This one wants to kill you
This one wants to kiss you
Oh how I love Meghan kisses *hearts*
Parenting an extra stubborn kid...or two.
8 years ago
Thursday, December 30, 2010
Good Bye Freedom
It has happened folks. The last straw is gone. The only peace we had in knowing that our toddler was fully confined in a humanistic way. Yes...our world just turned a different direction the same exact time that Meghan probably dumped on her head. She can now independently escape from her crib.
Now I use terms such as "probably dumped on her head" and "independently WITHOUT the use of effectively" for a couple reasons. 1) Moments after I put her to bed, I heard the hurt cry. Moms, dads, the.hurt.cry. I thought maybe she got her leg stuck in the slats of the crib. But before I knew it...here she comes barreling down the hall! 2) I've seen this child climb. She got a trampoline for Christmas (mainly for therapy reasons than fun). It's awesome. It has a bar on it to stabilize her while she jumps. Well, she likes to pull herself over the bar, and head first over the couch safely landing on the cushions (this is not part of her therapy...I guess this would be the fun part).
Thinking how the railing of the crib is much like the bar on the trampoline, she more than likely pulled herself on up, only to drop perilously to the floor and not softly on to the couch cushions. OK, with lots of love and some ice cream, she calmed down and we tried it again. Successfully this time, no escaping, no dumping, no tears (but with a boat load of pillows on the floor to break her fall just in case). See, if this wasn't Meghan, I would say that she learned her lesson and will either not do it again for a long time, or adjust her dismount in a way that wont hurt so bad. But no...Meghan does not comprehend danger...she likes to take risks...she actually probably thought the fall was fun until the landing.
No worries, we have a convertible bed. Pop the front off that bad boy and viola...we have a toddler day bed. But I fear the toddler bed. There is no stopping her. Oh the visions of Supernanny where they put the kid to bed time after time after time after hour after hour are floating in my head. Mark my words, Meghan will be that child. So with great regret (mainly towards the trampoline), we will be converting her crib tonight to a toddler bed, we will be searching on demand for past episodes of Supernanny, and we may just have an extra drink in anticipation of what our "new bedtime process" will look like.
On a lighter note...I do call this progress. HELLO...development before our eyes. So yeah I do regret losing the ability to confine her, but she is growing AND developing into a big girl. I will toast to that!
Now I use terms such as "probably dumped on her head" and "independently WITHOUT the use of effectively" for a couple reasons. 1) Moments after I put her to bed, I heard the hurt cry. Moms, dads, the.hurt.cry. I thought maybe she got her leg stuck in the slats of the crib. But before I knew it...here she comes barreling down the hall! 2) I've seen this child climb. She got a trampoline for Christmas (mainly for therapy reasons than fun). It's awesome. It has a bar on it to stabilize her while she jumps. Well, she likes to pull herself over the bar, and head first over the couch safely landing on the cushions (this is not part of her therapy...I guess this would be the fun part).
Thinking how the railing of the crib is much like the bar on the trampoline, she more than likely pulled herself on up, only to drop perilously to the floor and not softly on to the couch cushions. OK, with lots of love and some ice cream, she calmed down and we tried it again. Successfully this time, no escaping, no dumping, no tears (but with a boat load of pillows on the floor to break her fall just in case). See, if this wasn't Meghan, I would say that she learned her lesson and will either not do it again for a long time, or adjust her dismount in a way that wont hurt so bad. But no...Meghan does not comprehend danger...she likes to take risks...she actually probably thought the fall was fun until the landing.
No worries, we have a convertible bed. Pop the front off that bad boy and viola...we have a toddler day bed. But I fear the toddler bed. There is no stopping her. Oh the visions of Supernanny where they put the kid to bed time after time after time after hour after hour are floating in my head. Mark my words, Meghan will be that child. So with great regret (mainly towards the trampoline), we will be converting her crib tonight to a toddler bed, we will be searching on demand for past episodes of Supernanny, and we may just have an extra drink in anticipation of what our "new bedtime process" will look like.
On a lighter note...I do call this progress. HELLO...development before our eyes. So yeah I do regret losing the ability to confine her, but she is growing AND developing into a big girl. I will toast to that!
