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.

Once again...

I am a blogaholic lately......but it helps so bear with me. I have lots to share on Jude, but I will do that tomorrow because I would like to take a moment to reflect on some of the emails I have received from other parents suffering with their childs brain issues. I hope the parents don't mind I have posted these excerpts, but I will not list names. I am so inspired by these parents. They have strength beyond measure, and inspirational children. I am in awe of everything they do for their children, and how they never give up hope!!! They are my mentors, and I am so happy to have heard from them. Here are a list of comments I have received from others.

"stay encouraged.. . Our youngest daughter only has her her right brain and no evidence of a left brain at all and no corpus collesum and had a in utero stroke on the remaining brain there... she sits finally and is starting to roll over a lot, smiles, says dada and baba and squeals and makes all kinds of sounds and is such a wonderful delight and very smart :) The brain is such an amazing part of the body!! "

"Sounds like Jude is actually doing well. Things can always be worse, I think you probably realize that. The brain is so amazing. My daughter had a stroke at 9 days of age & is missing almost all of her occipital lobe, her temporal lobes are damaged, little bit of the frontal lobe and some damage in the pons she is 30 months old, has spastic quad cp, microcephaly, seizure disorder, cortically blind, gtube fed cant roll, bat at objects, sit, stand, crawl & non verbal but there are kids worse than her that have less damage & vice versa. It's crazy actually. "

"Today is my ____ 7th birthday !!!! No big deal, you think? When he was born , the prognosis was that he would never live long enough to leave All Children's Hospital. We brought him home on his first birthday. Yep, he stayed in the hospital a whole year. Many re-admissions later, he is home and as healthy as he gets. (weaned off his seizure meds now) . We were then given a life expectancy of 3 yrs, after his 3rd birthday, then we were given a life expectancy of 5 yrs. Now we are told , "we only expect him to live to mid-teen years". I was told he would be deaf, blind and mentally retarded. Now he walks and talks, he plays and goes to school. He has a quality life. No, it's not the life that many other kids have, but for ___ it's a wonderful life. He has many people who love him and many professionals who wonder how he has survived. I know, I Believe in Miracles ! My message to you is , never give up hope"

"Please don't despair. These children will surprise you time and again.My own son was nonverbal and then one week, boom. Words. Then sentences. Now he cracks people up."

"Fast forward to now he is still with us, he goes to school and yes he does have his problems. He has micro,ventricularme galy,seizures, is blind, is delayed developmentally, has GERD, is tube fed, and the list can goes on.They, the doctors don't know why he can do somethings with the brain damage that he has. He can say some words, he can sign some words, he now can sit for up to 3 mins by himself. He is the only kid in his class who participates in music class. I could go on with what he can do but he can do things.Our motto is as long as he keeps fighting we will keep fighting for him. We will do anything for him. He is loved and he loves us back."

Thank you so much for your great words!

Baptism update

Jude will be baptized Sat at 10am at St Michaels in Bedford, Tx if anyone would like to join. Mike grew up in this church, but still to get a speedy baptism in a catholic church takes an act of congress. So a big thanks to Mike, his mom, and Kel. We have had a lot of people offer dinners, etc to help us during this time. We will have the house open after the baptism for anyone that would like to stop by. This isn't only about baptism, but also a chance for those to meet our little miracle. Please keep in mind his little immune system can be delicate, so please don't come if you feel ill.

Also, people have emailed offering baptism gifts. In lieu of gifts my friend Kel set up a fund for Jude to help with his therapy, bills, etc. She is getting that info out.

Today, I went and found a sweet little christianing gown for Jude. It is so delicate made of brocade, silk, and knit. It is a creamy white with tiny blue accents. I got a pair of tiny booties that have blue accents to match, and a sweet bonnet with a cross on it. We are overwhelmed with the amount of people that want to meet Jude. He has been good today, but has pnly had two break through seizures. It does take about two weeks to get the phenobarb completely in his system so we are holding out hope that this medication will work. I did notice the differences in Jude's personality today. He is a bit spaced out, and sleeping a whole lot. Although, he did still coo and smile at me several times.

I took Em with me to get Judes outfit, and I bought her a smoothie because she loves them. She is being such a BIG girl during all this. We talked at length about Jude, being sick, and more. We talked about when my mom passed whenever I was a child, and how people try to comfort you. She is a little scared to pick Jude up, but she still does. She even got the flash cards out today, and I found her holding them up to him speaking in her baby voice. She would say "This is a baby bird just like you". She is just a doll baby and I told her I just adore her. I had a sweet lady call and say they wanted to get Em Christmas gifts from their church. Em has a great Christmas coming from us, and family members. So I asked her to please give those gifts to some little girl that is in true need. I then explained about Jude's therapy in case they wanted to contribute. Anyway, Em is well taken care of. I think God knew this was going to happen and had me put some money aside for some reason and then got Ems gifts early. I never ever get Christmas wiped out weeks before. I am organized people, but not weeks early organized.

I am much more at peace with this entire situation. I know we will get Jude the help he needs in every capacity. I also know he is our miracle because he has far exceeded what the doctors expected by just being born. We from here will take it one day at a time and never lose hope. I donated my cord blood so I was not able to save it due to financial means. The cord blood doesn't really work in this situation, but Mike and I discussed that. If it would help Jude I would risk my health to have another child, but I don't think it would. As I have stated many times someone's story is ALWAYS worse than yours or mine. So the prayers we have for Jude should be spread out too.

