Gymboree time!

When we first attended Gymboree two weeks ago I thought it may be a fluke Jude was so responsive, but it seems it's not a fluke. Jude really loves Gymboree!! He has a certain spark about him whenever the teacher is singing, and we interact with him. He "talks", and tries to smile. He has lost some of his smile with the medication he is on, but you can tell in his eyes he is having fun. During "tummy time" Jude even tracked some of the rolling balls with his eyes, and then even did a good job of sitting up while I held his hands. I was very proud of him today! I guess it's an escape for him, and for us from his horrible seizures. Emily was able to contribute since she is still on school break, and she really loved working with Jude. I think she thought it was pretty "babyish" at first, but then realize it's suppose to be. I even ending up buying Jude a Gymboree puppet and CD because he likes it so much. I figured Mike could work with him at home with these items. We did hear from ECI and they will be at our house on Tuesday to evaluate Jude and start him in therapy. We still have not heard from anyone regarding the medically dep children program, but I hope we will soon.

Mike just called and he and Em were at Subway eating with their Subway gift card they got. Em was super excited about this gift...lol! Anyway, I told him I needed to fix a little something to take to my cousins tonight to share with everyone to eat. He said he really didn't feel like going anywhere, and I said "neither do I, but we need to get out!". I explained that we need to keep some normalcy in our lives, and that we need to pick ourselves up and dust ourselves off. He said with a tiny giggle "Well fine but I am not shaving nor changing.......and sitting in the corner!". lol! He is a stinker.

Look at me sitting like they said I never would........with help, but still!


"Gymbo" the clown singing to Jude


Emily playing with Gymbo


Tummy Time!

What should I name this blog....

I am at such a loss that I probably will update mostly tomorrow....but I wanted to put a small update tonight. Jude took his topamax tonight like a big boy!!! After the medication I noticed that he was actually tracking me with his eyes again, and looking directly at me while I held him. It even seemed he tried to have a seizure, but he couldn't and I was so thrilled. Right whenever I was carrying him to tell Mike all about my new discoveries Jude's head reared back, and he went into a major grand mal seizure. The tears flowed, and I was PISSED! There is really no other tactful word for it. I knew in my heart that any new medication takes time, but I was still mad. Maybe a build up of emotions?? I wanted to throw objects, break stuff, not go to work, and have a total melt down. I wouldn't do that though. So now you see....I am not as strong as you think I am. I was furious that people's lives move on.... that they can have parties, go for drinks, and have normal children. That people can enjoy their babies who are at 4-5 months learning to eat different foods, smiling, laughing, and enjoying their families. Then in the same instance I was happy they have those babies because I wouldn't want anyone else to go through this.

Then, I read an email from a dear friend that I don't even know personally regarding her grandbaby that had a stroke. He was born around the same time that Jude was, but her grandson is just now about to leave the hospital (hopefully). She told me he will leave with a trach, and that she is learning how to change it. She is taking CPR like we did, but she also is having to take ventilator courses. I then remembered myself, and I remembered that even in our situation we are still so .......... blessed. I realized she is blessed in her own way too with their tiny miracle who will be going home. I felt ashamed of myself for getting so upset.....truly ashamed!

This is hard people...........probably harder than I could ever put into words, and probably harder than I can communicate to my friends. The point of this blog though is that other people have harder situations. Someone elses story is ALWAYS worse than yours ( I always say that). I realize we all have people we should be thankful for....and I forgot for a moment...........I remember now. Good night!

medication

So the doctor called back, and they are now putting Jude on topamax in addition to the phenobarb. It just sounds like so much medication to a tiny baby! We can also give the klonopin as needed. So now my head is swimming with possible reactions, and more. I have to pick the medication up after work, and I guess we will try it out.

Mike is really low again, and I am not sure what to do. This has been the hardest part of this ordeal for me is watching him suffer. With Jude I have a motherly instinct that takes over........that's the only way I can describe it. Allowing myself time to grieve for the son I feel I lost, but appreciating the son I now have. Make sense? So to me I know Jude will never be normal, but he is mine and he needs to watched after no matter what he needs my strength. Of course my heart breaks for him, but I have him right now and right now he needs my 100%. Yet with Mike I cannot fix his heart...... I guess I feel a little lost right now. It's been a pretty down day.

I am going to see if I cannot find Em a friends house to spend the night at to give her a break from the medical atmosphere. It's the end of her Christmas break. I think she is fine though she called me earlier and was "scrap booking".

Another update

Jude had a horrible seizure tonight. It was so bad that Mike and I both just sat on the couch and cried. I looked at Mike and asked through the tears "Do you ever think that we made the wrong decision?". He said "everyday". It's not that we could EVER imagine Jude not in our lives it's the fact that Jude is in PAIN! He has a tiny little whimpers that he now lets out through these seizures, and he looks directly into your eyes like he is pleading for you to make them stop. It honestly makes me want to vomit! I feel so sorry for him, and I don't understand why this is happening. I will probably NEVER understand why life allows poor little innocent babies to suffer. Although I have said before that if the doctor's said this could be "dyslexia" or "major mental retardation" I am sure we would still choose the same option ..... to give him a chance. We love Jude so much and want him with us always, but I see his life shortening with each seizure.

The nurse called back from the doctor today, and said that the doctor was out of the office. She approached our concerns, and verified they were valid. She assured me though that they do have Jude's best interest at heart. She said that the extended time until the first office visit gives them more time to evaluate his situation. She said we should continue to call each time his seizures strengthen, lengthen, or change in anyway. This helps their office identify the true issues, and what medicine will help him most. I told her we feel a little "lost", and she asked me "why". I explained that we feel we have a baby that is so sick, and needs so much help that we don't know if what we are doing is correct. People can say "don't be negative", but reality says he is ill. We have to acknowledge that and help him the best we can. She acknowledged we were very correct in thinking this, and that we are doing a great job. She said their office is here to help us, and will continue to do so in the best possible manner. So the doctor will call tomorrow to see if they need to increase or change the medication.

So this is not easy on Mike and I either, and although that is one part I won't go into detail on I will just say it's not easy. I pray that we make it through this and become closer through our journey. I have faith in our love, and I believe we will make it through. There are times I just want to run off on a vacation together like we used to, but then I remember we cannot. We don't really need one though because we have Emily's smiley face, and Jude's sweet demeanor. While mentioning the vacation I thought about reading my magazine tonight (while in the tub of course), and I thought about all these celebrities that sprinkled the pages. I thought of their sometimes easy lives, their live in cooks, and more. I get so annoyed with the modern day ....."I didn't do anything" rich kids. Maybe I will write a blog on what I would do if I was a millionaire...lol! It might be interesting. (No being a millionaire won't help Jude this is just me being funny because people in these magazines CRACK me up!! smile).

On another note and then I will close. The one thing that did make me smile tonight was this video: http://video.yahoo.com/network/100000086?v=3510825
I could just hear Mike's "cat" voice when I watched this. In fact when I showed him this video tonight and he immediatley broke into his cat "You no see me" while laughing hysterically. I have to record Mike someday so you can share in this experience! It's the little things......

Busy bee

My goodness it is busy at work today! I haven't had a break to stop and post an update. First, off I noticed a big difference in Mike this weekend when I was home with him. He was much happier, and much more relaxed. Today however he is frustrated, and sounds very down again. I believe it's because he takes in everything with Jude, and there is no one else there to deflect some of the pain. Jude's seizures are still changing, and seem to be increasing in strength. They are still spaced a part though and seem to follow a specific pattern as far as times. So therefore, we put another call into the doctor today. In addition to calling them about the seizures I also let them know that we feel a bit cast aside. We feel a bit like the doctor thinks Jude just has to many issues so they give us some medication to shut us up. That way the doctor can move on to other children he thinks he can actually save. I know that isn't the case, but that's just the way we feel. So I am still waiting on the doctor to call back, and I will update once we can. This weekend we really noticed that Jude is truly not tracking any objects. In fact you can put your finger up to his eye, and he won't blink until you touch his lashes. I thought maybe he had a sight problem, but when you put him under light he squints. Anyway, Em is at home today too helping Mike a bit, but I think she is also bored. I am hoping she will get out to visit her little friends down the road. As I said before I am super busy so if this blog makes NO SENSE you know why.. :).

Here are some pics from Christmas.