Wednesday, December 29, 2010
Christmas
What an amazing Christmas this year was. First off...I went in with a totally different attitude. As I mentioned in one of my previous posts, Life's Wham's, Christmas isn't about all the presents or the money spent. It's about the peace, love and joy by being surrounded by family and friends. This year...my most favorite gift of all was the visit by my sister and niece. My nephew was suppose to come with them, but unfortunately he got snowed in. So Christmas will continue in my heart when he comes to visit!
My sister, Kristi, lives down in Pismo Beach with my niece and nephew. She is a workaholic and not too big on road trips. Unfortunately, since Meghan started having seizures, we have not felt comfortable enough to travel with her. I guess I'm afraid to be away from home, our doctors, our hospital just in case something happened. So, thinking back, I think it has been about 2 years since I saw Kristi!
On Christmas eve, I had the day off. Elizabeth and I set off to run some errands and drop by one of my besties house. FYI...she has one of the cutest babies ever! Elizabeth was not feeling too well. She came down with a cold a couple days prior and was not her happy go lucky self. Unfortunately, I lead to some of her pain. I have ear cleanliness OCD. I can't stand looking into kids ears and see nothing but gross, yellow wax. The best way for me to clean ears is with a Q-tip. I know, I know...anything smaller than your elbow should not be put in your ears...sue me, I USE Q-TIPS! Well, I'm guessing, with Elizabeth's cold, maybe her ear drums were a little swollen. So, I ended up puncturing BOTH her ear drums. So, I gave her some antibiotic ear drops, left over from ear tube surgeries, and hoped and prayed I did not have to take her to the doctor (I knew a lecture would be coming). After we got home, I finished wrapping presents and prepped for Christmas. We started a Christmas morning tradition last year of making a breakfast casserole the night before so we can just pop it in the oven the next morning. Super easy. I made the casserole and homemade coffee cake for that night. That evening my sister and niece came into town, and my other sister, Kim, who lives about 20 minutes away ("on the other side of the river"), her husband, and my other two nephews came over. We opened up some presents and just enjoyed each other to the fullest. We got my mom a photo memory book of her and all of us growing up. She LOVED it. And all of us sharing those memories, priceless! Finally the girls went to bed, Santa and his helpers put presents together, and then we passed out sometime early Christmas morning!
Christmas morning, the girls slept in. YES...they slept in. At about 8 we rolled out of bed to see what Santa had brought. Nothing can warm your heart faster than watching pure excitement come across your children's face. I relished in their joy, and once they were over the initial excitement, it was on to the presents. Luckily, the presents between Elizabeth and Meghan ended up being exactly even. Not that I count, but I have a certain 6 year old that does and it would be total meltdown if a certain 2 year old walked away with more (I've tried to explain monetary/quality vs. quantity...but hey, she is only 6). After that, the in laws came over and we had more presents to unwrap. At this point, I was pretty stressed...toooooo much disarray in my living room....and kitchen! We had a really quite afternoon of playing and cleaning. That evening we headed to my sisters house for dinner. Luckily, my sister and I married into the same family, so we have one big family function instead of running all over the greater Sacramento area! A few hours later, two very exhausted parents, and two very cranky kids headed home to pass out in bed. Got the kids in bed, took a bath, and lights out for me.
The next morning we all met up for breakfast. My sister was headed back home, so we had one more get together then it was off to shop. Talk about score! We needed a new couch bad. Ours was falling apart and it was irreparable. Many stores later, we found the perfect couch that we both LOVED!! My sister...love her...was seeking a new table. Now the cool thing is we LOVE her table. Them, not so much. So if they happened upon a new table at the right price they liked, then we got the old one. AND they did!!!! By that night, we were the proud owners of a new table and couch. Also...another big item for the house...Matt got a fish tank. We agreed on a 90 gallon, but it fits perfect in our living room. Yeah for the kids getting older, which means the toys get smaller!!!
What a year 2010 has been. It has had it ups and downs, inside outs, and many times, we didn't know which way was forward. 2010 brought a lot of heartache where three very amazing people became beautiful angels in Heaven! Two I never had the honor of meeting and one I worked closely with over the past several years. BUT all three of them changed me...for the better...and with a new outlook...I look forward to charging into 2011 with the best attitude I have ever had!
For all of you, be safe this New Years eve, have fun, give your loved ones an extra special hug, and say a prayer for those who aren't here to celebrate the new year <3
My sister, Kristi, lives down in Pismo Beach with my niece and nephew. She is a workaholic and not too big on road trips. Unfortunately, since Meghan started having seizures, we have not felt comfortable enough to travel with her. I guess I'm afraid to be away from home, our doctors, our hospital just in case something happened. So, thinking back, I think it has been about 2 years since I saw Kristi!
