly I noticed the row of special needs kids. It's amazing what I noticed now...small details. I saw that one child had headphones on, and I knew it was to avoid sensory overload. He had a nice assistant sitting beside him helping him with any issues. He could walk though, sit up, and participate! Good job! I love the fact the school included these children in their assembly, that made me smile.
So here are some pictures from today. Em's dad came and joined us so he is in the pictures too.
Thursday, May 28, 2009
Tomorrow Em has her Hall of fame ceremony at school. She is being recognized for getting straight A's, being nice to others, and her smile boxes. She is very excited! She has her outfit for tomorrow all put together, and her alarm is set for 7am. She makes me laugh how organized she can be when planning an event.......a little over obsessive....I have no idea where she gets this from (I am whistling in innocence right now).
I did hear back from Judes doctor today regarding his eating and spasms. We will be increasing his Depakene, but only after his eating is under control. Increasing his medications can make Jude stop eating, so the seizures needs to be stopped first. While my aunt was here she gave me some organic baby rice. I tried that last night, and he loved it, and he also loved the teething biscuits she got him. He cannot hold them, but he would bite and chew on them when placed in his mouth. He even reached for the biscuit once or twice. So I think we are seeing a turn towards the better in regards to his eating.
So one thing I have not mentioned is that I received a call from the FT Worth star telegram, about doing a story on my blog. I was honored, humbled, and emotional entangled in my own questions when I heard from them. I gladly accepted their offer, and I completed the interview. I wrestled with myself regarding public exposure to Jude's blog because this started as a very private emotional journey for me. I started this blog as a way to express my emotions, and to inform people what was happening in Jude's life. A way to mass spread the information rather than re-telling the same story many times a day. Each time I would re-tell what a doctor would say tears would seem to flow so in a way this blog saved me a bit of heartache. Writing has always been therapy for me and a way to deal with my emotions. I was probably inspired by my cousins writings even though she is so much more eloquent than I am. I have to thank her for following my blog every single day from the start, I can always count on her to get a daily update. Anyway, my blog then transformed into my own way of trying to help others, while still having a chance to express my thoughts. I didn't however want anything to ever be misconstrued. Luckily I was interviewed by a nice and sympathetic reporter. She touched on everything including my persistence to push childhood stroke awareness, and she even took down Emily's smile box information. We swapped stories of our children, where we live, and life in general. I was pleased with her, and can only help the article will help others. I explained that was my main concern, reaching others that may need information or an ear to listen. I was hesitant, but I still think this article will help. Plus the poor lady probably received a plethora of information because when nervous I never shut up. I will post when it is coming out.
Please have a great night, and hug your kiddos!! Tomorrow is Friday, and I am looking forward to a nice weekend.
When we got home Emily was playing with Jude in the living room. I was laughing at her rendition of song from a toy that Jude. You can see for yourself.
Emily also received her cards in that explain her smile boxes. They were the last piece to the puzzle, and she added them in each one. I also had a long talk with her about all the recognition she is getting for putting this together, and how she needs to do this for the kids not for anything else. She said she understood, and that she never even expected this. So here is a video of her putting the together, and trying to make Jude walk!!!
Jude and I spent some quiet time together after Emily went to bed, and when Mike escaped to his "man cave" (the gameroom). I turned off the TV, and we sat on the couch together. He kept lifting his left arm, and touching my nose laughing. I would ask him to do it again, and sometimes he would accomplish the task, and he seemed to understand he did something good. Other times he would look at his hand like he was trying to raise it, but couldn't quite get it too, and he got a little frustrated. Reminded me of adult stroke victims. Jude laughed, and smiled for me though, and I would kiss his hands over and over. That too became a game, and Jude would try to lift his hands to my mouth. I was very proud of him for trying so hard. When Mike came down I told him everything Jude had done, and he seemed very pleased. I also told him that you can tell that Jude is a happy baby, which is a good thing. He definitely displays emotions which I take as a good sign. It also signifies to me that children and truly born innocent. Jude knows no harsh words, or pain inflicted by others. It takes parents yelling at their children, and the harsh real work before our personalities are shaped. Sometimes I am okay with the fact that all Jude will know is innocence and love.
Also, I would like to introduce you to Jude's twin.........kidding, but still he thinks he is a baby too.
Wednesday, May 27, 2009
Yesterday Jude only took a total of 15 ounces, without any baby food. We do put rice in his bottles so he is getting some extra calories there. We are going on about 2 1/2 weeks of Jude not eating normally. He is teething, but with Jude there are so many other issues to think about. He is having more spams than usual which could be attributed to the paint of the teeth, the weather, or he needs more medication. Again, take your pick. It's a roulette wheel of possibilities sometimes. Last night when Emily and I got home from our mad hatter adventure in baseball we played with Jude. He has this new thing where he "talks". He looks like he is upset, but you will see smiles break through, and you know he is just trying to communicate with you. I was able to record one of the sessions last night. You will notice an adorable smile, but you will also see a small spasm. These are very different from his once violent seizures, and a more accurate way to show his infantile spasms. It's just a subtle movement, and you will hear me say "small spasm". Also, Jude turns his head side to side a lot. For you other CP mothers is this normal?
