Tuesday, March 31, 2009
So my boss asked why we didn't go to the hospital closer to our house. I don't believe I addressed that before, but the reasoning was the hospital didn't want to take Jude. They said his case could be severe, and they didn't have the means to properly care for him. They wanted us to take him to a place that had a pediatric ER, and honestly I am glad we did. Dallas Med city was again on top of their game, and did an amazing job today.
So this is what our update is. The doctor believes that Jude is waking up from the "medicine and seizure haze" he has been in since he was 3 months. Therefore, he is starting to feel things that he has never recognized as "pain" before. They believe he has a serious case of acid reflux that has left his throat raw, and therefore he doesn't want to eat. So they gave Jude some prevacid, and soon after he ate almost 7 ounces!!! They also believe he is having break through seizures that present as jerks vs the violent ones we are used to. His heart rate is getting over 190 when he is experiencing these spams. They are obviously painful because when he jerks he screams and screams to the point we have to blow in his face to get him to breathe. They don't think he truly experienced the pain of the seizures before, it was just simply uncomfortable. They also now believe his feet swelling was just a result of the IV fluids. I was able to calm Jude several times today, and whenever I left the room he began to cry. Mike noticed he was a mama's boy today. He fell asleep on me at one point, and I worked at calming him when the jerking motions jarred him awake.
So tomorrow they will be performing ANOTHER EEG looking at the current seizure episodes, and then completing a swallow study looking for aspiration. If he does aspirate his liquids, we are hoping they can just thicken his formula because feeding tubes are a scary term to me. Jude has never had a problem eating so for once we are expecting a decent result from a test. Also, the doctor said he believes the depakote results far out weight the depakote side effects. Therefore, they are starting him back on the depakote twice a day, and are monitoring him closely. The doctor is right that the seizures are gone except the spasms (the jerking motions) which is amazing. Also Jude is more cognitive. In fact Jude arrived at the ER extremely dehydrated, and sick, but kept smiling at the nurses. A nurse said to Mike, "Oh he is so cute.. look at him smile". Mike goes, "huh, he doesn't smile??" and looked over to see a huge grin, and snapped a pic with his phone.
So overall we feel we have made progress, have a plan, and are a little more relaxed. When I got to the hospital the doctor was concerned Jude looked a little "yellow", and then his feet swelled. I feared the worst ... liver failure from the Depakote. I was so relieved to hear it may be something we can fix! We would still love prayers.
So I will be calling to check on Jude's tests a million times tomorrow. I will then leave work, grab Em, and go to the hospital for the remainder of the night tomorrow. I have Em in my bed tonight, and will snuggle close with her to let he know how much I love her. Then tomorrow I will snuggle with Jude.
Good night all.
Ps. Mike just called and said Jude just puked all over him at the hospital. POOR GUYS, neither one of them have clothes. I just heard a nice nurse offer to go wash Mike's shirt, and gave him a gown. I guess he is getting a first hand account of moms being puked on. I think he gets dad of the year award.
Once they started to wheel us to our room Jude started SCREAMING and writhing in pain. We told the nurses this is the behavior we had been seeing and they expressed concern. Once in his room Jude was still screaming, and I looked down and noticed his feet were very swollen. In fact, his little feet were so puffy they cut the circulation off where his hospital ID was, and I am sure that was part of the pain. The nurse went and paged the nurse practitioner who came in and evaluated Jude. She said she noticed his feet were swollen but isn't sure why, his throat is red, he is gagging, his temp was increased, and his heart rate increased a bit. So she is going to talk to our neurologist, and the pediatric doctor on call to see if we should do a sonogram of his abdomen, a swallow study for aspiration, and a study for reflux. In other words people..........he isn't going home tomorrow.......so our plans quickly changed.
So we are still at a loss to what is going on, but I will update when I can. I am here in the parents room updating from the hospitals computer. The staff is very nice which makes an unpleasant situation bearable. Poor Mike looks worn out again, and I hope we get a resolution quickly.
I appreciate every one's thoughts and prayers, and I know Jude does too. I also apologize t the girls at my work for flying out of the office this morning, and appreciate your help ;). Thank you to Sandy for picking up Em I know she is in good hands.
Monday, March 30, 2009
It seemed whenever I put Jude down he would cry so I have spent most of the night holding him. I did get him to take his pacifier again, and then eat a jar of peas, and finally I got him to take a bottle. He seems much better.
The doctor said that he wanted to test Jude's blood tomorrow morning early. He is going to check his depakote level, a full cbc, and liver enzymes. So we will know tomorrow afternoon if it's anything more serious. The doctor also said he wanted us to give him his depakote tonight, but not tomorrow. I was very hesitant giving him the medication today, but we did follow orders. We keep reminding ourselves that Jude has been seizure free for days. The doctor said that this may be as simple as reducing the depakote and alternating 1 then 2 every other day.
I have racked my brain wondering what could be causing Jude's issues. It could be one of the following,
1. He is teething
2. He has 5ths disease
3. He has a virus other than 5th's.
4. It's a reaction to the depakote
5. He is having a reaction to bananas, which we introduced about a week ago.
6. He has a serious upset tummy.
Your guess is as good as mine, and I wish he could just sit up and tell me what's wrong and where it hurts. We hope that Jude is better tomorrow. We know that it is our turn for a break for a little while which is for Jude to be seizure free without reactions. We are saying prayers, and keeping hope. Em has been holding a steady watch over her little brother. She is such a great big sister.
This is such a conundrum because on one hand his seizures are gone, but on the other he is reacting to the medication. It is so hard for me to explain how wonderful it feels for Jude to be seizure free. Our weekend felt rather ..... dare I say.......normal. Normal, is such a word that we miss in our everyday lives.
I will update later tonight when I hear from the neurologist, and what route our journey will take. I miss my Jude's little cheeks today, and I am ready to rush home from work to kiss them.