On Christmas eve, I had the day off. Elizabeth and I set off to run some errands and drop by one of my besties house. FYI...she has one of the cutest babies ever! Elizabeth was not feeling too well. She came down with a cold a couple days prior and was not her happy go lucky self. Unfortunately, I lead to some of her pain. I have ear cleanliness OCD. I can't stand looking into kids ears and see nothing but gross, yellow wax. The best way for me to clean ears is with a Q-tip. I know, I know...anything smaller than your elbow should not be put in your ears...sue me, I USE Q-TIPS! Well, I'm guessing, with Elizabeth's cold, maybe her ear drums were a little swollen. So, I ended up puncturing BOTH her ear drums. So, I gave her some antibiotic ear drops, left over from ear tube surgeries, and hoped and prayed I did not have to take her to the doctor (I knew a lecture would be coming). After we got home, I finished wrapping presents and prepped for Christmas. We started a Christmas morning tradition last year of making a breakfast casserole the night before so we can just pop it in the oven the next morning. Super easy. I made the casserole and homemade coffee cake for that night. That evening my sister and niece came into town, and my other sister, Kim, who lives about 20 minutes away ("on the other side of the river"), her husband, and my other two nephews came over. We opened up some presents and just enjoyed each other to the fullest. We got my mom a photo memory book of her and all of us growing up. She LOVED it. And all of us sharing those memories, priceless! Finally the girls went to bed, Santa and his helpers put presents together, and then we passed out sometime early Christmas morning!
Christmas morning, the girls slept in. YES...they slept in. At about 8 we rolled out of bed to see what Santa had brought. Nothing can warm your heart faster than watching pure excitement come across your children's face. I relished in their joy, and once they were over the initial excitement, it was on to the presents. Luckily, the presents between Elizabeth and Meghan ended up being exactly even. Not that I count, but I have a certain 6 year old that does and it would be total meltdown if a certain 2 year old walked away with more (I've tried to explain monetary/quality vs. quantity...but hey, she is only 6). After that, the in laws came over and we had more presents to unwrap. At this point, I was pretty stressed...toooooo much disarray in my living room....and kitchen! We had a really quite afternoon of playing and cleaning. That evening we headed to my sisters house for dinner. Luckily, my sister and I married into the same family, so we have one big family function instead of running all over the greater Sacramento area! A few hours later, two very exhausted parents, and two very cranky kids headed home to pass out in bed. Got the kids in bed, took a bath, and lights out for me.
Elizabeth loving her Santa pile
Santa brought Meghan a Yo Gabba Gabba toy...that's all she needed
The next morning we all met up for breakfast. My sister was headed back home, so we had one more get together then it was off to shop. Talk about score! We needed a new couch bad. Ours was falling apart and it was irreparable. Many stores later, we found the perfect couch that we both LOVED!! My sister...love her...was seeking a new table. Now the cool thing is we LOVE her table. Them, not so much. So if they happened upon a new table at the right price they liked, then we got the old one. AND they did!!!! By that night, we were the proud owners of a new table and couch. Also...another big item for the house...Matt got a fish tank. We agreed on a 90 gallon, but it fits perfect in our living room. Yeah for the kids getting older, which means the toys get smaller!!!
Kristi and I
Sisters <3 Kim, Kristi and me - Kerri (notice a pattern!)
What a year 2010 has been. It has had it ups and downs, inside outs, and many times, we didn't know which way was forward. 2010 brought a lot of heartache where three very amazing people became beautiful angels in Heaven! Two I never had the honor of meeting and one I worked closely with over the past several years. BUT all three of them changed me...for the better...and with a new outlook...I look forward to charging into 2011 with the best attitude I have ever had!
For all of you, be safe this New Years eve, have fun, give your loved ones an extra special hug, and say a prayer for those who aren't here to celebrate the new year <3
Wednesday, December 22, 2010
I've Missed You!
Wow...talk about neglect. It has been a while. OK, so let me get you up to speed with the important stuff in our lives over the past month.
Thanksgiving:
We hosted thanksgiving at our house. Had a blast. That morning I ran my first 5K for the Race to Feed the Hungry. It was awesome. That got me motivated and I have committed myself to running a half marathon in May! So super excited.