So the good news is, Jude is communicating more with us. He can also sit for a second without tumbling over. The bad news is he isn't eating well, and his spasms have increased. Is there a happy medium in this situation, or is this the happy medium because if it is ..... argh! Without a further wait here is the video. Again forgive my high pitched mommy voice...I can't help it people!
Tuesday, May 26, 2009
So I went about my business of making the bread, and when I looked over he had given up being irritated. and was sound asleep. I had to snap a few pictures of him because he was so cute sleeping in his chair.
While I was busy in the kitchen. Emily put together her first set of smile boxes.
You can help Emily with her project here. http://www.wix.com/emilyssmileboxes/loveemily
About five pm I was not feeling that great so I took Jude, and went for a nap in my bedroom. Em had some friends over so they occupied themselves upstairs. Jude had not really slept during the day so I figured it would be good for him to get some sleep. We snuggled close, and slept for about an hour. Unfortunately, little Jude was then not tired at bed time, and decided to stay up until 1:40am!!! He giggled, laughed, "talked", and thought it was play time. Mike took him upstairs so I could go to sleep since I had to go to work this morning. He had never pulled the "I am not going to sleep routine", and I couldn't help but laugh every time he would giggle. Mike, and I tried laying him in his bassinet, prior to taking him upstairs, but ever few seconds he would giggle. We would laugh every time his pterodactyl squeal would blast through the air. Jude, still is not eating at 100%, but he did pick up the pace a little yesterday. I asked Mike to follow Jocalyn's advice and talk to ECI, about sending a dietitian out.
So I mentioned my hairdresser in yesterdays blog, and I would like to tell you about her. It is one of those small world, fate type of stories. Mike's best friend owns a hair salon so he works there occasionally so I can get my hair done at no cost. One day Mike's friend explained that he had hired a new stylist and she was going to be fixing my hair at my next appointment. I trusted his judgement, and went in to see the new girl, Kim. Once there Kevin introduced me, "This is the girl I was telling you about with the blog". Kim squealed, and told me she read my blog everyday, and it had been passed to her by Erin. Turns out Erin is a friend of mine, and by small world rules she had learned about my family prior to working with Kevin. We talked in length about the blog, Jude, and her sister. You see Kims sister who is just a bit younger than she is was broad sided by a gentleman that ran a red light. She had a traumatic brain injury, and will never be the same again. Kim told me how they weren't sure if her sister would recover, and how when she did she was like a five year old. Her sister (who is just gorgeous!!) finally recovered to the point of being able to function on her own for a bit, but then reverts back. So when I go into see Kim we talk freely about the issues we face head on. It's like having someone there that speaks the same language you do fluently in a country where the language is not well known. This weekend Kim told me how she feels she had to mourn the sister she knew, and get to know the sister she has now. The brain injury completely changed her sisters entire personality. She said some changes are good, but some are also very challenging. She also mourns the loss of her parents in regards to how they have to care for her sister around the clock. I told her I understood because I had to mourn the idea of a normal healthy baby, and how our lives will never be the same in regards to freely going places on a whim.
We talked in detail about how you wonder so much, and if you are making the right decisions for your loved one. It was an in depth conversation that lasted the entire time I was there. I asked Kim what happened to the gentleman that hit her sister, and she said he wasn't well. It was just an accident, a freak horrible accident. He didn't mean to run the red light, and he wasn't drinking. He has a daughter too so he has had a very difficult time recovering from what happened....I cannot imagine. I feel horrible for both families. We both decided that incidents like this teach you a perspective on life that many people cannot grasp. It teaches you that all decisions cannot be reached immediately, and many diagnosis just don't have a finality to them. She said the worst part about a brain injury is the wait, so true, so true! Her sister once the life of the party now has sensory overload from places like the circus, and she just cannot handle it. Seizures plague her life, and daily medications are a necessity. It's a role we know very well because of Jude's issues. I understand how she says they don't like to complain because they still have her sister in their lives, but how it's been trying. She said "It's nice to have someone to talk to". I told her "I understand and I feel the same. It's like you don't want anything to happen to anyone, but it's nice that someone relates.....and gets it." We talk about how complex the brain is, and how amazing it can be.
Okay, moving on. I know I have been bragging on my daughter a lot lately, but well I just love her. Yesterday she had some friends over and one was a little boy. Boys will be boys I guess, and he told an ethnic joke that we all heard as kids in front of Emily. Mike happened to be in the room with them, and had his headphones on. Although, the kids didn't know he had them turned off, but he sat there quietly listening to see what would happen. He said he thought of correcting them, but wanted to hear what Emily would say. Emily didn't laugh........and her friend said "Oh let me guess... of course EMILY doesn't think it's funny". Emily replied, "No I don't think it's funny. When you talk about one person then it just leads to talking about another, and that's not nice!". So her friend told the other little girl in the room, "I will tell you more jokes later". Emily piped up that she thought that was a good idea so she didn't have to hear them. Mike was impressed, and I was VERY proud of her!!! I have tried to raise her that everyone is equal and we shouldn't be judged on our race, religion, or sexual preference, because that's how I feel. It was ironic that later that night Mike and I sat down to watch the movie Milk, and I was moved to tears. I remember my mother being furious that Harvey Milk was shot, and that the man that shot him presented the "Twinkie Defense", I couldn't believe I could recall her being so upset, but I did, it's like it flooded back to me!! I knew that if she could have been one of the 30,000 people holding a candle light vigil for him she would have been. I was very moved by that scene, and that the movie mixed in real footage.
