Tuesday, August 31, 2010
Jude is still not eating well, or sleeping well. I am dragging tail end today, but I have to go work out at eleven. When Mike, and I went to lunch this past weekend he blurted out that he thinks it's time to convert the dining room to Jude's room. This has been the plan all along, but Mike has always insisted we wouldn't need to complete this until Jude was about 5. Although, Jude is getting so big that it is going to be difficult for myself, or the nurse to continually carry him up and down the stairs. Our dining room is perfect because it is separated at the front of the house. We would like to enclose the wall, and put double doors in. We will not be installing a closet because he can use his dresser drawers for his clothes. This will allow us to continue to market the house as having a separate dining room/study if we ever have to sell. We will have to save for this conversion, but it will get taken care of. I would like Mike to build shelves for Jude's therapy equipment, and it will be nice for Jude to have his own space.
Jude's doctor wrote nursing orders for Jude to increase his nursing after the surgery. I am hoping this is all he will need. This in turn will lower Jude's respite, and Mike will be getting a job! The next month should be interesting, and I am wondering how it will all turn out.
Monday, August 30, 2010
This weekend was busy as usual, but relaxing at the same time. I biked both Saturday, and Sunday to try to keep up with my work out routine. I took lunch off today to catch up, but I will be back to working out tomorrow. I am feeling much better, and I hope to inspire Mike to start working out soon too. When we met Mike was ripped from head to toe, and was wanting to become a trainer. Working out is a release of stress to him, and I know it would help him mentally. We both had stopped working out when our gym wouldn't watch Jude due to his seizures. Maybe we should open a gym that has respite services for special needs parents?
I had a Scentsy party on Saturday, and my friend Fleck went with me to keep me company. On Sunday my aunt came over to watch Jude, while Mike, and I went to eat lunch via a gift card we had received. It was all wonderful until our truck said we had 42 miles left until we were out of gas, and we ran out anyway. We literally both just laughed, and called roadside assistance. Just another day in our life I guess.
I am very busy this week. My work is busy, Emily's Smile Boxes has something MAJOR going on that I will inform you about in September, Jude's birthday is this weekend, his surgery is next week, and more. All that on top of Scentsy going through their spring/summer to fall/winter conversion. This has created a flurry of interest in Scentsy......which is awesome. So if I don't reply to you, or get back to you right away just know that is why.
Now if you would feast your attention to the right on my blog you will see a new link I put up for http://www.babybumpz.com/ . Please check out their site. For every headband purchased they donate a headband for cancer, or other charities. They are sending headbands for Emily's Smile Boxes, which is amazing. Not to mention they have some incredibly cute stuff!!!!
Saturday, August 28, 2010
Jude seems to be very happy today. We are having a problem with him throwing up again, but I guess that will be over with in a few weeks....I hope. I am very nervous about Jude going under, but I will have faith that everything will be just fine. I have taken two days off work so I can be with Jude in the hospital. I had some vacation time left, and my boss understood.
For my Scentsy fans, don't forget all the spring/summer scents, and warmers are going away 9/1. You can access my site at www.scentsy.com/JennOrtiz. It's my second job, and your purchase is appreciated. The new catalog will be up by 9/2, and there are lots of amazing Christmas presents that will be available.
Friday, August 27, 2010
After much investigation, and talking to others we decided to skip the Mic Key, and go with the mini 1 non balloon. We are also requesting a specific pump. I put a call into the doctors office yesterday, but I have yet to hear back from anyone regarding this situation.
Last night was Emily's meet the teachers night, and it was interesting. It seems Emily will have her hands full with her pre-ap math, and science. She had a project due every six weeks in science, and it will be given in week 4 giving her two weeks to complete the assignment. So far she is liking middle school, and I hope that attitude continues.
Next week is Jude's birthday. I am grateful he is with us to celebrate it, and his sweet smile. I am grateful for the medical field supplied to us in the US. I am also grateful that I live in the mecca of medical technology. Dallas, Texas has so many wonderful doctors and facilities available. I am so thankful for the friends we have met that have taught me life's struggles only makes us stronger, and despite how difficult the past two years have been I feel blessed.
I guess I have decided that, no this is not the way I intended life to be, but I should be grateful for the life I have been given.