I put Jude on his Teddy, but he fell asleep before I snapped the pic:






Jude sad after the game:

Well

Well my holiday is nearing the end since we only have one full day left before the Monday morning workday rears it's head. I have truly enjoyed the time off with my family, and I am seriously considering staying in my Pj's all day tomorrow. I would personally like a quiet day at home with movies, and lots of snuggles from everyone. I went by my dads and Kays tonight with the kids while Mike stayed at home, and had some boy time. While there Jude had a horrible seizure, and I felt so bad for him... and terrible that my family had to watch him suffer. It's amazing the extent of emotions you feel in a situation like this. On my way into my dads my cousin Sarah called to tell me she was home from Missouri, and that her little boy was anxious to get his "messy" gift out I got him for Christmas. That made me smile!!!

Jude did have a few smiles for me today, and honestly it felt like he was a newborn again. We sat on the couch and he snuggled very close to me just staring at my face. He could do that for hours when he was a brand new baby, and it seems he still likes that position. He is so funny because he makes these faces from furrowed brow... to a slight little smile while staring at me.... it cracks me up. On another note....prior to leaving for my dads tonight I did my first yell of "Emily you look PRETTY enough now get down here we have to go!!!". I am not joking.......at ten she was upstairs primping, but I do have to say she looked VERY cute today when she finally made it downstairs. She had her little black shirt with pink writing, her black converse, blue jeans, a scarf that matched, a headband that matched, and some light lip gloss, and glitter...lol! She looked adorable........and trust me she thought she was hot stuff!! Although, while at my dads she really wanted to go with my sister to her job (she is a youth pastor) the next morning. It wasn't planned though which means she had zero clothes, she was exhausted, and early morning is hard on us because Jude starts seizing anywhere from 3am on. So I asked her to just go to church with us and that she could spend the night with Chelle in a few weeks, and go to church with her the next morning. She proved my point on being tired when I got the loud cries and whimpers.... so even though exploring young lady hood she is still a little girl...and that's OKAY!!! I just knew she would be so hard to get up (hence why we go to late service) and I would hate to cause issues with Chelle's job. I try hard to make Emmy feel like our situation is minimally interfering with her life, but sometimes I have to remind myself that it's ok to give her limitations too. Even though it is church related it was still something she could work around. So hopefully, in two weeks or so she can stay the night with Chelle and go to church with her. She will LOVE it!!!!!! She likes being involved. Plus she likes the church we have started going to......so she will be fine.

We looked at consolidating our phones, and some other avenues to decrease our living expenses this weekend. I think we made some great strides, and I will work on finalizing everything on Monday, but I truly believe this is going to work. This will WORK! It sounds liberating to say it.....and I have faith everything will WORK out.

I have two major New Years resolutions everyone needs to help me on...lol! First, work on getting a grant to finish my degree. Not only finish, but I plan on being on the Dean's list. Second, get my a$$ back in the gym to get the last baby weight off. I like to feel good about myself, and if you can feel good about yourself you can accomplish more to help others. Lifting Jude while in therapy or during a seizure will be much easier if I am back in the condition I was prior to getting pregnant. Also Em has a new guitar from her daddy, and she wants to learn how to play ... so that will be her resolution. I think it's a good resolution because she already knows a lot about playing because her dad plays. She also wants to write her own story, and has started it already. It's about a world larger than ours ran by something part duck and ladybug ;). Jude's resolution will be to say "ma ma", and to learn to sit up on his own! We will help him every step of the way, but our first issue with him is to get his seizures under control.

On another note Ella (another family member that is 2) just adores Mike, and again on Christmas she was up on his lap on the couch. On Thanksgiving she was telling him all about her "killer" bunny rabbits (stuffed of course). She won't really talk to many people, but plays with Mike as much as she can. She remind me a lot of Em at that age with her long curly hair, her big cheeks, and how she picks those she wants to talk to. I told him how fun little girls are, and as much as I know he would love one............I don't think either one of us could EVER stomach another pregnancy. It's kinda sad.

I will close this with saying I found out an old estranged friend of mine had her house burn down on Christmas night. It made me so sad, and to step back and realize we all have certain crises that affect our families. Some are more svere than others, and some are devastating. I know she will survive, but still we so easily lose sight of situations we should be grateful for. Our house is our safe haven right now......... i cannot imagine it not being here....we would be lost. Anyway, I will post more on Monday. Have a good night.

Christmas

I have so many pictures to post, and so much to say that I am not sure where to start. Although, seeing how my port for the photo upload is broken I guess I will NOT be starting with posting the pics..ha. I will have to post those on Monday from work, but trust me I have the CUTEST photo ever of Jude asleep on his big teddy bear. I laid him on his Christmas bear to get a pic....it's one of those medium soft and fluffy 08 bears, and within a minute he was fast asleep "hugging" it. We went into this Christmas with a lot of tears, regret, and wanting solitary confinement. More Mike than myself, but I still personally did not feel real up to the holidays at all. As you know we cancelled our trip to Missouri so therefore we just sat at home on Christmas Eve...which was surprisingly...nice. I didn't pack or hurry about at all....we just relaxed. I did TRULY miss my family in Missouri SOOOOOOOOO much, but they are coming here in a few weeks so I will get to see them. On Christmas we did run a bit, but in the long run it all turned out wonderful. Also, people are amazing and our gifts were unexpected and overwhelming. We went to a nice dinner tonight with a gift card my sister gave us. For a few moments we really felt at ease, normal, and relaxed. Mike would reach over and hold my hand smiling, and I think that was so needed. Mike laughed, smiled, and he talked about going back to the gym so our Christmas turned from him wanting to be solitary to.......family. He talked of visiting friends, and more I was so very proud of him...and he ATE well!
Then when we left and got home tonight little Mr Jude had a horrible seizure! It was so bad that it scared me a bit. He is now incorporating that arm jerk I told you about with his old movements, and his eyes are bulging strangely. Mike's brother had epilepsy as a child so Mike is more used to the eye movements when I am not. I was ready to call 911, but Mike knew all would be ok. The klonnopin still works when we have to administer it so his seizures will respond to the sedative. It is so horrible to watch though, and I wish we could just ......... not have to deal with it.. but we do. SO I watched Mike look a little sad again, but as he said to me before it's not my weight to bear to make him ok. He will be ok though I know he will, and Jude is loved and he will be well.......Jude......perfect to us.
We were spending another gift card today and multiple women came by to offer their oohs and aahs of Jude...."how cute", "how adorable", "he is so big", etc. One even went so far to touch his hand and mention how he truly knew who his mother is because he was staring at me so intently. Little did she know he was looking slightly to the right over my head and was not focusing (I could tell), but I accepted the sweet compliment. As I walked off from her I wondered if Jude was in a wheel chair years from now unable to control his movements if she will still refer to him as "cute", or would she see him different. In addition to those women I also had a young lady about Emily's age that was deaf, and special needs come up to me signing and speaking in broken words how cute Jude was. I told her how grateful I was to her, and then I realized something. I have a new appreciation, and new found patience for special children. She was beautiful to me, and I was so proud of her for learning to sign because you could tell that wasn't easy for her.
By the way, Emily had Christmas throw up in her bedroom between my families, and her dads families ;). She is a lucky little girl, and we had a long talk about how grateful she should be right now. I said with everything going on we really could not afford much, yet she received so many nice and wonderful things from those that love her so much. I reminded her of all the children in the world that truly need things.......but Em knows.....Em has always known. She has a very warm heart that spreads to everyone around her. I know mothers are biased, but Em truly is a very sensitive child...I see great things in her. She will make a difference!! I thought about her....and that all Em has truly wanted for years for Christmas is a puppy. With everything we have gone through right now though that is just not an option....even though my aunt offered up a yorkie poo. We had to find our little Angel kitty a new home, and Scooter (our big tom cat) is mostly outside. Cats can cause issues dogs cannot (cat scratch fever, toxoplasmosis, etc). I also inherited three Jack Russel terrorists that are outside (see prior posts). I do wish Em could have my experience though of having a loyal friend in a dog as a child. I had a wonderful dog that never left my side, protected me to the end, and just loved me no matter what. A dog never cares what is going on in your life because they will love you regardless. It's just too much right to handle right now.
I have mountain o laundry in my kitchen......I am truly amazed at all of it and plan on working on it Sat and Sun! I plan on going to visit at my dads too.........and my cousin gets home tomorrow (yipee). Then my aunt will be here in a few weeks.....my aunt.....she will be so much help. She will be able to stay with Jude for awhile during the day (I think) while Mike can run to do a few errands. She is a registered RN so I know she will be an amazing help to us. So I am closing this blog with thanks for all our wonderful family, and friends. I will post more on Monday.