Sometimes I feel like we are just constantly talking about this situation, and it can wear people out. I am trying to get back to normal, but it's hard. I texted my cousin today and told her how much she means to me, and everyone else that has been so supportive.

I will post more later.

The day after....

You already know that last night was horrible because Jude aspirated on his meds and we had to call 911. At least now we know it takes them over 10 mins to get here because we are in a Fort Worth annex. Anyway, he is ok. He slept most the night laying next to me, but would not sleep in his bassinet. When he got up this morning we knew it was time to administer the meds that he choked on last night. Mike's hands were shaking in fear and he was praying under his breath, but he was being so strong. I insisted we put his meds in 1 ounce of pedialyte. He sucked it down within 2 mins so that is now going to be our new routine. Since he got the entire dose for the first time he has been sleeping ever since. Which I worry his food intake is less, but I know the sleep is good too. He did spend an hour awake this morning with me talking to him like I always do. He cooed, laughed, and smiled at me. I realized last night by research that the dr's were basically saying the only thing that is normal in Judes head is his brain stem. He really did mention "all it takes is a brain stem to be a baby". I don't really agree with that because he smiles, rolls over, coos, and plays with you. Something has to be working if only a little bit. We also did some tests this morning with him I would walk to one side of the room and call him. No matter where I was he turned to find me and would look right at me. Last night was scary, but we made it through with lots of tears. The dr's have not given Jude long to live, but we have! They said he has close lipped schizencephaly, PMG ( but 2 doctors have differing opinions on that), a large arachnoid cysts in the back, a small cerebellum, missing his corpus callosum (or it's very very thin), and cortical thinning. In other words his brain is MESSED UP! I still question what I did while he was inside me, but the doctors reassure us it was just a genetic issue. He had that stroke and his brain never recovered and therefore formed wrong. He does so much though and we can only hope he continues too. We will cherish these moments we have with him, and get him the therapy he needs. We mourn for what we have lost, but we are thankful for what we have. Thanks again to everyone. I am in awe of my family and friends with everything they have done. I have offers from people to bring food, clean, and my best friend even set up a fund for Jude. I am just amazed!!!!!!!! My aunt even told me to quit work and live in her basement which isn't feasible but so cute she offered. I don't think I told you last night, but the fire truck ran over my neighbors mailbox and demolished it.....it provided a little horrible entertainment. They are German and had no idea what the hay had happened!!! We also learned our neighbor across the street is a physicians assistant, and he said if anything happens we can come get him until the paramedics arrive. That is so great to hear! I am sure I will keep having these up and downs. I slept until 12:15 after Jude went back to sleep and I am still here in my pajamas. Tomorrow I have to go back to work so I am spending my time with my kids today. I have the most amazing husband walking with me hand in hand through this tragic nightmare. Without him I know I would fall to pieces...thank you Mike. I will update more tonight.

Even in the hospital he is so cute!

The night from hell!