Wednesday, August 25, 2010
So let's inject a little humor since my blog has been very serious lately. So yesterday was what I deem a "craptacular" day. I didn't even mention yesterday that Mike got a speeding ticket on the way to the surgical center, or that Emily had an emotional day with her locker. There is more, but I won't delve into it all, let's just follow my cousins saying that "Mercury was jacked up" yesterday. My friend Kel had sent me a nice note telling me to go home, take a bubble bath, and enjoy a glass of wine. I emailed her back, and told her I am on a strict diet of no sweets, low calories, and no alcohol. Once I got home I was just spent! I gathered the family up, and a little money, and we went out to dinner. I figured we would be safe from any other incidents if we hid out at dollar taco night at the local Mexican restaurant, but I was wrong. As I was walking into the restaurant my pony tail holder snapped sending my hair flying in every direction. I knew I didn't have a pony tail holder in my purse, but I remembered seeing a black ribbon Emily had left. So as we were walking to our table, I fished through my purse for the ribbon. When I located it with my fingers I pulled, but it was stuck. So therefore, I pulled harder, and said ribbon then acted like a slingshot by shooting a tampon with great force into the air, and I watched in horror as it landed in the middle of the restaurant. The restaurant full of people there for dollar taco, and beer night. I avoided eye contact with everyone as I quickly walked to pick up the glaring embarrassment laying on the floor. Mike's back was to me, so he had no idea what had just taken place. Once we sat down I looked at him with disgust, and explained what happened. Emily said "what happened?". Mike replied "Your mom is dropping pontoons for everyone to see". That's it, this day officially sucked. So the waiter came over, and said "May I get you something to drink" and I replied "Why yes...yes you MAY!" Said diet went out the door last night!
Tuesday, August 24, 2010
anesthesia team. He said they will have an ICU bed standing by if it's needed. He then told us they will go through the belly button with a scope, and then insert the button in the best place they pick on his stomach. He said Jude will stay at least 48 hours in the hospital. The doctor told us that he believes this is a decision that would have to be made in the future with Jude. He then told us the G button is really a decision that is made to better the family's life. So then Mike started worrying about that.
On the way back Mike, and I discussed depression. He said he is just very bitter, and very angry. I explained that it was up to him to work through those issues so he can accept and appreciate Jude for who he is. He said he isn't sure he will ever be over being angry about what happened. He said I (Jenn) am someone that can forgive and let go, but he is a fight or flight, and he gets angry. I explained to him that being able to cope, and move on is the way I learned to deal with life. I started learning this when my mom died at 7. If you cannot learn to cope, then most people end up taking the wrong road in life, and I didn't want that. I explained to Mike that I understand where he is coming from. There are many days I just want to be able to breathe again, and I cannot. I explained that I admired the little two year old today at the doctors office toddling to push the elevator button, so there is always grief. Although, I feel like if I couldn't work through these issues then I never could really appreciate Jude. I couldn't appreciate his sweet smile, how he looks for me when he heard my voice, or the small advancements he makes. It's being able to understand that everything Jude does, and each day he lives is truly a blessing, and believing that.
After the surgery consult, I rushed home to get my car, flew into the house to grab my lunch, and back out to race to work. Once at work I sat down, and at my lunch at my desk while trying to catch up. The working moms life is always full of guilt for not being at home, and guilt for not being at work. The days you do stuff like this you don't get a break until you get home. I am not complaining, just putting things in perspective. Soon after I arrived my boss walked in, and said "So how did it go". I thought about that question.......how did it go........."as well as it could". I knew he needed a surgery date, but I didn't have one yet. Hence the fight Mike, and I got into later that I need the date to give to my work. He feels I am not putting Jude first when I plan to inform my work, but I am. Unfortunately, I just have the world sitting on my shoulders, and I have to work around it. I don't feel like chatting much today, it's been a hard day. I could use a glass of wine, but I am sticking to my diet.
Maui? I know you are out there!