Well it seems I got my first negative comment....

Hmmm seems I received my first negative "make an assumption" comment from someone who doesn't even know me, but decided to read my blog. Hence... they formed their on conclusions and posted a comment. So even though it's not necessary let me set some things straight.

1. I was only 34 when I got pregnant with Jude
2. I DON'T SMOKE
3. I never ever do drugs
4. I am healthy
5. I worked out.
6. We have a good life and lifestyle

I am a genuinely good person with a good job I have had for over 15 years. I love my family and only wanted a healthy baby. At no fault of my own my little boy had a stroke in utero!!! As the neurologist put it "We got one of those awful life roulette moments and we got the bullet" They don't know what caused it....and normally never do in situation like this. They do know it happens to many mothers whether they are "ADVANCED AGE" (thanks 4 pointing that out) or not! I know a woman that was only 24 and, the same thing happened to her daughter.

Gees people I mean really .............. are there people like this that truly exist?? Sometimes it amazes me because I am just naive I guess. I have a tendency to think EVERYONE is good at heart.
I cry each night for my child... I weep with him in my arms. I think of how unfair it is that some women don't even want their child they do drugs, the live on the street etc. .........well I want my child and I am normal! So you want to hear me get mad?? I will at this even though it shouldn't make me upset. You ungrateful piece of ***** **** how dare you even insinuate that I didn't have my child's best interest in mind with my "maternal age". I know I open myself up by posting my complete feelings on here, but the emails I have received from women going through this that appreciate my blog outrank your cold dumb *** any day. So see I can cuss....lol Excuse my french ;). God Bless guys! On another note after reading this aforementioned comment my funny husband had Jude up doing a "dance" and singing about the poster ...........and trust me it was HILARIOUS!

Anyway, again have a fabulous Christmas and don't think this got me down. I know we are better than this. I have some great pics of the kids I will post on Monday. I will also post more on Jude's status. Until then we are showing him how we track Santa on Norad. Also, I had a wonderful email from a lady tonight that was on a chat support forum with me. In excerpt she said:

"Hi Jenn! Don't be sorry! We cry from time to time and never in a million years did we think ___ would still be in the hospital! ___ has seizures too but his have been controlled with phenobarb at this time. But still the poor little guy has so many things messed up that I just have to admire the fight he has put up so far! I keep thinking of how my daughter had all of these plans for him to be a tough guy, play football and stuff......and now we are just happy for a fleeting smile, that he might see out of one eye, or that maybe he can get off of the ventilator some day.........I just love him so much it hurts! Jude is such a cute little guy and another fighter too! These sweet babies have a purpose....they bring love. compassion and caring to everyone they touch. Merry Christmas and have faith!"

I replied:

"I know EXACTLY how you feel. It's amazing how a small smile can somehow compensate for a touchdown in the last minutes of a game. I told Mike today when he was so down about Jude. "Babe, just think about all the moms that will spend their Christmases in the hospital..........we have a lot to be thankful for". I won't post your name, but I would love to post your comment on my board. It sums up how we all feel! "

I read her email outloud and Mike teared up and pointed. He said in a broken voice "You tell that nice great lady that is EXACTLY how I feel....she understands".

Merry Christmas

I wish everyone a very Merry Christmas!!!

Enjoy your family, and hold your children close.

God Bless.

Ps ~ I have more to write, but I will wait until after the holiday. We need smiles, cheer, Jesus, Santa, and lots of holiday spirit right now.

A breakdown of sorts.....

Today my poor husband melted, and I am not sure how to put him together again. Sometimes I guess it's not in my hands to do that though. I had made many plans for Christmas including bustling Emily's between her blended families. We also had the trip to Missouri, visiting the parents, and all that normal hustle of the season. To me it's just another year with the normal holiday visits, and issues. It's also my fault because I can never say no, or know my limit...that's one of my weaknesses. I still love Christmas, but it always consists of a lot of time on the driving here and there. I don't think Mike could handle that this year, and that's understandable. This does not "feel" like Christmas to either one of us this year yet I know within my heart we have to make it Christmas. Not only for us but for Em, AND for Jude!! Mike is here everyday with Jude though seeing his seizures, and administering his medications. Any HONEST stay at home parent can tell you that staying even with a normal child without special needs all day everyday can sometimes get very tiring, and trying. Sure kids are a blessing from God, but if you walk into a 1st grade teachers classroom and ask her if she has trying days ......... she will look at you and say "seriously?". So all I can tell Mike is a quote from a song on this page "take it easy on yourself". He and my kids are always my top priority, but sometimes in the hustle of everyday life it doesn't seem that way to them. If it were up to me it would be myself here everyday tending to Jude's every need, but I hold the licenses and the health insurance. So I decided to cancel our trip to Missouri, and reorganized our holiday schedule to try to give all of us a little more "relax" room........which is needed.
Mike told me the other night that if anything ever happens to him he wants me to move on. He told me some more information, and I just touched him gently assuring him he isn't going anywhere. We all question our own mortality when faced with someone elses lingering possible untimely health issues. I remember reading a quote in the paper the day after Princess Diana died "We all question our own mortality the day a princess dies". True!! Anyway I told Mike "I wouldn't make it through this without you." He said "I know you will be fine because it isn't wired inside of you not to deal with things". That may seem true, but it isn't. I have just had a whole lot more thrown at me in life, but I break down I promise. I cry on the way home at night from work when it's dark outside, and no one can see my tears. I put on music that is meaningful to me.......and I cry.......I cry hard! I cry for what we have lost in Jude, I cry for being thankful for Jude, and I cry for Mike's hurt and Em's. I cry in the bath tub when I am "soaking" at night. I sometimes drink to much wine. I sometimes curse, and want to break things........but in the end I realize calmness is better. Then through my tears, anger, and frustration I remind myself how I truly feel blessed. I know that sounds strange......but I do. I have Jude.........many mothers lower their baby's tiny coffin into the ground before even being able to experience their child's personality. I have Jude, and Jude has us. When we are at our lowest points in our lives so many people have stepped forward for us...........US....our tiny family. My friend Sarah set up that fundraising dinner that she hasn't even officially gotten the word out on yet. Although she is calling me tonight telling me of donations for the silent auction from people I don't even know!!!!! Then Kim B and all the work she is doing......she is so sweet! I told them "I feel like Jimmy Stewart at the end of It's a Wonderful life when everyone comes to his aid and he realizes what life is about.........and that it's not so bad (while holding his little daughter)". It's not so bad.............I have a beautiful baby son that has special needs. It's hard to say "I have a child that will most likely be mentally challenged". I have a child that will be loved his entire life! Now that's the 100% for sure statement! Yep that statement will always be true no matter what Mri's may or may not say. We know looking back that Dr T was just trying to save us heartache, but given the diagnosis that your baby may just have dyslexia or may be profoundly retarded.......we would do it all over again.

So Mike ~ Babe.......... it may not be Zu Zu's petals but it's Ju Ju's petals and even though they are wilted a bit they are still there..........I love you very much! I always will.

Sleep Walking

Jude did not sleep well again last night, and therefore Mike and I didn't either. Jude actually woke up with two different seizures, which was so disappointing because he barely had any yesterday during the day. So Mike and I are both fighting to stay awake today, but I think Mike is a little more tired than I am. He is coming up to my office at eleven so I will get to see both him and the baby today.
I had noticed yesterday when I got home that Jude looked a little pale. When I went to change his diaper his hands and feet were noticeably white....and very cold. I began to panic a little thinking maybe he had pneumonia and that his oxygen level was depleted. Although, I searched his lips and didn't see any signs of blue. So I relaxed some and put him in a very warm pair of pajamas, and then wrapped him up in a blanket to hold him. Soon he began to pink up, and he fell fast asleep. I know babies with his issues can have temperature control problems because their brain cannot regulate their body. Also, that medication can cause blood flow problems. Although, it could just be Jude is cold natured...my sister has cold hands. In other words it sucks because you never know what constitutes an emergency, so you really just have to work from gut instinct. Another thing I noticed last night is Jude has a new twitch where his arms go to the right and so do his eyes. I told Mike I think it's another form of a seizure, but he believes it's just muscle spasms. He said the seizures can break down muscle control within the body. I didn't know that part, and I am learning more each day. Although, I think the point stands that I am seeing more issues with Jude, and I only hope he can overcome them. I forgot to mention that I had Jude upstairs at one point talking to him, and he was smiling again. He then started "talking" and it was very cute. Mike said "You can always get him to talk so much".
Anyway, I dreamt again last night of being on a warm beach (in a bikini body) relaxing by the ocean....then I woke up (darnit)! It could be because we had the space heater in our room last night so it was very nice and toasty. It could be because I wanted to escape, or it could be because I saw a corona commercial....who knows. I also had a dream that Emily's dad was ill.....which was scary.
Today is our company Christmas party which is always nice. I work in a very small office so we are all more like family. Every year we go to Saltgrass, and have lunch for about two hours while we chit chat. We give our boss his gift, and he gives us our Christmas bonus.....which will be well used this year!
I will write more later.