So I took Jude upstairs to Mike, and showed Mike what he looked like. I also told him about the "Mah" incident, and Mike seemed excited about that, but concerned about the way Jude looked. We discussed whether we should take him into the doctor, or wait and see how he does. We decided to give Jude a bit longer and see how he did. I took Jude to bed with me because I didn't want him to be in his bassinet and something go wrong. I laid there with him, and he tossed and turned muttering his new syllable from time to time. He would then choke on his salivia which scared me, and this was something he did all night. About midnight Mike came to bed relieving me so I could go to sleep. This is when Mike heard Jude say "Mah!" and "Bah!" so Jude had added an additional sound. I am assuming these were involuntary, but it was nice to here little syllables from him. Jude was awake most the night unable to hold a paci in his mouth, choking on his saliva, and unable to eat. I put a call into the doctor this morning, but I have yet to hear back. Jude is also still doing his tongue thrust, but is no longer crying. This could be a combination of teething, meds, and just Jude. So I am at work worrying about him, and I am exhausted. I am also thinking about all the laundry that keeps reproducing around my house.
So prior to Jude's late night episodes we attended Emily's softball game. Jude had stopped crying for awhile so we went, and took him out in the sunshine. My little Em did awesome! She got two runs because she hit the ball to outfield, and then as pitcher struck 3 people out! During their after game meeting Emily was named the MVP of the very first game. We were very proud!!! What was really funny though was Em had no idea what MVP meant.
Em being named mvp:
Sunday, March 29, 2009
So when I got off the phone I undressed Jude, and got a wipe after him. He was still very hard to raise, but we finally got him up. He ate 3 ounces, and then fell right back to sleep. We were concerned, but felt if he was willing to eat then his body must be functioning okay. Jude slept for another two hours, and finally about 2:30 in the afternoon he got up for the day. He has eaten another 4 ounces, and we are going to try to feed him some cereal soon. So far today he hasn't had much to eat, but at least he is awake. My friend Jocalyn texted me that every time they try a new medication her daughter does this. I told her it's SCARY!
The other thing Jude is doing is tongue thrusting constantly. He keeps pushing his tongue out of his mouth over and over, and we aren't sure why. He also keeps crossing his eyes a lot. I guess we will chalk that up to the medication too unless the doctor tells us otherwise.
Thank you for your thoughts and concerns. Again, at least we are seizure free!!!!
The bad news is Jude went to sleep at about nine last night at my dads, and has yet to wake up. He opened his eyes for a few minutes earlier when we insisted he wake up, but he then went right back to sleep. This is an indication the Depakote may be to strong for him, and had built up to rapidly in his blood system. We are going to keep a close watch on him. We decided if he isn't up by noon we are taking him into the emergency room.
It is nice to be seizure free for the time being though, and we hope that Jude is just tired. Maybe he is battling the cold we all went through?
We did have a blast bowling last night, and I kicked everyone's tails! Picture me singing "I am the champion" loudly. Since we were being all American and bowling Mike bought us some Sam Adams beer. I learned that I do not mix well with it because two beers in I felt very light headed, and stopped. Mike said I am a cheap date! ha! Anyway, it was nice to get away for awhile, and just spend time with good friends. Although, we did have romper room decide to occupy the lane next to us which rather defeated the adult night out. I guess that was okay because the eighties music rendition with the laser beams tracing the ceiling gave us laughs enough to make up for romper room next door.
I will keep in touch regarding Jude's situation. You might say a few prayers if you have a second.
Saturday, March 28, 2009
So I had a friends bridal shower today, and it was nice to get out. I decided I was going to take Jude with me, and that if he seized.......then he just did. We were going to be normal though, and I wanted to show him off. Luckily, he didn't seize and we had a great time. He was kissed on a lot and came home with glittery lipstick on his cheeks. I did hear several times, "You just have a the best baby", and "Oh is he tired". What do you say? I just smiled, and thought to myself that this is just Jude. Then a friend started talking about Jude's brain issues, and it seemed the other mothers caught on to why Jude is so good. Although, I would like to say that Jude has cried SEVERAL times today, and LAUGHED TOO!!! Mike, and I joke that when most parents are concerned their child is crying ....... we are excited.........and wait to hear him cry again. I think my little mans teeth may be starting to bother him so I gave him a bit of Tylenol.
Em is with her dad this weekend, and we are once again captives to the softball community. She had make up practice Friday in the dreadful wind, and then was suppose to have a game today. Her game today ended up being delayed until tomorrow. In other words our weekend winds up focusing on WHEN our child's game is going to be if it happens at all. Emily ADORES softball though, and if very good at it. She started out young in dance, cheer, and more girl oriented sports. I was surprised when she wanted to try out for softball, and was very good. I was a sports hound as a child. In fact, a friend of mind was talking about our kindergarten class together the other day, and how she always wore frilly dresses. I told her, "Shoot, my mom was just excited I was out of the mud long enough to go to school".
Jude's grandparents are going to watch him tonight so Mike and I can have some time out. We are going to go bowling......wish us luck!
Ps. If the terrorists howl one more time we may be having a doggy bag for dinner ;)
Friday, March 27, 2009
I have a busy weekend ahead of me. Emily has a softball scrimmage tonight, a game tomorrow, and I have a bridal shower, and then Sunday we are working in the backyard. I am rather amazed we are suppose to have snow flurries tonight. REALLY??? We are in Texas and this cold needs to go away!! So after a busy week at work we attack a busy weekend, but I enjoy it.
I will update this weekend.
Thursday, March 26, 2009
So I do have a quick funny story. Early in the week I told you that my family was in town from Springfield. Well they are leaving today so they dropped by the house last night to say their goodbyes to us and the kids. While they were there Emily asked if she could have some cookies, and I told her yes. She likes to heat her chocolate chip cookies up, and the yummy smell filled the house. As my family was leaving, Emily had just sat down with her scrumptious find. So I had taken Jude into the kitchen close to her and he had turned his head towards my two aunts. I was bragging about how much head control he has lately, and suddenly they started laughing. I looked over, and Jude is taking bites out of the air in the same direction Emily's cookie is. Huge, wide open, bites, with his tongue waving in the air. We all got a big kick out of this. So I went and got a jar of peas, which I am sure was a let down, but all the same he did eat the entire jar.