Santa's Secret Adventure:
There is this amazing barn and stable place up in Penryn CA. During Christmas time they host this Santa's Secret Adventure. Every inch of the place is decorated with 1000's of lights. They have carriage rides, horse rides, wrap presents with Santa's elves, cookies and hot chocolate, story time around the fire with Santa's elves, and of course the big guy himself, Santa! I surprised Elizabeth with a trip there. I told her that Matt, her and I were going on a special date but didn't tell her where we were going. Hardest thing ever because I get so super excited and I just want to blurt in out. Elizabeth was totally surprised when we got there. Smiles from ear to ear all night long! I totally wish I would have brought Meghan because I know that she would have loved it too, but being the first time, I had no idea what to expect. Next year for sure I will be taking her!
Family Christmas Party:
Every year my husband's side of the family gets together for an annual Christmas party. This year, his aunt and uncle came down from Oregon and his brother came from Santa Cruz. We weren't sure if it was going to happen because we were expected to get hit pretty hard with storms, but mother nature cooperated and low and behold, we had our party. Tons of food and tons of laughs. It was a good time. We always do a white elephant gift exchange. Not too bad, I walked away with case of darn good beer! Thanks neph!!!
Meghan Update:
A couple weeks ago we took Meghan in for a routine MRI to see if the light areas of her brain have improved since the steroid treatment she was on. Meghan's seizures have pretty much been completely under control so I had a super positive outlook on this MRI. The Monday after her MRI, the nurse from the neuro's office calls asking if we can come in at 3:00 the next day to discuss the results of the MRI. So at the same time I'm trying to figure out 1. WTF is wrong with the MRI if there is anything wrong 2. What is our schedule like tomorrow 3. Don't cry Don't cry Don't cry. So I stammer out that yes we can, if we both can't be there at least one of us will. Then I immediately ask in a quivering voice..."Is it bad". The poor nurses response was..."I'm not sure, Dr Chez just called and wanted me to call you to discuss the MRI." So then I proceed to tell her..."Well of course it has to be bad, I mean you don't call to schedule an appointment within 24 hours to tell us everything is just fine." Poor nurse quickly ended the call and I was left sitting on the floor crying. Matt comes in, and in the middle of telling him about the phone call, the neuro's office called back. The nurse practitioner, who obviously talked to the poor nurse, said that her left side of the brain (the part with the damage) appears to be smaller...ie. worse. But good news, the light area looks better.
Matt, Meghan and I made it to the appointment and was ready for the news. The left side does appear smaller from the previous MRI, but he thinks that it could be a side effect from the steroids. Something called Pseudoatrophy. I guess it takes about 6 months for the steroids to completely leave the body. As a result of the steroids, they could somehow make the brain "appear" to be smaller but it SHOULD be normal once she no longer has the drug in her body. So...we wait until her next MRI in June to verify if that is what it is. If it is not that....then back to the drawing board. So frustrating.
Overall...Meghan is developing leaps and bounds. Her Occupational Therapist, Speech Therapist, and Developmental Therapist see amazing progress in her development. It is so darn cute to hear her jabber and "tell her sister off" when she is mad.
We are all super excited for Christmas. My other sister, nephew and niece who live down in Pismo Beach are travelling up. I haven't seen them in forever. It is going to be amazing!!! And the girls, well lets just say, I am lucky that there are still paper on the presents!
I want to wish you all a very Merry Christmas! For those who are missing somebody important in their life this Christmas, you all are in my prayers. I pray that you will find some peace and comfort during this Holiday. Much love to you all!!!
Thanksgiving:
We hosted thanksgiving at our house. Had a blast. That morning I ran my first 5K for the Race to Feed the Hungry. It was awesome. That got me motivated and I have committed myself to running a half marathon in May! So super excited.
Matt and I at Thanksgiving
Elizabeth and I
Sweet Meghan
Adam, Courtney, Autumn, and Me :)
Santa's Secret Adventure:
There is this amazing barn and stable place up in Penryn CA. During Christmas time they host this Santa's Secret Adventure. Every inch of the place is decorated with 1000's of lights. They have carriage rides, horse rides, wrap presents with Santa's elves, cookies and hot chocolate, story time around the fire with Santa's elves, and of course the big guy himself, Santa! I surprised Elizabeth with a trip there. I told her that Matt, her and I were going on a special date but didn't tell her where we were going. Hardest thing ever because I get so super excited and I just want to blurt in out. Elizabeth was totally surprised when we got there. Smiles from ear to ear all night long! I totally wish I would have brought Meghan because I know that she would have loved it too, but being the first time, I had no idea what to expect. Next year for sure I will be taking her!