It's still Monday....

It's still Monday, and I am STILL at work..ha. I thought it would be slow today, but it seems everyone is at home needing to tend to their insurance needs. Therefore, I have been a very busy bee. In between calls Mike has checked in letting me know how Jude is doing at home. He said he hasn't had a seizure since the one he had early this morning, so that is a relief! The neurologist did call today, and they have decided to increase his meds at night from 4ml to 5ml. We are hoping this will decrease the remaining seizures. That's the one issue with this brain issue the seizures!!! They are so hard to control and there is no cure all for them.

So I had a nice lady email me today telling me the following:
"Reading your blog really helps because Jude's prognosis is similar to the one we've already been given for baby Hope." {she is pregnant} That is what I wanted this blog to do......help someone else. Even though we may not always hear what we want to for our children we can never lose hope. So I love her daughters name, and I think she is full of courage. Her email went on further, and I wrote her back telling her I would like to eventually post a video of Jude's seizures. I know that will be hard, but I also know they could TRULY help someone to diagnose their child, and get them early intervention. If it wasn't from my research on Jude and possible conditions I never would have known he was indeed having issues. I had watched some video's, and we then video taped him and took him to Cooks WITH the video. Baby seizures are not like adult seizures, but just as harmful.

I just talked with Em and she is going to see Christmas lights tonight with her dad. She was also telling me all about some crafts she made today, and her aunts house. I am anxious to see her little face.

Anyway, on another note my friend Sarah at work has been up to something for days. Well it turns out she was setting up a benefit for Jude in March.......SO SWEET!!!!! As stated before we are in a lot better position than others, but the medical bills do stack up. She organized a whole event with music, and everything....so nice. My friends have been great during this.

I am leaving for Missouri on Christmas to see my family, and most likely will not be able to blog. So let me go ahead and say that I would like everyone to have a very blessed Christmas. Hug your babies tight, and be thankful.

Jude played and interacted with me!

So last night I was sitting with Jude on the couch and he kept lifting his hand up to my face. Sometimes we are unsure what is a spasm, and what is normal baby movement. Hence the reason most people don't catch infantile spasms until later on in a child's life. Anyway, I kept acting like I was going to kiss his hand all over, or "eat it up" when he placed it near my mouth. He started really smiling, and the hand kept coming back so I kept playing. I told Mike I thought Jude was doing this motion on purpose, and Mike looked at me with doubt. Suddenly Jude squealed with laughter, and I labeled it the pterodactyl squeal. Mike started laughing, and seemed so proud that Jude was responding to me.
Last night was rough though because Jude kept waking up, but wouldn't fully wake. He did that baby shifting that you hear where they grunt, and move. I tried putting him in the bed, putting him in the bassinet, laying him on Mike, etc but nothing seemed to work permanently. Luckily though he would sleep about an hour and then shift again. I have noticed that his hands get very very cold at night so I am having Mike ask the doctor about circulation issues from the medication. Mike also called the doctor today about the fact he is still having up to four seizures a day. The nurse said that it could be because he is still a little sick, but I honestly feel like it's because the medicine isn't working fully. He isn't that sick just a stuffy nose which I use the bulb syringe on. Poor Jude has this "hurt feelings" cry now when you suck out his nose. It's one of those cries that makes you feel bad, but you cannot help but smile because they are really trying to sound miserable......with no tears. We still have our ups and downs regarding this situation, but we are adapting. Mike told me this weekend that he mourns the loss of the little football player son, etc but love Jude so much anyway. He then said how he realized there is a little girl in the other room that still needs him to help her with softball. It's a realization of how life moves on, and how love is unconditional.

Anyway, we are really missing Emily, but I know she is having fun with her dad.

Have a good day all.

Sunday

Well as I posted before we are looking at finding new homes for our cats to insure Jude's safety from scratches, etc. A sickness to Jude can be very different from a sickness in us. Anyway, we found a home for Angel, but have decided to let our outdoor cat Scooter stay. He eats outside, and rarely uses a litter box in here because he has an open field for a litter box :). He only comes in for an hour or two each day, and he is such a good cat. Well here is an example of how good he is. When I let him in today Scooter immediately walked straight over to Jude, and insisted on sitting next to the baby, and of course I was a bit paranoid watching him and moving him away. Suddenly Jude started a seizure.........it's like the cat KNEW! He stayed there until right when Jude stopped his seizure, and then without prompting Scooter got up and hopped on the couch to go to sleep. I felt like the farmer on the movie "Babe", and just patted Scooter on the head saying "That will do cat that will do". Here is a pic:


On another note I posted some songs on this site. I am as stated a huge fan of music, and lyrics truly capture my attention. These songs remind me of Mike, Jude, Em, our situation, and life in general. Of course the one that makes me bawl every time? This one of course........

"Baby mine, don't you cry
Baby mine, dry your eyes
Rest your head close to my heart
Never to part, baby of mine
Little one when you play
Don't you mind what you say
Let those eyes sparkle and shine
Never a tear, baby of mine
If they knew sweet little you
They'd end up loving you too
All those same people who scold you
What they'd give just for
The right to hold you
From your head to your toes
You're not much, goodness knows
But you're so precious to me
Cute as can be, baby of mine "

It's the weekend

Last night we had an old friend of mine over for dinner, and we sat around talking, having wine, and just having a nice time. It was a break from the norm even though Jude started a small seizure while he was here. Mike rubbed Jude's head and was able to bring him out of the seizure fairly quickly. When our guest left we went to bed because I was literally exhausted. When we laid Jude down Mike was very afraid that Jude was going to seize. So we were listening very carefully for him in his bassinet, and then my eyes got heavier and heavier. I knew I needed to stay awake for Jude, but soon I was fast asleep. Mike said about an hour later Jude started to seize, but I was in such a deep sleep I didn't hear him I FEEL SO GUILTY!!! His little seizure can be so subtle and quiet that sometimes it's hard to hear him. So mark me down for the crappy mom award today. Anyway, I thought I heard him have one this morning, but he was simply sucking on his hand from hunger. So I got him up and put him in bed with us where he fell back to sleep for a little while. We like to make sure he is really hungry when he eats so he will take his entire bottle with the rice, and then his meds. So he woke up again about an hour later and sucked the entire bottle down, and then took his meds like a good boy. So then I had to leave to go to the eye doctor this morning, because my contacts have now grown into my eye. Not really, but they are so old they feel like it!!! It turns out my eyesight has changed.......hence the reason things have been blurry at night. When I got back home Mike said Jude had had another seizure, and he had administered the klonnopin so Jude was falling fast asleep. I was able to get an ounce of formula down him prior to his nap...we are a bit concerned about his eating so that made me happy. The sedative just knocks him out and I know the sleep is good for him, but at the same time I hate seeing him so drugged. I wish I could take all his seizures away, and absorb them into me. So I have been sitting here watching him sleep while playing on my computer. Suddenly the door bell rings and when I go to answer it there is a package at my feet. I scanned my mind quickly wondering if I had bought something off ebay that I had not received....but I knew I hadn't. So I opened it up and there is a SWEET note from Mara. I barely know her, but seeing how we both have children with special needs we communicate back and forth. We share a bond that we would prefer not to have to have, but it's nice to have... make sense? Anyway, I opened it up and there is a beautiful picture frame to put Jude's baptism picture in. Again, we are more comfortable with everything that has transpired, and are beginning to adopt a live for the day and live to the fullest attitude. That is what we want to do, and what we will do.
Em leaves for her daddy's house tonight, and won't be back until Christmas Eve. I am sure going to miss her. I know she will have fun though.