I was inspired by Ellens blog, and I have been working on Jude's story condensed into one entry vs this entire blog. It's rather lengthy so it will be posted later. It will show up underneath this post as I started it yesterday. Also, I am learning how to twitter as I work on renewals today. My user is CJENGO36 if anyone is on. I am currently being entertained while I am on hold by watching Demi Moore and Ashton K talk to each other.
Wednesday, March 25, 2009
After Mike and I were married we talked about the fact that his parents were elderly, and the fact he had no children. He wanted his mother to see his child before she leaves us. Mike and his ex wife had lost four children due to ectopic pregnancies which was devastating for both of them. I am sure it was also hard on his mom because she got her hopes up each time. I told him that it had taken me seven months to get pregnant with Emily, and that when I had all but given up hope when she made her appearance. Therefore, I told him I would get off my birth control, but not to expect anything to happen any time soon. To our surprise a month later we found out we were expecting little Jude. At my very first doctor appointment the doctor did a sonogram to predict my due date, but couldn't find a baby. Therefore, he explained the baby may be ectopic and to come back in two weeks for another scan. I dreaded even calling Mike and telling him. Thus the tone was set for this pregnancy and the roller coaster never seemed to stop.
In two weeks I was told the doctor could see a tiny little "fetus" and he estimated my due date in September. He then explained that he saw a large ovarian cyst, but he didn't think there would be any trouble with it. Due to some issues with the staff at this doctors office I decided to switch to a new doctor who turned out to be amazing. They did sonograms every visit, and we ran the routine of a pregnancy. I told my husband joyfully that I was NOT going to worry during this pregnancy like I did with my first baby. I was going to sit back, enjoy being pregnant, and take it all in. Little did I know that fate had other plans for me.
At 16 weeks my doctor told me that since I was 35 they would like to do a level 2 sonogram to check for issues like downs syndrome, etc. She said it's highly unlikely because I was still young, but they like to be precautionary. I agreed to have this done, and she also did a re-scan that day informing me the baby looked like a girl. I was thrilled with this news dreaming of hair bows, and frilly little dresses. My husband was a bit stressed wondering what he was going to do with three girls in the house. During that re-scan she also noticed my ovarian cyst was about the size of a "softball", and I admitted I had been having a lot of pain in my back. She then scheduled me for a renal sonogram to check my kidneys. This was on top of the level 2 sonogram.
My husband and I were so excited going to the level 2 sonogram. They scheduled this around 19 weeks into the pregnancy. We purchased our cd so we could record the images, and I went to get as comfortable as you can on the medical table. We had a large flat screen TV in front of us that projected the doctors image to where we could see it. The doctor was a brisk talking older gentleman who knew his business. He started the scan, and was looking at all the body parts. He asked if we knew the sex yet, and I told him we were informed the baby was a girl. He said, "Um no ma'am this is a boy". I said "are you sure?". He said "it's a boy...it's a bat and two balls, a hockey stick and two pucks...etc etc". I just died laughing because he had a sense of humor. Mike was so happy he didn't know what to do with himself. Although during our laughter I had noticed the doctor had gotten very quiet while he was scanning the baby's brain. "What is it" I asked (never the one to wait patiently for a doctor to give me news). He then informed me that Jude's brain ventricles were slightly enlarged. I was confused, and asked him exactly what that meant. He then informed me that this was a common occurrence, and not to worry but he would like to have a fetal MRI done to see if there were any other issues. I was stressed, and he tried to reassure me saying "They are normal just on the higher end of normal". He classified Jude as having "Mild ventriculomegaly". Thus started my quest and thirst for information leading me to the ventriculomegaly board, and more. I read how baby's ventricles can measure larger than normal, and then measure fine in the 3rd trimester. I got my hopes up, but I think I knew in my heart at that point that something was wrong.
So I went to my renal sonogram, and was told I had hydronaphrosis of the right kidney. By this time, the cyst had drained so I was confused, but at that point nothing surprised me anymore. My first pregnancy was a cake walk, and this one a nightmare. So we then went to the MRI, and I remember laying there with Mike patting my hand. The doctor had wanted to wait until I was 20 weeks a long to try to get a good image of the baby's brain. We were in the tube for over an hour, and then they finally let us out. As we were passing by the doctor viewing the films I saw her on the phone. I looked at Mike and muttered, "That's not a good sign". Mike asked me how I knew, and I explained that I just did. The doctor came out, and escorted us to a back room......another bad sign........she got out Kleenex.........a really bad sign! She told us the news was not good, and my heart sank. That there had been a significant event most likely a remote bleed or stroke that happened in the choroid plexus, and thus created issues throughout the brain. She took out a piece of paper and drew a little picture...
She said it was a bilateral bleed, and then she went on but at that point my brain skipped a few beats. She said Jude had cortical thinning, she had also said the cerebellum was small, the corpus callosum looked small, and there was fluid in his ventricles. I saw tears in the doctor's eyes, and I noticed that tears were flowing down my cheeks, but I hadn't even felt them yet. When I looked at Mike he too was crying. We quietly asked "what does this mean". She said it was very early to tell what the results would be because baby's brains can sometimes compensate, but she didn't think the result would be favorable. She said if he did survive she expected him to be profoundly retarded. She then quietly told us we had less than 3 weeks to decide to terminate. Those words rang through my mind....."terminate".....wow. How do you decide to "terminate" your child. I had always said I would never bring a child into the world that would have no quality of life, but I had also never been in this situation.
The next few weeks were full of doctor appointments, re-scans, and more. We hunted out pediatric child neurologists, and got various opinions. Every neurologist we saw reviewed the fetal MRI, and every one said there was just no way to tell. The final dr we saw was a neurosurgeon at Cooks children's. He came into the room, and sat with us fielding our questions for a long time. He informed me he had taken the MRI to the head of radiology for his opinion as well. He told me he had seen scans much worse than our sons. He also said he had seen significant (they like that word) scans were the person was "normal", and "normal" scans were the person was not. That he recently had a child in a car wreck that had an obvious birth defect of the brain, and expected to find her a vegetable. Although, when he walked into the room she was playing on the floor. He said Jude's issues could range from dyslexia up to profound retardation, but there was just no way to tell right now. He explained that baby's brains are like "plastic" and have a way of being able to compensate. He also said that strokes, and bleeds in a fetus are very common because their little brains are so "fry able", but the difference is most of the recover and Jude did not.