*** CAUTION when reading these from now on they are full of reality and heartbreak***

Let me preface this with letting you know that Cooks let us go home tonight. We were thrilled with the idea of getting to go home, but scared at what laid ahead. We had crash courses in seizure emergencies, first aid, and cpr. Although, we really need one on one help on the cpr. The neurologist came in again and set down with me and we talked at length. I asked him many questions. I asked him if with the brain he saw on the MRI if Jude could ever be functional. He said "yes, but unlikely". He then told me a story of a little girl that came into him at 13 yrs of age with right sided Schizencephaly. He said she was in a normal class though working at a normal level which is very unusual. This was just one of Jude's diagnoses, but his is affecting both sides. The neurosurgeon we really love came in and sat down to talk with us. He said he agrees with the MRI findings except for 1 condition which has to do with the gyra's (sp?) forming in the brain. Which they explained those were the cauliflower forms in our brains. Jude's supposedly forms very small and close together. The neurosurgeon said he doesn't necessarily agree with that diagnosis. He did agree that Jude would probably never walk, or talk. He did say that there is a possibility he would pass early. He explained that these children tend to aspirate easy and either choke, or form pneumonia from the aspiration. He was more hopeful though, and explained he sees unexplained miracles science will never explain walk out of that hospital everyday. He said on numerous occasions he has the most ill fated MRI produce a functional child, and a 100% normal MRI produce a severley retarded child. He explained that you just cannot have a crystal ball.
So we gathered our room up! I dressed the baby in warm clothes and held him close until it was car seat time. Emily had come to the hospital for the first time to see Jude, and to hear about what was going on. She held up very well, and helped us leave by steering the cart down stairs. We then all loaded into the truck outside, and set out towards the pharmacy to get Jude's prescriptions filled. The pharmacist that normally takes forever, seemed to work in great hast and talked to us personally. I noticed that I have seemed to zone out in these episodes, and work in a task oriented mode like it was a movie I was watching. I answered the pharmacists questions, and discussed the medicines measurements with her. Once we got Jude's medicines I was walking slowly along with Mike and Em, and I guess I spaced out. I asked them if we should grab some pizza here or at home. Mike looked at me and said that whatever would be easiest for me would be the best thing to do. I am not sure what happened next, but everything was spinning and I was blank. Mike grabbed my hand and asked me what was wrong. I quietly said "come on baby don't quit on me now". I burst into tears and I just said I don't know. He said "we are almost home" I just replied in tears "I wanna go home please take me home", and away we went. We then ran in the cold with the wind hitting our faces back into the truck to head home. I realized picking up those horrible medications for my little son just broke my heart. It was reality........it was placing my hands on what was holding his fate. I would kill anyone that intentionally tried to kill me child, but I cannot kill this!
So we finally got home........a very messy unkempt home but still home. We ordered pizza, I tried to call a few family members, and Em cleaned up from the tornado that hit her room. Then Jude was hungry. While eating he began to seize for the first time since early this morning. The med dose was just 20 mins away so the meds from this morning were just wearing off. Emily walked in the room and kind of laughed at Judes position. I realized that she thought Jude was playing with me, and I quietly explained that this is what his seizures look like.....and they got worse. Her little face dropped and all I wanted to do was hold her tight, but I had Jude in my arms. I felt clutched in a tight vice grip and I could not move. She formed tears in her eyes each time she saw his tiny back arch. I explain in a soft tone that they were not hurting him that he was simply aggravated because he didn't understand why it was happening. After 15 mins we knew this seizure was lasting to long, and he needed intervention. Luckily they finally began to stop, and it was time for his phenobarb. Unfortunately, Jude began to aspirate on his last dose, and choked uncontrolably. Our first night home resulted in a 911 call!!! By the time they got here ........ he was luckily ok. They were SO nice but we are in a fort worth annex, and it took them probably 15 mins. Luckily we had listened to the 911 operator, and turned jude on his side, did not beat on his back and counted his breaths. Two hours later Jude is still coughing, but the fact he will cough is good. I was told today they can choke on their own saliva. Emily cried, screamed, and acted like a little adult too. She would watch, and run, and we had long talks tonight. My heart aches for the tiny limp baby I held in my arms, and for my big baby who had tears for her brother. I texted Emmys dad and told him that there is a real possibility something could happen to Jude and to be prepared for Em. He texted the nicest msg back. I also emailed her teacher asking him to enroll her in the school counseling sessions, and will check into support groups for her. I cried tonight and I do mean CRIED! I held him in my arms so tight afterwards. He is SO BEAUTIFUL! He has big chubby cheeks, with perfect pink full lips, he has the longest eyelashes, and curly brown hair. He is a heart breaker. . yet he may never run, jump, play, or know what his house is, what a dog is, or he may never know what a Christmas tree is, but By GOD he will know he has a mommy that loves him with all her heart!!!!!!!!!!! We found out today that Jude does not have infantile spasms which we thought was great. Until we found out his has tonic clonic seizures grand mal seizures which in my understanding are the worst. Jude has been classified as a "severe" case, and in the doctors mind will not make it. I pray he will. I cannot watch Mike throw up much more. I am not sure I can do this either, but I am trying. I wish I knew why. I wish I had answers. I wish someone would explain to me how I could have the childhood I had, and now this! Please tell me. I must have been horrible in my past life. It's such a different feeling to give your child tylenol for a cold, and phenobarb to prolong his life. I have such random scattered thoughts. I better get off this blog so I can gather myself and be more positive. As stated from the beginning though I will always be honest on here.

Is it Tuesday? What day is it?

Well I woke up this morning feeling 100% drained. Jude had another seizure so they gave him more Klonnopin and he went to sleep. So I crawled back on to our lovely purple bed we have here and I fell asleep so hard that when I woke up an hour later it felt like six hours later. This morning the case manager came in and we received education in seizure emergencies. We also discussed his medicine therapy, and then Mike and I asked a lot of questions. My understanding is the more therapy we get him in the better chances he has. We can also work with him at home with pictures, colors, and toys. I would like to get him enrolled in the Gymboree play therapy because all the bright colors should be great for him. One good thing is when they gave him his phenabarb this morning he took it nicely. We did not have the incident this morning we had last night where I had to leave the room in hysterics. Jude also stayed awake for awhile after they gave him the meds and he played with me. Mike turned on his "Hey Jude" song and Jude got very quiet and looked towards the source of the song......he knows. He smiled at me, and coo'd in response to me talking to him. So we haven't lost the smile we love so much! We are more accepting that this isn't our fault, and just happens sometimes. We just love him very much! Sarah at my work was just so nice yesterday and said if I try to come back to work Wed she is locking the door and not letting me in..ha. My boss also called me yesterday and was SO nice. I feel like the poor guy has been through heck and back too because of all my medical emergencies. He said he was so incredibly sorry and just didn't have words. He told me to take my time and keep him update. I would love to be at home with Jude, but the realistic side is I have to bring in money and I am the one that holds our health insurance. So luckily Mike is at home right now for awhile, and we hope we can get his company off the ground so he can stay there. I will update you guys once Dr Roberts come in. Right now Jude is asleep on our purple bed with Mike playing more music to him. It's pretty cute.
Also we have tracked Jude's seizures and they seem to be pretty isolated to when he wakes up or eats. We make sure we time them each time because anything over 5 mins can be damaging. Problem is all his are over 5 mins so we are praying the phenobarb works. Sometimes it takes several tries to get the meds right, but we are going to believe this will work.