Friday

Good morning. Well I did end up leaving work a bit early yesterday since I worked through lunch. It was nice to get home before it was dark, and to see the kids for a bit. We then ended up going to drop of Christmas gifts at my cousins house because they are leaving for Missouri today. We aren't leaving for Missouri until Christmas night so I wanted to make sure her kids had their gifts. She had called me when I was leaving work to confirm if I was stopping by, and to invite us in for a drink. I told her that I would bring in Jude, but that "he might have a seizure and is that ok?". She said "Um no you cannot bring your seizure baby into my house"... that sounds terrible, but it was funny! My cousin has that rare sense of humor that will sound inappropriate but be very very funny. Anyway, she then said "Of course you can bring Jude in...we love him and accept him just the way he is". awwww! Jude woke up for a bit at her house, and luckily did not have a seizure. He looked around at everyone for awhile, and I tried to coax a smile out of him. When we left it was time for Em to head to bed, and time for Jude to eat so we rushed home. After we made Jude's bottle Mike popped in the movie I fell asleep during the night before, and we watched it while I fed him. Jude only took about two ounces, and I noticed he was getting a little stiff. It's like I could tell a seizure was about to come on. So I told Mike I was heading downstairs to lay down with him. I thought if I got him in a calm quiet atmosphere it may help. Well he did close his eyes, but once he started to fall asleep the seizure hit. His eyes popped open, and I saw his head drop to his chest in the routine manner it always does. So I ran to the foot of the stairs and called Mike down. We could not give him any more of the sedative so we simply had to soothe him through this one. Afterwards Jude was very tired, and he and I fell fast asleep together. I guess Mike moved him to the bassinet whenever he came to sleep, because the next thing I remember is hearing noise coming from his tiny bed. I looked at the clock and it was 5am, and I was afraid he was waking up seizing again. Luckily ..... he was just hungry! He laid there with us for a bit longer in and out of sleep, and finally about 6 he wanted breakfast NOW. I could hear him sucking on his hand so Mike went and fixed him a bottle. He was up for awhile after that smiling, and cooing. Those are the moments we truly feel blessed with Jude.
For the first time last night Mike and I both looked into Judes face and saw the small child in him vs the baby face. We also saw the special needs look, and probably what lies ahead which scares us a bit. Although, in a way it isn't so scary anymore. Jude has one eye that is a bit lazy, and his head is still rather floppy at times. We talked about that some, and Mike teared up again. Plus for the first time Mike allowed himself a "me" moment, and I think that's healthy. You cannot be positive all the time. Anyway, he said "I feel like I am in jail and every morning I wake up to the same sentence, and my life will never be the same again". I assured him there are times I feel like that too. There are times I want to run away to somewhere warm with the family, and pretend all is ok. Then Jude would coo, and Mike would forget his worries and remember how adorable he is. So Mike would scoop Jude up and tell him "You are beautiful boy!" He is such a good dad. There is a part of me that feels a bit distant from baby Jude since I am now back at work. I hate that, and I need to get that under control. I almost feel like Mike is the person I run to instead of Mike running to me about Jude. I know that is just from this being a transition, but it's still throwing me a little off. I just miss him during the day, and Em!
Anyway, Em came downstairs about 7am, and sat on the bed while I talked with Jude. He was smiley, and Em was being funny. It was a nice way to start the morning.....and it was seizure free!

** Today at work I received a phone call from Social Security about Jude. It seems since I get child support on Emily.. Jude now won't qualify. Go figure that! Our government can provide 17 billion dollars to a car industry that's failing but........well don't even get me started..grr! Anyway, I have 3 dependants now, but Em doesn't count per the government (staring blankly). Although I did reach a sweet little lady, and with another friends help got bumped up for medically dependant children list. That will help us ALOT! Since Jude is having severe seizures he may qualify sooner....we were in a line of like 12,000!!! It will still be a few months, but MDCP provides support for families that do carry insurance, have jobs, etc. My understanding is they provide what the insurance won't cover such as therapy, chairs, nursing, etc. That will be wonderful if it comes through. Like I have pointed out before we are some of the lucky ones! I have a good job, good insurance, supportive friends, and a loving family. So we have a lot of support and are not drowning... I just feel for those that are drowning, and who deal with this system. It can be very confusing.

I am tired...

I am tired today. In fact I feel like I could curl up in my bed and sleep the day away. I woke up several times last night for various reasons. The last reason being that Jude woke up with a seizure again, and I heard him in his bassinet. I carefully took him out of his bed, and laid him in Mike's arms. Mike then massaged Jude's head putting pressure on that one point I told you about, and the seizure started going away. So the three of us fell back asleep together until Emily came in to get ready for school. I am not sure if getting down to three-four seizures a day is normal, or if they will have to change his meds.

Emily's counselor called this morning, and said he had a long talk with her. He said he thinks she is handling this so well that he left it up to her on when she would like to see him again. SO that's good to hear!!! I know she will have her down moments, and I will be there for her. Now if I can just get her to realize when I ask her to feed her cats it means to change their water too, and that putting her laundry up doesn't mean just lying it on her bed.... :). ha! She has her Christmas party tomorrow at school, and then is out for a week. I think she is excited about the break in school.

I am going to try to work through lunch, and leave a little early today. So I am going to keep this update brief. I will check in later.

** ~ Well after I wrote the above Mike called, and said that Jude was having another seizure. Whether than waiting he just gave him a dose of Klonnopin, and now Jude is sleeping soundly. It seems the IRS is also out our house......they don't care much about a crisis huh? It's ok though because we always work everything out. Jude smiled and "talked" to me a lot last night as Mike professed "he must be bored with me". Which is far from true, but it was so nice to see his smiles. I am anxious to get home to see them again.

Gymboree

Jude has Gymboree play and learn at 1pm! I am excited and cannot wait to see him ......... well sit there..lol! He is only 3 months so he wouldn't be doing much... even without his neurological issues, but I am hoping the bright colors will be good for him. I will add to this blog when I return from his lesson. I also put a call into the neurologists office today about getting a prescription for therapy for Jude at Cooks. I think this will be beneficial, and I am waiting to hear back from them. I also heard from Emily's counselor at school that they are pulling her out of class for the first time today for a little talk. So I guess life is moving right a long like it should. It seems that no matter what your circumstance is life really never slows down, and I guess it really shouldn't. I will update when we get back.

** update ~ Jude LOVED Gymboree play time.... I was just amazed. He giggled and smiled more than I have ever seen him smile. He especially loved when the teacher played her tambourine and sang. Although please make note that Jude does not like bubbles..at all....lol! He kept sticking his bottom lip out every time a bubble floated near him. Mike and I did get a little upset at one point because they were doing a tracking the ball exercise. Jude did not track his ball while all the other kids did. So we both had to remind ourselves that we cannot get upset while Jude is doing therapy. The ladies at Gymboree were wonderful when we explained Jude's issue, and were really praising him with every lesson. He loved it any time any of us clapped for him...in fact he thought that was hilarious. So we will now go to Gymboree on Wednesdays and Saturdays, and we will also incorporate in Cooks therapy. Jude did have a seizure when we first arrived for his lesson, but Mike seems to have found a pressure point on his head that helps soothe the seizure some. We are going to look into that with the doctor and a therapist we know to see if there is any relevance in that. Maybe accupressure will help?!?!? We are going to take Em on Saturday with us to Gymboree because she will just LOVE playing teacher and helping Jude with the puppets and such.

The cutest thing was watching Mike sing these silly kid songs and just love every minute of it with Jude. He melts my heart:

Hush now don't cry........

Well another emotional writing so hold on.

Mike called me several times today because Jude was seizing. As stated before they (the doctors) decided to give Jude an extra dose of his phenobarb. Whenever I got home I saw the dark circles outlining Mikes eyes, and I knew it had been a rough day for him. I took the baby, and gave him a bath in the warm water while watching his adorable little smiles shine through his tired face. Suddenly I realized his tiny hands were turning a light shade of blue, and his little lip began to quiver. I quickly yelled and had Mike whisk him out of the tub into a warm towel, and into his pajamas. I then wrapped him in his fuzzy blue "thank heaven for little boys" blanket, and cuddled him very close. Emily herself had also taken a bath and had come downstairs, although rather than cuddling with me she wanted to cuddle with Jude. It seems I have been replaced (I am currently blinking blankly), but it's ok I am happy for that. It also seems that Mike sat down without my knowledge and had a long talk with my sweet Em. He told her that it's unfortunate, but with everything going on she was going to have to grow up a bit. I had a tendency to baby Emily, and therefore she had a tendency to act like one sometimes. He told her that it was time to follow through on rules, and complete her chores correctly rather than being told several times to complete them properly. Prior to knowing this conversation I noticed Em ate her entire dinner tonight without complaint, and then placed her plate in the dishwasher after washing it off. I was so impressed. I teach my child to do chores, but she did that one without being asked.........she grew up a little bit before my eyes. ** (Let me add a side note here because there was a question). Em is still very much a little girl, and I will keep her that way. I am just working with her on responsibility which has been a tiny issue with her at school too. I have been a bit overprotective and probably did to much for her. So she is simply learning to complete her tasks correctly. She is seeing a counselor, and so far is just as wonderful as she always has been.