Anyway, I guess I have blogged enough for today but I had a lot to say.
Sunday, May 24, 2009
We were suppose to pick Emily up from her dad at about six. Since we knew we had to get out I suggested to Mike that we ask his mom to babysit Jude for a few hours. Emily has complained that since we have had Jude we never go to the movies anymore. I tend to agree with her since the last movie we saw in the theater was "Charlotte Web". I am pretty sure that Dakota Fanning has aged many moons since that movie premiered. So we picked Em up, and surprised her with the news that we were going to see, Night At The Museum 2. She was so excited, that she just kept saying "Number 2, you know like the new one...the new movie?". We had the best time. During the movie Mike kept patting my hand, and rubbing my arm. Later he told me that it felt great that we all spent some time out without any worries. We knew that Jude was well taken care of so we were able to relax, and just enjoy the movie.
I had a wonderful time with my family, and the movie was great. It was a light hearted movie full of special effects, and history so it was right up my alley! Prior to the movie starting I was watching some young boys running up and down the stairs looking for places to sit. I smiled at them gently, and wondered if Jude would ever enjoy a theater. I knew that the possibility of sensory overload will issue, and the possibility that he may never know what a movie is. I wondered about the boys families, and if they knew how precious they are. It's amazing what all races through my head in fleeting moments. I was then distracted by the same commercials that scrolled through the screen prior to the previews. An ingenious, but annoying idea......commercials prior to a movie. Just when you are about to tear the large movie screen of the wall the actual show starts, and you can breathe a sigh of relief.
Once we picked Jude up he was all smiles at my voice. He has started this adorable snuggle move where he moves his face down into my cheek, and shoulder...I love it. We got home, and I sat with Jude on the couch where I feed him his bottle. While feeding him he will always look up at me, and just gaze. I wonder how long I can hold him like that? I just love it!!!
So I mentioned Jude's CP. It's really beginning to rear it's head. Jude's toes are curling in, and he is turning his hands in along with them being grasped. I worked with him a lot today on this, and on sitting up, but his head kept dropping. I am determined to get him in with therapy several times next week. I always encourage Jude telling him "Keep your head up baby, you can do it!!". I believe he can do it. I understand that the movements we take for granted will always be difficult for Jude. I believe in him though, and I believe he will learn to keep his head up, sit up, and walk.
Tomorrow is Memorial Day, and we are having some close friends over. I am sleeping in again though, and look forward to a nice morning snuggling with my family. Emily is going to have her little cousin over which is great. I hope that she and her cousin will become as close as my cousin and I are.
Everyone have a wonderful holiday! If I don't get to post tomorrow I will post Tuesday. I have a story regarding my hair dresser, and her sisters accident. I wanted to post it tonight, but it is a long story, and my hairdresser is such a sweet person. I would like to take my time telling her story. Until then, I am off to watch The Tudors, I recorded..........I looooooove The Tudors.
Saturday, May 23, 2009
Emily played an AWESOME game of softball last night, and I am so proud of her. I also saw my family from Missouri tonight, at my cousins house so that was wonderful. It's late and I don't have much time, but I just wanted to post a quick update.
Please have a wonderful, and safe holiday weekend!!
Friday, May 22, 2009
I normally go to this moms site for my daily dose of uncontrollable laughter. She sometimes has a dirty mouth, holds nothing back, and blogs about things most of us just dream of discussing. Yet today I was in tears because I related to most every word she spoke. I have not had to deal with the death of a child though, and I pray I never will. She has dealt with a child with disabilities, and the loss of children. It seems there should be a limit to what people are given to handle. I do understand though about feeling like death is waiting at your back door. I have lost my mother, my boyfriend, my grandparents that raised me, friends, family, etc. I have seen more death than I want to, and I feel that he lurks around the corner. I have an unhealthy fear that something will happen to those I love. A fear I keep controlled, but it's still there.
Anyway, please stop by Tani's blog today, and read her eloquent posting. Her words are laced with emotion, and she speaks of so much I relate to..........even how other siblings are affected. I am still learning about Tanis, and trying to catch up on the history, but so far...... her life has touched me.
As I stated Emily received her first set of her smile boxes that she will be taking to Dallas Medical City. We are just waiting for the smile contents to arrive, and then we will go get the toiletries too. She is very excited about this project. We invested in the initial boxes, and we are hoping to obtain donations for the future ones. Thank you to everyone that has sent a donation so far, your monetary support means a lot. We will be ordering another set of boxes soon. Here is a picture from yesterday, as you can see they are cute gable boxes, and then we just fill them up with goodies.
