Saturday, January 31, 2009

So cute

Jude SMILED this morning!!! I was so excited that I finally got to see his grins again, and they were BIG grins. He was smiling at me, and then when Emily came and climbed in the bed he kept smiling at her. I was so excited I just laughed and laughed watching him. He has been so good today, and I am now glad we took him off the Klonnopin.

Have a great weekend you guys because I know my weekend has already been made!

Friday, January 30, 2009

and it all comes together

I would start this post by saying that I have had a day where everything makes sense, but that would be a lie. Therefore, I will say I have had a day where everything came together. None of this will ever make sense to me. If I were a hardened murdering criminal, or a cocaine fiend without a care for her children than maybe I would understand why this happened. Although, today I took everything the neurologist said, and did my own research. It was long and tedious, but I feel so much better understanding...truly understanding Jude's issues. The information I read brought everything the medical specialists have told me together in a bundle I finally understood. I am one of those people that have a need to educate myself on reasonings behind a situation like this. It may not help......and then again it may which I will get to later in the blog. So at this past doctor visit I told you that the neurologist acknowledged that Jude has "Bilateral Closed Lip Schizencephaly". Which we were told before, but I guess I truly didn't understand that this is Jude's primary diagnosis. If you are now rushing off to research this term I wouldn't caution you not to, because it's rather grim on some sites. Here is your definition "Schizencephaly is a congenital defect due to an abnormal development of the fetal brain. Schizencephaly is certainly an uncommon disorder of neuronal migrational characterized by a cerebrum-spinal fluid-filled cleft, lined by gray matter" So my understanding now is that somewhere probably between weeks 12-16 Jude had a bilateral stroke. They know this because they can see the old blood in his brain. The stroke then caused a neuronal migration disorder which basically in la mans terms means Jude's neurons and brain cells didn't go the right direction. Therefore Jude's brain did not form correctly and thus the Schizencephaly.

I also found out Schizencephaly can present with the following issues:
Gray-matter heterotopia: are collections of gray matter in abnormal brain locations.
Polymicrogyria {Jude possibly has}
Arachnoid cyst {Jude Has}
Microcephaly {Jude Has}
Some individuals affected by schizencephaly, may have an excessive accumulation of cebrebrospinal fluid in the brain and caused ventriculomegaly and the hydrocephaly with macrocrania. {Jude has ventricumgegaly}
Absent of the corpus callosus {Jude's is very thin}
The septum pellucidum is absent in 80 % of the patients and may coexist with septo-optic dysplasia.


So it's like I looked at what happened in a vicious circle. Jude had a stroke, the stroke caused the migration disorder, the migration disorder caused the Schizencephaly, which in turn caused the other issues....whew! So I did contact the doctor today asking why if Jude had these "clefts" he could see, eat, hear, swallow, cry, smile, roll, etc. The doctor said because Jude doesn't have a cleft he just has lines. So it sounds to me like he does has bilateral schizencephaly, but without the clefts it's just lines which he said can be better.

So what is the prognosis you ask? Well in medical terms it's the following,
"Children with unilateral clefts have often hemiparesis, but may also have mild-to-moderate developmental delay. Severity is related to the extent of cortex involved in the defect.
Children with bilateral cleft are tetra paretic with severe mental deficits. They have frequently developmental delay, delay speech, abnormal language skills and corticospinal dysfunction. Netherless the degree of malformation is not related to the severity of epilepsy. Individuals with bilateral schizencephaly may also have microcephaly, associated with mental retardation and partial or complex paralysis, poor muscle tone and spastic quadriparesis. They present with early onset of epilepsy, sever motor delay and abnormality, and frequently blindness, deafness (one third of patients). Sometimes they can have some problems with brain-spinal cord communication.
The prognosis of schizencephaly is catastrophic, but depends essentially on the size of the clefts and the extent of neurological disabilities and the presence of associated lesions. Usually, complications such as chronic and acute infections, failure to thrive and respiratory problems, can be the cause of the death of the affected person. Usually patient with open-lip schizencephaly die at an earlier age than patient with the closed lip form. Sometimes, closed-lip schizencephaly may not present clinically until later during the childhood and may live to early adulthood
. " So this explains why the dr was so grim, but still had a little hope. It's like it all CLICKED in my head today because with my research, asking questions, and the doctors help I had it all layed out in front of me.


I had mentioned before that my research led me to believe I needed some blood work done, and the doctor also suggested this would be best. Well it does turn out I have an underlying blood disease........UGH! So that very well could be the cause of what happened to Jude. I don't know what is is yet, but I was told over the phone my platelets are "lazy to clot". So we know it's a clotting disorder which we know can cause strokes. I have to get further testing but I was told they are thinking it may be Glanzmans Thrombasthania, Bernard Souliers Disease, or Von Willebrands disease. They said they are leaning towards the first two which are rather rare and genetic. I don't think there are any serious issues with the problem because I can clot, and have had no issues before. It does make sense though because I have ALWAYS bruised easily, had gums that bleed, bled a lot after birth, etc. They don't have the factor V test back yet, but they will by the time I go see them on the 4th. So I will keep you updated on everything. I know it all sounds so confusing, but for the first time in a long time it all ties together, and just makes a complete connection for me. Once I find out what the underlying blood issue is I will have to have Emily tested. She has frequent bloody noses so I am concerned she might have it as well. I know she will be less than thrilled to get tested...ugh!

On a good note Jude and Mike came by to see my today, and Jude was alert. He even looked like he wanted to smile at me, but couldn't quite get that little grin to show. Well I hope I have not overwhelmed you. Please have a great and safe weekend.

Thursday, January 29, 2009

Thursday

What I wouldn't pay for this to be Friday. Anyway, I am alone at work today so I am just going to post a few quick photo's and a quick update. Jude did have another seizure this morning about 5am so it seems he is picking up the schedule he had before. I am hoping that the new increase in topamax will help control these additional break throughs. I just wonder how much we can go up on the medication before we will have to switch again.

So we all know that it was very cold yesterday in the great state of Texas! Mike has his head shaved right now so he was wearing a hat to keep himself warm. Well I decided to put Jude's hat on too so they were twins. Here are some pics.

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And Em ........ she was suppose to be asleep!

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Wednesday, January 28, 2009

Wed night

So tonight I had an old friend over, and I am so glad I did. I can only assume that when you experience a situation like ours you learn that materialistic items don't matter. I can also assume that ridiculous arguments, and distance between old friends don't matter either because it just doesn't to us anymore. We realize life if full of so much more than bitterness, and other mindless issues. I was so glad I had the opportunity to sit and talk with someone I cared and care so much for. I know she did this in confidence, but while here she handed me a very generous gift. I did not know what to say, but she knew exactly what needed to be said which was "if you don't accept it then that would just be wrong, and you just have to.". She understood the small and large ramifications of having a situation like this strike your family. It isn't the large bills that hit you it's the small everyday items that you are used to that are sometimes are very missed. Anyway, thanks for your companionship, friendship, and thoughtfulness.. When my friend was holding Jude I saw his eyes flicker a little, but I thought he was okay. I am afraid when she left he went into a full seizure. I was glad he waited, but sad he had to experience yet another issue. I sometimes think that when I watch his yells, and crying that the doctor has no idea what he is talking about because these seizures do seem to hurt Jude!!! While in the doctors office today he mentioned taking him off the klonnopin unless he has "multiple cluster seizures". We said "Well that is all he has" in a disgusted manner because we knew the doctor didn't remember. He then clarified he meant more than 1 cluster event at a time, but I think he just didn't remember!!! Which makes me wonder if the doctors know what hurt our children, and what do not.
So a mom had posted wondering what Jude's screaming sounded like. I appreciate her post, and truly relate so I will explain. He will clinch his fists, his arms bow in together making a V, his back arches forward, his left eye goes high left, his right eye goes to the right, and he sends out a yelp like he is being hurt. Once that finally subsides Jude will get a break in between "crunches" and cry like he is wanting to be picked up, but I am holding him in my arms already. Once the seizure if complete Jude is exhausted and falls fast asleep. We are thankful though that these episodes are contained to about 2 a day. So in my writings, doctor appointments, and readings I have truly learned that doctors give us a true hypothesis....an educated guess. That is what medicine is.......an educated guess, based on statistical information. I chose not to make Jude another statistic. I want him to help others, but not in a number format, but in a human format. I want to provide the emotional side to medical research. I want others to be able to emotionally relate to what he is going through because I believe that's when true results, and research is completed. Regardless of his outcome Jude breaths, eats, moves, and loves so he will always be more than just a number. Good night!
Ps ~ Thank you to the amazing moms that read this blog, and leave me such wonderful comments or email. You always make my day!