Thank you Luane for the writing, and to all our friends and family.

Mike and I finally left the hospital to shower and retrieve more clothes tonight. In the car I felt more calmer, and began to speak. Mike looked at me and smiled, and then said "thats the fastest I have ever seen anyone complete the 5 steps of mourning". Not that they are complete by any means, but I think my rage turned to acceptance because of what we have been through. I feel for mothers who have no clue that anything is wrong until the seizures start, and are then given this horrible diagnosis. In fact, he said this is more common than you think afflicting 1 in every 8000 children. Mike and I discussed the fact that Jude is our baby and we love him no matter what. That we will give him the best possible life we can. If we are dirt poor from this than we just are, but we will have our love. If he passes early we will understand this was Gods will so Jude would not suffer. We then discussed ourselves, and how this situation could affect our marriage and how similar circumstances affected those in my family when my mother passed. We vowed to each other that we would always make time for each other, and be there to lean on each other. We came back to the hospital still in tears, worn out, clean, but calmer. While out Jude seized through his new meds so they gave him more Klonoppin (sp?). I will update on that when we can. Also, a huge thank you to all those who have sent wonderful messages, and prayers. We feel so blessed to have such wonderful friends, and family. I am in awe at all the people that have been here non stop,rushing to get Em, all the calls, and more. I am afraid my facebook, and myspace only work at home and not at the hospital so I will have to email you from there once home. I can see your messages you leave though through my email. God bless everyone, and thank you!

My friend Luane posted this on comments, and this sums up how our life will be, but how thankful we feel to have this beautiful baby in our arms tonight. I cried while reading it to Mike.

WELCOME TO HOLLAND
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It’s like this: When you are going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo’s “David.” The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, “Welcome to Holland.” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plans. They’ve landed in Holland, and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there awhile and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Our diagnoses

I am sitting here staring at the screen but I am not sure what to write. I am not sure where to start or even all the terminology to use. I am currently watching Mike standing over Jude crying and telling him he is sorry. Jude had his MRI today, and was such a big boy he didn't even require sedation. He actually slept right through it. Later in the afternoon the doctor came in and we knew we he had a team behind him it wasn't good news. He said that it isn't just that Jude is missing his corpus callosum, or that his brain didn't fuse, or that he has a pocket of fluid in the back, or that his brain is a little smooth.......it's all of them. He gave us little hope. He said that Jude would probably never be normal and probably wouldn't live through early childhood. It was scary, horrible, and I just wanted to run away. I wanted to scoop him up, find Emily, and run home. I bawled, screamed, and cursed the prayers that haven't worked. I for the first time probably in my life lost it ... I hated everyone and everything...except my kids. I stayed in the room alone with the baby for awhile and made everyone wait outside while I held him. I cannot go into to much detail but I am just to tired. I can tell you that later on while walking through the hospital crying Mike ran into our neurosurgeon Dr Roberts. He asked why Mike was crying and he gave him the horrible diagnoses the neurologist gave us. He said not to give up hope yet. That he has worked in this field for a long time and sees a lot of unexplained things. He also said the fact he has the cognitive abilities he has is a good sign. So he is coming to see Jude and review the MRI tomorrow. Granted I highly doubt he thinks he will ever have a chance of being normal either BUT he may not think this is lethal. I just kept telling Mike I wanted my life to be normal again....it never will be! They just gave Jude his first dose of anti seizure medication which knock him out. He hated it so bad that he choked terribly several times. This last time was so bad that I felt I was going to pass out and I had to leave them room. I wish I had better news. I wish I had happy thoughts to share but I don't. I wish I knew what to do or what the future holds.

