Easter Weekend

We were lucky enough to be home from the hospital to enjoy a wonderful weekend with Brian's parents. The weather was beautiful and the kids had a blast playing outside. We even decided to do the kids egg hunt outside this year!

This is the first year that Caden really got into dying the Easter eggs. He took his job very seriously and made sure that everyone got the color that they wanted. Isabel was more interested in sticking her hands in the colored water and finger painting on the table...maybe next year she'll get the concept.

Having the egg hunt outside was a fantastic idea. Again, Caden really got the hang of it this year and ran around the entire yard searching for all of the eggs. Isabel found one, opened it up and ate the chocolate!

The rest of the weekend was spent playing outside with their new toys. Caden got a soccer net and Isabel got a baby stroller. The kids also got a huge box of sidewalk chalk to share. The temperature almost reached 90 degrees on Sunday so we brought out the small pool to play in. Isabel wasn't too sure about it but Caden stayed in it for hours! It looks like we are going to be spending a lot of time outside this summer!
Overall it was a great weekend and I am very thankful that we got to spend it at home. It is so much fun watching the kids experience the things that I enjoyed as a child and I know that it's only going to get better as they get older!

Admitted Again

We have been busy lately with visitors and enjoying the beautiful spring weather. We were all starting to relax a little until last Wednesday. Isabel had four seizures, but they weren't nearly as bad as they were before. She had a low grade fever so the seizures were considered "break though seizures". She would stop what she was doing, stare off and then put both of her hands over her head and hold them there. Her pulse ox was low but she didn't turn blue or have any interruption in her breathing. The on-call doctor raised her medicine dose yet again (she is now on more than she should be for her weight). I called her doctor the next day and thankfully he wanted to see her as soon as he could. Along with the four recent seizures she has been having some balance problems so he wanted to access her. He had already ordered a four hour video recorded EEG which was scheduled for May 10th but he called the hospital and got her in as we were sitting in the room with him. He said that he wanted more data, he needed at least one seizure to be recorded. So we headed over to the Children's Hospital and she got hooked up the EEG. They had to confine her and she cried herself to sleep...

We stayed in a small room complete with toys, a bed, TV, comfy chairs etc etc for four plus hours and no seizure. The doctor decided to admit Isabel to the hospital. We were admitted to  the critical care floor again mainly because they are the only unit that can monitor children with seizures (obviously Isabel was not in critical condition).

We were brought up to her room around 3pm and I was told that she would have to stay in her crib the entire time we were there due to her being video recorded. As soon as we got to the room Isabel had a FIT...I think she remembered her previous stay. Thankfully she was so tired that she quickly fell asleep and we were able to hook up all of the machines.

Daddy and Caden came for a visit which brightened her mood quite a bit. She had to wear the EEG machine in a kitty back pack when she was awake and she was not too fond of it by the end of the night. That poor cat was hit, punched and kicked more times than I can count! It was extremely hard keeping her confined to the crib, those of you who know Isabel...she is a busy little girl! So I spent most of the night (while awake and asleep, in the crib with her).

The following day, the doctor paid us a visit and of course we didn't have any seizures recorded. He wanted to keep us for the entire weekend but since it was Easter, he released her. We are meeting with him this week to discuss changing her medicine. If that doesn't work she may be admitted again for another recorded EEG study with out medicine. Honestly I don't know why they didn't just take her off her medicine this time...
They came to remove the electrodes from her head which were glued on with some gritty substance (which is still not out of her hair 5days later :( ) and she looked a little something like this...

I wish there was an easy fix for this. I know it isn't life threatening but it's hard having to watch your child endure all of this.

This Time Last Year...

April 2010

Wow, what a difference a year makes! Caden looks like such a little guy in these pictures and seeing Izzy with that gummy smile makes me want another baby (almost).