Monday, August 23, 2010
So I had mentioned my issues with my marriage, and that it's hard raising a special needs child. Friday he was again frustrated, screaming, and storming off. When he got home he said he wanted to go to Emily's training camp the next day. I just broke down in tears. When he asked me what was wrong I said, "Sometimes you are so hateful, and then you do something so nice". He immediately started crying, and said "I am just having a hard time with my son being disabled". He admitted it. So overall after that we did much better this weekend, and I made sure to show Mike a video I found. I encourage you to click on the link, and watch it so you will know what I am talking about. http://www.youtube.com/watch?v=Gc4HGQHgeFE . After Mike watched the video he was a bit teary, as we all should be, and he said "but that's different it's him dealing with his own disfigurement, this is me dealing with my sons, and I have no control". I said, "but that's where you are wrong, you do have control, and Jude is very happy. He doesn't know he has issues, he is just a happy baby because he has loving parents, so this is your own disappointment with his condition that you will have to work through". It's almost like a light went off in his head, and he grew silent. Mike never grows silent. Normally I hear him yelling about how I am Snow White always seeing the bright side, but this time he seemed to hear me. He is a good man, he is just so frustrated.
Tomorrow we go for the G button consult. I will be sure to let everyone know the actual date of the surgery. Last night Mike was kissing on Jude's tummy telling him he didn't want them to put anything in the place he kisses. I assured him he still could kiss on Jude's tummy.
Here is another project I did this weekend. This is in my kitchen above the window, I thought it was fitting. I got it from my friend Stormy Denman on facebook. Here is her website: http://stormy.uppercaseliving.net
Saturday, August 21, 2010
Friday, August 20, 2010
So I do have a funny story to share. I have been following my diet, and I am happy to report I am down 5 pounds! By my trip in February I plan to be down another 10 pounds, tan, and muscular again. This is important to me because I used to always work out prior to Jude. I think I have been so stuck in a rut that I have let myself go. I am ready to get myself back again. So next week I start back to the gym, with following the diet. So today when I got up I put some nice jeans on, nice heels, a pretty in fashion shirt that is very flowy, and did my hair and make up. The shirt is white, with a pretty pink and peach flower, and has sparkles on the front. In other words, I made an effort, and this is what I got.
My boss walks in, and I am sitting behind my desk.
Boss: What the HELL are you wearing?
Me: what? you mean my earrings?
Boss: No that mu mu thing you have on.
Me: Mu mu?? It's a shirt, and very fashionable thank you
Boss: Well it looks like you came in your pajamas
Me: it does not!
Boss: stand up
I stand up
Boss: Oh ok, well see I couldn't see the cut off the shirt, it's cute
Me: Way to call me out there boss, I just lost 5 pounds, actually made an effort today, way to make me feel pretty buddy
Boss (laughing): well I like the sparkles.
Wednesday, August 18, 2010
Last night I got Mike distracted (finally) from the situation at hand, and had him concentrating on our vacation in February. He finally started looking at the places I had researched, and he seemed genuinely excited about it. He even called his brother and researched the airline passes with him. We have some from a friend, but we still have to pay taxes, etc. If we use his brothers passes, it's a little cheaper. I am not sure which route we will go. So we finally picked a spot, and we set the dates. We really need this. I cannot express how much we need this.
Now I am making some phone calls to try to make sure we will have our nurse full time to help us after the surgery. I was told yesterday we had to wait until the surgery was performed, and then apply, but I am not accepting that. I want to make sure she is there for the recovery, and to help us manage Jude's pain (if any). I also want someone there that is experienced with watching G buttons for infection, and leaking. I know this is suppose to be a simple procedure, and I am going to keep the faith it will be. Although, we all know Jude normally doesn't do anything "simple". So I am going to ruffle my feathers up, and see what I can do about the nurse.
Tuesday, August 17, 2010
Mike also spent some time downstairs with us last night as a family. I got him to look at places we might go off on our vacation February. I told him I wasn't sure I could afford it, but I was going to sell my little heart out at Scentsy for the next few months. He seemed more interested in the idea of us going somewhere, and started investigating places to stay. He also had a large function on Thursday night where he will be able to promote his photography, and I think that will be good for him.
Thank you for the amazing outpouring of support, and advice yesterday. I so appreciate the kind words, and Jocalyns nice phone call. I will take everyone's advice into consideration when we go in for the consult. I did find out that the surgery will be performed at a surgery center vs the hospital. This led me to wonder about Jude's medicaid vs health insurance, this may lead to issues, but I don't want to tell Mike that yet. If that's the case then we will travel to Cook's where I know they can help us out.