We then went back, and talked with the initial doctor who said Baylor wouldn't approve a termination, because it wasn't medically necessary. So my answer "If the hospital doesn't find this worthy enough to terminate than why should I?". After a large amount of stress and worry I made my decision. We told our family that if the sonogram they had planned at the end of the week showed no progress we would terminate, but if it did show progress we had to give him a chance. My family came in from Springfield, and went with me to me final scan prior to the doctor needing my final answer. The scan was amazing..... Jude' head grew, the ventricles shrank, the cerebellum grew, and you could see the corpus callosum. We figured if Jude was fighting then we would fight for him, and we had to give him a chance!!! Mike, and I vowed to never look back, and to love Jude no matter what condition he was in.
Throughout the rest of the pregnancy we scanned Jude's brain on a constant basis looking for growth in the head size. A lack of growth would mean microcephaly, and a lack of brain development. Each time we went into the doctor's office I looked around at all the women that were excited to get their sonograms. I envied them, and I wondered the percentage that would meet my fate, and prayed for them. I personally felt sick with worry each time I went in, and was praying his head had grown. Each scan did show his head grew, and Jude grew too. I watched Jude from a tiny peanut in the early stages to a large baby ready to be born. It was rather amazing! He kicked and hiccuped a lot, and my hydronephrosis got worse. I was writhing in pain at times, and just didn't feel well. Finally at about 30 weeks yours truly who went 2 weeks overdue with Emily went into early labor. Looking back it could have been because my body knew something was not right with this pregnancy.
So I spent weeks in and out of the hospital, and wearing an IV at home full of medication to keep Jude in. Mike who is afraid of needles got rather comfortable with inserting an IV into my leg. Finally I was told I was a "constant contractor" and the medications wouldn't matter. Sure enough they took me off, and I just contracted but never progressed. It was great being in labor for a month with no results....grrr! Anyway, finally the day after labor day we induced, and we all sat around in anticipation, and fear. We weren't sure what would happen when Jude was born. After twelve hours of labor Jude made his appearance screaming, pink, and beautiful. I noticed his head was a bit small, but the doctor still gave him a 9.9 on the apgar. We were thrilled!!! Maybe, our little monkey had beaten the odds, and shown the doctors wrong. Jude immediately started sucking, and was a overall a great baby. Back in our room after the delivery we were flooded with well wishers that had followed our story. Balloons, flowers, baskets, and more poured into our room, and we were beaming with pride. When the pediatrician checked Jude over he got a bill of good health, and we breathed easy...for awhile. We took our bundle of joy home, and we loved on him in peace for the next three months.
During my quest for information on Jude's situation at 20 weeks I had found links to video's showing infantile spasms. At that point, I had read how they were caused by viruses, and such but never read anything on brain abnormalities. I still had seen the video, and the movement was stuck in my head. So one night when Mike had gone to visit his friend Kevin I was alone with Jude. Suddenly Jude's head bobbed, and his mouth came open and he repeated the movement several times. I knew INSTANTLY what this was without any question, but nothing would prepare me for our journey ahead. When Mike was walking through the door I looked at him and without any question I plainly said "the baby is having seizures". The next day we packed Jude's stuff, and we headed to Cooks children's in Fort Worth.
At the hospital Jude underwent his first EEG. We watched them attach electrodes to his head with foul smelling glue, and they then watched him on a video monitor. We felt a bit ill informed, but the nurses were fabulous. Family came to see us, and phone calls poured in. I didn't answer any of the calls though because I wasn't sure what to say. I kept up with my blog as I always do because it is my expression. The next day Jude went for his MRI, and a paramedic went with us to insure Jude's safety. Later the doctor came in with a team trailing behind him. I knew it was bad news........who comes in a team? The doctor told us that Jude was having grand mal seizures, and that his brain abnormalities were extensive. He was missing his corpus callosum, he had a large cyst on the back of his brain, had bilateral closed lipped schizencephaly, and polymicrogyra (forgive my misspelling as I am not a physician). We listened when he said Jude would never walk, talk, or be normal. Then it struck me.......and I asked "Will he survive?". The doctor looked down and said, "Most children like this die in early infancy or early childhood". WHAT????????????????????????? I bawled! I kicked everyone out of the room, and I just sat sobbing rocking my baby. I could deal with a special needs child, but not death, and not seizures! This was not fair.
While I was in the room the original neurosurgeon we had seen came in because he heard about Jude. He reassured us that what happens to our baby will be up to Jude and what he can do, not what anyone tells us will happen. He said he had seen many miracles through that hospital. He also said he disagreed with the polymicrogyra diagnosis.
They then discharged us from the hospital and we left confused, and battered. We had medications with us we had never heard of, introductions to state therapy places with special acronyms, and we were lost. I felt like we were wandering a desert looking for water. I wasn't sure where to go from here. We mourned, went through self pity, and we went through questioning God. Finally, we seemed to settle into what I call our new normal. We accepted we had a challenged child, and we vowed to care for him. We then got level headed enough to question the doctor. How could he say there was no corpus callosum when it was clearly seen before?? Why do his seizures look so much like infantile spasms? So after little contact from the neurologist we decided to change doctors.
This doctor also did a 24 hour video taped eeg. He then sat down with us and EXPLAINED everything in detail. He took the old MRI images and split screened them with the eeg, and the video of Jude's seizures. He pointed to the MRI and showed us where the stroke happened and explained that since our cells come from the choroid Plexus Jude had a migrational disorder. In other words his cells went the wrong direction and his brain formed incorrectly. He also showed us how the problem was much worse on the right than the left. He said there was no "cyst" in the back it was fluid from the cortical thinning (remember the in utero mri?). It all began to make sense. He said he could clearly see the corpus callosum, but it was just thinned, and there was no polymicrogyra. Jude's main issue was the schizencephaly. We watched the eeg as he showed us Jude's seizures start on the right side, and then we compared the eeg to his movements on the video. He said we had him on the wrong medication, and that these were indeed infantile spasms. He nicely told us Jude would never be normal, but that it would be up to Jude regarding how far he will go. He told us Jude does have Cerebral palsy and that walking will be difficult, but possible. I liked his attitude, I liked the time he spent with us, and I liked that he cared for my son. Mike, and I left the hospital knowing we had a special needs child, and knowing we had a long long journey in front of us, but we felt better. It was hard to explain, but we just felt more comfortable.