Elizabeth and I on a Carriage Ride
Matt and Elizabeth in front of some of the many Christmas Trees
Being cut Christmas ornaments!!
Elizabeth wrapping presents with one of Santa's Elves!
Pony rides!
Gotta have our pictures with the Mrs.......
Family Christmas Party:
Every year my husband's side of the family gets together for an annual Christmas party. This year, his aunt and uncle came down from Oregon and his brother came from Santa Cruz. We weren't sure if it was going to happen because we were expected to get hit pretty hard with storms, but mother nature cooperated and low and behold, we had our party. Tons of food and tons of laughs. It was a good time. We always do a white elephant gift exchange. Not too bad, I walked away with case of darn good beer! Thanks neph!!!
Meghan sporting the Santa hat!
Somebody LOVES Christmas!!
Meghan Update:
A couple weeks ago we took Meghan in for a routine MRI to see if the light areas of her brain have improved since the steroid treatment she was on. Meghan's seizures have pretty much been completely under control so I had a super positive outlook on this MRI. The Monday after her MRI, the nurse from the neuro's office calls asking if we can come in at 3:00 the next day to discuss the results of the MRI. So at the same time I'm trying to figure out 1. WTF is wrong with the MRI if there is anything wrong 2. What is our schedule like tomorrow 3. Don't cry Don't cry Don't cry. So I stammer out that yes we can, if we both can't be there at least one of us will. Then I immediately ask in a quivering voice..."Is it bad". The poor nurses response was..."I'm not sure, Dr Chez just called and wanted me to call you to discuss the MRI." So then I proceed to tell her..."Well of course it has to be bad, I mean you don't call to schedule an appointment within 24 hours to tell us everything is just fine." Poor nurse quickly ended the call and I was left sitting on the floor crying. Matt comes in, and in the middle of telling him about the phone call, the neuro's office called back. The nurse practitioner, who obviously talked to the poor nurse, said that her left side of the brain (the part with the damage) appears to be smaller...ie. worse. But good news, the light area looks better.
Matt, Meghan and I made it to the appointment and was ready for the news. The left side does appear smaller from the previous MRI, but he thinks that it could be a side effect from the steroids. Something called Pseudoatrophy. I guess it takes about 6 months for the steroids to completely leave the body. As a result of the steroids, they could somehow make the brain "appear" to be smaller but it SHOULD be normal once she no longer has the drug in her body. So...we wait until her next MRI in June to verify if that is what it is. If it is not that....then back to the drawing board. So frustrating.
Overall...Meghan is developing leaps and bounds. Her Occupational Therapist, Speech Therapist, and Developmental Therapist see amazing progress in her development. It is so darn cute to hear her jabber and "tell her sister off" when she is mad.
We are all super excited for Christmas. My other sister, nephew and niece who live down in Pismo Beach are travelling up. I haven't seen them in forever. It is going to be amazing!!! And the girls, well lets just say, I am lucky that there are still paper on the presents!
I want to wish you all a very Merry Christmas! For those who are missing somebody important in their life this Christmas, you all are in my prayers. I pray that you will find some peace and comfort during this Holiday. Much love to you all!!!
Monday, November 22, 2010
Life's WHAM'S
Life is a funny little thing at times. You can just mosey on through life and then ...WHAM...you are hit upside the head with something! As kids I think the WHAM was being grounded or having to live by your parents rules...hence why we all couldn't wait to grow up. As adults though...the WHAM'S are too numerous to list and we are left doing the mental (or really) head slap questioning why we ever wanted to grow up! I chuckle at this then catch myself turning around and telling Elizabeth (sounding just like my mom) growing up is not all the glory you think it is.
So at this point Christmas is a mere 33 days away. The ending of another year...phew. BUT this year was so very different for me. This year has changed me as a person, touching and moving the very being that I am, more than any other year or even decade for that matter.