Neuro appt!

Well we had our first appointment with the neurologist since Jude's hospital stay. The neurologist was nice, but his bedside manner can use some work. I say that with the understanding that he has a very thick accent, and is "medical". From what I hear though he is one of the best around so I was still pleased. Jude's BP was good, weight was good, His head grew about 2cm since December, his fontanel felt good, and he is 27 inches long. The doctor decided to have us hold off on the Klonnopin, and up his topamax. He is now referring to the topamax as a "reasonable amount" vs a "small amount". He seemed encouraged that Jude's seizures are down to two a day, and we are hoping to cut them even further. I told the doctor that Jude rolled over once, and even smiled again the other day. His answer is always a dry "good good", and then he continues reading his notes. I sometimes get the feeling that he believes that due to Jude's issues he just "is". Does that make sense? He is what he is, and he doesn't expect much. I am sure that is not the case, but that is how I feel. We then talked about the fact I had a complete blood profile done last week, and the Dr did perk up at that information. He said he thought it could be beneficial. I also told him that I found out I have several relatives with the factor v leiden issue. He did acknowledge right away that can cause issues in pregnancy with the fetus. On the other hand though he also acknowledges that it really doesn't matter what caused this issue because it's already here. Then he said he understands that we would want to make sure it was nothing genetic, or nothing that would cause an additional stroke in Jude or I. Another consideration is if I do have that issue Emily may as well, and she needs to know for her future.. We then talked about the brain bleed or stroke. The doctor said normally if there is a genetic problem like the factor issue he doesn't see a bilateral stroke or bleed. I told him I knew several women on my boards that had the deficiency and had children with bilateral strokes.......but I am not sure he heard me. He said Jude has a bunch of "little problems throughout the brain which signifies a migration problem". I then asked him if the "migration problem" was caused by the stroke itself because that was my initial understanding. He said he "is not sure if the bleed caused the migration problem, or the migration problem caused the bleed". So now I am VERY confused! I was told from the neurosurgeon and the MRI specialist that the stroke at a very young age caused the brain to not form correctly, and thus caused the issues. He still maintains there is just nothing that could have been done about any of this unless it turns out there was an underlying blood issue that I didn't know about. He did seem a bit concerned about Jude's problem with not going to the bathroom. Although he did acknowledge that he does not think his GI tract portion of his brain was affected in anyway. He said if it was eating, and emptying would have been a problem from the start. So therefore he thinks this is an issue with the medication, and wants us to talk to the pediatrician. He also seemed very happy that Jude is eating baby food so well. I told him that Jude seems to prefer the food over the formula sometimes, and without any hesitation he said, "then give it to him!"
Anyway, so I will stop rambling. So he sent us on our way with new prescriptions for the topamax, a prescription for therapy at cooks (that we asked for), an appointment with him 4 months from now, and more questions. HA HA HA! No, actually the appointment was good, but do you guys sometimes leave a little more confused each time you go into a doctor? He is a nice guy so don't get me wrong, and he is helping my child. I just get....frustrated.

Tuesday, January 27, 2009

Ice day

Well at 5:15 this morning I received a rotary call from Emily's school that NWISD was closed due to inclement weather. We had been up since 4 when Jude had a seizure so I was not surprised because we had been watching the news. I went into work until about 1:30, and then my boss let us go. We were all concerned that the impending ice conditions could make our drive home treacherous. Luckily my boss is pretty good about letting us go once we see that it is indeed going to ice. So I got to go home, and play with the kids for awhile which consisted of me coo'ing at Jude, and Em running out with friends. Yep, that's right mom was left in the dust again. She also said I am "Crazy" because I call things the wrong name like her friend Casen gets mixed up with Keegan, Addison with Madison, and Camera with phone. I told her to get used to it because that is a part of getting older. I told her my grandmother calls me every grandchild and daughters name before she finally gets to me. This sounds a bit like Candace, Caron, Docia, Sarah, Lawren, I mean JENNIFER.... there ya go! ;). I know anyone reading this has probably been in that situation. My ex husbands grandmother had so many grandchildren that she would just slap the closest one on the head and say "That's for that one over there acting up". She used to CRACK me up, such a funny lady! Anyway the point is I am getting older and get my words mixed up, misplace keys, and more.
So Em had a friend over earlier, and I was sitting on the couch holding Jude when I noticed he began twitching. His eyes began to roll a little, and I sent Emily upstairs to ask Mike when Jude had his last dose of Klonnopin. Turns out he could have another dose so I got the klonnopin in him, and he went into a full seizure. It was a violent one, and I felt sorry that Emily's friend experienced the seizure. She seemed very curious though, and did not seem disturbed. She explained to me that Emily had told her what the seizures were like, and that they do not hurt Jude. I assured her that was correct, and described each cluster as getting shocked from a cord you plug into the wall. That seemed to make perfect sense to her. Mike then ran her friend home, and on the way I called her mom to give her heads up regarding what happened. Her mother seemed very understanding, but I still feel bad that another child had to experience what happened. So Jude is currently sleeping soundly on the couch next to us. Em asked why Jude falls fast asleep after a seizure, and I reminded her that is equivalent to a very hard work out.
So it looks like our weather may prevent Em from going to school again tomorrow. I am hoping it clears though because Jude's big neuro appt is tomorrow at two.

I do have to take a second to reference something I read on Ellens blog today regading her son Max. She said she was looking back on how dismal things seemed when her son when he was little. It turns out he too was diagnosed with Microcephaly (casued from a stroke) which is basically a small head, and small brain. She made reference to the fact that Albert Einstein had a small head.......in note he also had ventricumegaly (sp?).. (I guess they kept his brain?!?!). She mentioned how she was always insistent at doctors appointments that they measure her sons head. Although now she focuses on the child, and not the diagnosis. GOOD FOR HER.... Ellen you are an inspiration. I too have decided that is the best route to go. Sometimes I cannot help having fears, and looking at all the documents the doctor gives us with little hope. Although, the other night we broke the tape measure for Jude's head.......on purpose. We KNOW his head will measure small, we KNOW he has issues, but we also know Jude is his own little purpose and has already proven so many doctors wrong! We believe in Jude, and not the papers.

Monday, January 26, 2009

Huge news

Well it's huge to us!!! It's crazy how something we normally take for granted becomes a huge milestone now. Jude SMILED AGAIN today several times, and giggled out loud for Mike. I am so excited about going home, and trying to get him to repeat this that I can hardly stand it!

This is huge for us because the one thing we kept clinging to was Jude's tiny smile. When the seizures and medication wiped this ability away we were so upset.

Thank you for believing in our little Jude. I hope he can keep his smile going.

Monday

Let's start this blog with saying I am exhausted today!

Jude and I went to bed about 11pm. Jude was a bit of a night owl last night, and once he had one last bottle he finally gave up and went to sleep. At around 12:30 I started dreaming that Jude was having a very loud seizure. It turned out that it wasn't a dream I was just somehow incorporating his sounds into what I was dreaming. So I woke up and flew out of bed to whisk Jude from his bassinet. Mike was still awake upstairs so he came running down as Jude's yells grew louder and louder. Once we administered his Klonnopin they started to slow down, and we finally got him back to sleep. We settled down into bed only to be woken up at 2 by Emily complaining of a headache, and running a slight fever. I really think this was just allergies, and she was under to many blankets. So I gave her some motrin, and again went back to sleep. I was then woken up again at 4 by Jude who decided he was hungry,restless, and was breathing a little funny. So Mike got up very frustrated and gave Jude a bottle. We then settled in again, and the dogs woke us up, then Em got up again, the Jude's breathing, then the cat was at the door, and well I finally called Sarah and said "I am going to be a little late". So I got Jude into the bassinet, Em on the bus (because she seemed better), the cat locked out of the room, and we fell asleep for an hour. I needed at least an hour to function properly at work.
So I guess Jude did technically make it with only 1 seizure yesterday, but it's that one that just kills us. He has a busy week in store for him, and I will let everyone know how therapy goes. I have been really worried about our little online friend Gage, but I found his caring bridge site and see he is doing better. I have been so wrapped up in our situation I had not discovered his site, and feel a little guilty for that. I need to get back to work.