We now look at Jude with pride, and love him with every bit of ourselves. We are lucky to have Emily who is such a beautiful and thoughtful little girl. We don't take any smile of hers for granted, and we have learned that all she does is special. We appreciate any milestone Jude reaches, and we have a new outlook on life. We get worn out, tired, and sometimes want to give up, but we made a commitment to Jude and we will stand by it!
Thank you to everyone that has supported us through this past 16 months.
So, I tried to eat something while watching his therapy, but still just didn't feel that great. I did get some soup down, and then therapy was over. Mike needed to go to the store to get Jude some formula so Jude and I snuggled into the couch to watch some tv and rest some more. I enjoyed my time with him, and enjoyed my de-stressing time. When Mike got back I told him when I was trying to fall asleep I kept startling myself awake. He said that's a sign of stress which I am attributing my current lack of 100% health to. I am going to work on relaxing a bit more. So, Jude had not had a seizure since 10:30 am and we were beginning to get a bit excited thinking maybe the new medication was already working.
About 7:30 my family dropped by to bring some pizza, a bday cake, and such because we never got to go out for my bday. I was still very tired, but it was great to see them and not have a to cook!!! After they left I once again crashed into bed only for Jude to have an immediate seizure. His seizures went on throughout the night, and we were up straight from about 2:30 - 4. Once we fell back to sleep Em came down about 5am letting me know she wasn't feeling well. So Em is at home today, and Mike needed to get out and do some chores. He said he can wait until tomorrow though. We are exhausted, but relaxing yesterday and getting a nap in made all the difference in the world!!!! If I had gone a week with no sleep I think I would have been hearing voices in my head :). I am very glad I made the decision to go home yesterday.
So we are slowly introducing the Depakote to Jude, and we will be increasing his dosage on Friday. I am hoping that the stretch between his seizures gets less and less. I am beginning to allow myself the right to imagine a seizure free lifestyle. We would no longer have to worry about seizures affecting Jude, going out in public, etc etc. It would be like experiencing a normal life again. I am PRAYING this medication works!!! I really feel like we have earned a break. Mike said last night that his mother always tells him "Michael, God is pruning you for something special", he said he told her "Mom if I was a tree I would be a stick because I have been pruned so much!". He cracks me up!
I am looking forward to the weekend, and still want to work outside in the garden.
Tuesday, March 24, 2009
Yesterday I picked up Jude's Depakote. The doctor had given Mike a card to waive our $60 co-pay. It is a program Depakote is sponsoring so people will not try to get generic. We were told from the start you NEVER get generic in seizure medications. Anyway, so first off the lovely lady at the pharmacy told Mike it would be an hour and a half wait to get the meds, due to being busy and because they need to process the card. So Mike dropped everything off to her, and I went by to pick it up after work. We normally use a compound pharmacy by my office, but since Mike was coming from Plano he just dropped everything off to a local well known pharmacy. When I went by the lady, couldn't find the meds, then she couldn't find the card, then the card wouldn't work. ARGH! She finally just said because the prescription was labeled "Depakote sprinkles" vs "Depakote" they wouldn't waive the co-pay. REALLY???? I explained that the sprinkles are just the form of the capsules so a BABY COULD TAKE IT! Anyway, I was angry and took the medication after paying yet another $60. Hence the reason why I use the compound pharmacy!!!
So I get home, and I start reading the warning label on the front of the medication. In bold it says "RARELY, serious and fatal liver complications arise, but this is more seen in children under the age of two that are on other seizure medications, or have brain abnormalities". ARGH ... again! I understand the is more of a metabolic issue I am sure, but we have no idea of any other problems Jude has. I know the doctor is doing what he thinks is best, but this is Jude we are talking about. I just hate medication! So we gave it to him, but then I mentioned to Mike that maybe we shouldn't include the topamax too. We aren't doctors though, and that just upset Mike, which I can understand because it places everything on his shoulders if something goes wrong. It's just so nerve racking, but we followed the doctors orders! Anyway, it is going to take awhile for the medication to get into Jude's system so we did not expect a seizure free night. I am glad we didn't because Jude had a seizure a 1, 3, and 5! Mike got up with him since I was the up the night before, but I was still awake each time. I am EXHAUSTED, and just asked my boss if I could leave early. I never do that so I doubt it will be a problem.
So I am working away, and then I am heading home. I think a few Zzzzz's will do some good. I did hear back from the MDCP dept regarding Jude's approval. We are setting up the nursing home stay, and then we will be approved. Jocalyn girl, I tried but even her supervisor wouldn't approve us not having to wait thirty days... grrrr.
I hope everyone has a great Tuesday. We are praying that Jude shows improvement today. Thanks for the prayers, and reading about our family!!! Oh and Emily has softball tomorrow and Thursday so we are looking forward to getting out in the sunshine!!!
PS ~ I heard from a mother who found my blog who's son has bilateral schizencephaly just like Jude!! She was so nice, and even showed me pictures of her son. He is so cute, and has dark hair like Jude. He is older, and her little boy gave me a lot of hope! He walks, talks, etc. She said he is delayed but has done a lot more than the doctor's ever thought he would.
Monday, March 23, 2009
So I received a call today that Jude was approved for the MDCP, and that all the final paperwork is in. They asked me to find the nursing home we want to stay at over night for our qualification, and to pick a home health agency. She said that for thirty days we must go through the home health agency, and then we can take over being the payee to the provider. Since Mike's mom is going to be our sitter she has to go through a TB test, and other crazy requests. I am a bit overwhelmed with all of this today, and I am unsure what steps to take. To be honest with you I am unsure exactly what all this program will cover. I am told it's wonderful though, and that we won't have to pay out of pocket for medical anymore. Now, if this could have happened 10k ago that would have been great...ha! We are thankful though. It sounds like it will be a couple more weeks until this is all in place, but at least we are moving forward.