Jude still had some messy diapers last night. I am still at a loss whether this is the end of a viral bug, teething, or medication. It's anyones guess! I was talking to our friend Natalie yesterday, who has been so sweet trying to help raise awareness about childhood strokes. Anyway, we were talking about the differences with moms of special needs children. Jude's case is by all means a lot less serious than some children. Although, the reality is still there that when Jude gets sick it's so different then when Emily was sick as a baby. I honestly think "is this teething, is this viral, or is this a life threatening reaction to seizure medication?". So it's a bit stressful at times. It's never easy being a parent though.
When I got up this morning I heard Jude breathing rapidly, and making small whimpering noises. I told Mike that "the bunnies are chasing Jude in his dreams again". Then suddenly Jude awoke with a startle, and went into a seizure...ARGH! I think he was having a nightmare, and the stimulation to his brain was just to much to handle. We soon got him calmed down, and then he was quickly trying to eat the air because he was hungry. He moves his mouth around in the air looking for a bottle when he wakes up in the morning. He knows that eventually someone will stick food in there!
I am looking forward to the holiday weekend, and spending time with my husband and Jude. Em will be at her dads house, and I am going to miss her a bunch. I asked him if I could grab her Sunday vs Monday on the holiday, and he agreed. In addition my family is in from Missouri so we will get to visit with them one night.I am looking forward to seeing them. Mike, and I also have a sitter for Saturday night, and are having an adult night out.
I posted this on my other blog www.ourfamviews.blogspot.com, but I wanted to let my readers here know. Emily is now on the kidsareheroes.com website for her work on her smile boxes. If you click on the link, and go to Lily's kids you will see her. You can also send her a "shout out" just by clicking on the shout out tab. Emily had a big day yesterday because she received this honor, and another one at school. Emily's principal read her book about Jude I mentioned to the entire school body, and then presented her with a certificate of accomplishment. She was so proud, and I am very proud of her! Her teacher then emailed me today, and said that he believes Emily's altruistic actions are allowing her to deal with this situation, and also improving her self esteem. That was great to hear!
Thursday, May 21, 2009
I have been rather busy today so I have not been able to post. Jude seems to have cleared up his tummy bug, but he is sleeping all day again. Therefore, we are now unsure if this was in fact a tummy bug, or medication reaction. Although, the medication levels in his blood are normal so I am not to worried. I just talked to Mike, and Jude has only taken 10 ounces today, so we are hoping he takes more soon. This is what Jude is doing today: Maybe I should consider getting him off the comfy bed? I am joking, because we do everything we can to wake him, but he will have no part of it.
On my way to work today I thought about how normal our lives have been lately. My mind floated to places to take Jude like the zoo, picnics, hiking, swimming, and then reality set in. My phone rang, and it was Mike telling me what I mentioned above.....Jude was not waking. So yet again I get a reminder that ..... nope we are not normal. People including myself always say, "I hate that reference normal...what is normal", but we all know what it is. I think we just choose to say that phrase because it makes us feel better, and in some ways we believe in it. It's a reality that I cannot really take my baby swimming, because while I am holding him he will plant his face into the water. Jude still has a hard time holding his head up. Yeah, it's a feel sorry for myself again moment, but the moment always passes quickly. I remind myself how wonderful Jude is, and how much he has taught me about life in general. For instance, I don't get as aggravated with things anymore (except angry people, and stupid drivers), and I don't judge as quickly. I understand that people confront tragedies head on, and that can impact their lives. I used to look at people wondering why they lived a certain way, I now no longer question. If someone is behind on their payments, lose their house, lose a car, or just have bad things happen in general who am I to judge? It's easy to say someone "should have" or someone "can", when we aren't in their shoes. I have also gotten to know some really incredible people that I may have never met before. I am not saying I was judgemental because I wasn't, but I do think I worried to much about what other people thought of me around certain people. Shallow shallow existence, and I am glad I kicked that habit. The person living down the street from you covered in tatoo's, and living in a modest home may be the best person on the inside that you have ever met!!! Now if I can just get past worrying what others think about my appearance, and such. That is something I need to work on.
I try not to get down about Jude being disabled, because it doesn't make him any less of an amazing baby. Every now and then I think it's perfectly normal to mourn for what you wanted for your child. I just realize you cannot dwell on that. The other night we received a catalog for therapy equipment, and long term care equipment. Mike flipped through the pages, and I saw him tear up. He said he feels like Jude will need these items, but I disagreed. I told him I think Jude has surprised us already, and will continue to do so. He is becoming more interactive with us, recognizes our voices, and is now reaching some. Time will only tell if Jude will walk, but I have faith he will!!
So I made myself a pediatric stroke awareness bracelet. It was my first attempt so it isn't that fabulous dahhhhhling. I want to learn how to make bracelets because I would love to have one that is fancy with rhinestones, etc. This is a new goal of mine. I am rather crafty, but I do need a class.......trust me I do.....I already broke the clasp on this one so it's rigged right now.
Please stop by my other blog www.ourfamviews.blogspot.com, and read about Coley who started a birth moms site. Also, I could use some followers on that site, thanks!