Sunday, January 25, 2009

Sunday

Is it strange that I am both so thankful for a job to go to tomorrow, and at the same time dreading my normal Monday morning schedule?? I sometimes wish I could just hang out with Jude all day like I did on maternity leave. Regardless, like I said I am very thankful that I have an enjoyable good paying job. So Hi ho Hi ho its off to work I go :).

So I do have to say with sympathy that Sarah's friend passed away this afternoon. I am sorry for her friend, and her friends family. Its sad to lose a mother early in life, and I wish I had all the right words to make them feel better. Although I know from experience that words cannot help when someone you love passes, but assured her that I feel my mom around any time I need her. Sometimes I feel her around me just because I think she is wanting to hang out with us. Sarah said she would pass that message along, and I hope it helps in any capacity it can.

So this morning we added Emily to our bunch in the bed watching TV, and it was great. We all lay there hanging out, and not in a hurry for anything. Jude even cracked a bit of a smile when Mike was zipping up his jammies after a diaper change. We then realized in our slumber after his diaper change that Jude DID NOT WAKE UP at 4m with a seizure! Mike looked at me in anticipation and said "this could be the day babe....this could be our seizure free day". We went through the day, and it wasn't until about 4 that Jude did in fact suffer a loud violent seizure. We were sad, but on the other hand still felt like we had made progress. It is now 10pm, and Jude has still not had another one. So we are still thankful that we have only had 1 seizure today, and even got a a little smile that we have truly missed.

So I just got a jar of mixed nuts out of the pantry for a snack, and realized in horror that someone had eaten all the pecans out of the mix. I looked at Mike and told him of my findings, and all I received was a quick look to the left and a "I don't know who could have done such a thing". lol! He then fished the final pecan out of the very bottom of the jar, and brought it to me. I smiled. We are going through so much with Jude, and we have a long way to go an amazing family. I have one of those passionate happy marriages that you hear about and I am happy for that.

So on another note..........Mike ran into an old friend today. Mike used to own a company that went under after 9/11, and this friend worked with him. During his friends interim at the company he had a young child that was killed in a car wreck. Mike was devastated because he was so close to the boy and his family. His friend had another child so that gave them a reason to cling to to go on. It seems since that time they have added additions to their family. It just so happens one of their additions is a little girl that is suffering from Infantile spasms with no known cause. Luckily they have controlled them, but their daughter is delayed. It's so unfair after losing a child they would have to contend with the horrible issue of seizures. Although, it's so strange that after all this time someone Mike runs into someone he was so close to and they too are competing with 1 of the issues we are. Mike said he told his friend that he now truly believes God does give these children to certain people, and he is honored to be one of the chosen ones. Sometimes Mike says the most profound things and he make me so proud of him.

Tomorrow is Jude's first official ECI therapy day. I will let you know how that goes. I am tired and rambling so I am off to bed.

Saturday, January 24, 2009

Honest Scrap ~ and I am honest!

Thanks to Ellen from Love that Max blog for the "Honest Scrap" award. I'm flattered! The information says dig deep so let me try.

Here's what I'm supposed to do:A) List 10 honest things about yourself—and make them interesting, even if you have to dig deep! B) Pass the award on to 7 bloggers who you feel embody the spirit of the Honest Scrap and whose blogs you find brilliant in design or content.

So, first, 10 honest things about me.

1. My husband and I went to rival high schools and knew all the same people, but somehow did not meet until 3 years ago. It's almost like fate knew we needed to go through certain steps in our lives before we could truly appreciate each other.

2. My mother died when I was 7 from drinking. Most people would assume she had cirrosis but she had not been drinking long enough for that, she actually died from a severe allergic reaction to alcohol which is almost unheard of.

3. People think I am over #2, but I still cry sometimes at night because she isn't there for me during the most important times of my life. I also cling to my cousin because she is a great person, and she also reminds me of my mom, and I appreciate her honesty. My mom was honest, and always had a mind of her own.

4. I sometimes still wonder if I am to blame for Jude's issues because I didn't know I was pregnant right away, and one of the nights prior to knowing was New Years eve and I had some champagne and wine. Even though I know in my heart I live a normal life, and this was just a random issue I still cannot help blaming myself. I also cry to myself when I hear friends have had a happy healthy baby even though I am thrilled for them, and would never give Jude up for anything. It's a wrestle match between emotions and knowing whats right.

5. I have rabbit ears and can hear anything! I can wake up to a pin drop, and can hear anyone talking from another room. My grandfather used to call me the "Princess and the pea"...lol!

6. This is a big one.......believe it or not. Em and I were in a really bad car wreck in 2001. A young man going 50 mph plowed into the back of my Explorer, and sent us spinning. When we hit the curb our vehicle starting flipping. It was one of those large light poles that broke our flip and kept us from going into a gas station. While we were turning over inside the vehicle I clearly heard a females voice say "Jennifer you need to stay away from the glass" and someone's arms hold me close. Somehow my window and the front windshield broke, but all I got was glass in my eyelashes, and in my hand. I thought I was imagining this until my almost 4 yr old daughter at the hospital said QUOTE " Mommy did you hear that nice lady telling us to stay away from the glass". I almost fainted and now truly believe in angels! I will post a pic of the car.

7. I used to think I had a great memory, but now realize I cannot remember shi*

8. I gained to much weight with my daughter and lost my self esteem which probably contributed to the demise of my first marriage (along with other issues). I finally decided I would look the way I wanted to so I worked my butt off and lost 30 pounds and weighed only 148. I then got surgery to fix my sagging body only to have the plastic surgeon really screw things up. It seems he thought rather than being an insurance agent I should work in another field and made certain parts of my body enormous, and its uncomfortable, and annoying!!!! Seriously.......you can laugh but it's true. lol! At least I can have a sense of humor about it. He offered to fix them for free, but since Jude I have not had any chance at all.

9. I am so deathly afraid of scorpions that I ran naked out of the bathroom at my aunts lake house when I saw one into the living room where my friends were. My husband killed the little creature, but I could not sleep the entire night. I literally layed there crying silently when everyone thought I was asleep.

Number ten.....................DRUM ROLL.............
10. Back when I had a killer body (after the weight loss) I was invited to a Playboy pajama party with a friend of mine..........and attended.........and guys mistook me for a model and asked my friend and I to sign their bunny pillows...................... (hiding my head in shame...but laughing while hiding). Yep it's true..........but not anymore. HA HA HA!

Time to pass the "Honest Scrap" award along to 7 bloggers. I wish I could give it to all of you! But no, just 7, per the rules. I've chosen a mix of new and old blogging friends. Do not feel any obligation to do this if you don't feel like it. Also, forgive me because my lap top is not working properly, and I cannot link well. And the award goes to... FIRST OFF Mara, The blog "Bronx Cataldos", Sarah and Chadds blog, Jennifer Medinas blog, Matt Logelin's blog, Jurl (because she will make me laugh and we all need that!!!), and Little Wonders.

Pic I promised!