On another note we have to pick someone to be Jude's guardian in the event of our deaths. This has been a struggle for us because we are not just asking someone to take our child, we are asking someone to take a special needs child. I have an abundance of life insurance so the party would have financial security for him, but still. So I think we came to a conclusion, and we plan to talk to that party tonight. We must then get a will drawn up, and change our beneficiaries.
Anyway, I am looking forward to going home, and seeing my family.
So Jude's big doctor appointment with his neurosurgeon is today. I am not going to be able to make it due to work so Mike will be making the long trip out to Plano today. I just emailed him some questions to present to the doctor. Here are a few. ...
1. Is there a way to have ECI increase the amount of therapy Jude is getting from once a week to twice a week?
2. In the doctors opinion which is worse the seizures or the seizure meds and why?
3. Would it be beneficial to check Jude's liver enzymes prior to giving him the depakote (it can cause severe liver issues)
I will be sure to update when I heard back from his visit.
So it's Monday again, and I am back at work. I am going to make it a good week though. I am getting back into my work out routine tomorrow and not deviating from it. I am going to work on my garden at home, and just relax with the family.
So I did take some pictures this weekend. While we were at Em's softball practice Mike snapped a picture in the car showing how well Jude is starting to hold his head up on his own:
Mike also decided to teach Jude how to drive:
Then Emily decided to help Jude learn how to walk. The fact that Jude lifts his leg is a very good sign.
Well my phones are ringing off the hook so I better go
Sunday, March 22, 2009
So tonight when I got home I had tivo'd Extreme Home Makeover. I would like to tell you a little history here. I joined a website called just mommies when I found out I was pregnant. Through the Internet I met wonderful women who shared their joys, questions, fears, and more. We began to know each other on a first name basis, began to learn each others due dates, and oogled over everyone's sonograms. Just mommies incorporates many mothers from others countries so I learned about many women in many settings. We had what's called a "due date club", marked with the year and month you were to deliver. I noticed with some investigation that it seemed that a couple of the moms would drop out of each monthly due date club (we visited other groups) due to miscarriage, one or two might deliver early, and one or two had babies with issues. Even though you don't want to see any child with issues, no one ever thinks it will be their child that's affected. There were a couple from my group, but the other baby that stands out with Jude is Maggie. Not long after Maggie was born she was rushed to the hospital with severe blood issues, and it turned out she had "Diamond Blackfan Anemia". This issue is SO rare that only 750 people in the WORLD have it! Well tonight's Extreme home makeover was based on one of those people, a young girl. So I figured Maggies mom was glued to her TV tonight, and I went to her website to email her letting her know I watched. Well Maggie's mom was supposed to be watching, but Maggie is in the hospital again (she was taken in today), so if you have some time a few prayers for her would be great. Here is her caring bridge site: http://www.caringbridge.org/visit/maggierudnicki. Please remember that giving blood can help babies like Maggie!! Who knows....maybe giving blood can help stroke victims like Jude at some point too. Thank you for your prayers for her, and for giving your time. My challenge is to get at least 5 people to donate their blood this week to help babies in need! I really want to donate, but because of my platelet disorder, they turn me away. So please if you can donate please do!
So.............. I owe I owe so it's off to work I go tomorrow. Have a good week.
Saturday, March 21, 2009
Mike and I both understand that Jude's failure to stop his seizures means they will try a new medication, at his follow up visit to the doctor on Monday. The medications that lay ahead for Jude are laced with possible side effects. Mike, and I talked again about whether to medicate or not. A lack of medication can cause an increase in seizures, which create a lack of development, which can create a failure to thrive. Then again the medications, as we have seen fail to work, and thus just create issues in themselves. Sometimes we search for answers in life, and are unsure where to find those answers. We have faith though that someday we will find what helps our Juders. Then again....maybe we won't...but we will still go on.
We miss Em tonight, but I know she is having fun with Faith. We were suppose to go to my aunts lakehouse tomorrow, but I am afraid we are not going to be able to go. The poor girl had to go see a family member in the hospital in Waco. I am hoping to spend the day cleaning up our yard.
Good night all.
After his huge paint job in Stephenville Mike allowed himself to get one "toy". I think it's needed because he stays in the house all the time with Jude, and he did work very hard on this job. So he got himself a little race car that's remote controlled, and he was like a little boy waiting for his ebay delivery today. He was so disappointed whenever he got home and it wasn't here. I guess boy will be boys. Although to his surprise the post man came back and dropped his package off about two. So he had his great delivery and was ready to play.....BUT was then hauled off to trade days with me...(smile). Trade days is basically a huge garage sale in Texas motor speedway. My friend Michelle (Fleck), and Greg went with us. It was nice to walk around in the sunshine. We got some great, like Em got a tye dye shirt for only 25 cents. It was a nice relaxing day, even though Jude had a seizure in the middle of the market place. It's almost like we are accustomed to the issues that Jude has, and we are equipped to handle the situation. We don't like it, but we handle it, and we shield him from others. Anyway, Fleck got some great deals on some iron turtles for her garden. This great iron place was there, and most everything including LARGE iron crosses were only $2 - $4...you just cannot beat that. I know it sounds so lame, but a nice day of walking around in the sun looking for bargain deals is a great day to me.
Have a nice weekend.
Friday, March 20, 2009
Here he is all ready to go:
So while walking Emily and I both noticed how responsive Jude seemed to be to being outdoors. He was making little noises, moving his feet, and just seemed generally interested. So we continued to walk, and Jude watched Emily ride her bike around. When we got back to the house to go in Emily walked up to talk to Jude, and I heard her shout "Mommy he smiled...REALLY BIG!". So I looked over just in time to see this HUGE smile spread across Jude's face...and my heart stopped. I tried to get him to do it again, but he wouldn't perform on cue. I was so proud though. We then went in, and Jude hungrily ate up a full bottle.