Sage

This is Sage...she is Isabel's age. I have blogged about her a few times before asking for prayers and I am going to do it again because, hey it's my blog and this baby needs all of the prayers that she can get. As your know by reading my previous posts; (or if you haven't read them, here is a short sunopsis) Sage was diagnosed with leukemia at six months old and after many months of chemo at our local Children's Hospital, she was cancer free. She had a transplant and engrafted right as expected. She had a routine endoscopy that went terribly wrong and put in her in the PICU for three weeks on full life support with a small chance of survival...yet she is still here today. Now she is battling graft vs host disease. Basically the donor cells (which are now her own) are attacking her body. They have tried everything and are giving her one more month and two more new medicines to try. If those don't work, they may cease all treatment. She has come so far and fought so hard it physically hurts me to think that she might not make it.
I hear people complain about their kids all the time (me included); how they didn't sleep through the night, how they woke up so early, how they won't be quiet, how they throw constant temper tantrums, how they make messes, how bad their attitude is etc etc etc. Don't you think Sage's Mom would love to have something like this to complain about? It makes me so upset, so mad that this can happen to such a beautiful baby girl who still has so much to accomplish and so much to share. So please, send a prayer to Sage. Now more than ever she needs all of help that she can get.

Meeting with Neuro

Today we finally met with Isabel's neurologist and the news is pretty good! He is classifying this as childhood epilepsy but he is not yet ruling out that it may be genetic. Both of EEG's (the one from the day after the onset of the seizures and the one from this past Wednesday) were identical and almost perfect. The doctor said that it is very rare to see a near perfect EEG the day after that person had eight seizures, so Isabel is a mystery. He also stated that the onset of the seizures (ie 8 of them in one day) is very strange so he may be leaning SLIGHTLY towards it being genetic. But genetic testing for epilepsy is so new and even if it came back as being genetic it wouldn't change his course of treatment. But, it would mean that she would more than likely never grow out of it.
As far as the pineal cyst on her brain goes...right now it is measuring 7mm. We are going to keep a close eye on it and do another MRI at the end of the year. We are going to watch it's growth and see if it's causing Isabel any ill effects like balance issues and headaches. If it is, they will have to remove it but this is very unlikely.
She will remain on the anti-seizure medicine until further notice and thankfully we think we finally got the dosage adjusted correctly. We have gone up 1.0mL since we left the hospital which doesn't seem like a lot but when your trying to squirt medicine in a toddlers mouth twice a day, 1.0mL seems like an enormous amount! They will up the dosage again if she has another seizure or when her weight hits 28lbs. We also learned that we don't need to take her to the hospital unless her seizure lasts more than five minutes or if she has more than one in a row, like she did when she was first diagnosed. We do need to give a rescue breathe if she does not breathe on her own for three minutes or more. I hope this doesn't happen but I do feel much more at ease after just completing CPR class.
I hate that all of this is happening to my baby girl but I am happy because it could be so much worse. I just want to thank everyone who has kept Isabel in their thoughts and prayers the past few weeks, we certainly appreciate it.

Doctor Smoctor

So finally after 6 phone calls and three days later I get a call back from Isabel's neurologist. It went a little something like this;
Dr. "Um Mrs. Meinweiser I heard that you had something to talk to me about"
Me "Yes, My daughter is not acting like herself. She is very distant and is not giving us many smiles or showing much emotion and after her seizure the other night...
Dr "She had another seizure?"
Me "Yes, she had one on Monday night. I called your office and spoke with the on-call doctor who upped her medicine dosage."
Dr "No one told me about this...did you go to the ER"
Me "No, like I said, I called the on-call doctor and he upped her dosage"
Dr "Well I don't like this at all. The medicine should not make her act like this, you should set up another EEG and some into to see me as soon as possible"
Me "We have an EEG set up for next Wednesday the 6th"
Dr "Why didn't you call us sooner"
Me "I did, I left six messages"
Dr "Oh, I see. Well up her medicine dosage to 2.0mg in the morning and at night and I want to see you in the office after the EEG to see what's going on with your daughter. Something's not right"


REALLY...YOU THINK?!?!

So I called the office this morning to set up an appointment for the end of next week and was told that he is booked until June and I would have to leave a message for the doctor's nurse...so here we go again. It doesn't help that Isabel was up all night with croup and she decided to share her cold with me, FANTASTIC!

In happier news Caden finally went back to school yesterday after a week off due to strep throat. On the way to school he busted out with, "Momma, don't be a drag, just be a queen". No more Lady Gaga with the kids in the car I guess.