Wednesday, May 20, 2009
So I am really tired. Emily has had late softball games the last few nights, and it's thrown our routine off. I haven't been getting in bed until after midnight because there is always a lot to do when I finally get home at 9:45. I so love watching her games tho, so it's worth it. Her team lost last night, but they played their little hearts out. Emily had a great catch at second, and an awesome hit after the ump made her angry! He called a strike that she disagreed with. I saw her circle her little bat in the air, hit the home plate, and I said "Uh oh.....she is mad". Next thing I know WHAM.......the ball is traveling to outfield. Now if I could just teach the girl to run........she jogs to base. She has been a part of a wonderful team this year, with an incredible coach. It's always better to be part of an energetic postive team with a good coach.
Emily's smile boxes website is now up and going. I plan on getting a blog button made so people can help her out. Until that time here is the link: http://www.wix.com/emilyssmileboxes/loveemily. It's only one page right now, but as she makes boxes and drops them off we will add pictures.
Also little miss thing wrote a paper on bees for her school. Her last line was "I think the queen bee gets tired. I mean she has to get tired after having 2000 bees a day???" I cracked up!
I will be sure to post how Jude is doing. We have to keep a close eye on him for dehydration. I am hoping he perks up by this afternoon.
Monday, May 18, 2009
Anyway, Emily had a dental appointment today, and then a late softball game. So we finally got home, and I needed to wash the uniform for tomorrow's game, feed Jude, change Jude, get his meds, dishes, blah, blah. I finally just sat down for a minute prior to drying Em's uniform, and all I keep hearing is "MOOOOOOOOOOOOM?" radiating from the upstairs. I love my kiddos, and am so thankful for them, but tonight I needed five minutes! Emily should be asleep, and I think Mike warned her that "Mommy needs a minute". I am now resting for a second with a glass of wine, and the computer. I needed chill out moment before mama freaked out.
Anyway, so prior to the softball game Em sat down next to me on the couch. Here is our conversation.
Emily: Mommy, you know how you like ancient things?
Me: (laughing) yeah
Emily: Well we learned today that anything 30 yrs or older is "ancient"
Me: (walking head first into this blinded) Oh that's nice
Emily: Yeah, so you are ancient like the things you like
Me: (staring blankly blinking).....ummmm do you mean antique?
Emily: Yeah yeah, you are......antique (she says proudly)
Me: Well isn't that just nice..........(said irritated)
I considered her punishment, but none was fitting.......yeah yeah you can laugh at me.
So Mike got home from the nursing home at about 1:45 am. After he got settled and we fell sound asleep, little Jude decided to wake up at 4, and then at 5:30. I let Mike sleep because... I mean he did brave the nursing home!! He deserves big kudos for that, and much more. Anyway, I finally fell back to sleep about 6:15, and my alarm went off at 7 for the softball game.....ARGH. It was raining, and so I figured all the games would be cancelled. Emily was so sure they were cancelled that she had turned her alarm off, and gone back to sleep....the stinker. So I logged on to the computer only to see an email that all games were on for Saturday...WHAT??? I sat around for a bit, and finally got an email that all the games were cancelled. Seeing how I was exhausted, and we had a double header scheduled I was a bit grateful. I love watching Em's games, but mama needed some sleep. Mike can go for days without sleep, but not me, I turn into Godzilla with no sleep. So I dragged myself back to bed, only to see Jude smiling at me. Luckily, he went back to sleep pretty quick though, and we then all slept in. You have to love his smile though,
Saturday night Em ended up staying the night with her cousin, and we went to join them for pizza. I was so tired from the night before that we went home early, and I CRASHED into bed. Sunday we had a play date with Jude's friends Kendall and Cayleigh, you can find both of their blogs on my links.
It was nice having a bit of normalcy in our lives. Yes, they do all have disabilities, but the idea of a "play date" was still very "normal" to us. We had originally scheduled to meet later in the day, but the girls were nice enough to reschedule for noon since Emily suddenly had a rescheduled softball game at 4. We swapped stories about therapists, doctor's, programs, and more. We also compared what our children did, and gave advice to each other. I learned so much from these girls, and I am honored to know them. I was so impressed with all the items Kendall's therapist had brought her. Jude was particularly fond of the red vibrating ladybug;
He would smile every time Emily pushed his hands down to make it wiggle.
Yes as you can see Jude was the only boy. Mike (of course), had Jude doing a "booty" dance that he was the big pimp........sigh........but it was funny. Cayleigh's mom said her dad had already laid down the rules about Jude...I thought that was very cute. I was still a bit tired, but overall I really enjoyed our visit.
So Emily, and I rushed out the door from the play date for our hour drive home to rush her to her softball game. Although, once we arrived at the field, in full uniform, the place looked like a ghost town. I assumed that in my hurried state I overlooked the fact the game was at a different field. I called the coach in an apologizing panic, only the hear that the games were again cancelled. While I was at the play date they had emailed all the parents cancelling the games. So we decided to make our way to the store to find some shoes for Jude, only to run into Emily's coach.......while she was in full uniform......we had to laugh.
Jude had many spasms throughout the weekend, but never a full long seizure. The spasms can still be detrimental to his learning capabilities. Jude is currently at the doctor's office waiting to be seen, so I will post an update tomorrow.
Ps ~ Don't forget to stop by www.ourfamviews.blogspot.com today. I blogged about the Spohrs today.