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Lazy day

It's Saturday and we are having a lazy day today. Em is with her dad, and then going to a birthday party where I am picking her up at five. Jude woke up again about 4am and had a seizure like he does as a pattern. He had his Klonnopin, and ounce of formula, and then he snuggled next to me to go to sleep. Mike said he thinks Jude sleeps better in our bed so Mike went upstairs to his "man cave" and slept on the couch. I told him he didn't have to go, but he said he wanted Jude to get some good uninterrupted sleep. About 9 Mike came back down to wake us up so Jude could have his morning topamax and pheno. We then all three snuggled in to watch a show on football. It was great laying in the bed without any rush to get ready for work, or other activities.
So this morning my phone rang, and it was my new found friend online Jocalyn who has a daughter affected by a stroke. I was excited to finally talk to her on the phone, and to trade stories regarding our children, governmental help, and lack of help. It's unfortunate we met online because of our children's issues, but I am glad to know her. It's nice having someone who can relate to exactly what you are going through. The same exact comments come from her are ones I have heard myself of Mike say. We are going to arrange a dinner soon so our families can meet. I think this will be great for all of us including Emily because she has a son close to Em's age. She will be able to see that other children have siblings with conditions like Jude's. Speaking of the government we are trying to get the final paperwork complete for MDCP so they can get Jude's information processed. I think that program will help us some even though I am a little unsure of how it all works. Jocalyn tries to educate me a bit about it, but I feel I have a lot more to learn.
So I had someone this week ask me about Jude's condition and what happened. When I explained that they found a brain bleed in utero they seemed mortified that I went ahead with the pregnancy. I cannot imagine Jude not in my life, but her words brought back a flood of memories. I went ahead and told her the story, and when I was done she understood why we gave Jude a chance. I had had an amnio because I am 35 that said everything was fine, the sonograms had been fine in the doctors office, and the pregnancy had been humming along. Then it was the level 2 sonogram at 18 weeks that showed a slight elevation in Jude's brain ventricles. That slight increase turned into a nightmare of decisions, and questions. The MRI at 19 weeks revealed there could be severe problems with Jude's brain due to a brain bleed or in utero stroke. We then took the MRI to a neurosurgeon at Cooks children's who reviewed the films with the head of radiology at cooks, and Harris. They told us they could see the issues, but had seen a lot worse. That his brain was very very young still, and you never know what may lie ahead. Every doctor we talked to regarding Jude's situation said he could be normal, he could be dyslexic, or he could be profoundly disable....there was just no way to tell. We wrestled with our decision, but knew in our hearts that unless they could tell us Jude's situation would be hopeless, or life threatening we had to proceed through. In fact when the perinatilist told us that Baylor would not approve a termination if we decided that's what we wanted because we could not prove anything was wrong........we made up our mind. In fact they even told us we would have to go to a Dallas abortion clinic that specialized in late termination. So I looked at the doctor and said "So if the hospital won't approve a termination because we cannot prove anything will be wrong with him then why would you want us to terminate based on what MAY happen?". So the doctor was nice, and simply said that this was something we had to decide ourselves, and once we decided we would never look back and question "what if". I told him that the neurosurgeon, and others we talked to gave us some hope. They explained that the brain is the most complex organ in the body, and the only one that can compensate for parts that do not work. We did not want our son to be in any pain, but we also didn't want to terminate a healthy child. So I explained to the lady that asked me why I didn't terminate that there was no "what if" anymore. Plus I have a beautiful son that brings light into our lives. We know we didn't do this for selfish reasons, but to give a baby a chance that fought to live so that's the least we could do for him.

Have a good weekend everyone.

Friday, January 23, 2009

Update

So Jude was scooting around in his bassinet half the night last night so we are a little sleep deprived again. He did try and have a seizure last night prior to putting him to bed. His eyes followed the normal seizure moves, but it was short lived and he did not twitch at all. Although, he did wake up at 4am again with another audible seizure. I am beginning to think that seizures are cunning creatures because they maneuver themselves around the medication by adjusting. Once they have adjusted to the new medication the seizures start up again and increase in frequency. I guess we truly have to stay on top of them, and may have to realize being seizure free might not be reality. We can hope and pray, but some children never truly are free of them. I heard from an old acquaintance today who turns out to be the head of special education at a specialized school. I felt truly blessed to hear from her, and thought it was a so nice she took the effort to contact me. I look forward to hearing her advice on Jude's situation. I am beginning to research items that will make Jude's life easier as he gets older from chairs, to spoons. I am very encouraged to see there are so many wonderful products out there for our little man.

On another note I decided to hold a girls night at my house. I thought I needed to start putting our lives back to the way they were while adjusting with our new normal. So since I love to entertain I thought this would be a great inexpensive way to have a fun night. Mike said he would keep Jude upstairs in their "cave"... ha! I asked everyone to bring a dish, and I will pull out some board games. I am pretty excited about it.

Thursday, January 22, 2009

Thursday

I didn't have any appointments for myself or for Jude today so I had a ton of errands to run at lunch. Jude was almost out of topamax so I had to replace that, and his Klonnopin. Last night Jude, and I went to sleep together around 10. When Mike came to bed he said he moved Jude to his bassinet, but I didn't hear anything. I guess I was exhausted after working, and the blood draw. Jude woke up like clockwork at 4am, and we could tell his movements were mimicking a normal seizure.....yet different. It's a bit hard to explain, but it was as if his body was going through the motions slower, and not as severe. He only let out one tiny yelp, and then the seizure seemed to subside all together. It was encouraging to see that yet again his seizures seem more controlled. Mike did go ahead and administer the Klonnopin just to make sure that there wasn't another episode. Mike called his mom today, and asked her if she could come over to help watch Jude while he got some work done around the house. I was very proud of him for doing this because he has been a bit withdrawn into the house. I guess it's true that men retreat into their caves until they emotionally feel better. We even discussed taking a small camping trip in April to get away from everything if possible. With everything hitting us we cannot go on the trip we planned this year so therefore we looked into an inexpensive camping trip. It will be nice to get away from it all, and just rest in nature somewhere. So the point is I think Mike is feeling more confident about everything. He still hurts when Jude seizes, and he still wishes this wasn't happening just like I do, but he is getting better. I did notice that the extra topamax dosage yesterday pretty much ruled out Jude keeping the paci in his mouth which he was not happy about. He was still a good baby overall, but he would just get aggravated every time his favorite possession fell out of his mouth.

So my friend Sarah at work had a good friend of hers fall ill a few weeks ago. I am afraid it doesn't look good, and they took her off life support. I feel for her, and I know she is emotionally exhausted. All I can do is quietly pray a miracle pulls through. I think the frustrating part is they just cannot find a final answer as to why this happened to her friend. It was sudden, in the middle of the night, and without explanation. So Sarah, and friends you are in our prayers.

I plan on continuing my blog about Jude for as long as I can so other parents that are new to this issue will be able to see the process. Since we are just going into the therapy phase, and follow up doctor visits we are entering a new chapter. I hope it helps others at some point!

Wednesday, January 21, 2009

Vampires!

My doctor called me yesterday to confirm information regarding the blood they were taking today. They explained that several of the tests they want to perform cannot be handled within their office. So therefore, they sent me to Baylor hospital today. I wasn't aware this was an entire out patient type function I was going to?!? They took ELEVEN viles of blood people.........I FELT WOOZIE. Anyway, they then performed a bleeding time test. That test consisted of them using the puncture instrument they use in a PKU and then timed how long it took for the blood to clot. The women were very nice, but I felt a bit like a guinea pig because I was a teaching took today. It seems most of the women there had never gathered the "platelet" test so they all gathered around to watch. Of course right when I have a plethora of strangers standing around my bedside my stomach makes a sound that resembled Godzilla's roar! So the nice head nurse sent me home with some graham crackers which gave me a laugh. So now I sit and wait until my doctors appointment on Wed 2/4. On that date I will learn if any issue with my blood caused Jude's stroke. If I do have a factor V deficiency, or anything else than it will give us an indication on any direction we need to take with him. It will also shed light on anything I might need to do for myself such as aspirin, non aspirin, non birth control, etc. Then again as the nurse reminded me today there very well may be no known cause for Jude's stroke.
Mike called earlier to let me know that Jude had a mild seizure. Today is his first day of adding the additional topamax in the morning so we are hoping it helps. Mike and Jude stopped by after Gymboree today so I got to see my little slobber monster this afternoon. He is getting so big to me. Mike said he did well in Gymboree as usual. Now we brace for the impact of therapy sessions, and doctors next week. I feel like next week is the true start to the path we are about to go down. I am crossing my fingers for a seizure free night, and a night of sleep.....I am TIRED.