Frustrated

I'm sure you're all tired of hearing my pity party (trust me, I'm even tired of hearing it) but I am really at a loss. When we left the hospital I felt confident...I felt that I had a grasp on Isabel's situation. But now I can't even put into words what I am feeling. I had to watch my baby girl suffer through another seizure last night. This one was in the bathroom and came on very suddenly. Her face turned an awful shade of grey, her lips turned blue and then she fell. Her eyes rolled back in her head and she became unresponsive. She was out for about a minute and when she finally came to she fell right to sleep in my arms. I was at home alone and just sat on the bathroom floor holding her for quite sometime. I called her neurologists office and was very nonchalantly told to up the dosage of her medication...and that was it. I spent the rest of the night staring at her, waiting for the next seizure, which thankfully never came.
This morning I woke her up for school and Izzy was not herself...it's almost like she's not with us at all. No smiles, no excitement...nothing. We dropped her off at school and I left a message for her neurologists office to call me back when they opened as Izzy was not acting like she should. The nurse called back and told me that Isabel's doctor is out of town and that she will leave a note on his desk, if he feels it's urgent enough, he will call me back...and if I don't think she is acting like herself to go to the ER and the on-call doctor will take a look at her. EXCUSE ME? All I want is some answers, I want someone to sit down with me and help me sort through this and to answer my questions. I want to know what's going on with my baby and I really don't think that's too much to ask.
I know that it is going to take time to get her medication regulated, I get that but I sincerely hope that I don't have to wait until May 24th to talk to a doctor...that I think is absurd.

Luck

it's run out, or has it? Right now I feel like it has but I know things could be a lot worse.
Last Saturday (the 19th) started off as any normal weekend day. The kids slept in then we went and got some pictures taken at JCPennys (mistake #1). We got home around 10:30 and put Isabel down for a nap. After she woke up I took her and Caden grocery shopping. I gave the kids some free samples of Swiss cheese and headed over to the bread aisle while talking to Caden about which "toast" he wanted for the week. I then looked back at Isabel who was slumped over the front of the grocery cart, lips blue and unresponsive. I grabbed her and immediately thought that she must be choking. I started whaling on her back to no avail. I shook her and screamed her name...thankfully she came to in about 30-40 seconds. She looked at me, smiled then fell asleep on my shoulder. We left the grocery store and quickly headed back home. She was alert on the way home and seemed to acting like herself. When we got to the house, I took her out of her carseat, stood her up on the grass and she immediately fell to the ground like a wet noodle. I picked her up and again she fell right to sleep, she was fighting so hard to keep her eyes open. At this point I knew something was very wrong. I put her right back in the car seat and we headed to the closest ER.
When we got there, again she was acting normal but I was a mess. They took us right back and a nursing student was doing her vitals when it happened again. She started staring off, her head started to bob, her lips turned blue and she fell asleep. At this point they started to take me very seriously and took us right to CT. They tried twice to get a decent CT scan but she was crying so hard that the picture just wasn't clear enough. She then went on to have yet another seizure in the CT room. They decided to transfer us to the Childrens Hospital by ambulance since there was nothing more that they could do for us there. They started an IV in her left hand (she ONLY sucks her left thumb so she was not happy) and gave her some anti seizure medicine. While we were waiting for the ambulance, she had another seizure.
They strapped her in her car seat to the stretcher complete with an oxygen mask and blood pressure cuff. The ride was very short but it seemed to take forever. She was so upset that she couldn't comfort herself  with her thumb and she also couldn't eat due to the tests they had to run at CHKD.
When we arrived at the Childrens Hospital we were brought into the room right next to the nurses station and Isabel was added to the patient board on top in red...which is huge for all of you who know CHKD. She proceeded to have three more seizures while we were in the ER. Each time she had a seizure her oxygen level would drop into the 60's and all of the alarms would go off. We met with countless nurses, residents and doctors. Finally we learned that we were going to be admitted and that they wanted to run another CT scan to get a better picture of her brain. By this point they had started her on a second anti seizure medicine called Keppra. Thankfully she slept soundly through the CT and it came back clear. Around midnight we were admitted and brought to our room.

She slept for about an hour then woke up screaming bloody murder. She screamed like I have never heard a child scream before. After about an hour we had to call the nurses in. It took four of them to hold her down and somehow she had managed to rip her IV out. They said that her behavior is a side effect of the first seizure medicine since they had to give her such a large amount. The nurses took Isabel to the treatment room and tried twice to start a new IV in her right hand but it blew both times. They finally called a PICU nurse who was successful. They brought her back to the room around 3am and she slept fairly well after that.

The next few days were spent waiting for tests to be run. The EEG was done on Monday and that was fairly normal except when they flashed the lights in her eyes. Her readings went up more than they should...not enough to say that she has epilepsy, but we can't rule it out. She then got a EKG on her heart which was just fine. While we were doing the EKG the lights were off in the room but the TV was on, right in front of her. While we were on the elevator coming back to her room after the procedure we think she may have had another small seizure. Her lips did not turn blue but she was unresponsive. The last and final test was the MRI. We had that done on Tuesday and thankfully it was clear for the most part. They did find a pineal cyst/tumor on her brain but they don't think that is what is causing the seizures but it is something that we are going to have to keep an eye on. Her neurologist set up another EEG for April 6th and we have a follow up with him every two months. She was sent home on anti seizure meds twice a day until further notice.

The meds seems to be working but I feel like I have lost a little piece of my Izzy. She no longer gets as excited about things, she just doesn't seem as happy. It's almost as if she is just...here. She has also been starting to get "tics". She clicks her tongue and jerks her jaw and head foward. I'm scared of whats to come. I know things could be a lot worse and I am thankful that the diagnosis is JUST seizures. I'm just nervous for my little girl, so very nervous.

This Time Last Year

March 2010

Last March I started back to work after 3 months of maternity leave. I think Isabel adjusted much better than I did. Caden was now 100% potty trained and we were just starting to enjoy some warm weather here in Virginia!

Shy

Caden has become a frightened, cling to my leg and hide his face kind of shy boy. I don't understand how this happened. At home, at school and in familiar places he is his normal rambuncious self. Loud, running around, acting crazy and talking non.stop...did I mention talking non stop?! For instance, he is in love with police cars and fire trucks. I took him to the fire station that I am going to be volunteering at to show him the trucks and the ambulances and he just FROZE. He would not let me put him down and he just buried his face in my shirt. A fire fighter even came up and tried to talk to him and he wanted no part in that. I get that he may have been a little overwhelmed but to not even look at the fireman (who he idolizes) or go into the fire truck (which he talks non stop about)? Another instance, we want to get Caden involved in something since Isabel is doing dance. He chose martial arts so we took him to meet the instructor and see if he likes the class before we paid the fee. Again, he wouldn't let Brian put him down. He wanted no part of it. I get that it is normal for kids to be nervous in new situations but is it normal for them to act like this at his age? Does anyone have any advice about how I should be handling this?

A Big Thank You...

...goes out to all of my followers. I started this blog for myself and my family so that we can look back years from now and see what our life was like. I know that I'm not the best writer and my life isn't all THAT interesting so I just wanted to say, thank you for sticking around! I was shocked to see that people actually read my blog in France, Pakistan, England, Bulgaria and Belgium! Wow, how wonderful! I do have one request though...please come out of hiding and let me know who you are! Leave a comment or click the "Follow" button. All of my friends who are in the United States and Canada, please do the same!

An Exciting Opportunity

As I was driving home from work the other day I heard an interesting add on the radio. Apparently the City of Virginia Beach has the largest volunteer EMS service in the country and they need help. I  thought to myself that this would be a fantastic opportunity for me to get my feet wet in the medical field. I immediately called the number and was signed up for the orientation class. The class was held this past Saturday and as I sat there listening to the lady speak I thought to myself...are you CRAZY? You already have a full time job and two small children at home to take care of. But I couldn't help myself, I signed up for an EMT class which starts next month. It will be Monday and Wednesday nights from 6-10 (yes, I know I am normally in bed by 8:30) for five months. At the end of the five months I have to volunteer 48 hours a month (basically four 12 hours shifts a month) for two years. The class is free and what's even more exciting is that I can work my way all the way up to an EMT-Paramedic. For those if you not familiar with the "lingo" an EMT-Paramedic can do almost everything that a doctor can do including cold therapy for cardiac patients! I am very excited about this opportunity but I know that this means more time away from the kids. Thankfully I can do my shifts overnight so they won't even know that I am gone!
Wish me luck as I start this new chapter in my life! I'm sure it will be challenging but it will also be very rewarding.

Dancing Queen

That's right...my baby started dance lessons and she loves it!

She got really into the the singing and clapping and loved watching all of the other children around her. This class ranges in age from 13 months to 36 months so Isabel is one of the youngest in her class. She did get a little frustrated about not being able to jump on the trampoline or crawl through the tunnel more than once but I am hoping that will come with time. We have her second class tonight and I am anxious to see if she will take part in the action more than she did during the first class.

If only her eyes were open in this picture! I just think she looks too cute in her little leotard, tights and tutu!

                                              Izzy and her little friend ready to leave after class.

I am so happy to have my little girl to experience all of this with. I hope that dance is something that she loves as much as her Mommy did!

Isabel is 15 months old!

I can not say enough good things about this little girl! She is a bundle of energy and brings so much joy into our lives. She is extremely affectionate and just loves to give kisses and be cuddled. She will run across the room with her mouth wide open and plant a nice sloppy kiss on your face, and I love it! Her favorite thing to do right now is to snuggle up on your lap and read her "boooks", I swear I must read "Moo, Baa, La La La" and "Barnyard Dance" at least 10 times a day! She also enjoys getting on the floor and playing trucks with Caden, playing with puzzles, emptying ALL of the cabinets in the kitchen and bathroom and playing outside. I think she is going to be just like her brother, they would stay outside all day if I would let them. She really enjoys swinging and going down the slide and also running back and forth trying to catch her big brother!
She is very talkative (much more so than Caden was at her age). She has at least 10+ words now, with new ones emerging daily. Her sleep routine is pretty good these days. She goes down around 6:30, gets up around 1-2 and then wakes up by 7...not too shabby! At her most recent doctors visit she weighed in at 22 pounds 5 ounces and was 32 inches tall (I think the measurment was off though...there is NO way that she is that tall). She did give us a scare the other night though. At the time I didn't know what was happening but it turns out that she had a febrile seizure. While I was getting her dressed she became very quiet and suddenly her lips turned blue and she started to shake. It lasted only minutes but it was very scary. Later that night she had a temperature of 102.8 so we took a trip to the doctor the next morning. It turns out that she had a double ear infection and the seizure was brought on by her sudden high temperature. It's nothing to be too concerned about, but we will defeinetely be keeping an eye on her now that we know what to watch for. It's never a dull moment in the Meinweiser household!
Overall, this past month was one of my favorites. Her personality is really shining through and I can't wait to see what she has in store for us this month. We love you Izzy-boo!

A Weekend with Mimi and Poppa

We were lucky enough to spend a gorgeous long weekend with my Mom and Dad. They arrived Saturday afternoon to an extremely giddy Caden and a shy little Isabel. Thankfully Izzy warmed right up to my Mom, but continued to be unsure of my Dad. Caden kept him quite busy though! Brian took advantage of my parents being there to help, and he finally went out and enjoyed some time with his friends! Sunday my Mom and I took Isabel shopping while my Dad and Brian took Caden to the park. Monday we enjoyed the warm weather and all took the kids to the zoo!

Monday night, Mimi helped Caden learn his letters and numbers by drawing them in shaving cream. I was hesitant, but it actually worked really well!

Of course Isabel had to get in on the action too! She enjoyed it until she put her hand in her mouth...she learned the hard way that shaving cream is NOT food!

We also had the pleasure of celebrating my Dad's birthday! My Mom made his favorite dinner (Shepard's Pie) and we got a yummy ice cream cake. Of course Caden had to help Poppa blow out his candles!

Overall it was a fantastic weekend. Filled with great family fun and wonderful weather!