So tonight Jude had yet another seizure, and Mike and I both acknowledged that it was longer and stronger than usual. We discussed driving to the ER, but Mike knew they would only be able to administer the klonnpin (sp?) just like we could. I felt tears streaming down my face again, and I controlled my sadness. It is NOT me going through these aggravating seizures it is Jude, and I let him have his time. I cradled him deep in my arms, and watched him ever so close. Mike is so good about talking to him during his seizures, but I am more of the non verbally communicative sort, and prefer to hold someone tight. It lasted awhile, but finally the seizure lost it's grip over Jude, and I then fed him some pedialyte to restore anything he lost. I looked deep into Jude's eyes and he looked at me, and suddenly I realized his eyes looked a little vacant and with that moment my heart sank. I looked at Mike without truly communicating my thoughts, and told him that I have realized that having these seizures already at 3 months is not an indication of a positive future. He knew what I was talking about.....it's just so early in his life. I thought of how I would ache if I lost Jude, and then I thought of how much I love him too and hate to see him suffer. I held him even closer, and I watched him slowly fall into a deep sleep. I then placed him into his bassinet, and then I headed upstairs to Emily's' room to double check on her. At the foot of her bed I found a sweet note in a child's handwriting that simply said "Mommy, I love you". I picked up the paper and wrote in a red marker "Emily I love you more" and left it in front of her door so it would be the first thing she saw in the morning. I am not writing this blog tonight expecting tears from anyone........ pick yourself up because we are OK! I am inspired from my tiny son, husband, and Emily. I can still see the passion in my husband, the empathy my daughter carries, and the inspiration lil Jude carries.

I stopped and thought today about when I was younger. As stated I have been through a lot of tragic situations that would have left a road of excuses for any time I wanted to deviate from the goal sat in front of me. I think I have done well....... except for finishing my degree. I love my job, and my boss, but I think I eventually want to obtain my degree. I may never leave his office, but I would be able to say I have a degree in psychology focusing on Child development. How fitting ......right? So once we make it past this financial crisis I plan on trying to finish if at all possible.

So I just left Mike upstairs after watching a movie, and allowed him to have some boy time playing his games. I am blogging, dealing with feelings, and listening to music..... of course. I am looking forward to next week. I am really working on making this an amazing Christmas for my kids with simple love, and happy thoughts. I am also looking forward to venturing towards Missouri to see my family, and having a chance to escape my current bubble containg a whirlwind of issues. I enjoy my family there, and I feel very close to them even though I don't see them all the time. It's different from any other trip I have taken there, but that's ok........it's just a new normal :).


Speaking of normal....I have never been one for fashion, fancy jewelry, etc but I am one for working out and looking good. I did that famous mom move where you grasp your face with your hand while looking in the mirror, and run it down your tired gaunt face thinking "What the hell happened here" tonight. Then you look down and realize the rest of your body isn't so gaunt it's a little fluffy...ha. Then I looked to the right and realized I will eventually find myself again, but right now I am lost in between a fuzzy blue blanket, and a hot pink one upstairs. I pray that Jude does not feel his seizures which I am sure he doesn't. He looks normal and smiles, then in an instant his eyes go blank and his head bobs, and in the next instant he smiles again. Emily's hurt on the other hand runs marathons along her sleeve. So we will deal with that too.


I had a quick story to share and then I will go. My friend Kel's son is very aware of our situation after visiting the Catholic store with Kel prior to the baptism. He overhead his mom telling the store clerk about our issue. He looked at his mom and said "Mommy, all Ms, Jennifer has to do is take baby Jude to the doctor". She appreciated his innocence and simply explained there are some things doctors cannot help. She then said, "some day God may want baby Jude to come to heaven with him". Her sons response?... A very worried "Well what's God going to do with baby Jude???". She told him "I think he will set him on his knee for him to look over all of us". I believe my baby will be healed, but I also have to give into the pain. I have to tell people that their stories of faith radiate through my heart, but the reality is I watch my baby writhing from issues with his body. I realize he is only three months which is early for seizures, and that ............ issues lurk around the corner. I will fight those issues, but they are reality.

Here is Jude's lil website that was set up. So sweet! http://forbabyjude.weebly.com/ Also I have links to other children's sites to the right of my page. I have really found inspiration through these other mothers.

Also, you can go here and light a candle for Jude. Just use the group name Jude.
http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=Jude

ps ~ on a side funny note ...... um Sarah........I obviously did not steam the artichokes long enough..........YUCK! Remind me not to do that again......and the furry things at the bottom are gross ;)

Mike's turn

Well I guess it's Mike's turn to cry today. Jude has had several seizures today, and its so hard on Mike to watch. I just put a call into the doctors office to see if we should be looking for something specific that constitutes an emergency. So I tried to calm Mike down, and tell him that I am here for him. Breaks my heart to hear Mike upset though. Well I am super busy at work, thank goodness for that, so I better get back to work. I also got two websites sent to me today people have set up for Jude. One is a photo contest that has been set up where they are donating the proceeds, and the other is just a site for Jude. So nice of people!!!! I will post the link in my link box soon.

Ps. We heard back from the doctor who is giving Jude an additional dosage of the phenobarb today. If the seizures continue then they want us to bring him in, but I hope that doesn't happen.

Monday night

I had talked to Mike prior to leaving work, and we knew we had to go to the grocery store. It's one of those things that we have put off for so long that spider webs were forming in parts of our fridge. Not really... because sweet people have brought food by, but still we needed staples. We had put off the trip prior to this issue with Jude rearing it's ugly head so we had to go. It's like my eyes needing new contacts.......I am pretty sure my eyes my fuse to the contacts I have been wearing repetativley very soon..ha. So therefore, we departed in this cold weather with Em, Jude in a bundle, ourselves, and Ems sweet inseparable friend Addison. After shopping we had to take Em by gymnastics which lasts until 8:30, and then finally home. While being out and about tonight I reviewed the last weeks happenings. I began to rehash everything I could remember in my mind like an old black and white flicker film. I began remembering being short, or cross with people who were simply trying to help. I was even short today with someone asking me to go to a healer. So I composed a text message that I sent out as a mass text to everyone letting them know how sorry I was if I was ever rude to them in any way within the past week. I knew the apology wasn't necessary, but still I wanted to. I didn't really receive any texts back though and then I kinda sunk into my sadness again..........and I HAVE NO IDEA WHY!!! Maybe it's because I thought "Man I must have been a ....you know what". As my cousin says I put way to much thought into what others think.

When we got settled at home I sat with Jude cuddling him on the couch when suddenly he had another seizure. I saw his tiny little body jerking in the same direction. His head goes down, his mouth goes open, and his back arches. He never really complains, but you can tell he doesn't truly understand what is going on. Then for the first time I felt like handing him to Mike while exclaiming, I CAN'T DO THIS! I felt so out of control because I could not stop this tiny baby's pain and I could not understand WHY! Never have my life have I ever thought I ...CAN'T DO THIS. Those words have never been in my vocabulary. I was so positive today, and I plan to continue that way. Although, I felt like I let myself down a little and let Jude down too, by allowing myself to feel sadness. Earlier I even wrestled with myself on posting these thoughts because I knew that I would be ok in a few hours. Although, when initially starting this blog I promised I would be honest with every thought and feeling in case someone else needs guidance. So the reality is I am not always miss merry sunshine although I wish I could be. Sometimes I am just pissed off, and afraid! As I have stated before I am very aware that post partum is lurking behind my every step so I have to stay two steps ahead of it. Although i digress to Jude and the fact that I kept holding him as close as I could during the seizure while I watched Mike administer the sedative we use for the seizures. I watched how Mike can disconnect himself from the situation which is normally what the mom can do. For and instance I felt jealous of the fact he can do what I normally can, and grateful at the same time. I felt my gut wrenching inside of my body, and I quietly put my hand on Jude's chest feeling for his heartbeat. I watched him for over 20 minutes as the cluster seizures wreaked their havoc. After the seizure released it's grip Mike and I finished watching Heroes, and from there I went and bawled in the bath tub. I wanted to tell Mike how upset I was, but I knew he was hurting too. Plus, we want to only have faith in Jude at this point. This is NOT about me, or him so I cried to myself. I gathered myself up, and realized people are probably sick of hearing this babble hence the reason for the non response to my text. I mean GOOD grief people can only take so much. Then I read over some inspirational messages, looked at Jude's sweet face, tucked Emily tightly into her blanket that I just washed, and listened to some music. Now I am going to bed. Sorry to ramble, but it's needed I guess. Good night.