Friday, May 15, 2009
Mike has been rather bored at the nursing home. We have texted each other the better part of the night. Since he is always the comic he has sent me pictures of the tv, the toilet, and more, showing me that the nursing home is "pretty decent". Each time I received a new picture I laughed, and shared the picture with Emily. He also sent me a video of Jude trying to eat his Elmo doll. Jude seems to think that anything next to his mouth is food........including poor Elmo!! Little red Elmo didn't stand a chance.
Tonight while Em and I were at dinner there was an adorable baby girl next to us squealing her heart out. She kept trying to stand in her high chair, and her mom would tell her nicely to sit down. Emily pointed her out, and I smiled at her. I told Emily that I thought the baby defying her mother insisting to stand was cute, and I explained that she wasn't much older than Jude. With those words Emily seemed to realize that Jude's disabilities are really shining through. Jude's hands are clinched, his toes pointed, and his arms rigged. I am adamant on getting him into extra therapy next week. Anyway, when Emily looked at the little baby she smiled politely at her, and then twisted the pediatric stroke awareness bracelet on her arm. My girl seems to understand a lot.
So I would like to have an honest moment. I have struggled this week with baby items at my house. Jude is outgrowing so many things like his swing, clothes, and more. When Mike and I found out we were pregnant with Jude we talked about his future even before we knew his sex, and how we would have at least one more baby. I talked about how great it would be for siblings to grow up together. Now I stare at these items, and I know I should donate them to a better place, but I have a hard time parting with them. It's an end to an age of having children for me, and it's a heartbreak that I am not ready to face. I wanted one more child.......I wanted one more tiny baby to depend on me for a bit. Yet I am afraid to take the chance, even though the possibility of having another baby with a stroke is very minimal. The idea of bringing a baby into the world when we are financially strapped is not an option, and if we wait five years that might have consequences to. So I neatly pack Jude's clothes away. I have put his swing in the guest room, and I will eventually take it all to someone who needs it, and know I am doing what I should. There are many women in the world that want just one baby so I count myself very blessed. I have to beautiful children, each of which have taught me to appreciate life in different ways.
On a funny note, while writing this I worked myself up, and scared myself silly. I kept hearing something banging against my front door over and over. I texted Mike, "I am scared because something keeps hitting the door, the alarm is set, but I am still scared". He called me right away, and asked me what kind of noise I was hearing. I told him that it seemed to loud to be the cat, and I was unsure what to do. So with Mike on the phone I turned the alarm off, and opened the door. All Mike heard was (excuse the language people). "Holy shit you fat ass cat.....how could you even catch that thing?".
Our cat Scooter had caught a huge bird, and was throwing it against the door repeatedly. I guess he REALLY wanted me to come see what he had brought us, and wasn't giving up until I gave him recognition. I guess this was my gift for purchasing a new brand of cat food he liked??? Da** cat scared the heck out of me!!! He probably walked off muttering something about me being ungrateful under his breath.
So my poor Hubby has to check into the nursing home with Jude tonight to finish qualifying for the MDCP. This is the program that the state of Tx offers medically dependent children. It based off the child's "income" not the parents, which means most all children qualify. There is a very long wait, but thanks to Jocalyn she explained a way to move up the list. Jude's case is severe because of his seizures, and brain damage. So after months of jumping through hoops we are finally coming to a close on this subject. That means Jude will have supplemental insurance to his primary, nursing help, and more if we need it. It's truly a blessing! I am just sad that Mike, and Jude will be gone tonight. They had to check in at four, and since I work and have Em tonight there was no way I could make it. The good news is they will release them at midnight so it's truly just a few hours. I am going to have a girls night with Emily, which I think we really need together. Plus, I may have some family over later anyway until he gets home.
I would like to share my new magnet that is now on the back of my car. I would love to get more to sell them and raise money for stroke awareness, but I am afraid the lady only had a few left. I am going to see if I can hunt down a company to make some more. (Don't you love the shadow of my hands?)
In addition I talked with the stroke group yesterday about the walk in September. There are a lot of rules and regulations so I am hoping I can still pull this off. I also got to see a preview of Emily's smile boxes site, and I am very excited! Priscilla is putting the finishing touches on the website, and then it will be up and running. I will be adding photo's of Em making, and delivering her boxes once her supplies comes in. We ordered the first 12 boxes, contents, cards, and more yesterday. Emily is very excited about this!!!
I would like to encourage you to PLEASE stop by my other blog today. I would like you to meet my Friday Hero Rich from The Perfect Focus. He is such an inspiration! http://www.ourfamviews.blogspot.com/.
Thursday, May 14, 2009
Before this happened I was watching my most favorite movie ever....Love Actually. I am a lover of wonderful movie quotes, and this one contains a plethora to choose from. If you have not seen this movie please take time to enjoy this amazing story......or rather stories.
My favorite line is the one at the very beginning:
The prime minister says " Whenever I get gloomy with the state of the world, I think about the arrivals gate at Heathrow Airport. General opinion's starting to make out that we live in a world of hatred and greed, but I don't see that. It seems to me that love is everywhere. Often, it's not particularly dignified or newsworthy, but it's always there - fathers and sons, mothers and daughters, husbands and wives, boyfriends, girlfriends, old friends. When the planes hit the Twin Towers, as far as I know, none of the phone calls from the people on board were messages of hate or revenge - they were all messages of love. If you look for it, I've got a sneaking suspicion... love actually is all around. " This goes along with my post earlier in the week that people truly have good hearts.