On top of that wonderful walk Jude did not have one seizure last night. Mike, and I finally got some sleep. So far today he has not seized either so we are crossing our fingers.
Here are some shots of the kids:
Thursday, March 19, 2009
So I am sure you guys heard the horrible news that Natasha Richardson died from head trauma in a ski accident. They announced that on the news last night, and showed a picture of her from the parent trap. Emily was devastated, but I think it was not because Natasha was in a movie Emily enjoyed but because Natasha was a mother. Em said, "I bet her children are heart broken", such a grown up statement from a little girl. So when Em was going to bed she was a bit frazzled from that, and from Jude. She was a bit teary, and said that her friends are normally around but aren't due to spring break therefore she is inside more and sees Jude's seizures more. I explained to her that we just have to accept Jude the way he is even though the seizures are very difficult to watch. Mike then went back into her room a bit later, and explained how we will be trying some new medication soon to stop these nasty seizures. This seemed to put Em at ease a bit. She was also mad because I had told her she needed to clean up her room today and we would make some stepping stones tonight. So a little grown up girl, pre teen emotions, and genuine heartache.
So Sarah is on vacation, but the phones are not to busy. I am about to finish all my little work up that I can never get to when we are slammed.
Wednesday, March 18, 2009
Anyway, so I am now at work and determined to get through all my renewal calls today. Before I leave you though I would like to share a piece of artwork Emily did. She calls it "Jude's eyes". He does have one eye that is a little larger so I was impressed with her picture. She said that all the items behind his eyes are inspirational. Gotta love Em!
Tuesday, March 17, 2009
Jude was fairly grumpy tonight, and seemed very uneasy. When falling asleep his entire body would jerk, and his eyes would pop wide open...but he would not seize. Since he was so restless he would never truly fall asleep. Thus creating more issues from being over tired, and he finally started seizing about an hour ago. I believe it's one of those nights that he needs to catch up on sleep so I gave him a tiny 1 ml of klonopin. He had four seizures this afternoon total, and his little body is tired...so tired. The klonnopin will insured that he will have a good nights sleep....even through his poor dads coughing. Jude is currently in his swing and is sleeping well. I hope this will give him a shot for a good day tomorrow. Sometimes he has so many seizures that I believe they take over, and never give his body a chance to physically catch up . We all know that rest is essential to stay healthy and learn. Jude needs this occasionally, and tonight I am taking over and making sure that happens!
I actually started out the day very positive, and working diligently. Since that time my sick husband has become increasingly more agitated because he is not feeling well. I am picking up items he was going to do so after work today I need to drop some tables off, pick up a prescription, go by the store to get formula, and cook dinner, so it sounds like it will be a late night. I don't mind doing any of those items though, and Em and I will get time together in the car. I am however disappointed I won't have more time with Jude. I feel horrible for my ailing hubby, but also sit back and wonder about being a mom. It seems that since becoming a mother I cannot really take a sick day. Even while in the hospital in pre term labor my boss was calling, and my husband was calling about Em throwing up. Truly women.........do you ever notice this? Is this just me being difficult? Does it seem that as moms if you call into work because you feel like the gum on the bottom of the devils shoe that you still cannot rest? At some point during that day you know you are getting up to do something....admit it. It's actually rather comical. Someone is coming in to wake your butt up even if they are reviving you on the operating table, and you know it. Come on COMPLAIN with me........I cannot be positive all the time people! ha! I do adore my husband so I just had to laugh at the fact that he is a man, and sometimes being sick is overwhelming.
Jude had several seizures last night, and Mike is not feeling well. So I have one man on my right snoring and upset, and the other little man seizing on my left. Mike and I discussed the fact that the only time Jude slept through the entire night was when he had the sedative prior to sleeping. I am going to talk to the doctor about this, and see what he thinks about the situation. So I mentioned Mike was sick. What is it in men that makes them 100% impossible when they are sick? Why can women work, run a house, etc and not be down right terrible when we are sick? Is it just in our genes? Come on men admit it.........you KNOW you are a pain when you are sick!! We try to do everything we can for you, but for some reason we become your target for some reason. Maybe you blame us for catching a cold? Anyway, hugs and smiles to my husband because I know he feels rotten.
So Emily comes home today, and I cannot wait! I am very anxious to see her. I miss her smiling face whenever she is gone. I am about to text her father to see when we can meet up. I am hoping he might bring her by my work.
So our new receptionist started today.....yes my boss let the other one go. Anyway, she is someone I know, and so far she sounds wonderful on the phone. It's a relief to have someone here that I know will be able to help.
Monday, March 16, 2009
Mike said Jude had a seizure about 3:40, and he was now fast asleep. I feel sorry for my little monkey, and I hope we can someday get control of these nasty seizures.
I still have later payments to call before I can go home so I am making this short.
I am going to post a pic of Jude right after his bath. He is NEVER happy when you take him out of the warm water.
Sunday, March 15, 2009
So today I had worked hard to slow cook a post roast. I found a great recipe that included browning the pot roast in red onions, and red wine, and then transferring the master piece to a slow cooker. About thirty minutes into my creation I heard a loud BANG, and then fire shot out of my slow cooker.........yep the sucker EXPLODED! I am so glad I was at home. I am now afraid of Slow cookers! I had a nasty mess to clean up but I was glad I was here.
Then to top the night off we have introduced some pureed chicken to Jude's diet. He is almost 7 months, and has been eating peas and carrots for some time. I decided to give him some protein, and suddenly about two hours ago he started crying at the top of his lungs. Jude rarely cries, and if he does it doesn't last as long as this episode did. Suddenly, Jude broke out into a striped rash across his stomach. Who has an allergic reaction to chicken? Plus, would you like to know the weird twist in this story? Jude has been seizure free ALL DAY! He hasn't had one seizure since his 4:30 am seizure I referenced earlier. He had some chicken for breakfast, and dinner. So did the added protein help?
Anyway, Jude seems to be okay now, and the kitchen is under control. We are now back to normal again.