Here is some lyrics from one of my favorite singers kind of the way I feel tonight. Maybe a small message to my strong husband:


Sleep, don't weep, my sweet love
Your face is all wet and your day was rough
So do what you must do to find yourself
Wear another shoe, paint my shelf
Those times that I was broke, and you stood strong
I think I found a place where I...Sleep, don't weep, my sweet love
Your face is all wet 'cause our days were rough
So do what you must do to fill that hole
Wear another shoe to comfort the soul
Those times that I was broke,
and you stood strong I think
I found a place where I feel I will...
Sleep, don't weep, my sweet love
My face is all wet 'cause my day was rough
So do what you must do to find yourself
Wear another shoe, paint my shelf
Those times that I was broke,
and you stood strong
I hope I find a place where I feel I belong
Sleep, don't weep, my sweet love
My face is all wet 'cause my day was rough

Don't get me wrong I do not feel sorry for us. We are so happy to have Jude in our lives. Mike just came downstairs and said "babe are you still up??". Yep, but I am about to crawl into my warm bed feeling safe, and warm. That always makes a person feel better!!! Night.

Monday

I have a lot to blog about, and I am unsure exactly where to start so I am afraid this blog may ramble some. The baptism was Saturday, and when I got up that morning both Jude and I were both pretty sick. We had stuffy noses, and were coughing a lot. So we took a warm bath together to try to get some of the crud out. Jude loves his bath time with mommy and he snuggled up close to me in the warm water. Mike came and got him out as usual, and then I dressed him in his sweet baptism outfit. When we got to the church I felt a little out of sorts, and almost like I was on the outside of a dream looking in. So we went through the steps of the baptism, and I was amazed at all the people that came. Although, afterwards when everyone came up to say hello it was a whirlwind of faces. I felt like I did not get enough time to say hello, and thank everyone for coming. I remember during the service thinking that the inside of the church was very surreal, and trying to concentrate on what the father was saying. My mind kept swimming around and around and I felt a little sick. I realized that all these people were here because of Jude, and because he is sick. You never think it will be one of your kids that people are reading a blog about, donating to, or praying about. It's so nice you have people to support you, but the issue itself can be overwhelming. I catch myself apologizing for not concentrating on what people are saying. I even hurt a family members feelings by cutting her off in the middle of a bible story. I just couldn't listen anymore, and when she cried I felt TERRIBLE!!! I try to remind myself that just as I am at a loss regarding how to ease Jude's pain others are at a loss at how to ease mine. When Mike placed Jude's head over the area for the actual baptism Jude was not very happy as seen below:

After the Baptism a lot people went back to our house. Many people brought food, and even little things for Emily. I felt very blessed to have so many great friends and family surrounding us. When everyone left though my mind was tired, and when I looked around I realized nothing had changed. We were still in the same situation, and I went to lay down. We had dropped Emily at my cousins house so I grabbed little Jude, and we went for a nap. Soon Mike came in and laid down beside me just hugging me. He told me he was scared for me. He said he knew I could handle this and even though I seem really down right now that I would pull through. I told him I know I am flustered right now, not making sense sometimes, and very scatter brained. I asked him for patience while I deal with all this. He said he knew I would be fine, but that his real fear was that if we lose Jude I won't be able to make it back from being sad. He explained that I have been through so many tragedies that he isn't sure I could survive this one, and he cannot make it through losing me. I assured him I would be ok, and that I honestly thought the only reason I was still sad right then was because I was mentally and physically exhausted. I guess Mike left because I fell sound asleep as did Jude. When I woke up it was dark outside, and I slowly made my way out of the bedroom. I truly felt refreshed and much better!! So we spent the rest of the night together, and I went back to bed without any problems ... even after my nap. I probably had 12-13 hours of sleep total, and it was great. The next morning I bounced out of bed at 8am making bottles, getting meds, taking a bath, and asking to go to church. Yes, you can call the press if you want to but we went to church!!! My sister, and my friend James had suggested a church that meets at Emily's school. I figured that this place was right up my alley when I walked in and the pastor was wearing jeans, had a tattoo, and was full of energy. I was RIGHT too, because I really liked the service. It ......... of course seemed to fit with what we are dealing with like the words on the bible were slapping us in the face. His sermon seemed to radiate through us, and at one point without us speaking a word Mike and I both looked at Jude. Emily listened with intent, and Jude seemed to sleep but giggle through the sermon. Once the service was over we ventured back home. I sat on the couch holding Jude, and Emily laid on my right shoulder. I thought about how lucky I was. Yep that's right I said lucky!!!! I realized I truly have two beautiful children both who each hold different attributes that make them even more beautiful on the inside. Throughout the day Jude giggled, and smiled more than he ever had. Mike worked with him on holding his head up, and Jude even scooted some on his mat. Emily was patient as usual, and just enjoyed her day with us. Then my phone rang... my aunt had received her Christmas gift from me which was framed pictures of the kids, and she called me bawling saying what a sad situation this is. I corrected her, and told her this was no longer a sad situation because no matter what happens Jude is a joy to us. His tiny little curls that flip up, his big full lips, and his big pretty eyes all combined make up a beautiful little baby. He is our lesson in life, our blessing, and we will do everything we can for him, and he has even inspired Em to seek out a career in the medical industry. We aren't so worried about the medical bills, regular bills, and Jude himself anymore. We are lucky to have a nice house right now, and to have two beautiful kids in that house. I guess we are starting to accept our reality, and we are marching right along with it. We know it won't be easy, but we will all make it. I am also lucky to have an awesome husband who has now dedicated his life to his little boy. I wouldn't want to go through something like this with anyone else, but him. I will write more tomorrow, and as the week progresses regarding making all the appointments with different agencies.

A tired little Jude after a seizure:


A happy Jude:


Jude working with daddy on keeping his head up:

The weekend

I have lots to update on the baptism and the weekend. I will do that tomorrow, but just wanted to assure people not to worry. We are just tired, and I have not had a chance to update. Jude has had about 3 seizures a day, but those are very down from what they were. Check back tomorrow I have lots to post.

Friday

I am so happy it's Friday!!! It's been a good day at work, but I am ready for family time.....family time without a hospital!!

Mike said Jude has had 2 seizures today, but that is still a lot better than he was doing. We are still praying that his medicine does pull through, and stops them all together. Kel is helping get his baptism stuff for tomorrow. I am a little confused at what has to be done for a Catholic baptism. So she has been a big help!! She called and asked me if I had a candle and I replied "for what?" she knows I am a little lost and just giggled...ha.

I am feeling a bit out of sorts this afternoon, and I am not sure why. It's not that I am negative, maybe just a little lost. I have also been very busy at work today so maybe that's what it is. We were getting our time sheets ready to turn in today for payday on Monday, and I looked at my hours out. I thought about my time off next year, and what it may entail. I also thought about the vacations we had planned to take the kids on. I want to be there for Jude, but I am also realizing getting away to normal places, and doing "normal" things is going to be more difficult. We will have a new normal I guess. I don't mean that to sound selfish, but honestly even a night out is going to be hard. We have to have someone that can control a seizure. We will do what is best for Jude though, and as tired as I am right now we aren't going anywhere any time soon anyway. I reminded myself that even though this seizure diagnoses is new, these worries are not. This has been going on for over a year for me, but again everyone has their own story. Plus, I pray we have many more years of dealing with these emotions. By the way.... I get over these feelings in about an hour. I just hash them out on my blog because I guess it's theraputic. I am anxious to get home, and see my babies today. We will have a calm night of watching the new Indiana Jones .... hopefully seizure free.

We hope to see everyone at the baptism tomorrow. It will be a day of rejoicing.........not sadness!!!! :)

Please have a good weekend, and hold your kids close.