How about another of the movie's quote, "Life is full of interruptions and complications", isn't that the truth? Plus you have to love Natalie who curses through the entire movie. I think she was my favorite character.
Anyway, it was a sad night with a good movie, and that made things a little better. I have learned to feel the pain, help Jude through his pain, and cling to the things that bring us happiness.
Jude is sleeping now......I will update more tomorrow
After my rough day everything finally seemed to fall into place last night. I was determined to get home and just appreciate my kids. Jude was still having small spasms, and I believe that is causing his lack of eating. He has some blood work today, and he will see the doctor on Monday. I know he will increase the Depakene in hopes it will eliminate the seizure activity. It is medically interesting watching how seizures can affect Jude's everyday learning and memory capabilties. It's emotionally straining though watching him drift off because he has forgotten to suck on his bottle.
Emily is always great about including Jude. She was especially interested in him last night, and spent a lot of time with him. She even pulled him up next to her at dinner (ignore my messy kitchen)
She then spent some time with him in the living room
It seems when I start getting down someone does something that makes me feel all warm and fuzzy. I remind myself that people really do have good hearts. I received an email today from The Whitton family over at http://thewackywhittons.blogspot.com/. Please stop by and see how they honored Jude for pediatric Stroke Awareness day. They went on vacation so they drove all the way to Florida with their vehicle displaying awareness!
On another note I have been touched by two others this week. Sometimes I think God knows he needs to steer people your direction. I had two different woman come in my office on seperate occasions and both had different tales. One mother was dealing with the loss of a child due to a car wreck, and the other a child that is fighting a bone disease. We talked about their insurance, made arrangements on payments, and then discussed our lives in general. I received hugs from strangers, and comments on how it was fate they stepped in my office. We shed tears for our kids, and I connected with people I never will know again except through a professional standing. It was touching, and I learned a lot from them.
Ps. Stop by firstname.lastname@example.org and hear about Matt Logelin
Wednesday, May 13, 2009
Sometimes I feel at a loss with trying to control things at work, and at home. I get so ran ragged that I don't feel like myself. I guess you lose a piece of yourself when you learn to deal with life in a new way. I began working out again this week, and soon I need to work on a tan. Maybe I can find a bit of myself through superficial looks? Kidding. I am just stretched today is all, and trying to find a balance between work, home, and a sick child. I feel like I am teetering myself on the balance ball at the gym all the time.
We are in the final stages of wrapping up the respite care for Jude. This has been a very long and drawn our ordeal. I will be relieved when it's finally in place. I also would like to inform the state that no branch dealing with children with disabilities is pleasant to work with. Anyway, the point is it will be there soon, and that's a wonderful thing.
I am looking forward to going home, and seeing my kids. I plan on taking a long walk with Jude in the stroller, and Em riding behind on her bike. Oh, and we had a scare with Em last night after her softball game. We were thrilled because Em hit a ball into outfield, and would have gotten a home run is her coach had not held her up on 3rd (she was winded). Anyway, we got home and she felt something in her throat. When I looked there was a large pus pocket, and I just knew she was getting strep. Strep and Emily walk hand in hand, and Jude getting strep would be a bad thing. So Mike took her to the doctor today to learn that somehow a piece of food had gotten lodged into a cut, or hole, or something and gotten infected...GROSS! So she will be fine. Another day of school lost, but she will be fine. Em plays her last games Saturday, and Tuesday so cross your fingers she wins. So far her team has done very well this season.
If you get a moment please stop by my other blog to meet Shelley. She started a foundation that created many playgrounds that cater to disabled children. http://ourfamviews.blogspot.com/
Monday, May 11, 2009
Anyway, Jude is still having some spasms, but they are very spread out. I know this is due to decreasing the Depakote by 1ml. Once we can get him accustomed to increasing the dosage I expect the seizure activity to stop. The therapist came yesterday to work with Jude, but Jude would again have no part of it. She said she thinks Jude is beginning to realize who she is, and is protesting working because someone likes to hold him all the time. I have NO idea who she is referencing?!? Anyway, the vision therapist was suppose to come with her, but yet again they didn't show. We have now been waiting on vision therapy for three months! I am beginning to get rather irritated with them, and that is NEVER a good thing. The therapist also made reference to Jude's increase in picking his head up. She explained that lifting his head when it starts to fall shows brain activity. Jude is beginning to understand he needs to keep his head up so he is working on achieving that goal. This was great news for us.
When I got home last night I sat Jude in his high chair while I did the dishes, and folded laundry. I then grabbed the camera to snap a few shots. He spit out his paci, and smiled like he knew what I was doing. I got some smile pics, but I liked the "dropping the paci" pic more.
I then gave Jude a bath, and talked with Emily about her day. Emily received her published book about Jude's trip to the hospital. She had taken it to school, and her teacher asked if he could show it to the principal. Emily was so honored she came home just raving about her day. Since I get paid on Friday we are about to get started on her smile boxes, and get her website up. I will post the address as soon as I get the link.
