RI Trip

Izzy and I were lucky enough to head home to Rhode Island for a weekend trip in September. Thankfully she did fantastic on the flight there and even better on the hour and a half drive from the airport to my parents house. That night we were able to meet up with my high school friends and their babies! It was so nice to see all them and Izzy had a blast playing with all of the kids. Thankfully she was gentle especially with the newborn! We also got a chance to visit with my Uncle, go to the petting zoo and do some much needed shopping. Overall it was a fantastic trip! 

Quick Cape May Trip

Sorry that I have been so neglectful of my blog lately. Anyways back in August we headed to Cape May NJ for a weekend getaway to visit my college roommate (Lacey) and her family. This trip had been planned for awhile and as the trip approached so did Hurricane Irene. We thought that we would be safe seeing that the storm was heading east so we headed to NJ anyway. The kids enjoyed the ferry ride and thankfully when we arrived the weather was nice enough to head to the water park. Both kids had a blast! As the day progressed the weather forecast looked dimmer and dimmer. By the time we left the water park they were starting to evacuate Cape May and the ferry had closed down for the rest of the weekend. Thankfully I called and got us the last spot on the ferry for that night (what luck)! We had to say goodbye to Lacey and her family and head home. It was a wonderful day, I just wish we could have spent more time in Cape May than we did in the car!

New Blog

I started a new blog just for Isabel. This way I can focus this blog more on our family life as a whole. Here is link, I hope you will follow me there
http://isabelgracevsepilepsy.blogspot.com/

This Time Last Year...

August 2010...

Izzy Update

Last week we had Isabel's first neuro appointment since her last set of seizures. He did not have any office availability so he met with us in his "on-call" room at the Children's Hospital. He obviously was not very happy with how Isabel's body handled the seizures so he decided to add another seizure medicine. She is now on Keppra (what she was one before) and Tegretol. She is going to be taking the medicine three times a day in smaller doses, instead of twice a day in larger doses like we have been doing. This sounded great at the time until I realised that I had to get up in the middle of the night to give her 2 syringes full of nasty tasting medicine!! So far she has been a real trooper though *knock on wood*!
We also spoke about her being so far behind with her language skills. She had quite a few words before this last set of seizures and now we can barely count 10. This past weekend she has just started to use some of the words that she learned prior to the last seizure. He recommended the name of a great speech therapist that he tends to send his "difficult" cases to (GREAT). He also recommended that we get a bag valve mask at home in case she stops breathing and we can not resusitate her with rescue breathes. I hope this doesnt happen, but it's always better to be safe than sorry. We set up a follow up appointment for September and were on our way. So overall, it was a very good appointment.  
After I dropped Izzy off at school I put a call into the speech therapist. Thankfully she (herself!!) called me back the next day and spoke for almost an hour. We set up an appointment for this past Tuesday and it was definetely not what I was expecting! She was fantastic with Isabel and held her attention for almost an hour. She believes that Isabel's brain is swelling after each set of seizures and is pressing on the broca area, which is responsible for speech. When the swelling starts to subside, Isabel will start to regain some of the words that she lost after the seizures. This makes perfect sense! She also agrees that Isabel is not moving her tongue when she speaks, which again is neurological and points back to the broca area of the brain. So...to make a long story short, Isabel will need intensive therapy twice a week until further notice. Trust me, I am NOT looking foward to this at all, but I will do anything for my little girl. We are going to try to get Caden involved in this therapy and bring him to at least one therapy session a week to make him feel included.
The news could have been much worse but honestly I am ready for the news to be 100% better. She is constantly on my mind and when I am not with her I am just waiting for my phone to ring saying that she has had another seizure. I know I talk a lot about her but she truely amazes me, she is my little hero.

Caden is 4!

I know I'm about a month late but we've been busy around here! I honestly can not believe that my little man is already 4 years old! Where has the time gone? Honestly, it feels like just yesterday that Brian and I were driving to Norfolk General to be induced and now he is already 4 years old...
We went all out this year for his party. The theme was pirates. We got a pirate ship bouncy house, two big inflatable pools, yummy food and a pirate cake. The kids loved it and most importantly, Caden had an absolute blast! We invited some of his school friends this year which made him even more happy. Each time a friend arrived he would run up to them and give them a big hug and then drag them over to the bouncy house! Let me tell you...little boys can be quite rough but the girls that were there held their own!

He got so many toys that we had to stash some in the closet to save for a later date. I can honestly say that I know we probably went a little over board this year but it was SO worth it. Just seeing his face and how incredibly happy he was, made it all worth it. With Isabel being so sick and needing so much attention sometimes it was nice to be able to focus all of our attention on Caden for the day.
He is turning into such a fantastic little man. He is so curious and fascinated with the world around him. He has a ton of energy and could probably go for days straight if I would let him. He is really looking forward to starting pre-K with his friends this year. He is doing very well with his letters and numbers and has learned how to write his first and last name.
Like many other kids his age, he has had to deal with a little sister...but Caden's situation is quite different and he knows it. It's hard for him sometimes when he sees Isabel getting extra attention when she is sick. He doesn't understand that he can't wrestle with her or hit her head like he does with his friends. We try to give him extra special time with both mom and dad but we only have so much to go around. Overall, he has been a great sport and we love him for that. He gets to do fun things with us that "sissy" can't do, and believe me, he really looks forward to those times.
He is a great little boy and I can't wait to see what year #4 brings us. We love you buggy!

This Time Last Year...

July 2010...

Hospital Stay Round 3

I know that I have been a bad blogger lately and I apologize for that. Between EMT class, work and the kids I haven't had much time to sleep, never mind blog! As you can tell by the title of this post, my poor baby had to endure yet another hospital stay. Forth of July weekend started off great! We spent a day at the bay with our friends and attended a great neighborhood cookout where the kids played their little hearts out for hours. On July 4th Isabel woke up with hives all over her body. While Brian and I were looking at them, she had a seizure. With the combination of the hives and the seizure I decided to take her to the closest ER. When we arrived, they hooked her up to a pulse ox (97%) and listened to her breathe sounds. They gave us a prescription for benedryl and sent us on our way seeing that she has epilepsy and has had seizures before. We were in and out in about 10 minutes. After we arrived home, she had two more seizures that got progressively worse. At this point I called the on-call neurologist who told us to come into the Children's Hospital. When we arrived, while we were in the triage room, she has another seizure which allowed us to get right back into a room (good timing Isabel!). While we were in the ER, she had four more seizures despite the bolus IV doses of seizure meds that she was receiving. Her pulse ox was dropping into the 40s and it seemed that each seizure was lasting a bit longer.

Thankfully they decided to admit her. When we got up to her room, she had two more seizures and these were the worse by far. Her pulse ox dropped to 4 (it's supposed to be 96-100) she was completely limp and blue and she was not coming out of them. They had to push the staff assist button and start bagging her. It was by far the scariest experience of my life. I somehow knew that she was going to be alright but having the knowledge that I have now, having to use a BVM is NOT a good thing. Shortly after these seizures the neurologist came in and thankfully Isabel had another seizure right in front of him. While she was seizing he checked her pulse and listened to her heart to rule out cardio problems and thankfully her heart seems just fine (wonderful news)! Thankfully he ordered a new seizure med called Dilantin. After they pushed that, her seizures stopped...but her hives got SO much  worse.

They think that she is allergic to the medicine, but hey I'll take worsening hives over seizures any day! They next day they did another EEG, which of course was clear. The hives worsened and she developed a fever.

They believe that she initially had a virus which brought on the hives. Since she has epilepsy she is weak already, so anytime that she gets sick she has a chance of getting breakthrough seizures and that is what happened in this case. The fever also came from the virus. Thankfully on day 3 the hives and fever began to subside and we finally got to go home!

I give my baby girl so much credit. She has been through so much already and she continues to be so strong and so sweet. We continue to watch her very closely and in the days that have followed she has been very tired which we believe is from her being overmedicated. She still has her happy, loving and spunky personality and that's all I care about!

This Time Last Year...

June 2010

Seizures and Surgeries!

In true Meinweiser fashion, we like to keep things interesting around here! On Friday I got a call from a very frantic daycare provider in Isabel's room. She told me that Isabel just had a seizure and that I needed to come as soon as I could. Thankfully it wasn't a full out seizure were she stopped breathing or I'm sure 911 would have been called and it would have turned into a fiasco. Her teacher told me that her eyes crossed briefly, she put her hands over her head and bent down for about 30 second. She then tried to walk over to the teacher, proceeded to throw up, then she fell asleep. I picked her up and thankfully besides being a bit tired, she was fine for the rest of the day. We have her neurologist appointment on the 14th and I can not wait to pick his brain about these seizures. Why do they keep happening...just about 4-5 weeks apart to the day? Any why did her eyes cross this time? Why did she throw up?
But, she is doing well now...back to her diva-like self and that's what we like to see!

This past Monday I had surgery on my mouth. I knew that there would be some pain with healing but WOW! This is comparable with getting my tonsils out! The surgeon told me that he had to put 51 stitches in my mouth...51 stitches and I can feel everyone of them, some are even hanging down from the roof of my mouth (nasty I know). I can't eat solid food until next Monday so I have been living on yogurt, pudding and milkshakes. I had mashed potatoes last night and I thought I had died and gone to heaven! The swelling is awful also. From my chin all the way to my forehead is about 2-3x the size that it should be and bruised at that! I look like I have been beaten! Oh well, I know this is a means to an end but for the time being I look a little something like this...

It's Always Something With Us Meinweisers!

This coming Monday I will be going into "surgery" to have subepithelial connective tissue grafting done on my gums. Basically they are going to cut pieces of tissue from the roof of my mouth and suture it to parts of my gums...OUCH! I will be awake but on Ativan for the procedure and yes, I am one of those people who is deathly afraid of the dentist so I am having anxiety about this already. On top of everything else insurance will only cover about 10% so this will be about 5,000$ out of pocket and I need to have it done twice (once on each side of my mouth). I am clearly in the wrong profession ladies and gentleman! Hopefully all goes well and I am "out of it" enough not to remember a thing!!

Isabel is 18 months!

She is not a baby anymore...she definitely has her own wants, needs and opinions! She is overall a very happy, active and affectionate toddler, but thanks to her big brother she does have a "tough side". She loves to play with trucks, dig in the dirt, shoot Nerf guns and play with dinosaurs much more than play with her baby dolls! Although she loves going shopping and picking out her own clothes (yes, already!). Isabel is finally starting to talk again. She had tons of words before her seizures started then her progress completely stopped and she didn't speak at all for a few months. Just this past month she started saying some of her old words plus some new ones. I'm sure she is very behind for her age but overall, I'm not overly concerned about it.
We started using the potty with her a few nights ago and we have had success once! She went pee-pee in the potty and I think that I put on such a show that going to the potty is all that she wants to do now! She is constantly running into the bathroom, trying to rip her diaper off!!
As far as sleeping goes...that's another area that needs improvement. She will go down around 6:30 and normally sleep until 4:30ish, then for the most part she is up for good (FOR GOOD)!! It's bearable on the weekdays since we have to get up at 5 anyway but on the weekends, it's just awful! Some nights she will also get up at 2:30 for a bottle, and yes, she still has a bottle! No, I don't care!! With everything that is going on in her life, I felt that a measly bottle before bed and in the middle of the night is not going to kill her in the long run!
She is getting ready to move up to the next room at school. It really is bitter sweet for me. I would love for her to stay right where she is because she gets such good care in the infant room but I can tell that she is getting bored in there.
Overall, she is doing very well. She has not had a seizure since the end of April but she does wake up shaking heavily at least 8-10 times a week. We have her neurologist appointment on the 15th along with her regular 18m appointment which is on the 7th. Everytime she gets a fever, we freak out. We are constantly waiting for the next seizure. I now it could be A LOT worse and I am thankful that my baby is as healthy as she is.
She is such a joy to have in our lives, I love you Izzy-girl!

Weight update: 24lbs 10 ounces and 31 inches

This Time Last Year...

May 2010

I know I say this all the time but wow, where has the time gone? Don't my babies look so little in these pictures?!

My Sanity is Slowly Slipping Away...

...and I'm frustrated. I'm tired. And did I mention that Holy Mother of Gosh I'M TIRED?! I brought some of this on myself by taking this EMT course which is turning out to be a fiasco. I do love every minute of it and am pouring my heart into it but as of now I am not sure if they will allow me to stay in the program. They sent my physical up to Occupational Health for further evaluation due to my type 1 diabetes back in March (MARCH) before the class even started. We are now almost halfway through the course and I still have not heard anything. The rest of my class will be receiving their intern badges tonight and I will not be. They will be able to start running their duties on the ambulance, and I will not be. I studied my ass off for the first test (and got a 95), and have spent countless hours away from my kids and if they deny me the chance to be in the class...huh well let's just say they aren't going to want to be around me when and if I get the bad news. I spoke with many people who are high up in the chain of command and although they feel for me, unfortunately they can do nothing for me but sympathize and honestly that's the last thing I want. So, hopefully I will hear something soon...and hopefully it will be good news so all this work that I have been doing is not for nothing.
Secondly, Isabel is always on my mind. She hasn't had any more seizures which is wonderful news but she is having more and more episodes where she wakes up shaking. Shaking to the point where she can't stand up but she is completely "there" mentally. I spoke with her doctor on the phone and he said that this is normal for kids to do maybe once every other month as their system matures but not twice a week or more like Izzy. She also seems like she is in a daze a lot of the time. She will just be staring off into space and won't respond to her name but when you say "cookie" or "ball" she will snap out of it and look right at you like nothing is wrong. Maybe it's just her personality...I don't know. But I am afraid that we are missing the big picture here. That maybe the seizures are a side effect of what is really wrong, maybe a disease that is just starting. I don't know...my mind is just running in millions of directions and I think that is because we don't have a single answer as to why any of this is happening. Thankfully the doctor moved her appointment up and we see him again in June.
On top of all of this, work has been very busy and Brian has been on me (now that he is the boss) to do more cases so I am stressed about keeping up on that end as well. I think I honestly need a mental health day...or week?!?!

Update

It's been a week or so since I've posted so I thought I would fill everyone in on our exciting life (HA).

Isabel:
...has been doing fantastic! She hasn't has any more seizures and has only had one episode where she woke up blue. Thankfully we now have the pulse ox monitor but I swear that girl is determined to take and keep it off of her foot! I can't tell you the number of time that the alarm has gone off and Brian and I have run into her room only to find her sitting up biting at her toe trying to remove the strap! She has reverted to getting up about twice a night since she has been home from the hospital. Once around 12:30 and again around 4. At 4 all she wants is to come into bed and snuggle with me and honestly I can't resist that! Her talking is starting to pick back up again. She was doing very well before the seizures started but then she stopped saying anything for awhile. Thankfully Caden is helping her by repeating words over and over again very loudly and right in front of her face.

Caden:
...is also doing very well. He is at a very tough age right now, very defiant and is really starting to talk back. He can be the sweetest, most gentle, caring little boy and then the next minute he turns into a little devil! I just don't get it! He is doing very well in school though. His teacher told me that he is turning into more of a leader than a follower which is always good. He has learned how to write his first and last name and is very interested in letters and numbers right now. He even knows how to court to ten in Spanish!

Brian:
I am so proud of my husband! He got a huge promotion at work and is now the Drug Section Supervisor which means...he is my BOSS! Yup...definitely not the best situation but we've got it under control! He has really stepped up at work and at home. I am gone so much due to class that he has the kids by himself3 nights a week and he is doing phenomenally well!

Me:
Last but not least...I'm good but busy! Work is just as busy as it always is but school is really kicking my butt. I've been out for so long that it is really hard for me to remember how to manage my time and study! I had my first test last night and am anxiously awaiting my score which I will receive on Tuesday!

Hopefully I will take some pictures this weekend...I wonder what Brian has up his sleeve for Mother's Day?!?!