Judes update

First off let me admit that I am extremely exhausted right now, and my thoughts are not all together there neither is my typing. It has been a very long day filled with a lot of information, and a lot of tests. This is the day Mike and I hoped would never happen, but are finding ways to deal since it has. When we arrived at cooks they have a triage nurse stationed in the lobby to greet you when you come in. You can tell that they evaluate you on the spot to see if your case warrants immediate attention, or if you can wait hours with the others. The waiting room itself is filled to the brim so I am sure that's why they have this procedure in place. Jude was having a small seizure when we came in, and therefore we were immediately taken back. I was so impressed with the level of courtesy, and intensity applied to our case. The nurses and doctors were all so kind, and so attentive. We explained what had been happening to Jude, and the entire case history, and showed the medical staff the video. They commended us for video taping the episodes by saying it's the absolute best thing that could have helped them. So if you are searching for help because you are dealing with a situation like this and have found my blog, PLEASE VIDEO TAPE anything you find suspicious. Anyway, they paged the neurologist who looked at our prior films on file here. He then advised the ER doctor to get a CT asap. Right before we did the CT Jude started seizing. The good news is that his stats stay pretty level for the most part. His oxygen does drop a little but not to bad so they did go ahead and give him a tiny mask. Um Jude HATED the mask and got very angry so they found him a pacifier mask so while he sucks on the paci it administers Oxygen! (genius) They then performed the CT, and he fell asleep while being cradled in the snuggly bed they made him. We were informed they would be checking Jude into the hospital for a 24 hour video taped EEG. When the neuro came to vist us he explained that this could be 1 of two things. It was either acid reflux causing a reaction that looked like seizure or Infantile spasms which are basically baby seizures and can be devastating. He said the CT showed the enlarged brain vents which we knew about, and a bit of brain atrophy. We knew there could be some brain atrophy or "thinning" . The neurologist said the CT won't show as much as the MRI, but the atrophy didn't look to significant. In other words it would be possible for him to have a normal life. The doctor did not beat around the bush and said he was hoping for the reflux because the spasms are not good. They require a lot of drugs, and if not stopped could even be lethal. Unfortunately, later that night Jude had a large episode which registered very clearly as a seizure. So we have to have 24 hours on the EEG to officially diagnose them. Tomorrow he will get a sedated MRI where I know they will tell us more bad news. The Dr did give me hope though and said it kind of like a beat up TV that you find. You could plug it in and it still may work and be the best TV you ever had. Then you could have a perfect wonderful HDTV that has no issue that suddenly doesn't work at all. In other words you just never can tell what the brain will do. He said the good thing is Jude sucks, sleeps, rolls, coos, and smiles which are all positives. The charge nurse then explained that the medication they will most likely put him on will have to be injected every night. She said once they administer it he will be here about a week for observation. I asked her many questions, several of which she could not answer but she was sweet and tried. I asked her what people do when they have a situation like this and have to work. She then said well on top of work that she had to sadly admit the medication costs thousands of dollars for just a few doses. I told her I have good insurance, but she shook her head and looked down. I sighed and teared up. I told her I have some money, but not much because all this has pretty much financially devastated us. She said not to worry that there is assistance. She explained that there is also assistance with helping Mike to keep the baby at home, even a nurse that can come stay, and physical therapy. The physical therapy is so encouraging because if we start that early Jude has a real shot (I think!). The nurse said we will probably be overwhelmed with info tomorrow because it will be a full day of education regarding his needs, and diagnoses. I forgot to mention that earlier when Jude seized it lasted awhile so they administered Klonnopin to him so the seizure would not cause additional brain damage. He is very calm now, and even though he experienced another one it didn't last long at all.
So after poking and prodding Jude he is laying in his tiny little hospital bed tonight with bars like a cage. I am watching my pretty little son with a head full of glued electrodes all wrapped in gauze like he had a serious head injury. There is a purple belt wrapped around his tummy monitoring his respiration. He also has his right arm wrapped up because they inserted an IV just in case they needed to administer emergency meds. He has band aids on his left arm from the blood they have taken, ID bracelets on both his ankles, and more wires than I have ever seen hooked up to things I cannot even name. My tears have for the most part been controlled as I feel like my whole body has shut down completely. I cannot really feel, taste, or sleep right now because I finally feel completely broken. I am no longer that strong, but maybe it's just acceptance of what is to come. I held him close for hours before I laid him in that bed, and gently whisper to him how much I love him. I told him that I will hold him until I am an old grey woman and I or his daddy will always watch after him. I asked him to forgive me if I made the wrong decision in having him because he has truly has brought me joy. I apologized to him in a soft tone that mommy has to go to work later this week, but I explained we need the money to live. I also assured him that his daddy will always be here when I am not. I then adjusted his tiny little strap holding his gauze on, and then I saw a little smile come across his face and with that remembered how beautiful he truly is. I have two beautiful children.
Thanks for the prayers and good night. They say where two are gathered and ask for the same thing God listens. I hope that's true.

On our way to Cooks

Jude's spasms have increased in frequency, but decreased in duration. He is also combining his mouth opening with the spasm so we now know that is not just a normal baby movement. I called the neuro and told him what was going on and we have been instructed to head to the ER. I will keep you updated.

and the roller coaster starts again

Whenever I got home Mike had the video tape ready of Jude, and his episodes today. For the first time in awhile I felt the bottom drop out of my stomach like I had just gone over the tallest hill of a roller coaster. On the way down the hill I watched the video in silence, and kept myself from vomiting. I then scooped Jude up while he was having yet another episode and turned to Mike. I calmly said I would like to take him to my cousins to get her opinion, and then discuss our options. She agreed this was not normal baby behavior. I knew we could take him to the Cooks ER tonight, but I also knew there wasn't much they could do. We could wait until his MRI on Tuesday but then the questions raced in my brain wondering if any permanent damage could be caused by our delay. His episodes are not as severe as last night, but still disturbing. It seems to me like you can track when an episode is starting. His eyes get a little glazed look, his mouth opens, and then suddenly his head falls. He can be in the middle of a cry, sucking his paci, or anything when it strikes his face goes blank, the stare engages, and his head drops. I have tried to control my fear, anger, and sadness by being strong. Yet tonight I watched a little episode, and the tears started falling then the familiar ache in my chest returned. I was trying to hold back the tears which makes my stomach and my heart hurt even more. I cannot help but look at Jude and truly believe with all my being that he has a purpose in this life. Jude will create hope where there is none!!! Maybe it's through his story, his life, or his inspiration. Maybe he will grow up normal and become a great man of importance, or maybe he will be disabled and still be as important. I read a story tonight on a little girl born blind. Not just blind but without optic nerves! She cannot see at all.........yet when you hold a crayon, highlighter, or such up to her face she can tell you the color. She can also tell you what's bothering someone, and spreads cheer to anyone that talks to her. Songs she has never heard before somehow spill out of her mouth in full chorus to strangers who need to hear them. I hope to have a usb cord for my camera soon and upload Jude's epsiodes. Why would I share this you ask, because it might help someone else. Maybe that's Jude's wish.
The tiniest prophets speak the greatest words, and maybe Jude will speak in his own manner. Until then I am going to bathe my sorrows in a hot bath, and a glass of wine. Thanks to everyone for your prayers, thoughts, and hope.