Reign Over Me

So last night when I got home I cooked dinner, picked up the house some, and spent some time with Em. When it was time for Emily to go to bed, Mike and I went to watch the movie "Reign Over Me" that he had recorded for us. It stars Don Cheadle, and Adam Sandler and is based on a man that lost his family in the 9/11 tragedy. If you have seen this movie you may be able to relate to my spew of emotion I am about to give you. I know some people say they don't want to be subjected to sad movies, but in my opinion this movie isn't a choice it should be necessary watch! Oh, and it's not just a tear jerker it's a.... my eyes are still swollen this morning movie. I have never been more moved by a single piece of cinema ever! You can look online and find the general premise so I am not giving anything away. Basically Adam Sandler lost his entire family in one of the planes on 9/11. He was devastated and just couldn't deal with his loss, and therefore goes a bit insane. Well okay ... he goes very insane. If you have ever experienced any type of major loss in your life you cannot watch this movie without relating to wanting to flip out for a bit. I lost my mom when I was young, lost a boyfriend at 16, lost both my grandparents I grew up with, etc. Although throughout my losses as dark as my sadness was I never felt unable to handle any of it. Jude's news though was very tough. It has been hard to describe to people that have never dealt with a special needs child, or a possible loss of your child how I was feeling. There are times I have wanted to just sit down and give up. There are times when dealing with doctors, paperwork, financials, Judes safety, and more that I just want to throw my arms up. In the end though this would never be an option for me because you just have to keep going. I looked at Mike last night and told him that people always tell me that God won't give you more than you can handle. Losing my entire family would be the breaking point for me. I understood how this guy could lose it because that's the one thing I wouldn't make it through.
Anyway, so there was a point where Adam Sandler said the following quote; "I don't need to talk about her or look at pictures... 'cause the truth is, a lot of times, I see her... on the street. I walk down the street, I see her in someone else's face... clearer than any of the pictures you carry with you. I get that you're in pain, but you got each other. You got each other! And I'm the one who's gotta see her and the girls all the time. Everywhere I go!" It's a different scenario, but I looked at Mike and said "I get it now. That's how you said you feel about Jude when you look into little boys faces running down the street". Mike had mentioned before how he sees Jude in other children. After saying that to him Mike started crying, and soooooooooo I cried too! We finished our bawl fest watching the movie, and I let Mike know how appreciative I was he recorded this movie. I explained that as hard as it was to watch, it reminded me how grateful I am for the family we have. Jude may never be normal, he may not make it to old age, and our journey will probably be difficult. Although we have each other, and we have him. He is alive when many children with issues don't make it. Em is with us too, and we have a solid family so I am very thankful for that.
Then through my tears and sniffles we went off to bed. We did wake up to Jude having a seizure this morning so Mike brought him into bed with us. I then moved him back to his bassinet at some point, and when I got up for work he was laying there looking at me. I picked him up cooing at him and I actually got a little smile! It was a sweet smile.

Tuesday, January 20, 2009

Update

It's unfortunate, but Jude did have a seizure this afternoon. Mike said the seizure wasn't that bad, and that Jude just twitched for a bit afterwards. The neurologist called back, and confirmed he would like to add the additional topamax in the morning. We are crossing our fingers that the additional medication will fully control the seizures, and hoping it does not wipe Jude out of cognitive abilities. We did have our meeting with MDCP today, and I am now buried beneath a mound of paperwork. Throughout my life I have always felt rather controlled, and able to handle most anything set in front of me. At times throughout this experience I feel a bit frazzled and overwhelmed. I sat with the paperwork on my desk today, and just stared at it for a bit. I did eventually start filling it out because I have a tendency to be rather prompt. I am encouraged at some of the items the dept may be able to helps us with, and cover. I finally feel a bit of relief provided by our government.....granted I haven't seen anything yet....but I know it's there.
Tomorrow I have all my blood work with the doctor to test for any deficiencies in clotting so I guess I will know shortly if this was caused from that.

Have a great night all.

Big announcement

Well I said I wasn't going to say anything about seizures being good again, but I truly cannot help myself. Ladies and gentlemen I have a HUGE announcement:

JUDE HAD A SEIZURE FREE DAY YESTERDAY!!!!!!!!!!!!!!

Besides the 1 very mild one he had early morning at 7:30 he went seizure free!!!! Now again today so far.........not ONE seizure. Could it be that the new found topamax is actually beginning to work?? Is it possible that my doubts regarding modern medicine is now beginning to turn? I don't want to get my hopes up because I know seizures are sneaky little... well....things (to refrain from cussing). I also know that as Jude grows his medications will have to adjust. So after our event free day I called the neurologist this morning. I called because we need a refill on the topamax, and to inquire about matching the nightly dose in the morning. If we give 2 topamax in the morning, and 2 at night we may see even more control over these nasty seizures. In addition to slowing his seizures Jude has suddenly greatly increased his appetite.
We have our meeting with the medically dep children program today so I must cut this blog short. I have to run home on lunch to meet with the ladies from the state.
I will tell you that I had a mom ask me today what Jude's subtle seizures looked like prior to them becoming audible and very noticeable. I tried to explain, and assured her that I would eventually get the video of him on the blog. I don't want to put any video's up of his current seizures because they are hard to watch. The subtle ones though may lead to other parents diagnosing their children, and seeking early help. So therefore, I have said from the beginning I needed to show you his tiny twitches. I will work on getting that posted. I also have all my blood work tomorrow to look for the deficiencies in my blood that the doctor may have missed that could be the culprit for all of this. Please have a great day, and pray that Jude's seizure stay at bay. Thank you for your support.
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Monday, January 19, 2009

Damn Seizures

Well I am back to that distasteful expression... "damn seizures!". Remind me not to blog again about how under control they are getting because that seems to bite us in the booty. Jude had the worst seizure I have seen him have last night. Before the seizure hit Jude and I had quiet time together, and were having the best time. I literally sat on the couch talking, and singing to him for hours. We played, and he truly looked like he was responding to me. His eyes were so bright, and full of expression. Suddenly Jude's body started shaking like he was reeving up for something. This is a new move and something I wasn't used to so I panicked a bit wondering what he was going. After the shaking Jude went into a full blown audible seizure. I felt so sorry for him, and my heart ached! Mike rushed down from his game room, and helped administer the Klonnopin to Jude. I am thinking that Jude got over tired because he was fighting going to sleep, and this seizure was after his medications. So we then woke up this morning about 7:30 to him having another seizure. UGH!!!!!! Right when you take a step forward you then take three steps back. Seizures are such a strange situation, and so very hard to control. In addition to the seizure last night I explored Jude's eyesight a little more. I lifted him up to the light like I had done in the past, but this time he did not squint. Although, I think I may have done that incorrectly because when Mike tried Jude did squint. I also got my hand very close to his eyes, and he did not blink. In addition to that I put his bottle right in front of his eyes, but it wasn't until I touched his lips that he reached for it. So I am not sure, and this is something I mentioned ECI wants us to get checked out. So I put a call into the doctor to get a referral to a pediatric opthamologist.
With all this going on with Jude I have started waking up in the middle of the night to check on Emily more. I guess I have a true fear of her getting ill, and I need to work on controlling that. Anyway, this weekend Em came and hopped in bed with me, and Jude joined as well. I am still amazed at how Jude responds to Emily. It's childlike, and so innocent and it's almost like Jude knows how to communicate with her. When they are together you don't see any issues with Jude, and she can bring so much out in him. In fact in these pics I almost see a smile! {If you are reading this on Caring Bridge please access my blog to see pics}
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I found this quote and I love it; "Instead of comparing our lot with that of those who are more fortunate than we are, we should compare it with the lot of the great majority of our fellow men. It then appears that we are among the privileged. Helen Keller "

Here is a pic of Mike and I out on Saturday. It was so nice!
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Sunday, January 18, 2009