Ps ~ Be sure to stop by www.ourfamviews.com
Sunday, May 10, 2009
So what is a mother? According to Wikepedia: A mother is a biological and/or social female parent of an offspring. Because of the complexity and differences of the social, cultural, and religious definitions and roles, it is challenging to define a mother in a universally accepted definition. The title mother is often given to a woman other than the biological parent, if it is she who fulfills the social role. This is most commonly either an adoptive mother or a stepmother (the biologically unrelated wife of a child's father).
It is challenging to define a mother in a universally accepted definition? Really? A mother is one that loves a child unconditionally biological or not! One who would give their life for their child's, and does everything they can to nurture that child in their best ability.
Mothers day is bitter sweet for me. I am so thankful for my children, thankful for my grandmothers, Kay, and my fellow mothering friends. Yet I always miss my mom too which is 100% natural. So when I tell you, "Happy mothers day" I truly mean it. I mean to spread support and love to those that are moms, those that have lost their moms, and those that have lost their children. I wish the best day to all the good moms in the world including those of challenging children, and children that are challenged. I wish this because without moms the world would be at a loss.
Here is a poem I like
Your mother is always with you...
She's the whisper of the leaves
as you walk down the street.
She's the smell of bleach
in your freshly laundered socks.
She's the cool hand on your brow
when you're not well.
Your mother lives inside your laughter.
She's crystallized in every tear drop.
She's the place you came from,your first home...
She's the map you follow
with every step that you take.
She's your first love
and your first heart break..
and nothing on earth can separate you.
Not time, Not space...
Not even death...
will ever separate you
from your mother...
You carry her inside of you...
Not even death will keep you from your mother........what a true statement. True for those that have lost their moms like me, and those that have lost their babies. I thought of Maddie's mom today, and her comment about how the ads for mothers day are torturing her. I understand that feeling well. So for those that have lost their babies I remember you today.
Take the one day of the year set aside to celebrate your goodness, and enjoy it. My aunt has a sign that says "Having children is like being pecked to death by chickens", and at times that is very true too. Celebrate the quietness you should be awarded today vs the twenty million questions a day, baths, cooking, cleaning, sorting, paying, and more. Take a break, and just love them, and let them LOVE YOU.
Have a good day.
Saturday, May 9, 2009
The bride looked beautiful, and everything was just gorgeous. I took a few pictures so I will post them on Monday. They also had a photo booth, and after Mike and I relaxed, ate, and had a glass of wine we enjoyed ourselves. I think the stress from the week just built up, and we needed some time away. I was so excited to see my friend Darla was there, and we girl chatted a bit.
Later that night they began to show a video of the couples actual wedding in Mexico (this was just their reception). I was watching the video of the couple so happy, looking beautiful, and enjoying their new family. Then there were some little kids playing around the water fountain right next to me during the video. The kids were yelling, running, and laughing. Suddenly, I felt overwhelmed and tears started stinging my eyes. I tried to hold them back but they just started falling. I also felt dizzy, and as if the world was vibrating around me. I quickly scooted myself outside so no one would see. Soon I recovered, and I brought myself back inside. Mike asked me if I was ready to go and I nodded. My friend Darla came to say her goodbyes, and she was so sweet. She said, "I read your blog everyday you are such an inspiration" and I burst into tears again. I tried to apologize, and I only got out "the video, it was the video". I felt terrible! I was the downer at the wedding, but luckily I was in the very back and only Darla saw me. We quickly left.
Once in the truck Mike asked me what was wrong. I explained I just got overwhelmed with all the happiness. I told him I was so happy for the couple so not to take things wrong. I also explained I was so ashamed that I let myself get down from watching others peoples beautiful children, and innocent lives. Their lives were untouched by any sadness, and I wouldn't want it any other way for them. I just felt envious for a second, because I wanted Jude to laugh, run, and play in the water. I just got overwhelmed..........I never get overwhelmed. I felt so bad....
I texted Darla on my way home with an explanation. She texted back there was no reason for apologies ever. You have to love her! She has been so supportive with everything that has happened in my life in the past year.
The wedding was gorgeous, and I am so glad we got out. Maybe I needed a flood of tears.........it relieved some stress. Jude had another seizure last night so I think regardless of the tiredness from the increase in meds he does need the higher dosage.
Friday, May 8, 2009
The other night we retrieved Jude's high chair from the attic. It had never been opened, and we weren't sure we would be able to use it. Jude cannot keep his head up that long, but I was confident we could get the chair to work. I wanted him to sit at our level with us while we are dinner. So we were strapping him in, and he was not sure about the whole thing. Once we got him in he had to work at times to keep his head up, but overall did very well. I think this will be a great therapy tool for him.
Jude unsure of the entire situation
Hey wait ......... you mean you leave me in here???
If his sissy will play with him then it makes everything ok!
Ps ~ Please stop by my other blog at www.ourfamviews.blogspot.com and read on my post regarding my closest friends. I would love for you to see how special they are! I am also going to be adding my friend Fleck soon ;)