**** update ****

Well it's been a crazy morning. The pediatrician was calling the neurosurgeon because I couldn't get a hold of them. Then the pediatrician was calling me to tell us to go to the hospital because the neuro was not calling him back...sigh. Anyway, I finally heard from Cooks. They moved Jude's MRI up to 12/9 Tuesday at 6:30pm. Luckily they don't have to put him to sleep like they said they would. They simply said bring him tired and hungry. Anyway, the bad part is we won't receive the results until 12/17 or 12/19. Even then the results may be the same results we have received since I was 18 wks pregnant...."we don't know what the results from Jude will be". Anyway, so I informed my boss I may be out a little. I am not sure he was thrilled, but he understood. Mike said he has observed Jude pulling his head to his chest several times today and recorded it. I just hope Jude can live a normal life. I don't want him dealing with major developmental delays.

Jude had a seizure

Jude had a seizure last night. I say that with reluctance and my head is still spinning a little. For the first time I saw the benefit of knowing ahead of time that Jude could potentially have an issue. If I had been not been educated and known what he was doing I would have panicked, and probably called the hospital or rushed him to one.
Mike had called me several times yesterday letting me know that he wasn't able to get anything done yesterday because Jude just wanted to be held. He said he wasn't really fussy UNLESS you laid him down but did want to be held a particular way. I guess Jude felt a little off all day and was trying to communicate that in his own baby way. So I got home and relieved Mike by taking Jude and feeding him, changing him, bathing him, and playing with him. I then laid him in his bassinet but I heard him kind of choking on his saliva. So I went and picked him up and he started doing this strange head bob in my arms. So I laid him down on his blanket and suddenly both his arms went straight to his side, his head pushed down into his chest, and his eyes rolled back and to the right. He tried to cry in between these movements that would last a few seconds and release. Emily walked into the room and saw him then exclaimed "WHAT'S WRONG WITH HIM MOM??" I explained that I thought he was having a seizure and to hand me my phone. She wanted to call 911 but I explained we simply needed to call Mike. Mike had ran to the store to get some milk and by his friends salon. He came in the door right when Jude was calming down so he missed the big part but he did get to see his head bobs. Mike burst into tears when he saw Jude which made me finally start crying. We held Jude for a long time and he seemed tired but ok. I didn't rush him anywhere, because I knew there wasn't anything they could do for a seizure. I asked Mike to get out the video camera in case they started again and to have it ready for today too. The best thing would be to document them so I could provide proof to the neurologist. This morning I put a call into the neurocenter and to his pediatrician. The pedi called me back immediately and said I acted 100% correct and that if I don't hear back from the neuro by 11 they will call him. So basically I am waiting to hear from them. My guess is they will want to see him, and admit him for the MRI now.... but that's just a guess. Mike is devastated because I think he had convinced himself that Jude was fine. So he now has to work with accepting that Jude has an issue. I reminded him last night that Jude's functions are still running ahead of schedule. So again he would be very normal, and if the occasional seizure is an issue we can all deal with that. Our main concern is wanting to make sure the seizures don't kill additional brain tissue and undo what he has already learned. Mike also felt bad that he didn't have the patience he should have with him yesterday. I explained that guilt is an emotion you learn well with parenting and it won't be the first time he dealt with it. I told him he is a good dad, and to just remember from now on that Jude may need a little more patience than other kids. As of today Jude seems ok. He is doing something with his mouth which the neuro will have to look at and see if it's normal behavior or not. Anyway, a few little prayers will be nice from everyone. I think he will be fine.

Pictures

Well my blog for the day is below but here are the pics I promised.