One good piece of news. I am down 4 pounds since starting my diet. Bad news is I have a HUGE obsession now with Pei Wei Vietnamese salad rolls. Not the wraps, the rolls. They are 80 calories a piece......and they ate YUMMY!
Monday, August 16, 2010
Mike is having a very hard time, and it's honestly it's wearing on our marriage. I am doing my very best to help him cope with everything, but there is only so much I can do. He now feels like a failure, and that nothing ever goes his way because of the G button. I understand his reasoning. It's not the G button itself, we know that will ease our life some, it's just the fact it's another step. It's Mike accepting the fact his son will never be more than a baby. We can hope, but there comes a point to where you do have to accept some realization. Mike was questioning why we had Jude this morning, but I told him we can never look back, and we need to appreciate Jude for who he is. I am unsure when we will schedule the surgery, but it will be pretty soon. I would like to wait until after Jude's birthday, but I am not sure we will. So we will be trained on how to properly care for Jude's tube. We will also continue with speech therapy to try, and get Jude to eat normally in the future.
I have requested some time off work in February. Our good friend gave us some airline passes, and Mike, and I are going to get away. I think we need the break from everything, and just some time to ourselves. Making a marriage last takes work, and especially when you have other issues affecting your everyday life. Honestly, I am pretty much a go with the flow type of person. I will do what I can to try and see the positive in every situation. Mike tends to get frustrated with me because I do that, but I just hate being negative. It's no way to live your life. Now don't get me wrong there are days where I don't want to answer a text, or a call, or anything because I am busy, and just overwhelmed. Days where I want to be happy for everyone elses good news, babies, and more, but I can't. Days where people's uplifting words of encouragement don't help. It happens, it's rare but it happens! By the way, this is one of those days.
Friday, August 13, 2010
Thursday, August 12, 2010
I am going back home to work on the loft, and I hope it looks great finished. Also, on a side note I feel like a big girl today because I set up an IRA. I have mentioned that i have no retirement here at my office, and I have been very worried about that. So I saved a bit (which is hard with us), and strapped on my big girl suspenders. We will see how this pans out.
Wednesday, August 11, 2010
Time to load up:
Jude and Aunt Docia, and Hanna
Unloading at Children's
Monday, August 9, 2010
Mike and I loaded all the supplies that morning into two separate vehicles, and took it to the community center about eleven thirty. We then unloaded, and set everything up to be ready for the crowd coming to help at one. Once everything got set up we were ready for everyone to show up. To our surprise our amazing crowd of helpers put all 205 boxes together........in ONE hour! We were speechless. I was so exhausted from getting everything loaded, unloaded, and sorted that I only made about ten boxes. I felt like I fell behind, but I was also talking to everyone that arrived as well.
I then sent Mike back to the house to pick up Jude, and his nurse Charlotte, and a flat of boxes. I figured we would accept everyone's offer to continue to help. Once he got back I had the crowd color boxes that would be used for the Christmas Smile Boxes making party. We had hired Toybox the clown, and a face painter to entertain the crowd, and they were a hit! Toybox was amazing with balloon animals, and more. The face painter entertained as long as she could, and even painted a mustache/beard on my child........sigh! Jude even joined in the fun, and received a balloon hat, and a rattle specially made by Toybox the clown. The nurse, and I both noticed that Jude would perk up when other kids would come around. He would wiggle his feet like he wanted to walk, and his eyes would dart towards the kids, and he giggled. I know he wants to play so bad, and I hope someday he will. I was SO happy that his nurse came with us Sunday. I knew I could relax and worked the party, while Jude was in very capable amazing hands. Wonder if I could convince her to go on vacation with us...lol.
After the party ended, we filled two SUV'S and my car full of boxes, and headed towards Children's hospital in Dallas. It took the Child life coordinators four LARGE bins, one small bin, and a wagon to take all the boxes inside. We had new helpers this time, and it was so amazing!!!