On Friday night my cousin came over for taco's, and last night my friend Michelle came over for dinner too. Both of them commented on how alert Jude seems since coming off the pheno. Both made reference to the fact that Jude will look you directly in the eyes when you talk to him now. I found comfort in the fact that they both noticed this.
I am watching Jude on his colorful Einstein mat right now, and I am watching his tiny hand "Reach" for his star. I hold out hope that he is indeed reaching for it, and it's not an involuntary movement.
I am keeping it short today, and will write more tomorrow. I am off to hang out with my handsome boy. Em is at her daddy's, and I just talked with her. She seems to be having a great time.
Friday, March 13, 2009
"Oh Jude not again! You see Jude, my brother has brain problems, he is only five months old. He is about to have another seizure, and those aren't good. It's sad to watch, but when I am sad Mr C helps me. Mr C inspired me because he helps kids like my brother.
Mr C shows pictures of kids at his camp, and it reminds me of Jude. That inspires me to be more involved with special needs kids.
Sometimes Jude has to go to Cooks Childrens Hospital where Mr C volunteers. They have always been very nice to Jude, and me. We saw Santa there, and Jude got a monkey in a Santa suit. I kind of felt jealous, but I was happy for him at the same time.
Mr C, and Jude inspire me, when Mr C tells me about some kid with cancer I start to cry. I have learned about cancer, and that Leukemia is a bad disease. When he tells stories about children with cancer, and how they are not afraid, this inspires me. They are glad just to go to the playroom in the hospital. So when I was at Cooks and saw one kid that could not leave his room it made me feel good to give him a friendly smile like saying "hello".
Sometimes when I am sad I find myself thinking of Jude. Mom says that if Jude wasn't born she wouldn't have seen how much it takes to be put together. Maybe I will inspire Jude someday."
TEAR! She then wrote Mike, Jude, and I little individual notes about how much she loves us, and why. She said she loves me because I do everything for her, love her, and I am a bit crazy sometimes (but not as crazy as Mikey). I got a big kick out of that. So my little one wrote a paper that made Mike and I both tear up on our way into see her classroom. She is a little inspiration herself.
Have a great day.
Thursday, March 12, 2009
So I do have a funny, but not so funny story. Last night I was tired when I got home but I still got dinner ready, etc, then went to take my bath. Once I got out Emily saw me and slowly walked over to me.
She said, "Mom your old"
Me "Thanks Em, but I am not old"
Em "Well you look old, I mean you just look different"
Me" Thanks for the self esteem booster"
Em "Well sorry, but you look old!"
Me "I am tired Em and this year has been hard on me so I probably do look older"
Em "Well I still love you"
Thanks now let me pull your pony tail! Little stinker......speaks the truth though and I know it. I am tired. I have dark circles under my eyes, my eyes are blood shot, I slick my hair back in a pony tail most everyday, and I am white as a ghost. Gone are the days of my fancy pedicures, tanning beds, beautiful straight hair, and fancy clothes. It is important to me though that Mike and I go out every now and then. It gives me the chance to dress up, and put effort into myself. I like to look pretty, and I like to look pretty for my husband. So even though I have to force Mike to go out I do think it's important to find some resemblance of the vivacious girl I was.
Smiles and have a good day!
Wednesday, March 11, 2009
It has been a very busy week already, and it is throwing us a bit off our normal routine. Emily has been saving her birthday money for some time now, and decided she needs a new bike. So Monday night we went and looked for bikes, trying them out, riding through the store, etc but she didn't pick one. So last night we had open house at her school, and then more bike shopping. Although, she did end up picking a new riding machine last night and a helmet with a dragon on it. YEP A DRAGON! I picked out this great white helmet with pink airbrush writing. It looked like the old skateboards with the airbrushed artwork....but NO! (No worries guys these are the army looking helmets that are cute). Anyway, my darling daughter doesn't want anything to do with pink she wants the dark green army helmet with the big dragon across the back...sigh. It's her money though so I let her decide which one she wanted. Emily was very proud of herself when she made her first big purchase. She wheeled her new shiny blue bike to the front with the devil helmet hanging on the handle bar, and smiled big to the cashier. She announced "Here is my $100 bike", loudly. Mike and I tried to control our laughter, and just patted her on her back. She then hopped in the truck and immediately called her dad to tell him about her accomplishment. Mike then talked to her about taking care of her new possession which she vigorously shook her head yes to each rule.
After we got home, Emily went to bed, and I fed Jude. After I changed him I went to lay him on the bed to change him and Jude wiggled his legs fast, and GIGGLED out loud!! I was stunned, and called Mike but Jude refused to perform on demand. I then changed him into some new pajamas, and held him for a bit. Then I asked Mike to take him, but we sparred off on staying home, working ,etc. I think deviating from our normal routine can create stress around us sometimes. We are deviating again tonight because we are going to dinner with my family for a late bday celebration. I am hoping we can keep up with the week. We will get a relaxful weekend though, and Emily is going with her dad for a portion of her spring break. I will miss her very much, but I guess it's important Mike and I have some time together too. So after our mini UFC fight in the living room we ventured upstairs to watch Heroes. Nearing the end of our show Jude started twitching like he was going to seize, but I held him close and he stopped. I was rather happy thinking that maybe I was able to ward away the evil seizure, but I am afraid it attacked him anyway. Jude had a loud violent seizure which took away his energy. He went fast asleep afterwards. You can see how tired he looks here right after it ended.
So I am still thrilled that we were able to meet Jocalyn. Kendall, and their family. Sometimes being a mother of a disabled child makes you feel like you are on an island all by yourself. It's hard to explain the emotions, and fears you have to to hear someone that understands is comforting. You wish they didn't have to suffer through what you do, but you are grateful for their company. I noticed many similarities between Kendall, and Jude from the way they position their heads, to other characteristics. I hope we can all remain friends throughout our long journey ahead. It would be nice to be able to support each other.
So I am off for yet another busy day at work, but I did have to share my creativity and see what you think. For some extra $$ I have been making invites, announcements, and such on the side. My friend Sarah makes awesome magnets and she inspired me. I made these for some friends. I just love doing things like this, and trying to be artistic (ha). What do you think??
My sisters Save the date: