Hospital update

Good morning everyone. We are all settled in at Dallas Medical city, and let me tell you this hospital is fabulous! When we walked in we were staring in amazement because it literally looks like a hotel. On top of that the nurses, and staff are very friendly. They explained our deductible, and then just smiled and said it would be taken care of in time. They also ordered Mike and I 3 meals a day, and snacks any time. We have full access to free sodas, etc so we are very impressed. We probably spent $100 in full alone when we were at the other hospital, not that there is anything wrong with that, I just thought it was nice they took care of us here. So last night when we got here I started feeling really sickly for some reason, and was freezing. I think I was worn out from everything going on, and I KEPT complaining I was cold. Mike kept telling me I must be getting sick because it wasn't cold in our room. Well about 4am when he realized he was really cold he noticed a window was open behind our curtain....so I am NOT crazy.

So I just wanted to put in a quick update letting you know that we MAY get to go home today. The doctor just came in, and said they caught 4 seizures last night so they may have enough information. We knew of two violent seizures, so that means they caught two that we weren't able to see externally. We have been wondering for some time if Jude was seizing at times, and we couldn't tell. The two violent seizures were so bad that the doctor said the nurses called him panicked and crying. They wanted him to come up here, and see Jude. We kept telling the nurses that this is what we deal with everyday, but they were very disturbed. The doctor explained this morning they just aren't used to seeing these violent seizures in an infant. They still have to find which medication is best so my thoughts are they may keep us awhile after they administer the first dose. It would be very nice to get to go home, and sleep in our own bed. Jude has been sleeping most of the morning because the seizures exhausted him. I will keep everyone updated. The doctor should be coming in soon so I am going to go. He is reviewing the MRI that was done in December to see if he concurs, and reviewing the entire EEG from last night. He said he is going to sit down and point everything out to us and explain every facet of each test in detail.

Follow up to the birthday blues

Mike and Jude did show up to take me on my birthday lunch. After a quick trek to the bank we headed to eat some barbecue at my favorite hole in the wall diner. Halfway through our meal I looked over to see Jude's eyes following the seizure path and beginning to flicker. I was pretty much done with eating, so I asked Mike if we could go. We quickly scooped Jude up, and got him in the truck just in time to hear his scream, and cries. I sat in the back with him on our way to the office, and then took him inside to get him out of his car seat. As I walked in I saw a customer standing in the back with Sarah so I quickly made my way to my office, and closed the door. It was a sad scene, but one we are very used to.

About the time Jude's seizure ended my boss did a poor job of sneaking by with a cake. So we all sat back and had a slice of cake, and then my cousin showed up. She had brought me a purse, and a sweat suit to wear at the hospital this weekend. So I saw there holding little Jude as he twitched just a bit longer (this one probably lasted 30 mins total), but also felt thankful for our friends and family. The people that are around us on a consistent basis understand Jude's seizures and how they work. There is no big fuss anymore, some occasional tears, and just acceptance. Our lives move on, and we deal with what is put before us.

Hospital day, and I am older than a redwood day

Last night I went home, and got everything together to check into the hospital tonight. When I was walking down the stairs I passed the front door where I had carefully placed all of Jude's items I wouldn't forget anything. I stopped and stared at his little blue suitcase, and the scene seemed a bit surreal. I wasn't going on a vacation with him, no we were checking into the hospital again.

I am a little more prepared this time though, and I know the items to bring. A soft blanket for Jude because the hospitals are thin, warm socks, pj's that button up, and shampoo. They provide the pre-mixed formula, and diapers which is nice. For myself, I need a warm blanket, pillow, shampoo, and comfy clothes.

Since being decreased on the pheno Jude seems so much more alert! He is looking around more, turning towards our voices, and is keeping his head up pretty well. So the other night I decided to give him a bath in the sink like you do with all babies at some point. Ugh, I am afraid I got ahead of myself in hopes because his little head hit the sink. It wasn't bad, but still I felt horrible. He is getting much better at sitting on my hip and keeping his head up. At times I forget, or rather allow myself to forget, Jude has issues and just enjoy him being a baby. He will then have a seizure, and it's a grim reminder that he isn't like every other baby. Last night about 9:30 he had a really bad seizure. I was a bit concerned because it lasted so long, and was so violent. Even though we have decreased the pheno the seizures have decreased too, although they are stronger when he has one. So it's the age old question of to medicate or not to medicate. Hopefully, the new medication they pick this weekend will still allow him to be alert.

I could go on and on today because I am a flood of emotions, and questions. So I will stop so I don't ramble for hours. Mike, and Jude are coming to take me to lunch for my Bday, and I am excited about seeing them. I will updated from the hospital when I can.

My little space monkey

Mike took a picture the other day of Jude having his 2 hour EEG. I thought I would share that this is what it will be like this weekend. It looks terrible, but Jude really doesn't mind plus he is still very cute even with the tape.

Thursday

I had a good night with Jude. He is so much more alert off the phenobarbitol, and really looks at me a lot more. I am afraid he did have a seizure at 7:22, and another one around midnight. He slept through the night again though, and didn't have a seizure this morning. He is with his grandma Suzy again, and I am about to call and check in on him. So tonight I have to pack Jude for the hospital, pack Em for her dads, and pack myself for the hospital.

I received a birthday check yesterday from my grandmother, and aunt...woo woo! We now have enough to go on our vacation in April. We are going to a cabin in Arkansas for a few days with my family, and I am so excited!! I will be sure to take lots of pictures there. I am glad we are going because I am ready to move our life forward with Jude, while paying the best attention we can to his medical needs.

So I just posted a question on facebook... "I need 500k to start my dream business.... any takers?". I got some funny responses which is what I was going for. One friend replied, "That's a HALF a mil!". I said "Yes, I just figured I would spare no expense". ha ha

Have a good day all

The busy bee stung me

Well we have been very busy at work again so I am just now posting. Jude did pretty well last night. He had a seizure about 7:55pm, and it was a strong one. Although, he slept through the night without any incident, and this AFTER we have lowered his pheno. He then went through most of the morning, and finally had a seizure attack about 12:30. He is back at Mike's moms again today, and she called after the seizure was complete. I can hear the stress in her voice, and I just try to assure her that Jude does not remember the seizure. I do have to throw in that the new neurologist confirmed my fears that Jude's crying during his seizure is pain. The other neurologist told us that it was a part of the seizure. The new doctor disagrees, and said it's equivalent to Jude being poked with something that hurts over and over. It becomes frustrating, and his little body begins to hurt.....dam$ seizures! We have also noticed that Jude is a little more alert, and a little more cranky since the pheno has been lowered.

I am currently waiting on the hospital to return my call about our admission on Friday night. So therefore, I am going to post some pictures from this past weekend, and keep this report brief.

My mommy thinks it's cute to wrap me in the fluffy Cowboys blanket:


Jude meeting with his therapist at our house. She makes him hold his hands open, and he gets very aggravated with her. I am not sure if you can tell in the photo. It's actually a bit encouraging to us because he shows emotion.


Have I mentioned Jude LOVES his chair?? I made the cutest thank you notes up to send out for his lil chair...just wait!!!


So I have mentioned on here that Mike is painting a new custom home in Stephenville. Well, we went up there as a family this past Sunday to see the work he had been doing. We also looked around at the pretty country, and we even stopped at a little winery. For $5 the people at the winery let us taste their different brands. Then we walked around looking at their land, grapevines, and such. It was a nice day away......until Jude had a seizure....but still overall a nice break. So here are some photo's from that day....

Em took this with her camera. The countryside outside the house.


Myself and Em


Jude's turn with Mom


Outside the little winery


Wait....where is daddy during all this? Oh yeah taking Jude to the car. He always is in charge of car seat duty.

Whew

I have been so busy at work today. I am finally taking a break so I can update my blog. I had the best intentions of uploading some great pictures of Jude to share with everyone, but I left the camera laying on the counter this morning. It is another crazy day in our life because Mike had to finish his paint job up out of town. So therefore, I have to pick Jude up from his moms after work, and then grab Emily as quickly as possible. I am a bit concerned about Jude being with Mike's mom today, because it's his first day with the lower phenobarbitol. Therefore, there is a concern that he might seize more. I did check on him earlier, and he had not had any since the one he had with us at home around 7:00am. Jude was a bit restless last night without his pheno, but finally went to sleep. Mike said Jude had a seizure about 11:30PM, and I was helping with him....but I must have been exhausted, and remember little of that. So we will be following the new doctors calendar in lowering Jude off the pheno throughout the rest of the week. The doctor will then review Jude's eeg this weekend remove the pheno, and topamax completely, and decide which medication to put him on. They mentioned Depokate, or a steroid medication. He said he believes Topamax does little for the seizures Jude is having, but then said each doctor has his own opinion. He said since Med school he has stated topamax and pheno do nothing for IS. I don't really believe anything now until I see results, because each child seems to be different in what they respond to. So I will update this weekend from the hospital which medication they choose for him, and how he is doing coming off the other meds.

Jude seemed so much more alert yesterday, and I really enjoyed my day with him. I am so down at work thinking about his squishy cheeks and bright eyes. I want to be home caring for him as a mom should be. It's such a struggle between doing what is right, being thankful for my job, and wanting to run home to Jude. It's really such a mental struggle I am dealing with right now...so much so that it's hard to put into words.

So over the past month I have been cleaning out my garage with Mike, emptying closets, collecting clothes, because I planned on having a garage sale. I thought it would be a great way to get us extra money to get out of dodge for a weekend, and to pay on our bill with Cooks. Well I can have a garage sale, but I found out my city only allows 1 sign. Yep that's right folks........1 sign, and it has to be placed in YOUR front yard. I guess that's just in case the people passing by don't realize that all the junk sitting in your driveway with the stickers on is for sale. I mean REALLY??????? I would like to find the person that created that rule, and give them their sign for the day.

Neurologist update

I started the adventure of finding a new neurologist with what seemed to be the unrealistic hopes of finding a doctor that truly cared. Boy, did we get lucky!!! The nurse was fabulous, and the doctor was even better. He spent TWO hours with us alone just in the room going over paperwork, answering our questions, and giving Jude a check up. He checked his vision, tracking, hearing, looked in his ears, checked his skin, did a full family history, and more. He said he ultimately believes that Jude has Infantile spasms mixed with a tonic motion. This is aggravating news for us because we have been treating him for a different type of seizure. Although the spasms can change, and Jude's spasms could look different and could have been hard to catch. He pointed out to us what I had said before that the other doctor noted that Jude's EEG had confused him, and he could not be sure of the diagnosis. Yet our issue was our next appointment with him was in five months!!! This doctor got his two hour eeg out and explained the lines, and what they meant. He showed where Jude's brain activity would peak several times a second, and said "that's good!!". He then showed us flat lines and well anyone knows any time you get a flat line it isn't good in a heart or a brain. He said "that's not good, and if it continues he could never develop". We may never be able to do anything about his flat lines but this doctor said "I treat seizures and spasms aggressively because he cannot have the best shot at life while the spasms aren't under control. That's what I am here to do, regardless of his disabilities to give him the best shot at life". He then said just based on his check up he thinks Jude uses one side of his brain more than the other. "Yes yes" I shouted, "that's right one side is better than the other side". The eeg had shown that before, and he could tell that Jude's left brain was affected more from the stroke and therefore his right side is affected on the outside. Jude did track the doctors red bag on his strong side, turned towards noise on his strong side, and more. I was very pleased with Jude, and the doctor was too. He said "there is always hope don't let anyone tell you otherwise". So the doctor wants to take him off the medications the other neurologist had him on. Therefore, we are checking into medical city this Friday for a new 2 day EEG, and to be weaned off the pheno and topamax. They are then going to find the best new medication based on the EEG. The doctor asked us several times if we had any questions, and handed us his card telling us to call any time of day or night if we need help. YOUR HIRED! HIRED I SAY HIRED! He may not ever can cure Jude, but he has a heart and he listened. Mike turned to me and said he felt like he got a piece of himself back, and teared up. He said he just wanted to know that if Jude left us at some point he did all he could for him. Sooooooooooooooooooo I may be spending my birthday in a hospital, but it will be with Jude and SO SO worth it. I got the best bday present a doctor that listens.

I know this blog is very rushed, and it may not make total sense. I am in a hurry as ECI is coming. This will be my first session with ECI being here because I am always at work. It has been a very busy day off work. So if you have any questions as a way, and I will update more later. I will update from the hospital this weekend too.

Tomorrow Tomorrow

It has overall been a good weekend, and I have so much to report. Although, I am afraid seizures rained on our parade today, as Jude is now on his fourth seizure of the day. I wanted to give you guys a quick update so no one would worry. I don't have much time to blog so I will save all my pictures, and my long update for tomorrow after Jude's new neurologist visit. I hope everyone had a safe, and wonderful weekend.

I will give you this tid bit of information. On Friday night Jude was laying in my arms, and Mike was across the living room from us in another chair. He would call Jude's name, and on 4 different occasions Jude would slowly turn his head, and look directly at Mike. I would think it was a fluke, but based on FOUR different times... I am convinced Jude knew what was going on. He turned his head slowly, and wobbly, but he still turned towards the person calling his name. That person being a voice he hears everyday, and one he loves. He would then slowly turn his head back towards me, until Mike called his name again. After reading his EEG information this weekend we learned that Jude's left brain is not responding at all, so maybe the right side is compensating??

I will post more tomorrow. Jude has finally fallen asleep while wrapped up snuggly in a Dallas Cowboys blanket. I am going to whisk him away to bed. I of course, got pictures of him looking very comfy in his blanket ;)

EEG update

The EEG went well. Mike sent me a picture of Jude wrapped up like a little space monkey in all his equipment. While there the tech told Mike that he thought Jude's seizure could be infantile spasms. I don't believe this because I have watched video's of these and video's of the type of seizure Jude has. I could be wrong, but I doubt it. They did say however they are not sure Jude is actually getting a break when we think he is during the seizure. They believe he may be having one long seizure so that's disturbing. So far we do like this team, and we were assured the doctor we will see on Monday has extensive experience in this field. I will let you know on Monday what they said, and what our next course of action is.

EEG

Mike, and Jude are on their way to get Jude's EEG done. I hate all the electrodes they have to put in his head with that nasty smelling stuff, but it will be good to get another test done. I had requested a copy of the medical records from Cook's yesterday, and one of the papers was the EEG results. In that report the doctor stated he couldn't be sure that what Jude was experiencing were "tonic" seizures, but he believed they were. That is rather aggravating because we were told they WERE tonic without any question. So I am even more relieved that he is having another EEG today.

I just heard back from the new neurologists office, and they want us there Monday morning for our appt. They have really stepped up the pace, but now a little to fast. I am hoping my work doesn't blow a gasket that I am giving them such short notice to be off Monday. I am sure it will be fine, but we have a small office and everyone is affected when someone is out. The lady that schedules the appointments also asked me if Jude slept last night and then scolded me because he did. She said it is suppose to be an EEG with limited Sleep. Let me just tell you that she is not the brightest crayon in the box. I had already told her he was an infant, and she keeps calling him Jud vs. Jude. I said again slowly, "He is an I N F A N T....if I did jumping jacks with him he still would have slept". So of course, Mike walked in and asked the nurse if it was an issue he slept and the nurse replied..."Of course not". So I think the appointment lady was ill informed.

So I am just sitting, and waiting to hear from Mike on the progress of the EEG. We should have the results on Monday, and I will let you guys know what they say.

So on another note my precious little daughter got in trouble at school yesterday. I was at work, and received a phone call from the PRINCIPAL that Emily was in her office. She said that Emily had 6 assignments missing, and was in danger of failing the six weeks...my daughter?? My Em?? She then said that the teacher had been searching for her missing work, and found 10-15 notes in her desk that she and two other girls participated in. I was then told the notes had "inappropriate" language...WHAT???? I asked the principal if any of the bad words were in Emily's hand writing, and I was told "no". I was FURIOUS and marching around my office just seething to leave, and have a good old fashioned talk with my little one. I just couldn't believe this. So I put a call into her teacher because I wanted to hear exactly what the notes said. Her teacher told me it wasn't Emily who was missing any assignments, and she didn't participate in any notes that had bad language. Her notes were answers to questions like if she liked some boy, or if she was going to the district meet, etc... innocent little girl stuff. Her teacher then said Emily had walked around crying all day, and looked exhausted. When I got home Em was asleep on her bed because she had been stressed, and I went to talk with her. I told her I was proud she had her work in, proud she didn't participate in the bad language, but disappointed she passed notes. That passing notes in class is disrespectful to her teacher, and probably hurt his feelings. She adores her teacher so she burst into tears again. (All this knowing full well I passed notes in class...sigh....but I had to make a point) So Emily got grounded for the first time. Later that night she was following me around the house. I turned and asked, "Emily why are you following me around". Her reply "Cause I am bored". My reply, "Well I am not grounded so I am going to watch Tv therefore you need to find something to do in your room...like read". She stomped off growling that being grounded "STINKS!". Which in reply I said "If you can't do the time don't do the crime!". With those words it is official........I am a parent! Although, I am very relieved that Emily did mostly behave in the manner I thought she would, and still had good grades. She is a good little girl.

Ps. I was right. My boss did not take me being out on Monday very well.....even though I have 71 hours of vacation time left.?!?

The power of a hissy fit!

So the wonderful pediatrician came through. He called the neurologists office, and explained how important it is that Jude got in asap! They called me back, and Jude is now scheduled for a two hour EEG TOMORROW!!!!!! They will then schedule the follow up appointment for next week where we will meet the neurologist, and talk about new medications.

I had complained about the health insurance because we now have another deductible hurdle to cross. I am praying this won't be an issue tomorrow and affect his eeg. I am hoping they will just bill us after the procedure.

Anyway, I am thrilled that Jude got in so quickly. Also, I was able to fill out their new patient paperwork. They asked me what I am looking for in a doctor. I am wondering if the doctor will be staring blankly when he is done reading my novel.

Have a good night.

Doctor Doctor

So.... I GOT SLEEP!!! Therefore, I am not as cranky today. Jude had a pretty bad seizure about 10:30, and it really wiped him out. He slept straight until 5:22, and then Mike got up to feed him. So I got a pretty good nights sleep, and I feel like myself again.

I talked to Jude's neurologists office yesterday, and explained my concerns with the medication, and the continuing seizures. She said they believe if Jude is taken off his medications he will seize all the time. I asked, "but Jude has never seized all the time....he has cluster seizures". She said, "I know I told him that, but {pause} this is just what he thinks". The nurse stated that the doctor recommended putting Jude on a medicine called Keppra. I have done some research on it, and everyone I talk to that has a child on that medication raves about it. They stated it's much better than the pheno, and the topamax. The problem is Jude would have to add this medication to his existing meds until he is weaned off the other meds. This seems like A LOT of medication for a 5 month old, but I am encouraged there is another drug that seems less harmful. So after some thought I finally decided that I want another doctor that knows Jude's case inside, and out. A doctor that remembers him like his pediatrician does, and I don't have to remind them what type of seizures he has. So I put a call into Jude's pediatrician, and he recommended Texas Child Neurology center. We had actually visited them before Jude was born, and prior to going to Cooks. We really liked them, but the doctor that was near our house that worked with them left on a medical sabbatical to Africa. That is why we chose Cooks. So I called them yesterday, and talked to a very nice lady who took all our information. I explained Jude's case, and how important it is that we get a second opinion prior to administering more medication. She then told me that the lady that books the appts will be calling me back...........she did with the first available date of 4/13!!! For the first time I just put my foot down, and said that wouldn't work. I told her I would have the pediatrician call to get Jude in sooner. She seemed a little surprised, but said the pediatrician calling should do the trick. So I will let you guys know what happens.

Then last night I started putting together a binder for Jude. I split the binder into categories labeled the following:
1. In utero
2. Pediatrician
3. Neurologist
4. EEG
5. MRI
6. ECI
7. Maternal blood results.
I then put a picture of Jude on the front of the binder to remind the doctor that Jude is a real baby. I am in the midst of gathering all the information I can for my personal records, and for any doctors in the future. I have all of his in utero Mri, and some of the other records, but I want a comprehensive history. Jude's case can be traced from 19 weeks in utero to when he was born and they thought he was fine until now. It is a long case, and maybe it will help them better serve other children too.

So I am on a mission. I want a doctor that knows my son, I want the best possible treatment, and I want someone that listens. I am determined to find this person. In the mean time I may run a truck through my health insurance company, and then on into the IRS but that is a whole different blog for another time.

To medicine or not to medcine

First, let me complain AGAIN regarding lack of sleep. Last night I took Jude with me, and went to bed about 10:30pm last night, only to wake up to him seizing about 12:30. We then went back to sleep, and he woke up at 3am.........to play. He didn't seize, no he just wanted to scoot around in his bassinet, and make as much noise as possible. He did take about 3 oz, but he still wanted to be awake. Finally, Jude fell back to sleep, and soon my alarm was going off at 6:30 for Emily to get up. I never fell back to sleep because Jude had another seizure so it's another day of about 3 hours of sleep. I am beginning to get sick, and I am sure it's because I am so tired. I walked in the office today, and couldn't remember the last day I had where we slept all night. I just walked straight to my office, and plopped into my chair. I need to go work out on lunch, but I am not sure how to muster the strength. I know I am being whiney.......but DAM* I am tired.

So last night when I was beginning to administer Jude's nightly medications my mind began to work through exactly what I was doing. I guess since I have finally grasped Jude's situation, and become accustomed to what we are doing, I am beginning to sort through the relevance of the meds. Each night we get a small bottle and put 1 ounce of pedialyte in it, and then add 6ml of phenobarbitol to it. When get three topamax capsules, and sprinkle the contents on to a spoon of carrots, peas, or applesauce for Jude. He is also currently on 5ml of amoxil due to his upper respiratory. So we give him his seizure medications knowing that within the hour they will make him drool, get sleepy, and stare a bit. So last night my mind raced through several different questions that I brought up to Mike.

1. Is the medication actually fending off other seizures that would be affecting Jude without the meds? We are still at 2 a day, and 2 during the night. So is anything actually working, and we just cannot tell? Would they be more frequent without the meds?

2. Is the medication delaying the inevitable with Jude? In other words if we will eventually lose him {GOD FORBID} are we just drugging him up instead of letting him be his self?

3. Without the medication would Jude's cognitive abilities return, and he could go a lot further than the doctors think? Would he smile more, laugh more, sit up, and hold his head up more?

4. There is no evidence that his seizures are destroying his abilities, but there is evidence the medication is destroying them. So which is worse?

So I have lots of questions regarding the medications. I tried to get Jude in with Children's in Dallas for a second opinion, but that was a NIGHTMARE! So our pediatrician did give us the number to a neurologist he highly recommends. I know our neurologist is one of the best around, but I am really struggling with the medication issues. I have said before that I could honestly see why the Travolta's pulled their son off his medications. If they are not working, and make your child into a zombie then why subject them to that. Also, the thing to keep in mind with Jude is he has cluster seizures. He doesn't fall down, and have 1 long seizure. His seizures are very long, but they have breaks. It looks like this ..... spasm, yelp, break, spasm, yelp, break, etc for 10-30 mins. So he has breaks to breathe so his oxygen level is not depleted, and that is what is so dangerous about most seizures. It doesn't mean his are any better, but it does take a little pressure off when he is having them.

So I am conflicted, and not sure the best route to take. I would like to leave all this in the hands of the doctors and just trust their judgement is best. Although, we have all learned through this journey that doctors are indeed only human.

A Juders and his chair

Jude has received his Child-rite chair....talk about super fast shipping. I am so pleased with it that I just don't know what to say! Jude cannot use a Bumbo because his muscle tone will not allow him to sit in it very long before he goes smashing nose first into the hard rubber piece in the middle. This little Child-rite chair is perfect for him and allows him to exercise his torso, and help strengthen his muscle tone. I cannot explain to you how great it is to see him sitting up, and I know he felt like big boy too. Here are some pictures.

Chatting with his sissy:


A little Jude and his chair:


The dreaded bumbo where Jude meets the yellow piece face first.


So we had another rough night, and I am so tired. I am to the point to where I am taking everything personally, everything is hurting my feelings, and I just want to sleep. I told my husband I wanted to check into a hotel today, close all the curtain up tight, and just sleep. ha! Jude had several seizures, and was restless until we put him in bed with us. My husband was a little baby deaf last night, but I know he is tired too. We did get a few good hours in so it's not that bad. I am a little brain dead at work though, and so I feel for Sarah.

Jude had another therapy session yesterday, but he slept through a lot of it. The therapist mostly interviewed Mike on what progress if any Jude has made, and then completed her report. She really liked his chair, and said she had not seen one before.

Mike and I are venturing out on Sat night for a few hours. I think it will be good for us, and especially for Mike to get out. We are going to meet some friends, and just relax. We will have to leave to get Jude at about 11, but it will be nice to have some adult time.

So I watched the Bachelor last night, and took all the scenery in of New Zealand. When I went to bed I laid there daydreaming about the top 5 things I liked about the show last night. My number one was the thought of sitting in a hot pool, sipping champagne, looking out over lush green mountains......then the baby wiggled and I woke up! It was a nice thought though, but I would want my kiddos in New Zealand with me anyway.

Have a nice day

It's Monday

I have found a correlation between Monday's, and my bad moods. I think it's the fact that I spend all weekend with my family, and on Monday I have to get up and leave them. I miss out on Jude's half smiles, his slobber, his feedings, and just holding him. It rather makes me sick, and I think I am getting pretty down about it. I don't really see a way out of it though since I have to work. It's depressing, and I hate leaving them.

Jude had a seizure last night before he went to sleep, but it was very short. He then slept through the night, but got restless at about 3:30am. This wasn't a big deal, because I was already awake because I heard my text go off at 3am. It was my daughter..........yes texting me.........in the middle of the night....."Mom Scooter puked on my floor and it smells". Really? Well it's not MY cat! So I got up, and climbed what seemed to be the mountain of stairs in our house only to find WHY Em texted me. It was DISGUSTING. I don't understand how a cat could hold that much stuff in his stomach. So trying to hold back my own vomit I commenced to cleaning her carpet. I scrubbed and scrubbed, but I still have a large bright orange circle on her carpet. Ugh, I hate carpet!!! I then marched back downstairs to listen to Jude scoot around in his playpen. I finally grabbed him and put him in bed with us, and listened to Mike gripe at me that I wake Jude up. Not true I say! Anyway, Mike fed Jude, and then we all went to sleep together until Em texted me that she didn't want to go on the bus. I moved Jude back to his bassinet, and marched back up the stairs again. It seems Em is still recovering from a late night birthday slumber party she had with her cousin on Sat night. So she got the "don't do the crime if you can't do the time" comment and her little booty scooted off to the bus stop. So I then layed back down once more only to hear Juder pants scooting around again, and when I looked in his bassinet I saw his big eyes open. Thus giving up on my journey to get more sleep before work, and grabbed the little peanut out of his bed. Once I grabbed him I got some smiles, and cuddles so that made it all worth while.

So if you noticed we had a pretty seizure free night, and I am crossing my fingers. As of 11am Jude had still not had a seizure this morning. Maybe the increase in the phenobarbitol is helping combined with the increases in the topamax.

Sunday

I just wanted to give an update on Jude. He had three seizures again last night so his frequency is still not diminishing. He was so adorable though when he woke up this morning because he was Mr. Smiley. Which is even more proof to me that Jude has no idea when his seizures strike. His whimpers, crying, and wheezing still bother me so much, but I know he doesn't remember anything that happens. I let Mike sleep last night with each seizure because I know he deals with this on a daily basis. He said it got to about 7am, and I finally shut down so he took over. He said I just mumbled "your turn buddy". ha! At that time Jude was not seizing , just being restless.

Speaking of Mike, anyone in our situation can tell you that having a special needs child can test your relationship. In my opinion if you survive you will NEVER be apart. We have our ups, and downs but last night was wonderful. He worked so hard on making me a great meal at home. He planned everything down to even the exact minute when certain foods needed to be cooked to coincide with other items being served. He shopped and got the best deal on everything so he bragged on what good deals he got. He also said, several times, that he could out cook me so I smell a cook-off coming on.

I am getting more emails from people reading my blog that are going through similar situations. Helping others is what I want to accomplish with this blog, and is one of the reasons I try to be brutally honest in my writing. I asked Mike to help me get the video's up of Jude's subtle seizures. I think it's even more important now, because I have had several moms ask me "what do they look like". If it weren't for the ones I saw I am not sure I would have caught his first episodes.

Have a great Sunday!! It's back to the rat race tomorrow.

My Valentines

I would like to introduce you to my Valentines, and the two most important men in my life.



My other little Valentine is at school all decked out in her V-day wear. She was very cute! It was also grandparents day at school so she shared breakfast with her Papa Steve, and Grammy Kay. She then will share lunch with her grammy Christine. So she has a very big day ahead of her.

Jude slept last night, and he didn't have a seizure until about 5:30, and it was rather mild. He did have a seizure prior to going to sleep. Mike took him out of the room for awhile so I could sleep. I had been up with Jude the night before, and was exhausted. In fact I barely remember everything that transpired prior to bed. If we can wipe the seizures out completely I will be much happier, but limiting them to two a night is much better than four.

So I had some friends go together, and get Jude's Child-rite chair I mentioned. I also had some help on some of the medical bills today, and my family helps. Just so nice!!!!!! I don't like talking about the financials of a crisis, but you cannot help it affecting you in some ways. If it weren't for these nice people our standard of living would have drastically changed. So we are thankful!!! Luckily I have a good job, etc but it still helps, and I wanted to let them know publicly that I am grateful.

Emily is going to her dads this weekend. Mike and I are having dinner at home for Valentines, and I am looking forward to it. I hope everyone has a nice seizure free weekend.

On to the weekend

I found this on Zoey's moms blog tonight, and I wanted to let her know how inspiring it was to me.

Lord,grant me the courage to walk on ...when adversity is around the corner. Lord grant me the faith to walk on ...when the way is dark and I am lost. Lord,grant me the strength to walk on ...when my legs falter and my body fails.Grant me these things, Lord,and I will fear nothing."~Thomas D. Willhite

I left this for my husband on his website because I think it sums up that we have to keep marching forward. Tonight has been a good night! Jude has had zero seizures so far....I am currently crossing my fingers as I write this. Mike and I decided as a parental pair that if Jude does have another night full of seizures we will administer the klonnopin, so Jude can sleep rather than seize. It has also been a good night because ECI visited again today, and they again said how encouraged they are with Jude. She said "He has such a determination about him." She explained to Mike how hard it is for Jude to hold his head up, but yet he keeps trying and works so hard at it. Jude is also using his right hand to try and reach at me. He gets tired before his hand reaches me, but he still tries. Also, he was on his side earlier, and flipped right over to his tummy.

I bounce between thoughts, emotions, and solutions. All I can do is ask those around me to have patience. I thank Kel, and both Sarah's for listening to my spewing of issues. This is the hardest thing I have ever had to deal with, but somehow I know it will also be the most rewarding. So please bear with me guys.
Little Jude is playing on his mat, and I am about to make him go to bed. Good night.

Seizures Seizures

Jude had FOUR seizures last night....four! That is not counting his ones yesterday either, that was only last night. I am 100% EXHAUSTED today at work (bear in mind each cluster seizure lasts anywhere from 10-30 mins). I have no idea why his seizures are increasing as much as they are. Mike, and I were rather upset last night for various reasons so I thought maybe it was our stress. Although, over the past two weeks the seizures have been increasing in frequency with each day. So I have put a call into Dr Malik to see what he thinks. I told you before that the seizures remind me of a demonic entity that finds it's way through barriers. It seems our nasty entity has yet again maneuvered around the topamax. Poor little Jude is also choking on his saliva from the increase seizure activity. So a specific prayer to stop these seizures would be great.

On another note poor Mike is going very stir crazy in the house. I am not going to go into to much detail except to say this is a very tough situation. I am good and have accepted Jude's situation, working, handling the emotions, etc. The one thing I am not okay with is I cannot fix my husband. He feels so cheated, but loves Jude at the same time. We both know that Jude is not doing as well as we hoped because of the increased seizures, and that brings along new fears. They are fears I hope we can face head on together though, and with lots of faith in our family we can pull through. I am confused on which route to take....to continue to work full time, we both work part time, etc etc. It's hard to know what to do sometimes.

Thanks for your thoughts for Jude. I think he needs them right now.

Gymboree

Come along and play with me, my sweet baby! The words are ringing in my ears again. Today's Gymboree session went okay, but it wasn't what it normally is. That very well could be because I am still a bit down, but I could tell that Jude didn't seem himself today. He seemed like he was going into seizure mode, and my motherly instinct was right. As soon as Mike and Jude left the center I received a text that he was having a seizure. Jude looked noticeably different from the other babies today, and that is something we will have to accept. He has been so young that you really could tell no difference between Jude and other children. Ironically, I had just read Ellen's blog today on how children stare and talk to special needs children. For the first time I understood I will contend with the same conversations. I am okay with that, but I did want Jude to hold his head up today. He struggles holding his head up, drools buckets, and does not giggle like the other babies. I still think he was the cutest baby in the room though :).

I also found the child-rite chair on another site, and I so want it! I am going to save some money so I can purchase it for Jude. It is like the Bumbo chair, but it has a larger back and more support for special needs children. I think he would do very well in it, and it will strengthen his torso muscles.

Have a good night all.

A little down

I am full of mixed emotions today, and I am trying to sort them all out. I struggle with "thinking" the right thing, and staying in the right frame of mine. Occasionally I am not so positive so you will have to bear with me today.

On one hand I feel like I am more comfortable with everything going on in our lives, and on the other I still feel a bit lost. I teeter between knowing Jude has severe issues, and will never be normal to still having hope that he might overcome the odds. Reality says, Jude won't. I don't mean that negative so let me explain. On the medical side we can look at the MRI findings, and realistically know that Jude's abnormalities are many, and severe. Therefore, from past cases we know that if Jude should overcome the odds and walk, talk, eat, etc he will be in the doctor's eyes "A miracle". That is indeed how they classified if Jude should be functional "a miracle". He didn't mean that rude because he was trying to reassure me that miracles do happen. I do hold out hope that Jude will function by speaking some words, hopefully walking, and not needing a G tube to eat. I think he will be able to see more than the doctors think, and I do see in him hope for being one of those that can do a lot more in than they ever thought he would. Then I look at the situation, and I get upset again that what I listed is now my hope. There is no longer a hope that he will play little league, run, jump, hide, play in the mud, etc. You can think I am terrible, but I am not I am just realistic. We do not think that Jude will live from a wheelchair fed by tubes, and trachs.......but that too is a possibility. There are many mothers I hear from on a daily basis who read my blog that do have children that are pretty much non functional. They all assure me how much they love their children, and how their children light up their lives. I understand that because even with Jude's seizures and issues he lights up my life too. I look forward to going home everyday just to hold the little peanut, and to have Emily snuggle up next to me too. It's just the fact that people in general can be put in a situation like this with their children. It doesn't seem fair, but life rarely is. Mike, and I talked at length last night about Jude's condition because I had received many emails on a support network I am a part of. I have mentioned before that I have a huge issue with feeding Jude through a tube. I am hoping it never comes to that, but again there is a possibility. Children in Jude's situation can frequently silently aspirate on their liquids, and create pneumonia, etc. Again, I am holding out hope that Jude will be able to eat just fine. So my mind bounces back and forth between medical issues, regular life, and what lies ahead. I take every day minute by minute, but a normal human cannot help thinking ahead. I read updates through the support group of many mothers findings, and I realize we are just getting started on our journey with Jude. We have many doctors visits, tests, and more ahead of us. Sometimes we think we may have a break, but we realize there isn't one. Mike and I were recalling how last April we were so thrilled when the perinatilist said, "you are having a boy", and then in one minute devastated when he said " his brain ventricles are slightly enlarged which could indicate a problem". His brain ventricles are slightly enlarged......... it all started with those words. Now we know for a fact that they were enlarged from fluid that was taking the place of brain tissue do to his stroke. It's amazing how medical circumstances like baby's having strokes never enter your mind unless you are dealing with the situation.

Jude has brought a lot of light into our lives, and has taught us lessons we probably never would have learned. He is a joy to have, and we will always give him the best possible care. I guess I just wanted to ramble and share to those that think we are so strong that sometimes we aren't. This is all still very new to us, and we are still learning to deal as we walk along our path. Sometimes I come to work wondering how everyone can move on with their lives when Jude has such issues. Such a ridiculous though, but one that still passes through my mind. We are thankful each day we have Jude, and appreciate Emily more than I ever would have. Yet the barrage of emotions we have felt over the past year can sometimes take it's toll. I am a bit tired, and my biggest prayer is Jude's seizures would be placed under control. He is still having about four a day, and two of those are at night while we are sleeping. So our specific prayer is the medication will work, and his seizures will stop.

By the way, I just noticed I did not list the right link in the blog I placed about the little boy on Caring bridge the other day. I fixed the link, it's a few blogs down. I am sure his family could still use your prayers for their loss.

Here are some pictures from last night.

Jude asleep:


Jude and Em pretending to sleep:

Pediatric eye doctor

Mike did doctor duty twice today for little mister Jude. He had a pediatrician appointment who confirmed that Jude did have a sinus infection now, and he is now on medication. He then skipped over to the ophthalmologist for Jude's first eye check up. The neurologist wanted to have Jude's vision checked due to his other issues . Mike explained that the doctor dilated Jude's eyes so she could see inside. She is the first doctor that we have visited that immediately pin pointed that the damage she saw looks like "the cause of a stroke". She said his optic nerve is gray from lack of oxygen, and damaged. She then said the eyes themselves are "beautiful" so it's a communication problem from the brain to the eye thus CVI. CVI is cortical visual impairment, for more info you can read here http://en.wikipedia.org/wiki/Cortical_visual_impairment. He is also diagnosed with optic atrophy (the gray optic nerve), and intermittent extropia (lazy eyes or eyes that wiggle). The prognosis is "guarded", and we are to go back in 6 months. Since Jude is so young we are once again on a "wait and see" mode. My cousin joked, and said rather than naming Jude we should have given him a symbol like Prince because everything is "wait and see". This in turn creates new information that I will need to share with the states therapy departments.

Jude woke up crying last night two different times with seizures. I am hoping that once we knock our this sinus infection the seizures will slow down. I am becoming convinced though that the topamax is no longer working. I have heard there is a seizure drug called Keppra that has been great for kids. I am not sure they give it to kids as young as Jude, but we shall see. Mike brought Jude by to see me after his doctor appointment. I looked at his tired face with his dilated eyes, and I saw the little boy inside. I also saw that little boy has some serious issues that will need treatment. We are there with him though, and just need some support. I knew in my heart Jude had vision problem before being told. He responds to light, and has moments of clarity, but it's still sometimes hard to understand why one issue after another keeps coming up.

My cousin called today asking if Em can go to a spring break camp. I would love for her to go so I am hoping we can swing it.

Update

The doctors office called, and my factor V is negative so that is good news. It seems I am just dealing with the platelet issue. Which means I have a bleeding disorder, and not a clotting disorder. So this is something I will deal with.

Cooks just called to schedule Jude's first therapy session with them, and I am currently on hold while they set that up. I did talk with Mike earlier, and it seems that Jude has not had a seizure since the one early this morning. I am hoping the seizures stay at bay, but it seems we are averaging 3-4 a day again.

On a sad note one of the little baby's that I read their caring bridge on passed away yesterday. I logged on to this page to read the always eloquent update, and received the news. His father wrote an update filled with grief that made me bawl at work. No one likes reading that information, but it's unfortunate that these circumstances happen to children. They are in my thoughts and prayers: http://www.caringbridge.org/visit/bravewill
There are so many inspirational stories on Caring Bridge, and blogger and then there are those that do not have a good outcome. This little boy was tired though, and his body needed to rest. I know he will be watching his parents from above until they can join him.

The weather is beginning to warm here, and it feels like spring. I can only hope this continues, but with Tx weather it could be 32 by morning. I am going to hope that the sunshine, and warmness continues. I would like to take some pictures of the kids soon outside.

Have a good day everyone. Have positive thoughts, and hug your family.

Jenn

Good Morning

Good morning all. It was an eventful night in the great land of wind and storms we seem to live in. I guess we are approaching that lovely time of year where we hide out in bathrooms, watch the tv, listen to the pounding storms. At about 3am I woke up to what sounded like a freight train barreling through my house. Since I have been in two tornado's before I instinctively flew out of bed, and rushed upstairs to get Em. Before I got up to the top stair the hail started, and I heard a terrified scream of "MOMMMMMA!!!!". I whisked her out of bed quickly, and followed behind her and her fuzzy pink blanket trailing down the stairs. I rushed her into the center bathroom, and saw Mike coming from our room groggily, but urgently saying "You need to get Emily NOW!". Yeah thanks sleepy pants, I already have her! Anyway, I grabbed the little peanut from his bassinet, and we rushed into the bathroom. Mike stayed out to try to access the Internet from our lap top to see what was heading our direction on the ever trustworthy weatherunderground.com. We listened to the whistling, the battering, and the sirens screaming away in the distance. As quickly as the wind came it subsided, and we made our way out of the bathroom. Mike said we got hit full force with the worst part of the storm, and we both peeked out the windows. As usual the storm sounded much worse than it was, but there were tree limbs, trash cans, trash, saw horses from model home driveways, lawn chairs, and more blown about the neighborhood. So once we surveyed the damage we got everyone back to sleep .... everyone but me. I laid there wide awake for at least two hours, and once I fell asleep I heard Jude start another seizure. Then Emily's teacher called very early to cancel our semi-annual teacher conference, etc etc. Therefore, I finally gave up and just got up for the day.
I am sure you noticed I put that Jude had ANOTHER seizure, because he has had a multitude this weekend. I have honestly lost track of how many there were, but we did write them down. I am growing more concerned about his increase in seizure activity. I may put a call into the pediatrician today to ask for an antibiotic. I believe he may be getting sicker under our nose, and we just cannot tell. Jude makes little reference to being sick, which I don't believe is from being special needs because Emily did the same. I never knew Em had an ear infection until she was running 103.9 fever. So a few little prayers that Jude's seizures decrease would be great.
Also, Jude's blood work did come back okay as far as medication levels. I should have my factor V test back today, and I will post the results.

A public seizure

Well it happened........... our first public seizure. Mike had a little money stashed away so for a treat he took us to lunch. Once in the eatery Jude's eyes started flashing up in that tell tell sign that he is about to have a seizure. I grabbed Mike's arm, and he looked towards Jude's car seat quietly saying, "he is about to start". So I calmly walked over, and took him out of his car seat, and the audible yelp started. So I gathered his blanket, and took Jude outside where we sat on a seat on the nice sunny day. A few people stared as they walked by, and one lady waited in her car to see if she could help, or to see what was wrong. She finally grudgingly drove away because I think she sensed I had done this before. Once Jude was just twitching, and not yelping anymore I took him back into the resteraunt with only a few glares. I actually felt very comfortable, and knew that everything would be alright. I also realized in a sense that everything wasn't alright........and never would be. Does the combination confuse you? Let me explain that it's as if we know it's not okay, but we are okay personally, if that explains our situation any better. So they brought our food, and Mike and I switched off eating with the baby in one arm. Emily was there too, and handled everything very well.

We then left and walked the sidewalks of the shopping centers in the brisk pre- spring wind, and stared at pretty objects we shouldn't waist our money on. Admitting to ourselves that we may no longer be able to afford them, but knowing they don't matter anyway. We looked at pretty objects for the house, softball bats, clothes, benches, books, and strolled along the sidewalk in the sunshine. Then we stopped, and I saw a picture frame that made me tear up for a second and I grabbed Mike's arm. It said "Life isn't about waiting for the storm to pass, it's learning how to dance in the rain". He smiled at me, and we saw the red tag marked 75% off clearance and he got it for me. So I took it home, and carefully searched for pictures to go inside of it. I put two of Jude, 1 of Em, and 1 of Mike and I. Then I carefully hung it on the wall. I keep passing by it in the hallway, and smiling each time I do because the white words that scroll across the dark red paint are so true. Life truly does change in a situation like ours which is a situation that afflicts so many others. I am thankful for our life though, and thankful to Jude. He has taught me to appreciate more in life, and to see things in a way I never would have before. I am thankful to our tiny little peanut, and I hope he knows it.

and up out of the ashes

Just when you think that you are falling off the cliff you have been hanging on a light shines through!!! I received an email tonight from a nice lady that has a son with bilateral closed lipped schizencephaly. He didn't have a similar diagnosis it was the same! Granted her son does not suffer seizures, but they were given a grim outlook. They were told her would be blind, deaf, etc etc. She said he is five years old and although his speech is delayed he walks, talks, can see, can hear, etc etc. Awww so nice. We can only hope that Jude will be so lucky.

Friday

First, off let me just state that I am so very happy it's Friday. I plan on painting my half bathroom this weekend with leftover paint I have had in the garage for some time. So wish me luck on that.

Jude went to the pediatrician today, and it turns out the little man does have an upper respiratory infection. I could tell he wasn't feeling that well today when the group stopped by to see me at work. He looks a bit pale, and just wanted me to cuddle him. The doctor did not put Jude on an antibiotic which can be good, and bad. Since we have been warned that Jude could possibly aspirate on liquids and quickly acquire pneumonia questions bounce in my head. Is it good to keep him off antibiotics so he doesn't work up an immunity? Is it better knowing he has an upper resp infection which can become pneumonia to go ahead and put him on one? Who knows! I did put a call back into the neurologist. I have to get his blood results anyway, so I might as well ask the above question.

My friend I have met through this SUCKY situation Jocalyn is in the hospital with her little girl Kendall. See Kendalls blog here: http://kendallbriggs.blogspot.com/ . Kendall is experiencing more issues including the now diagnosed infantile spasms. Is are a ruthless form of seizures in babies. She is now under the care of Jude's doctor, and being told things that frighten every mom so please send some prayers her direction I know she can use them.

Jude was a little croupy sounding from his infection last night, and still a bit twitchy from a seizure. When Mike came to lay down in bed he expressed concern over Jude. I can sense that he doesn't think Jude will be with us very long. He said that he loves him so much, cherishes every moment with him, and cannot imagine his life without him. I tried to tell him not to think about those types of things. Although, all of us parents in situations like this do think about losing our children occasionally whether we admit it or not. Our lives have turned from basketballs, toys, puppies, talking, walking, and such to discussing trachea tubes (my email this morn), g-tubes, medicines, seizures, and more. Yep it sucks.......that's my word today IT SUCKS. You can talk about prayer (which I believe in), belief, hope, love, and more but all that Iintertwines with despair, reality, and being in an explained pissy mood every now and then.

I love to organize events, and was asked by an old classmate to organize a reunion type picnic. Not necessarily targeted just to our school, but rather our graduating class because we knew so many others from surrounding schools. I thought it might be fun to take on the task, might be away to help some charities, and would occupy my mind some.

Update

I did talk to the neurologists office who suggested I raise Jude's topamax to "two in the morning and three at night". My response? "That's already what he is on.". SIGH! So she is checking with the doctor again, and if going to call me back. She did tell me that they would like me to get him checked at the pediatricians office for a possible illness. So I was right in assuming we should take him there. It amazes me how all these chain of events begin to rationally make sense even before I talk to the doctor. The nurse also didn't have his blood results so I am unsure of what his levels of medications are in his blood. I am only hoping that he is not becoming to over medicated. So she is suppose to call me back with that information as well. She also indicated she would like Jude to see a hematologist because of the results from my platelet study. I think we will pursue that, but not immediately. I would like to get final formal answers on my issues before subjected him or Emily to any tests.

Let me explain that I had these blood tests done because of the severe platelet issues I encountered during my pregnancy. There is nothing that can be done about Jude's issues now. We will let Jude show us his pace, and we will be there to help him. Although, if there is a hereditary condition then with both the kids it is something to explore. Our lives have become more functional with Jude and have taken on more of a schedule. It can vary depending on Jude's seizures.

I do have to say that the other night we went to the store and Emily said, "Mommy what if Jude has a seizure". I replied, "Then we take him out of his car seat and help him". She looked concerned and whispered, "but everyone will stare". I said, "That is just something we will have to get used to because by having Jude in our lives he will eventually have a seizure in public." She looked a little concerned again, and I said "Em people will only stare because they will be concerned for him". She then seemed accepting.

On another note a gentlemen just came into my office for a quote, and he was completely deaf. I was very impressed with him, and he was just as nice as could be. I love seeing people overcome their disability. We communicated just fine by him reading my lips, him writing questions, etc. It was just a normal quote, and I was happy to assist him.

I am so tired

As I stated yesterday for some reason Jude's seizures have increased in frequency. Last night he had a seizure prior to going to bed, then one right before 2 am, and one right after 4 am. After the seizure at 4 I put him back in his bassinet only to listen to his breathing being a bit rattled. The breathing made me nervous so I had difficulty falling back to sleep all I could think about was him NOT breathing so I kept checking on him. In addition the cat was playing, the dogs barking, my husband sneezing, etc etc. I am working on little to no sleep people.

I put another call into the neurologist to try to find out what they think about Jude's seizures increasing. I am beginning to think that he might should take a trip to the pediatrician just to check his ears, and such. Any sickness can cause an increase in seizure activity.

So Mike is having his mom watch Jude for a little while today so he can finish up some work. I am a bit nervous, but I know she will just hold him all day long.

I will post later with information from the doctor.

So yesterday Jude kept making noises in his bassinet so I placed him in my spot in the bed and ........ spoiled huh?

DR schmoctor

I went to the hematologists office today for the results today. If you remember I truly like this doctor, and she was out when I called inquiring regarding the factor V. It was the other doctor in the office that was filling in for her that ordered all the tests, and seemed to panic a bit. Once I got there she did agree that I most likely have an underlying platelet issue. She explained that if I had taken alleve it might mess up the platelet test. I have been out of alleve for some time so I don't think that was a factor. She asked me what happened to Jude, and I told her in detail. She then said she is still hoping that the drop in platelets during the pregnancy was solely gestationally induced, but she thinks it could be more complex now. She then went to hunt for the factor IV test only to find out IT WASN'T RAN!!!!!!!!! That was the whole reason why I called to begin with. She said that seeing how my family has the factor V deficiency it is likely my test will come back with the same results. She explains IF this happens that leaves her in a strange predicament because that would mean I have issues that are opposites. The platelet issue is an indication of a bleeding problem, and the factor V is a clotting problem. Anyway, she said that the issue that comes to mind she thinks the platelet issue is is very rare. So rare that she would like to say "no way no how", but she said "knowing you!" and we both laughed. Let me explain, that neither she nor I think this is anything to be concerned about regarding my health, but it is something I need to find out. The doctor explained that if this is hereditary I need to know, Em needs to know, and so does Jude. Plus, there is also the issue that it may be my underlying genetic platelet problem, and Mike is Factor V deficient so Jude still had serious issues to contend with. She said if it turns out I have the platelet problem and the factor V I will probably prove to be a case study to help other children who might have stroke in utero. At least that makes me feel better. So this is all very confusing and I could go on and on about what is here, what she said, and what wasn't done, but trust me you will be making the movie Land of the Lost with Will Farrell! Anyway, from here we took the factor V test which I should have back by Monday. Also, she explained that even though she is a specialist this is just to complex a case for her and she referred me to a doctor in Dallas. So I guess I will be going to see him. I am patient though, and I have never had a problem with any of this before so this will be for future reference.

Jude has had an increase in seizure activity lately, and we are not sure why. I put a call into the neurologist, but I have not heard back yet. Once I hear back from here I will let you know because we are awaiting his blood results too. He did sleep through the night until about 4 this morning, and only woke up for a bottle. Although, soon after that he did have a seizure.

Have a good night all......it's been a busy day at work again and I need a hot bath.

Therapy update

****update ~ Mike just called and said the therapist came. She worked with Jude for about forty minutes. She said that he can hold his head up for 3-4 seconds without letting it fall which she believs is positive. She said that with very low muscle tone they just cannot hold their head up. Also, she got him to sit for a few seconds before tumbling over, and to push off on his legs when she prompted him to stand. She also said that he would get very aggravated when she would grab his hand which she was also encouraged with. She said he does keep his hands in fists, and his arms bents so we are going to look into splints. In addition Jude would scoot like he was crawling when she put her foot behind him to give him support. She said she was very encouraged at what she sees with him.......FINALLY some good news.

Now some prayers please this continues.

Bussssssy bee

We are so busy at work today that I have had little time for anything other than quoting, taking payments, and servicing policies. So I will update quickly while I have some rare down time. Jude didn't have that great of a day yesterday because he suffered several seizures. It seems that the seizures are increasing in frequency again, and I am not sure why. We are now watching to see if he is getting sick, or for another aprticular cause. He has had at least 1 around 2am, which I now seem to sleep through which makes me feel terrible. It's like Mike and I have switched roles where he takes the first shift, and I take anything after 3am. Mike said we just feel comfortable in knowing that the other person is taking care of Jude, and are therefore more relaxed with the situation. It is truly like we are just accustomed to this situation now, and we just live....which I believe is what you are suppose to do. Jude then has one in the morning, one late afternoon, and one early evening. So we are creeping up again to 3-4 a day.

So Jude had his first therapy appointment with ECI today at the house so I am anxiously awaiting Mike to call to give me an update. He will have Gymboree tomorrow, and then nothing else until next week. Also, I would like to share that this little man LOVES bananas!!! He just tried his first bites of Gerber bananas yesterday and was smacking his lips after each bite. It was pretty cute.

On another note I had a complete meltdown at the house last night. I bawled to Mike that I didn't want to work anymore. I had text my cousin this information, and she assured me it's because I had a good day with the baby. Even though I was sick I still go to be with him, feed him, burp him, change him, etc all day. I think that made me really miss him, and then I got to see Emily come home. I then explained to Mike that I understand I that any job right now in our economy is a blessing. I know I have a great place to work, but I still miss being at home with the kids. It's a struggle between knowing what I have to do, and knowing what I want to do. So I had a good cry fest.. pity party, and then fell fast asleep. Then I woke up and knew I needed to get by behind to work, and be thankful.

Here are a few pics for you of Em and Jude. I hope you enjoy. I also posted pictures from my girls night in on Facebook.

Jude's little grin:


Jude listening to me talk to him:

Sick blah

I am at home today with the ever wonderful stomach bug. Being mothers exposed to everything under the sun from your child's school I guess we all get these sometimes. So I am just hanging out watching Jude, and hoping he doesn't get it.

I will write more tomorrow when I have more energy.

Made me think...

The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled. For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers.

M Scott Peck.

Wine and Dine night

So the girls came over last night, and we had the "wine and dine" night that I referenced I was going to have. It was a great girls night "in" which consisted of learning to play Partini, eating way to much bad stuff, and having to much wine. It was a great time and it was fun to just let our hair down, and not care about eating to much, or just having fun. Oh.... and if you have not played Partini I highly recommend it! Try throwing a bouncy ball over your shoulder into a cup while someone else is holding it....all without looking....ha! Mike stayed upstairs in his "man cave" with some other husbands, and the kids. He had each guy bring their own PS3 controllers, and games... so they were in man heaven.

We sat down to play Partini, and suddenly Emily came downstairs, and quietly whispered in my ear "Mommy I cannot go to bed because Mikey is in my room with Jude because he is starting a seizure". So I calmly got up, and went upstairs only to walk in right when the audible portion of the seizure was kicking in. The rest of the crowd downstairs began to hear his yelps, and Kelly said they quickly cleaned up the game stating they were sure I would want them to go. Kel tried to re-assure everyone that she was around that this was routine for us, and we wouldn't want anyone to go. We want our lives to stay as normal as possible which means we want others to understand that Jude may have a seizure every now and then, but we go on and so does he. Kel also said a few thought Emily was upset because she was in her room, but little did they realize Emily was in there pouting about going to bed. Emily has come to terms with Jude's seizures, and is very collected when they rear their ugly head. This is nothing new for us, but I did have to remind myself that it was new for our visitors, and it can be very disturbing. Kel has heard Jude on the phone before when he was having a seizure so she understood what was going on. Ginger, and Gina both came to see Jude while he was seizing and offer comfort. They seemed phased, but reactive in the situation. The others were very concerned in the kitchen, and once the seizure subsided I went to reassure them all was okay. I saw their tears forming in their eyes, and I tried to explain to them that as horrible as it sounds to just remember the seizures do not hurt him. I saw Darla and Fleck both really tearing up, and Darla said his yelps were hard to hear. She then said "It just makes me really appreciate having a normal healthy child". Sometimes I am almost glad that parents get to see his seizures and hear them. Not that I would want to subject anyone to that, or put Jude on display but it does lend an appreciation few can understand. I am not sure they truly knew how terrible the seizures sounded until last night. It seems like once a person actually sees him going through a seizure it's a new understanding of his entire situation. Jude looks like a normal healthy baby so you can easily forget he is afflicted with issues. Fleck mentioned how you can read about the seizures on my blog, but when you hear them it's different. It is hard to handle, it is unfair, and it is nothing we can cure. This is our daily routine so all you can do is learn to manage your life, and stay calm. It's a new way of understanding and managing life. It's also a new way to me of looking at a child, and I explained that to them. I said "any smile, giggle, or milestone we get makes us cry each time because we appreciate the effort Jude puts in to achieving that. Maybe I had Jude to appreciate everything Emily does more, because believe me I do". Each child is special, and I think Jude has touched the lives of the adults around us to let them recognize just how special their babies are. A quote I found that fits this occasion, "Henri Nouwen: When we honestly ask ourselves which person in our lives means the most us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."

After the eventful seizure we all settled back down, and Jude went FAST to sleep. We then stuffed ourselves full of more food, wine, and conversation. We talked about old memories with my friends I have had since high school, and new memories with those great friends we have recently made. I feel so honored to have each of those women in my life. I truly feel blessed that I have great friends. I know that sounds a bit corny, but it's true. If you can find just 1 person who has a genuine soul and that is honest, caring, and loyal then you are so lucky. I have found several so I am indeed blessed.

** I wrote the above blog earlier in a hurry while Jude was resting so please forgive my earlier typo's. I was in a hurry because I could hear him stirring. As an update Jude is doing well today, and we have cuddled together most of the day. He experienced one horrible seizure this afternoon, but one is better!!! We can only hope that the Topamax increase is showing it's appearance. We are about to administer his nightly meds...........if we can get him to wake up. I hope everyone has a safe and blessed week. Also, let's hope that next year the Cowboys are in the Super bowl and therefore I won't watch the TV with great interest.... just to see the Boss, and thus showing my old age :).