I will post some pictures tomorrow of all the great Smile Boxes activities. Now we focus our attention on Christmas boxes, and I feel a bit overwhelmed. After awhile people have "heard enough" about your charity, and they begin to move on. That doesn't mean you need any less help. We know Emily's boxes make a profound difference to the patients, and their siblings, especially at Christmas time. Cook's explained to us that the patients receive lots of donation at Christmas, but the siblings normally have nothing. So it's very important to us to get out as many boxes as possible. Our goal is 400 boxes, plus teddy bears for all the babies, and siblings. That means we will need at a minimum $3000, but would prefer $4000, to insure we make the boxes the best we can. So today my head SWAM with ways to achieve this goal. I posted an update on facebook, but didn't receive one response. So now I am trying to figure out the best way to achieve this figure. Any ideas are welcomed. Besides having Taylor Swift or Justin Bieber show up along side Toybox the clown I am at a loss. I do have some amazing friends that are talking about helping out including our great blogging friend Steve who once again dedicated a weekend day to helping Emily's Smile Boxes.
Jude is currently trying to crawl off his Cowboy's blanket, so I better go get him.
Saturday, August 7, 2010
When I married Mike I knew he wanted a baby. He and his first wife had suffered through five miscarriages, and it had been very difficult. She had a disease that prevented a viable pregnancy, rather they were ectopic. Mike's parents are in their seventies, and he had expressed to me that they really wanted to see his child before they passed away. So he was elated when I came to him, and told him we were expecting. It seemed the pregnancy was plagued with problems from the beginning. At first they couldn't find the baby via a sonogram, and the doctor worried the pregnancy was ectopic. Mike immediately began to panic because of what he had been through before, but luckily a little baby was seen only two weeks later (what seems a very long 2 weeks later). From there things were pretty much normal. We dreamt of the baby we would have, we guessed the sex, and we watched the baby grow. My OB has sonograms in every room, so with every visit we got a sneak peek. We went through our nucuel test, and everything looked perfect. The OB even said she thought we might be having a girl. So let me point out that the multiple in office sonograms showed everything was perfect with the preganancy! Since I was 35 my OB was precautionary, and requested I see the perinatologist next door for a level 2 sonogram. So my husband and I made our appointment, and went in all excited to finally find out for sure the gender, and that everything was fine.
When I settled myself into the table I stared at the large screen on the wall where the baby would be displayed. We watched the doctor go over every inch of our baby telling us everything looked perfect. He asked us if we knew the sex, and we said "no, but the OB thinks its a girl". He then made several off color remarks about the fact this baby was very much a BOY! In the next instant the doctor turned from joking to very quiet, and my motherly instinct knew something was wrong. "What is it?" I asked. "Your baby's brain ventricles are on the upper end of the normal range". "Well what does that mean?" I asked. " It means it's normal" he said. I am sure he was trying to calm my fears, but it sounded more like a father putting an end to a conversation. Then he said that just in case he wanted to get an amnio, and send us to UT Southwestern medical center for an in utero MRI. "That doesn't sound that normal" I said, and he just looked at me. I submitted to the amnio. I had had one with Emily.........(which was a very normal pregnancy), so I was prepared for what it would be like. I then knew there would be a week long wait or more before we heard if there was a genetic disorder. It wasn't the longest week EVER! During the wait they set up the appointment for the in utero MRI. Who knew you could MRI a baby before the baby had even been born.
I soon received a phone call that the amnio showed everything was normal, this brought much relief. So then we had to tackle the MRI. I hate closed spaces, I panic in elevators so much that I would climb several stories of stairs to avoid them, so you can only imagine me stuck inside something as enclosed as a coffin is. Mike was able to stand in the room with me, and he held my hand while they scanned the baby. Once it was over they came to escort us out, and I glanced inside the room where they were viewing the images. I saw the doctor resting on her hand on the table, covering her mouth, staring at the images in front of her, and I knew it wasn't good. After about fifteen minutes the doctor came to get us, and she escorted us to her office. When she pulled out a box of kleenex I knew it wasn't good news. She initially told us that we needed to keep in mind the "fetus" was only 19 weeks, and it was difficult to image a brain so young. Then she cleared her throat and told us "with that being said I have only seen one other case like your sons, and it wasn't a good result". I think it was the first time I had heard our baby called "our son". She talked in very technical terms, but my brain seemed to grasp everything, and before I knew it there were tears running down my face. I looked down, and when I looked up she had tears running down hers. "I am sorry" she said. "There are people that come in here that shouldn't be parents, but when I get a couple that truly wants a baby it breaks my heart to deliver news like this". So what had she said? She had taken out a sheet of paper, and drawn a brain. On either side of the brain she had colored in two black spots, and then said "it appears there has been a hypoxic ischemic event, these dark spots appear to be blood". It was months later that I finally realized her fancy words meant "stroke". She then said this had caused massive damage to the brain, and her prediction was the baby would have serious issues. She then said she would send the information over to our perinatologist.