Sunday

Well Jude woke up again around 6:30am having a seizure, but again it didn't last very long. Do we see a ray of hope? My aunt flew out this morning, and I was very sad to see her go. Without my mom around I tend to cling to my family pretty tightly, and will miss their extra company. Before my aunt left she called to say goodbye, and to express that she really thinks Jude's medication is beginning to help. I would like to say that HE is improving, but realistically we understand that it is his situation that is improving. Either way we are grateful for any type of extermination in the monster that inhabits my baby at times. So we had to go get groceries today so we packed up everything we needed to venture out. Jude did so well until we were coming home, and we heard Emily say "Jude is having a seizure". She pulled the cover of his car seat back, and began rubbing his forehead. I am amazed at her ability to keep calm, and how protective she is of him. His seizures no longer worry or bother her they are an issue that we must understand and help control. His audible portion of the seizure was again minimal and lasted less than 5 minutes. He then twitched for another 10 minutes, but that is nothing compared to the 30 + minutes he was experiencing before. I told Mike that if the doctor increases his topamax in the morning to match his dose at night I believe his seizures might truly be controlled until he gets a bit older. Jude is displaying more signs to me of being a little more disabled, but he sure is cute!!! We also know that whatever lies ahead of us we will accept and try to tackle full force. A lady walked up to us at breakfast because she said her daughter wanted to see Jude. I smiled and said "of course", then looked and saw her daughters sweet downs syndrome face being a bit shy. I smiled at her mother, and then looked at Mike and noticed how sweet his smile was to them. I think prior to having a child with special needs we looked on others that had "needs" with sympathy. I now know that this is the wrong thing to do because our children are so loved, and mean so much to us. Plus I think at times that our children, special needs, or not have a better understanding and positive view point of life than us "normal" adults. In fact when we got home last night my aunt was telling me something my wise daughter said again. My aunt said she was talking to Emily about her paper regarding "If I were president". If you remember Emily's goal was to integrate special needs children into the regular school classes. I tried to explain to Em that the reason some children were in special classes was for their own safety. She would have NO PART OF THAT THOUGH! Anyway, Emily said "Look at that clock. I see the time..........but a special needs child sees so much more. I believe that Jude sees the lines, the colors, and more than just the time...he sees what makes up the time". Wow! Em told that to me without knowing I had already heard her description of what Jude sees from my aunt, but I still listened intently and thought she was so cute.
So Jude is now sleeping quietly in his swing, and we are grateful for a slightly peaceful day. Mike and I did have a very nice time out last night. It was nice to get away knowing that the kids were well taken care of. We were home by 10:30, but we were getting tired by then anyway. Oh and a huge thank you to Kim who did my hair ........ and then gave my daughter back what I sent her direction ;) ... you know what I mean. It was very nice, and very unexpected. People amaze me with their sweet gestures.
All in all I have had a nice weekend of finding true appreciation in both my children. I have some great photo's to post tomorrow so please check back.

Saturday, January 17, 2009

Saturday

Jude did well last night, and made it until almost 7 before having his first seizure of the day. In addition to that the seizure was short lived, and he did not cry in between the convulsions. We are pleased with the progress, but still hoping for more. I am not sure if the reason he didn't cry is normal, or because the episode did not bother him that bad, or something else is going on inside. After his seizure Jude and I slept in together until about 9. He then had to take his morning medications, and get some food in his tummy. I am afraid Jude is still not going to the bathroom on his own so we had to give him a bottle with some fiber in it. Jude did well the rest of the afternoon until another seizure struck about 2pm, and he is now fast asleep in his bassinet. I tried to work with him on some tummy time this afternoon, but his medication wiped him out of being able to function during the exercise. It's still so frustrating, but it's become so much more our regular life. I really had to sit down on the bed last night because I realized I just think in a different manner regarding our family. In other words if we are going anywhere,like considering a vacation, to the grocery store, or just everyday life we "think" different. We automatically know which meds to pack in what containers, and what we need to have available to us. We also just know this is our little Jude, and we love him. We don't really look at him like he has a ........ condition anymore. Does that make sense?
So today our friend is giving my dark ratty hair some highlights, and I am thrilled. He always helps me out when my hair is in need, and Mike does some work for him. It's a great trade off, and it helps so much. Then my aunt is coming over so Mike and I can have a few hours out together at night for the first time in awhile! I am very VERY excited, but I know I will think about the kiddos too. Em is also going to be home, and I know she will enjoy her time with her family.

Have a great weekend, and be safe.

Friday, January 16, 2009

Good News, Bad News, and I may hurt a doctor news

Let's start with the good news we received yesterday. Let me rephrase ~ the GREAT news we got yesterday. ECI (Early childhood intervention) came out yesterday for Jude's final evaluation prior to starting therapy. ECI is provided by the state through the school districts. Mike and my aunt were there answering questions, and watching them test Jude. Mike said the therapist asked many questions such as "does he put his hand to his mouth", "Does he show expression", "Does he cry when hungry", etc. The amazing thing is most of Mike's answers were "yes". They also tested Jude's neck strength. My aunt explained that the therapist put Jude on her stomach, propped his elbows up, and then waited for him to look at her. My aunt was thrilled when Jude looked right up at the lady!!! The therapist told Mike that once she received Jude's diagnosis she was not expecting to find a baby that did very much. She said she is encouraged that he has so much muscle control, shows emotion, is eating well, etc. She did clarify that he should have MORE control over his neck right now so he is delayed there. He also looks to the left to much, and we have to work with him turning to the right. She also wanted us to take him to a pediatric opthamologist to test his eye sight. So all in all the meeting went much better than we anticipated. Jude is delayed, but we have a ray of hope again. They will be coming to see Jude every Monday to do either physical or developmental therapy. Later in the day I went to dinner with my aunt, and she said she thinks Mike is just amazing with Jude. She said when the therapist asked Mike what his goal was with Jude, and how much therapy he wanted. Mike replied "this is my job and I want him to walk so I want every bit of therapy we can get". Gotta love that boy.
The not so good news was that Jude had a seizure while they were there. He then had another one last night, and Mike teared up. I told him that it was a good day because Jude had only experienced two seizures. He explained that is why he had teared up because he thinks it's sad and unfair when the thought "my baby only had two seizures today" runs through his head. I then teared up, and we had another cry fest.
Now let's talk about the hematologist. I arrived at their office five minutes early for my 12:30 appt yesterday (that they had me rush in for). I waited for about 20 minutes, and I then asked the receptionist how long the wait would be, and explained I was on my lunch hour. I saw her get up to go see where they were at, but she never mentioned anything to me. I waited about another 15 minutes, and they finally came and got me. I then was escorted back to the room to see the doctor and...............waited and waited and waited again. I finally had to get up, and proceed to the front desk to explain I had to go back to work. I know specialists are busy, but I cannot miss anymore work right now. It wasn't planned for me to be out, and since I am currently the sole provider I must treat my work with respect. So I rescheduled and then left. A little bit later my cell phone rang, and it was the nurse of the doctor. She was apologizing profusely explaining she wasn't aware I was on lunch. She then asked several questions regarding Jude's brain bleed. She said they went over every hospital record at Baylor looking for the information. I explained to her that his MRI results were at UT Southwestern, and Cooks. She then asked me questions about my stay, etc. I was then told they wanted to do an array of blood tests prior to my doctors appointment. So they are scheduling the tests, and then scheduling the appointment. In all honesty I really do like this doctor's office, and I understand they were just running behind. Although, I can also tell you that for some reason they sound very panicked about this whole situation. I told Mike last night that the doctor office has to know that it wasn't anything they failed to do that caused the stroke. I believe Jude's stroke happened VERY early in utero. I told him my only thought is that they feel they missed something on me, and if something had happened there might have been an issue. Who knows though.........maybe they are just overly concerned.
Jude was a bit whiney again last night and again I am thinking he is just hurting from the seizures, or from teething. So I gave him a little more Tylenol, and he was a happy camper. I don't like giving him other meds on top of the meds he already takes. Although, I do remind myself that he is just little, and going through a lot. Therefore, he cannot say "Hey mom my head hurts really bad from that seizure!" so he cries.
My dinner with my family last night was very nice. I truly enjoyed it. I want to see my cousins again though so I need to run by their house.

Thursday, January 15, 2009

Follow up

As stated last night on my blog, yesterday was very difficult. Mike and I had a counseling session at noon so therefore he and Jude came to my office to pick me up. Upon entering the door I heard Jude's little yelp, and I knew he was having a seizure. I carefully removed him from his car seat, and sat holding him while he finished.... all the time wondering if my boss overheard him. Sarah was in her office, and was rather quiet until Jude was done. Once he stopped she came in, and asked if that was the yell I was referring to. I explained that it was, and then she said "I just couldn't handle that everyday". She could though when she had no choice, and she is strong so she would be okay. That's one thing I try to convey to people, is that I don't want to handle this either. It is just not a choice that was given to us on whether we want to handle this situation or not.....we just have to. So from there we went to the counselor just to talk about our feelings regarding having a sick child, and how it is affecting us as a pair. I was actually rather proud of Mike and I because by the end of the session the doctor seemed to have a good opinion of us. Let me clarify this is a doctor with a background in ministry so I was unsure how he would respond to the entire situation. We are Christians, but we also have to be realistic with Jude. He said that he thinks "We have a good balance between having hope that Jude will defy the statistics, and also understanding that his time on Earth could be short". He said it's good to have faith, but it's also good to understand what could possible happen. He said he thinks we understand that each day Jude is here is a blessing for us, and that we will learn a lot about ourselves while walking through this journey. He also pointed out that by learning about ourselves Mike and I will grow closer rather than grow apart. He then talked to me about how men just have to retreat to their cave every once in awhile. He also talked to Mike about making sure he eats while in his cave, and poking his head out to say hi to me ...ha. Also, at the beginning of our session he asked what the doctor had told us in the hospital. It was interesting to hear his response. I explained that the doctor said, "that he does not have a crystal ball, but this is what the statistics are, and that he has never had a child with as much damage as Jude be normal or live past early childhood". He replied "You cannot ask a doctor to be more truthful or direct than that". I think by the time we left we did feel better, and the doctor stated he really thinks our sessions should be on an as needed basis. Mike and Jude then went to Gymboree as I trotted back to work. Mike called later saying that Jude did have fun at Gymboree and even had expressions on his face. Mike also stated that Jude was in awe of some little baby that was screaming and laughing next to him. Which is great that Jude was so fascinated with him, but it made Mike sad that Jude doesn't laugh. So later in the day Mike called very annoyed because Jude was fussy again, and he didn't know why. He again wouldn't take his paci, Mike had to hold it in his mouth, and Jude was just not happy. I explained that Jude might have a headache due to the seizures he had been through that day. Mike was so frustrated he just couldn't really discuss it. So I called the doctor and got a dosage for Tylenol, and then called Mike back. By the time I had called back though Jude was asleep, and Mike was getting a break. I could hear the frustration still seeping out of Mike though, and I know this is so hard on him.
So after I talked with Mike the neurologists office called my work, and I updated them on the seizures. I then asked them if Jude had any clotting tests done when they took ALLLLLLL the viles of blood from him at Cooks. She told me they hadn't, and then gave me the name to a pediatric hematologist. It is my understanding that clotting disorders, and other blood issues could be the factor for the stroke or the brain bleed. So I asked her if she thought it would be a good idea to have this testing done. She replied "Yes I think it would". I then said "Well if he does have this disorder then he could potentially have another stroke or brain bleed in the the future correct?" She said "I would think so". I get SO aggravated with doctors offices!!! I mean why wouldn't THEY think of this instead of ME think of this??? So it also turns out if I have something called Factor V Leiden which is a clotting disorder it can be passed on to Jude and thus caused the stroke. There are many things that could have caused this that I had no idea about, and then there is a pretty good chance there is still just no known cause. So the neurologist gave me the number to a pediatric hematologist, and I then called my hematologist to ask them if while tracking the ITP if they performed blood clotting tests..............they didn't. Sometimes I get SOOOO frustrated with doctors offices!!! The doctor then asked what was going on, and I informed him of what happened with Jude. He put me on hold and came back and said "Come in TODAY... like immediately!" So I have an appt at 12:30 to get my blood tested again. So I then called my aunt to inform her of today's findings and it turns out BOTH of my cousins are factor V positive. One had severe issues in her pregnancy, but the baby is fine. The other cousin cannot take regular birth control due to possible conditions that arise from the factor v. So this is all very interesting. I called Mike, and told him of my recent findings. His exact reply was "I used to think you were crazy for doing all this research, and educating yourself about this situation. I thought you were crazy because it won't help Jude or change his situation. Although I get it now ....if there is an issue that could affect Jude in the future we need to know." So I feel a bit like Nancy Drew and evermore convinced that I need to find my way into the medical field ;). This does all bother me because of course I feel like if something comes back positive then I was responsible, but that is something I will work through.
So once I got home last night Jude was still asleep so i took a long hot bath. Once I got out I could hear Jude crying, and I went to go get him. Jude never cries unless he is having a seizure so something is bothering him lately. I had a "mommy" feeling and I stuck my clean finger in his mouth on to his gums and OUCH the little stinker bit down hard! So he may be teething a bit, and therefore I went ahead and gave him that Tylenol. Not long after Jude was quiet, and sitting in my arms staring at my face like he does. Although, not long after that we got hit with another seizure, and this one made Mike and I both cry. Yesterday was just exhausting for some reason, and last night when my phone rang I didn't even bother picking it up. We were mentally and physically out of it. When I got up this morning I mentioned something we talked about last night and Mike replied "was that last night? What did we say?". That seems to be a general response from both of us lately. We are forgetful and sometimes don't fully comprehend emails, and conversations. I am a part of the pediatric stroke network, and sometimes I feel so bad with the emails I send because they can be repetitive. I told one of the girls on there she could kick me if she wanted to..ha! Hopefully people are patient with us, and understand we just aren't all together there sometimes. Between work, and home I lose my mind at some point during the day.
On another note Em came home yesterday and raved about school and choir. She then said "Oh, and mom Eli likes me! I told you I could get him to like me". I said "Wait Eli? No you said Kassen......I am so confused....you girls play musical boyfriends". She just giggled and walked away......sigh! I am in trouble folks.

Here are some recent pics for you.

Jude is losing his hair so he resembles Jack Nicholson:
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Jude loves his carrots his sissy feeds him
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No really he loves carrots
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I walked in and found this the other night. I guess Em covered Scooter up and they went to sleep together
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Wednesday, January 14, 2009

What a night

Jude has had several seizures throughout the day today, and tonight has not been that great either. It's been difficult, and I have so much to say regarding my feelings, and Jude's physical problems. Although, I am afraid I am both overwhelmed with the issues at hand, emails, work, and home. So I am going to get some rest tonight. I am about to take Jude to bed where we will snuggle close until he falls fast asleep. I will post a blog full of all I am wanting to convey in the morning. Have a wonderful night everyone.

but mom I don't want to go to sleep!

Last night when I got home my aunt had Jude sitting on her lap on the couch. I was very excited to see him so I picked him up to give him a hug, but I felt something was off. His shoulders shrugged a little, and he wasn't looking at me. I explained to her that I thought he might be starting a seizure, and that I would like to go ahead and give him the Klonnopin. Sure enough 30 seconds after we gave him the medication he started a seizure. Caron said it was rather amazing I could sense it was coming on, but I have just gotten used to his twitches. So the bad news is he had another horrible audible seizure, but the good news is they were limited to only two yesterday. Well Jude fell asleep after his seizure, Em was eating at a friends, and I went to take a long hot bath after a very busy day at work. Once I got out Jude woke up.........and he decided to stay up. He was actually acting rather out of character, but I did go ahead and feed him some. Then it seems he couldn't hold his paci in his mouth, he sounded very rattled, and it scared me a bit. So I told Mike I wasn't really ready to go to bed yet, but I was going to lay down with Jude to see if he would fall asleep. Oh noooooooo, Jude didn't want me to lay him down. He wanted to be in my arms, me holding the paci in his mouth, and cuddling him. It was probably a good hour and a half and FINALLY he fell asleep. At that time Mike and I were so tired we fell asleep too. Then guess what? Yep Jude was WIDE awake at 5am, and had been a bit of a restless sleeper through the night. So I heard him make his normal audible seizure sound when he woke up at 5......yet he didn't go into a full blown seizure. So we administered the klonnopin again, and fed him 4 ounces. He then fell asleep in between us again, and I moved him to his bed. As of this morning when I left he had not had any seizures. So I am crossing my fingers that we have a good day. I am not sure why he was so restless last night, or what was bothering him. I am sure the medication is responsible yet again for him being unable to control his paci. We have good days with Jude where we actually see the light in his eyes, and then we have days he seems very spaced out. I also noticed Jude drawing his hands up more last night which makes me wonder about CP, but I know it's very early to tell.
So I am personally pretty tired today, but thankful I have a job to be at. Mike and I have a counseling session today to sort through all of these circumstances. Then Jude has Gymboree, but I will have to miss out on that today due to the counselor. Then ECI comes tomorrow, and thankfully my aunt is going to participate in that meeting to see what therapy will be provided for Jude. Then next Tuesday MDCP comes out, and I have been told I really need to attend that so I will be trying to take a long lunch that day. I guess we are moving a long and our lives are finding their way down our new path. My aunt that lives here called me last night, and told me how proud she is of me. It's strange hearing that because I feel there is no other way to handle this situation. Jude is our boy, and we love him.
So my friend Sarah is over here telling me how she is working on the fundraiser for Jude. She is so sweet!!!! It sounds like lots of fun.
As I said above Em had dinner with her little friend down the street....I swear they are attached at the hip.

Tuesday, January 13, 2009

MDCP!

Well something is going our way!!! With a little advice from a friend we were able to get Jude moved up on the Medically dependent children's program in TX. Since he is having severe seizures he qualified to be moved up the list! We now have an appointment next Tuesday. This is such good news since there was a wait of 11,000!!!!!!!! I was told that this program goes off Jude's assets not ours. It's put in place to help those who make a living not go under from a crisis, and to help the children. It helps keep the children out of nursing homes, and provide equipment for them. That's my understanding right now anyway.........I am sure other mothers that have been through this can add to that and explain it much better. I am just thrilled we heard from them. It's rather strange how you learn about all these departments and places that provide help when you encounter a situation like Jude's. I never would have known about them, and I am not sure if I should be ashamed of that, or grateful I never had to know before.

ps. Mara I cannot access your blog anymore :(. I am wanting to check on you guys.

Back to work

So my aunt came to my house this morning at 7:30 to watch Jude, while Mike and I worked today. Mike has to finish his portion of the job that is out of the city, and then he will be free again for Jude. I believe he can have his guys finish the final stages of the job up without him there. I called my aunt about 9:30 to check on Jude, and she said I must have mothers intuition because he was seizing. I could hear his little yelps in the background, and it made me sad I was not there. I know she is very patient with him though. As I said before my aunt was a nurse for years so she knows Jude isn't in pain. The crying he has is either a part of the seizure itself, or because he is very frustrated with the involuntary movement. Anyway, we have been a bit concerned with his eating, although Jude is still gaining weight. So this morning my aunt said she got almost 4 ounces down him, and then she fed him a jar of carrots. I said "He ate the ENTIRE jar?". She said "Yes, is that a problem?". I told her that is wasn't I was just shocked because he normally just takes a few bites with his medication. I guess he wants more baby food, and is all for the more solid foods....he is his fathers son! So I was very thankful to hear that he had both formula and baby food. I am torn on how I feel about feeding tubes, so I am so happy that he is eating well. I hope he will continue to do so and will have a will to survive. I understand though that sometimes it just cannot be helped, and some children must have a tube to survive.
I enjoyed my day off yesterday, but I also remembered how much I miss my kids when I am not there. I am truly thankful though that Mike is at home with both of them. He is so good with them, and he now proclaims nobody can better care for his son than HIM! I said "Ummmmmmmmmm......... listen here buddy!" lol. So yesterday Jude had a seizure at my cousin Sarah's house, and my visiting family were able to witness it. Jude whimpered and cried while his body jerked, and we all rubbed on him. My cousin Candace said "I can deal with a disabled child, but this seizure thing has to stop! It's not fair" I told her I have said and written those exact words on this blog, and to others. There is no cure for these seizures. It's just a matter of hopefully finding the appropriate combination of medications, and then adjusting them as Jude grows.
Mike and I talked a lot this weekend, and that was nice. We talked about if Jude is in fact disabled how we will work with the house since all the secondary rooms are upstairs. I do finally have one thing on my side which is Mike being a contractor. He could easily and inexpensively close in my dining room to make another room. We could then convert our half bath to a full bath with railings, or whatever is needed. We are lucky that our walkways widths are enough apart for a walker. I am saying WALKER because our goal is for Jude to walk. I still have a lot of faith in our little Juders. In fact my family pointed out how he looks at whoever is talking to him. My aunt said in her years of experience as a nurse, school nurse, etc that those who truly had nothing working in their brain were expressionless. She said she had one boy that came in to the school on a gurney (oh my!), and that his pupils would not even react to light. When Jude is placed close to a lamp his squints his eyes. We have accepted the fact our child will be challenged, but we are hoping/praying that he will be able to function. Although she pointed out what I always say.....we will work with him and love him no matter what. She also told me of one child that you could tell had a lot of therapy. That is another goal of mine with Jude.. EARLY INTERVENTION!!!
So back to Mike and I........we also talked about us needing to work out and get ourselves back to normal because us being healthy is important too. We also discussed the fact that prior to all this happening we had discussed more than 1 child. I had wanted a little girl, but the thought of that now seems non existent. My pregnancy was so incredibly difficult, and then what we have been through with Jude, and financially. In fact after this we were on the NO MORE CHILDREN band wagon.... It's sad though. I hate that the only pregnancy Mike experienced was so very difficult, and all this after he had lost 5 other babies. (I had mentioned that his ex wife had lost several babies through ectopic pregnancies). Just doesn't seem fair does it? I really believe my pregnancy was so rough because there was something wrong from the start. My platelets read low in the ER at 3 months, but they didn't inform anyone until I ordered the records. Another thought of mine was "what if GOD FORBID we lose Jude I am not sure Mike would make it back". Having another child has led me down a path of "I cannot fall apart". Granted you have to break down sometimes, but I know Emmy is there, and therefore I have no other choice but to be strong. So I wondered if it would be good for him to have another baby at some point. Not to ever replace Jude, but to provide another outlet and hope. I am not sure either one of us could handle that though ever so the thought is always fleeting. Fear takes over, and the thoughts of even the slight possibility of going through this again reigns over how remote the chance is.
We then talked about if I returned to school, his photography he is so good at, finances, Jude, Emily, and then the Jack Russell terrorists started up in the backyard. Oh yes, they are still there my friends, and they are still very loud. Plus, they are very smart and knocked over the entire plastic container of dog food last night. Which was so loud it sounded like a gun shot, and scared me off the couch. Not only did they knock it over they can get the lid off and go to down. Plus, Lady has now figured out how to take her pet rock and throw it at the door to get your attention. She doesn't get her ball, or her rope toy, nope she gets a ROCK! They make me laugh though and provide me much entertainment.
So Em and her friends are still texting away, and she is still getting bigger right before my eyes! I am anxious to get home today, and see everyone.
Have a good day all.

Ps ~ I stay up with carebridge because of Jude's account. Please say a prayer for little Margaret in Missouri I think she really needs them today. I have been following her story and her mother was sweet enough to leave a message on Jude's guestbook. Here is her link: http://www.caringbridge.org/visit/margaretromph

Sunday, January 11, 2009

Damn Seizures

That is really the only words I have for these monsters that haunt my child....damn seizures. Yesterday was such a great today, and today has not been so great. We saw my family who just got here for about three hours. Once we got home though Jude was afflicted with yet another horrible audible seizure. This seizure hit AFTER he had his topamax, and pheno so therefore I am at a loss. I am sad, and not sure what to do for him except hold him.

reflective

I have a habit of reading CNN online. You can call me a nerd, but I do stay up with our wordly news. While surfing through CNN I found this link:

http://www.cnn.com/2009/US/01/09/child.loss.irpt/index.html

Yet again another lesson for me to understand that someone else is always going through a harder time than I am. I am also in awe at the strength these families display by sharing their stories to help others. It's strange I came across this today, and I am not sure why I was inspired to click on this link. Maybe it's because I am about to see my maternal grandmother from Missouri. When Jude was officially diagnosed at Cooks Childrens she was so worried for us. She let a lot of emotion flow out of her that I had never heard before. Over the phone she was choked up and said "When I lost your mom Jennifer it literally took me 8 years to not think of her every hour every of single day!". She fell into a depression, and was so upset. So she knows what it's like to have loss in her life, and what it means to have hope. My family on both sides has seen a lot of turmoil, and a lot of loss. Which is another reason why I feel Jude is here. Maybe he was sent to restore our faith in hope and love. Regardless of how his situation turns out we are grateful for the time we have with him.

Sorry to post again today, but this link really struck a cord with me. Have a safe Sunday, and hug your families!