Jude and Daddy on Thanksgiving


I think I was tired.......or had a little wine


Our tree that kitty won't stay out of


Jude's stocking hangs with Em's for the first time

Secret Millionaire

So Jude and I watched that new show Secret Millionaire last night....I bawled (Em was asleep but she is going to watch it tonight)! If you have a chance I highly recommend watching it. The premise is that they find a millionaire that is willing to go undercover into poverty for a week, and end up donating at least $100k of their own money to someone needy. It really makes you appreciate your life, and to see how easy one tragic moment can change your life. I partly understood how quickly your life can change from my car wreck. Literally in the blink of an eye my life changed, and it scared me. Anyway, it truly made me want to be a millionaire just so I can help people. There was one lady who had been homeless before and now that she has her feet a little on the ground she gets up at 4:30am just to go help other homeless people...why? Because someone got up at 4:30 for her.... WOW! I cannot even get up to go to church on Sundays. Well, it's a little more than that but still the point is she does so much when she has so little.
My reference above is because I have a huge problem with large conforming churches, and some of the people in them. It's been an issue of mine since I was younger because I always felt like the people were there for social status vs the true reason they should be there. That's my own hang up, and some people argue with me over it. Point is ever time I try and end up going I just cannot bring myself to continue going. It makes me rather ill when I look around at all the people that have lost the reason for being there, the gold inlaid altars, the money plates shoved in your face, etc etc. If I could find a nice little country church with singing, true friendships, and people instilled with the proper values for being there I would go in a heartbeat, and I know youth would benefit Em. No offense to anyone that goes there, but every time I pass the "white house" on 183 with the pastor lady that has the huge lavender hair I roll my eyes. That place is the epitome of what I am referring to. They have a show on TV and if you get a chance to watch it then I need to provide no further explanation because you will see.

So Mike went and worked last night at his friends salon until almost midnight. By the time he got home I was in tears, lonely, and curled up in bed. I tried to explain to him that I would prefer not to even get my hair done if it means he will be gone that late. It made me feel self conscience, and seeing how I still feel like a fat cow that's not good. I know he was truly helping him, and I know he loves me and would never hurt me, but I still hated it. Plus, since he has been watching Jude he is so ready for me to take him when I get home from work. Problem is I walk through the door from work and get handed the baby. Which I love......but I still have to cook, go to the restroom, etc. So I sat down with Jude last night, and held him then told everyone to fend for themselves on food. When Mike makes mention that he has had the baby all day I remind him I wake up early to give him his paci, etc and then work all day. I would hold the baby all day if I could, but I can't. He is a good dad though, and Jude loves being around him. Well I am off to work I will be really happy tomorrow when it's Friday. I like the weekends when my whole family is together.

Brushing off the information

Sometimes I wonder if my curiosity for the unknown feeds my nightmares of reality. I am a part of a board that I have mentioned that sends and receives many conversations regarding microcephaly. Some of the messages that come through send chills down my spine, but create a hands on education. On the other hand it only makes me want to learn more, and to find a way to help those afflicted with this issue. A mother tonight said her pregnancy went fine until her daughter was diagnosed with Ventriculomegaly (Jude's issue originally and what started all this). She mentioned she hated her diagnosing specialist so she found another specialist who told her all was fine and not to worry. The mother then said that whenever her daughter was born she looked perfect until they noticed she was not tracking objects with her eyes (which Jude does) so she consulted a specialist. It seems she was diagnosed with micro, and her diagnosis list has grown from there. She made reference to the fact that her eating is the "only normal milestone they have had". That makes me both breath a sigh of relief, cringe in terror, and harbor sympathy for those parents. She mentioned that her daughter had an MRI that showed 2 places on her daughters brain that showed CSF (cerebral spinal fluid) that took the place of damaged brain tissue from an in utero stroke. We already know that Jude has 1 place in his brain that the in utero MRI showed that the CSF filled in due to his in utero stroke. So I am always looking for issues that he may have, and here is someone not looking that has an issue. It amazes me and leaves me in awe. Is it better that I know and I have a fair warning or is it worse? You don't love your child any less. You don't offer them any less. She loves her child with all her heart, and I love mine too. So who knows the answer.
On another note (100% off the subject) I was thinking about Christmas and all the "stuff" we purchase and exchange. I have opted to get Salvation Army angels for a few people I know in lieu of a gift. When my grandmother was ill I had to disassemble her material possessions which was horrifying and eye opening. A normal paper towel holder, silverware, and other possessions she had to have when she was healthy become someone elses "responsibility" when she was sick. So are all these material things we want necessary? So no matter whether we are "green", "professional", or "whatever" we have a way of being able to accumulate to our surroundings. Whether we want to be "hippie", or keeping up with the Jones'es we still conform. I guess we don't have to have them, but ..... it's nice to have them. Point is I guess we just have be ourselves, and end up leaving things that are special to us to other people special in our hearts. Because even though I sorted through my grandmothers stuff for hours a few of her items ... like the Kleenex box with hot pink hair I knew she had to have truly made me smile

Have a good night!

Another day Another dollar!

Well yesterday was so insane at work that I went home and felt brain dead. I dealt with an upset tummy half the night from the stress, but in the end everything was fine. It's much slower today so I have had some time to complete some other tasks I needed to get done. Now I am at lunch with the door shut, and I get to blog. I am a lion in my cage so no one better distrub me. I love my job, but when Sarah is out it can be hard. My boss always tries to help though when one of us is alone. He is a nice guy.
So Mike is at home with the baby today. His job in Stephenville is on hold until the trim/cabinet workers complete their installation. Then Mike's crew will come back and paint everything they install. Therefore, he is completing other estimates and getting his crew on other jobs if possible. This takes a day or so to sort out because he has to get everything completed and then get people situated. I am very proud of him so far! He is really trying, and since he is such a perfectionist he really gets his guys to do an amazing job. He was telling me last night that he feels like his estimates may come in a bit high, but he hates doing the job wrong. For instance he was quoting one customer who wanted his chimney painted. The problem is he had rotted wood, etc so that needed to be replaced. He said a lot of people will just throw the paint on to get paid, but that isn't the proper way to do it. So I told him to just give them both options and let them decide.
Now the good news on Jude. Mike put Jude in his crib this morning, and set his play mat to sing only if it's hit. He has a farmyard play mat that sings, talks, etc in his crib. Well Mike started hearing it go off so he snuck up to the crib, and noticed Jude kept hitting it when it stopped singing. In other words he remembered if he hit the mat in some form or fashion it would play music again. That's brain function and that's AWESOME!!!! I help him sitting up last night so we could really work with him on holding his head up. He is having some troubles with it still falling forward or backward but he is getting better. He also can hear your voice, but it takes him about 30 seconds to turn his head and focus where you are at. So in Dec they may tell us the MRI shows a major issue, but he is still making progress and that is positive.