Before we went back to the perinatologists office we visited a neurosurgeon with Cook's children hospital. He was phenomenal. He said that a baby's brain is like elastic, and even though the brain cannot heal permanent damage, it can reroute itself. He also said the brain is the most misunderstood organ in the body. He said the baby could have no issues, or issues ranging from dyslexia to severe. He then went on to tell us how many babies suffer strokes in utero up to 1 out of every 4000. Some people won't even know their child had a stroke because the brain heals itself, and they may just present with ADD, or some other issue later in life. After we left his office we felt a bit better, only to fall down again when we went back to the perinatologist for the follow up from the MRI. I can only imagine how the doctor felt coming into our room. He half smiled, and said he assumed we knew what they found on the MRI, and we acknowledged we did. His next words will always stay with me. He said "this is where we decide if you want to continue the pregnancy. If you do then you move forward, and you never look back wondering what if, and if you don't the same rule applies". We sighed. We knew we would keep "Jude", but we asked anyway. "What if we decided not to continue". He said " then you would have to go to the abortion clinic in Dallas because the hospital will not recognize the need for an abortion regarding a pregnancy that may be alright". WOW, I thought. Flashes of making my way through to a clinic with people picketing outside rang through my head. Then the doctor spoke "there are some people that have a type a personality and cannot handle a child with special needs. In fact, more often than not if a child is born to those parents and they are informed something has gone wrong...they will leave them behind". I was shocked! Really? Could people do this? So Mike, and I looked at the doctor and informed him that we cannot abort a baby that might or might not have issues, he was our son, and we were continuing on. He accepted our answer, and said they would scan Jude's head every two weeks looking for growth and development. If the baby did not grown we knew there were severe issues, and he might not make it.
The rest of the pregnancy was plagued with major issues. It's almost like my body was trying to terminate. It's was almost like nature was trying to take over. I had kidney issues, a serious blood and platelet problem, and early labor starting at 31 weeks. I was in and out of the hospital, wound up with an IV in my leg at home, and constant monitoring that would communicate via a phone line to a nurse on call. During this time Jude's head circumference...........grew..........every week. The doctors were baffled, and began to call Jude "a true miracle". Once we got to 38 weeks they requested we update them on his progress because he would give hope to other babies. Then it was time to deliver. After 12 hours of labor with Mike, and my cousin at my side I gave birth to Jude. It was of course, not uneventful! The epidural only took on one side, my platelets plummeted, and Jude suffered shoulder distosia. I remember the doctor saying "Oh hell no, this baby is NOT going to have shoulder distosia after everything he has been through". She commanded that my cousin (a mid wife), and the nurse crawl on top of me and push my stomach down as hard as they could. Mike was panicking, and I was pushing as hard as I could, and then we heard a cry, and I looked immediately at Jude's head. "It's small I thought" but not to small. Jude looked squished, but so beautiful, and he let out mighty cries.
The next day the pediatrician came in to tell us Jude checked out in the nursery 100% healthy, and we felt so relieved. Then the next day we found out that there were some issues on the head sonogram, but that he still seemed to be normal. He had perfect reflexes, was eating normal, reacted normal, and was deemed 100% normal with a 9.9 on the Apgar! We were more than thrilled at this news, we had our baby boy, and we thought he had overcome the odds!!!
We spent three glorious months assuming Jude was fine. He rolled over, was holding his head up, smiled, and seemed like the perfect baby. Emily had a beautiful brother, and she had become the perfect sister. I spent a lot of time playing with Jude, we planned Emily's 10th birthday party, I started a college fund through a whole life policy for Jude thinking he was healthy, and we moved on with our lives. We moved on... until one night when Jude was 3 months old. Mike had gone to a friends house. I was home with the kids, and suddenly Jude began to open his mouth over, and over, and I noticed his eyes fluttering a bit. Being a second time mom.......I knew........this was NOT normal. Mike walked through the door, and I said "I think the baby is having a seizure", and Mike fell down in front of Jude crying, it broke my heart. We took Jude by my cousins who looked at him opening and closing his mouth. She said it was different, but maybe just a baby thing. I still didn't feel comfortable, so we took him up to Cook's, where and I wrote down on the sign in sheet "possible seizure?". Suddenly I had a nurse rushing out to see Jude, and he looked into Jude's eyes. He then took us to the back immediately, and told the doctor something about Jude "focusing on the left", and possible Grand Mal seizure. WHAT?
We waited patiently to hear the results from the MRI thinking they would probably show something. They showed a lot. It no longer showed the blood from the stroke, but it showed massive damage. The doctor that came in just ran through the motions, and said Jude would never be more than a baby, he would never walk, he would never talk, and he probably wouldn't make it past five. We expected to hear news, but not that news. We were devastated. I was angry! I left the hospital staring at women with normal children, or who were pregnant envious of their happiness. I left that hospital, and left my normal life behind.
Once we went through our steps of grieving we gathered ourselves, and pulled ourselves up . We found a new neurologist who did not put an expiration label on Jude. We sought out therapy, a nurse, and all the help we could obtain. We battled insurance companies, and the state to make sure Jude had the best he could get. We spent countless hours in and our of hospitals. He battled a round of pneumonia (which is what will normally kill a child in Jude's condition), and we learned of countless other mothers in my same circumstance. I met amazing people with amazing children that had special needs, and then I learned to never look through someone that is different again. I learned to asked questions, to educate myself, and to put down my pride and accept help when it was offered. I learned that many times I had to console others when they thought they were consoling me. It was a different way of life, but one that seemed to offer more than what I thought it would. During one of Jude's many hospital stays where we smelled the horrible smell of EEG glue, Emily stepped forward. She was lonely, and bored, and also needed to find a purpose to work through what was happening. Emily came up with the idea to help others, and we started Emily's Smile Boxes. Suddenly little Jude had inspired my amazing daughter to do something heroic, Jude had at such a small age, had a legacy.
We know that Jude's condition is never truly stable, and can change at an instant. He has such a severe form of epilepsy that it has it's own label, but labels don't matter much to us so I won't post it. He is also legally blind, and has cerebral palsy. His immune system is very vulnerable, and he receives several medications several times a day. In December of 2009 Jude suffered a horrible bout of the rotavirus, and CDIF. After Jude recovered we had a doctor tell us he was amazed Jude made it through, but he is our little fighter. We are so blessed, and so thankful for Jude. We have met amazing people through Jude's illness. I encourage you to click on the links to the right to read about Kendall, Max, and Rheagan Leigh, and their heroic mothers. Jocalyn has been invaluable to me with information, and education. SO our road has been difficult, but laced with so many blessings. I believe someones story is always worse, and we should be thankful for what we have been given. We pray for as many days as we can get with Jude. The first neurologist may have been harsh but at near the age of two Jude is still about a 3 month old, but we love his darling smiles.
I feel like Jude follows the slogan like the Army's. He has done more by the age of 2 than most of us will do in our lifetime!
Jude seems to be doing very well today. The increased Felbatol is decreasing the seizures, and the spasms. They are not gone completely, but their intensity have decreased greatly. Anything that will decrease his seizures is wonderful. We now have to test his blood in the next few weeks to make sure the Felbatol is within the right limits. Oh, and since we have started the iron supplements we have noticed that Jude's coloring is getting a bit better.
Tomorrow is Emily's Smile Box making party in Grapevine at the Grapevine Convention Center from 1-4. Yesterday NBC channel 5 ran an incredible piece on Emily and her upcoming party. I have not been able to find the video online, but here is the article http://www.nbcdfw.com/news/local-beat/Delivering-Smiles-One-Box-at-a-Time-100136099.html. I was very impressed with Emily, because she completed this interview on her own. I had to work so she was responsible for handling everything that day. Mike was there with her, but she did everything on her own. I was also very impressed with the reporter. She really spent time making sure the report was done in the best possible manner. We also found out she had to work really hard to overcome Dyslexia, and through determination made it as a reporter.
I just finished watching Marley and Me again so I am off to wash all the tears off my face. Sigh!
Thursday, August 5, 2010
Tuesday, August 3, 2010
Let's talk about the man. I feel like the man controls my everyday life. I work for the man that demands a lot of my time, but I enjoy my job so it all works out. I enjoy the fact that I can comfort those who expect to see a "man" in my position, and I am able to rectify their situation to their highest expectations without a mans help. I love the fact they say they will always call and consult with me for any future issues regarding any situation my expertise can satisfy.
Yesterday I had one little man crying in his bed, while one big man was extremely sick in the bathroom. Said boss man expected me to be at work, because our other employee was out. I understand it's not my agency, but I cannot afford to lose my job. So to make said boss man happy, said husband man would be unhappy, and little man would be left wanting more. I could not call in sick, and I had to go off to work, there was no choice yesterday. I felt guilty all the way around. I would feel guilty letting my boss man down if I called in, but I still felt guilty leaving my sick man, and my little man. So I went to work, and literally worked my tail OFF yesterday. I was exhausted. Once I got home the sick man handed me little man, and I checked into another shift. The man has me down I tell you!
So the doctor called back yesterday, and I guess one of Jude's labs had not come in on Friday when they initially called me. Therefore, they have retracted there statement that there was nothing wrong, and are now saying that Jude is indeed borderline anemic. His panel has now dropped from 9 to an 8, so it was even lower than the initial test that sent us into the frenzy. Since his liver functions are showing perfect, they are assuming he just needs a supplement. Therefore I have to stop, and pick up an over the counter medication for him. I am sure this is just an issue with needing an supplement, although it did make me wonder. I had such terrible blood problems when I was pregnant with Jude, that I still wonder if any of it attributed to his stroke. One issue I had was anemia. We have not finished the 2nd, and 3rd panel of Jude's "stroke" work up to see if there was an underlying cause. He had gotten sick, and wound up in the hospital before we finished. The first round of blood work came back perfect, so we need to finish the second rounds. I believe we will do this the next time they test his felbatol levels.
Once I got home yesterday Jude was all smiles, and giggles for me until about 10:30. Poor guy started teething again, and he was NOT happy. He also had about a thirty minute or more seizure yesterday. We just increased his Felbatol level so this could be an adjustment to the medication. We have seen the small seizures drop, and they turned into one long seizure during the day. It's strange how medication can affect your body. Jude has also rubbed his little chin raw again on his blanket. He wants to be on his tummy all the time, and will literally scream until we put him down. I am coating his chin with a medication to help. We are trying to keep him on his back, but he just wants no part of it.
Tonight Emily has the Barnum hero award at the circus, and she is so excited. She is going to get to bring her cousin since Jude will be sitting on our lap. I am unsure how Jude will do with the loud noises, but if it becomes to much I will excuse myself. Emily actually gets to participate in a part of the circus, so I know she will have a great time. We also have her Emily's Smile Boxes making party on Sunday, and we are really excited about that.
Monday, August 2, 2010
Jude learned a bit of peek a boo this weekend. He cannot hold his head up for long so while holding his his head will rest into my should covering his eyes. When he would lift it I would say "Peek a boo Jude", and he would smile. This caused him to try to lift his head several times until he just got to tired to hold it up anymore.
Saturday we spent the day at my aunt's lake house with my friend Fleck. We had a great time just relaxing, and enjoying each others company. I keep telling my aunt I am going to move in there one day, and we will all just have to co-habitat. I love being by the water, well minus the snakes. My aunt was so gracious because she took us all to dinner at Go Go Gumbo, which is amazing. There is an old house next to my aunts house that I will show you below, and I am waiting for the people who own it to sell it, so I can win the lottery, and buy it. Big dream huh? I just love the house. The highlight of the day was watching Emily, and Fleck ride off on my aunts father in laws motorized scooter. I was cracking up.
Saturday after we got home from the lake Jude went to sleep fairly well. He then decided to wake up at three because his teeth were hurting. He was up, and down until about five thirty, and I decided to give him a bottle. Jude then went into a terrible seizure that lasted on, and off about twenty minutes (remember Jude has cluster seizures). After that he spent another thirty minutes cracking up. I would run my fingers through his hair, and he would laugh, and laugh.
I have also noticed that Jude enjoys being at home. When we take him out of his environment he is starting to get a little disturbed. I told Mike, he is turning into him. All Mike wants to do is be left alone in his "man cave" upstairs.