Dallas Cowboys tickets

If you know of anyone that would love to attend the last game at Texas stadium please let them know these are on ebay. We appreciate it very much!!

http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=170286886972

Mike called me this morning and told me Jude had a small seizure. He then started crying and said "he is just so beautiful" and I heard a tiny coo. He was better today, and its not that he is sad he just realizes how sweet Jude is. Jude also has a bit of a stuffy nose so I used the saline he loves so much, and sucked out his nose which he loved even more. Trust me I was his best friend at that point....kidding.

Well as stated I am more positive now and adopted the motto that I head on Home makeover ~ See the potential not the problem!

Have a good day.

Thoughts on being positive

Mike and I seem to be in warrior mode now. We got a lot accomplished today!!! Through contacts and more we have set up therapy for Jude, found a contact with Scottish Rite, received numerous referrals, and even discussed therapy for our family as a whole. As stated we will no longer cry over what may happen! That doesn't mean we won't shed some tears over who we wanted Jude to be, but we realize that was our own selfishness. We will pick ourselves up with our arms granted a little floppy, but believe in ourselves and Jude without any doubts. We have decided to only move forward! We have been told by many people going through this same type of circumstance that they too were told their babies would not live much longer, or wouldn't make it out of early childhood.... and their children are much older. So we are beginning to see a little bit of a sunrise in the horizon we are riding off into. This sunrise is full of hope, hard work, and unconditional love. We are ready though!

Mike was SO good with Jude today. We will find a way to keep one of us at home, and it will all work out because we have faith. I want to thank Jocalyn my new found friend for helping me through a lot of this. Sometimes my mind is so scattered I forget to email her back, or answer appropriately but she always seems to have the right information or words. Whether you know it or not you have helped so much. I have noticed I forget who I talk to during the day and about what. So forgive me if I am a little lost sometimes.

Anyway, on another note my cousin sent me an emailed gift certificate from Zappo's. I have a tendency to buy Emily tons of shoes and ignore the mess on my own on my feet..ha! Not that I don't have the funds (normally), but I never have the time. Well my brown boots that I love are just falling apart, and my cousin sent me a the gift certificate with a sweet message that said "Get yourself some new boots. We can't have you going through a tragedy with broke down shoes, now can we?!?". I just love her she is so funny and always makes me laugh even though she claims to be an "Ass hat"ha. You aren't to me and never will be ;).

Anyway, please don't forget Jude's baptism will be Saturday at 10am at St Michaels in Bedford. We will open our house up afterwards for anyone that wants to stop by. By the way, Mike noticed Jude was coughing a lot today and we called the pediatrician. I needed to contact them anyway for therapy referrals. They were so sweet and said bring him in asap! Turned out he simply had an ear infection so we will get that taken care of. The pediatrician said Jude's lungs were "Crystal clear" which made us very happy. After the doctor Jude and Mike came by to visit me at work since the doctor is less than 5 mins from my office. I smiled very big when I saw them come through the door. Our wonderful neighbors watched Em again for a little while until Mike got home.

So tomorrow I head back to work again. I will do all I can there, and at lunch work on more classes and benefits for Jude. To earn money for Jude's bills, and to keep Mike at home, my adorable hubby, decided he is giving up his Cowboy tickets I got him for our anniversary. I had gotten him the tickets to the very last game at Tx Stadium. He said Jude is more important, and I think that is so sweet. We are HUGE Cowboy fans, and I know it means a lot for him to take that step. I argued, but it was not worth it. He said he wouldn't enjoy the game anyway, and we cannot take Jude there and be in the cold. We are doing just fine so don't fret...I am just showing how dedicated he is to his tiny son. Makes my heart MELT! So he will be putting his 2 lower level tickets up for auction on ebay if you know anyone interested. They even come with a parking pass.

I know Mike and I will be fine! Throughout this long experience (we hope it will be long) we will still be passionately in love. A lot of people are in love, but we are passionately in love and I am thankful for that.

Good night all

Someone sent me this {tear}

Well I am sure a lot of you moms dealing with these issues have this by your side, but someone sent this to me and of course I cried! I think I really cried because someone would think of me so nicely because there are days I don't feel very nice, and feel guilty for that.

"The Special Mother
Erma Bombeck

Most women become mothers by accident, some by choice, a few by socialpressures and a couple by habit.This year nearly 100,000 women will become mothers of handicapped children. Didyou ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments forpropagation with great care and deliberation. As he observes, he instructs hisangels to make notes in a giant ledger."Armstrong, Beth, son. Patron saint, Matthew. Forrest, Marjorie, daughter,patron saint, Cecilia""Rutledge, Carrie, twins, patron saint...give her Gerard. He's used toprofanity"Finally He passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one God? She's so happy." "Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel.""But has she patience?" asks the angel."I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy.""But Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?"God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary.When her child says 'Momma' for the first time, she will be present at a miracle, and know it!" When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see...ignorance, cruelty,prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.""And what about her patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror will suffice."

Back to work

I had to go back to work today, and I miss little Jude so much although I have gotten a lot done. I have caught up on all my work for the past few days, and even set several appts for Jude. I have gotten 1 free class at Gymboree play and learn for him, contacted the state regarding early intervention, and put a call into his pediatrician. The state supplied intervention used to be free, but it seems they do bill your insurance now.... from what I understand. We will do what is necessary though, and I am looking for even more therapy if possible. Jude is wheezing a bit today, and coughing so we are taking him to his pediatrician tomorrow just to be safe. That is our big scare now his lungs.

Jude had a pretty bad seizure last night, and was just exhausted afterwards. Mike had ran to the store so I was alone with him, and it just broke my heart. Jude was putting his little lower lip out in between the cluster seizures, and would let out a little cry. I kept reminding myself that they normally don't remember the seizure afterwards. After the seizure he fell fast asleep although he did wake up later that evening and played with us some more. He talked to us and was just adorable. I was in the bath talking to Mike who was in the bedroom, and Mike said Jude kept getting irritated because he couldn't find me. He was looking around the room and grunting. So he would bring him into the bathroom and Jude was bright eyed looking at me very quiet. We read more on the diagnoses that Jude was given, and it is rather frightening. Although, we have decided not to shed anymore tears though over what MAY happen. We are focusing on the future. Mike has sent me several messages today telling me how Jude is doing. I wish I could be the one at home, but Mike is such a good dad! We will find a way to keep him there if possible so Jude always has a parent with him. His next appt with the neurology center is in 6 weeks unless something happens before then. If the phenobarb doesn't work they will switch him to topomax. I heard the side affects can be a little more severe with topomax so I am hoping what we have now will work. I feel like it has been an entire year of doctors with the difficult pregnancy and now this. I guess if I step back and look it really has been. It is draining, but on the other hand I have learned so much.

Oh and for your enterainment this is the audacity of some people in the world. We have a rather "difficult" client and by difficult I mean he is a professional ass that with my luck only likes to deal with me. Well he called in while I was out the other day, and Sarah was helping him. Our computer systems were down so she was not able to take his payment at the time, but offered to call him back. He threw such a hissy that she directed him to the corporate office. He threw such a hissy with them over the late fee he didn't want to pay ...he is always late that they called our office to complain about him. He then called Sarah back again demanding to talk to me......this is that conversation.

Mr Jerk: I want to talk to Jennifer now!
Sarah: Well she is not here, but I will be happy to help you as soon as my system comes back up.
Mr Jerk: Well it must be nice for her to make all that money {ha} and be out
Sarah: She is in ICU with her baby and isn't able to be here
Mr Jerk: Well sounds to me like she should get back to work to make money to pay for the medical bills.
Sarah: click ~ hung up

Mr then called back this morning yelling again and demanding to talk to me. Sarah explained I was on the other line helping another customer. He was rude once again saying I just didn't want to talk to him, wasn't ever here, etc etc. All untrue items, and then Sarah went off! He then said he didn't care at all about my son being sick. So my sweet boss is waiting on him to return his phone call so he can tell him to take his insurance elsewhere because he won't have people treat his employees like that. So a BIG hug and thanks to Sarah and Tim!

By the way several people have asked how this happened. They determined that Jude had an in utero stroke around 18 weeks or before and his brain never developed right. It just happens sometimes. 1 in every 4000 births is afflicted by a stroke just many don't have this severe an outcome, and some are worse.


Here is some pics from the hospital.


We just got the news that baby Jude gets to go home!!


I am all bundled up! It was warm when we got to the hospital, but now we hear it's freezing.


We are home, and my daddy takes good care of me. Daddy looks pretty tired though so mommy needs to take care of him.