Monday

I am wondering if anyone caught the license plate of the truck that plowed through my business today because I am pretty sure it was "bzyassht!" lol. Sarah is on vacation so I am the only one here. My boss and the receptionist are in, sooo again I am the only one here ;). Although my little receptionist is so cute, and she helps me the best she can. My boss always helps too, and he knows we get stressed when it's busy. So we had a very busy weekend, and holiday. Emily left for her dads on Thursday morning which was unusual to me. She is normally with me for the majority of each holiday, but this year was a little different. Honestly, it was time she spent a holiday with her dad so I gave a little, and asked him if he wanted her. Since she was going to be gone we put our Christmas tree up Wed night because it's a tradition to put it up the day AFTER Thanksgiving. Since she wouldn't be there I felt it was important to put it up before she left. She had a great time getting all the ornaments out, and even helped Jude put his First Christmas ornament up. So anyway Em got the tree up and the kitty took the tree down........anyone want a cat? No really.......want a cat? So after we got the tree up my aunt called yesterday and said "you have your tree up don't you". I answered yes, and she told me I was way to "Martha" and she has no idea how I keep up with everything. That's just me and I guess I will just be a little Martha, but I prefer to be compared to someone cuter..ha!
I truly enjoyed spending my weekend with Jude. We slept in together, I held him a lot, and he opened up and responded so much. He is starting to babble at me whenever I am talking to him, and it's pretty cute. We even took a bath yesterday together and he had the best time......well until his head got tired and he went face first in the water. Besides that one incident he loved the warmth, and splashing around. Mike came in and lifted him out of the bath when he was clean, and he was MAD! He wanted back in the water, and let Mike know it. While we were in the bath I took my time to really wash Jude's hair, and since I laid him back in the water it all laid perfectly straight. I really got to see the size of Jude's head, and I can admit it is small. I keep telling myself though that it is so good he is meeting all his milestones. I look at him and just love him so much! I want him to have the opportunities of playing ball, running, jumping, etc. We got him a bumbo, but I am afraid he isn't strong enough to sit in it yet. I really think with some work he will be ok inside of it. He is eating much better now though, and is his smiley happy self again. The other day I felt a bit worried that if he was changing that I may not see my normal Juders anymore. I hate hate that I have these worries stuck in my head, and it's SOOOOOO easy for people to say not to think about it. Until you are in my position you don't know what it's like! I am positive and have full faith in Jude, but I am also a realist. I watch for any signs and I make sure I stay aware of the situation. It's like the old story about the man on Mt St Helens. He decided he was going to stay on the mountain and put his faith in God. So a fire truck came by, then the police, then a rescue helicopter to help him but he refused them and ended up dying. Once he got to heaven he asked God "Why did you fail me? Why did you not save me". God replied "I tried 3 times I sent a fire truck, a police car, and even a helicopter!"
So Thanksgiving was nice. We went to my dads house, and his wife Kay said a wonderful prayer where she started crying about Jude. I missed those of my relatives that were away in different states or on vacation, and I missed those that have passed. It was nice though, and I am truly thankful for everything and everyone in my life. I have a lot of pics, but I left the camera at home and will have to post them later.
Also, Mike was able to get at truck this weekend!! WE ARE SO THRILLED. It looks like things are finally looking up for us. He has been driving this run down 92 Prelude that had everything stolen out of it. Since he is starting this painting company that car was no longer an option. So my cousins dad helped us find a great deal on a used truck. He can now take the baby with him, and that relieves so much pressure from me in the mornings. We also thought of a name for the painting company and applied for it today. So it will be Bristles ~ painting and fencing. We are working on the website, cards, and more but I just pray this all takes off. The next bill to tackle is the IRS. I think we need to tackle them before they tackle us. It's hard to make the government understand your financial and medical situation. They are more understanding than I would have imagined though. I guess everyone is having a rough time so they are a little more lenient.I know I have more to blog about, but my mind is running so fast because work is so busy!
I will blog more later.

Ps. I was looking at Entertainment weekly last night, and there are so many stars I don't recognize now. Plus they all look about 12 years old! Am I just getting really old or something? I mean come on. I look at the style watch pages or something else and see some chick I have NEVER seen before! Oh and does anyone even care about that crazy Heidi and Spencer couple? I am so sick of seeing their pics? They really make me want to see my thanksgiving turkey again. I read they got married I wonder if we can convince them to leave us alone now.