Christmas can either be the most joyous time of year or stressful time. In simple terms, my Christmas's have evolved as follows:
Kid Years: oh my gosh, do I have the most presents under the tree...I truly hope so (sorry sis's)
Teenage Years: I wonder how much my friends are spending on me so I know how much to spend on them...and hopefully I have some darn good presents under the tree.
College Years: friends, don't buy me anything cuz I can't buy you anything. Mom...I really need this and that.
Married With A Double Income Years: I am going to buy the most awesome presents for everyone! This is so frykn awesome!!!
Married With A Double Income and Children Years: oh my...am I still paying for last Christmas. Family and friends, don't buy us anything we can't afford to exchange. BUT...the stress of the making sure the girls have the latest and greatest thing!
So you see I had lost track of the true meaning of Christmas and fell into the trap of the Holiday being solely material. I mean how can we be happy if we don't have the best of the best. I'm a Christian and fell into that horrible trap where I dread the greatest Holiday ever!!! So, as Christmas has been quickly approaching my anxiety level has been out of control. After all our expenses have been crazy this year (new roof, gutters, outside house paint) so I have been seeing what income is going to come in going forward and what money I can pull from each paycheck from now until Christmas.
Well thank you God for the simple conversation I had with a 7 year old that truly WHAMMED me in the face. Elizabeth became friends with a girl (she is 7) last year in Kindergarten who actually lives just down the street. They had moved in about 5 years ago but we never met them. Starting this last March, Elizabeth and her friend have been playing together regularly. We have gotten to know who her parents are and truly have built a friendship with them. The nicest family EVER! What is awesome is that they are a family of 5 living on one income. The mom stays home and cares for the kids (13, 7, and 5) and the house! You seriously cannot find a family that has a bigger heart than them. Elizabeth's friend is ALWAYS grateful for everything! If you do the simplest thing for her she always smiles and it is always accompanied by a big thank you and a huge hug. So not like Elizabeth. I'm so sad to say that Elizabeth is easily one of the most ungrateful kids I know when it comes to materialistic things. I don't blame her for this...I blame us!
So back to the conversation with Elizabeth's friend, I asked her what "Santa" brought her for Christmas last year. With the biggest smile EVER...she said that he brought her the new Tinker Bell movie. I sat there waiting for more...and Elizabeth bluntly said...that's it!!! WHAM...hello what have I created in Elizabeth??!! Here is a child that got a movie from "Santa" who was and still is extremely excited...and here was MY child who couldn't believe that "Santa" only brought her that. I have honestly gone wrong over these years. I have built everything around the material things in life.
So with some sole searching, Christmas isn't going to be what it has always been. It's not the amount of presents or how much you have spent. It's about truly understanding the meaning of Christmas and holding on and loving each of your loved ones. In less than a week I have gone from being completely stressed about Christmas to so very excited. Sure, Elizabeth and Meghan will have presents under the tree and deliveries from "Santa"...but it won't be like the past years. That is not what Christmas is about!
I have always been a strong independent person in life. I guess you can also throw in stubborn. But this past year I have had some amazing life changing moments. These life changing moments have not been from amazing speakers, sophisticated family members, or anyone of that nature. They solely have come from an amazing 3-month old angel Grace (and her parents) who I never had the honor of meeting, my amazing 2 year old Meghan, and the conversation of Elizabeth's 7 year old friend. WOW...I have years and years on them, but they have the heart and soul on me. Thank you to you three. You have made me more of a person than I ever was in my 34 years.
This Thanksgiving and Christmas, stop and think who has touched your lives and give thanks and love to them. Sometimes the people you least expect to truly change your life are the ones that will EVER make the biggest impact.
So at this point Christmas is a mere 33 days away. The ending of another year...phew. BUT this year was so very different for me. This year has changed me as a person, touching and moving the very being that I am, more than any other year or even decade for that matter.
Christmas can either be the most joyous time of year or stressful time. In simple terms, my Christmas's have evolved as follows:
Kid Years: oh my gosh, do I have the most presents under the tree...I truly hope so (sorry sis's)
Teenage Years: I wonder how much my friends are spending on me so I know how much to spend on them...and hopefully I have some darn good presents under the tree.
College Years: friends, don't buy me anything cuz I can't buy you anything. Mom...I really need this and that.
Married With A Double Income Years: I am going to buy the most awesome presents for everyone! This is so frykn awesome!!!
Married With A Double Income and Children Years: oh my...am I still paying for last Christmas. Family and friends, don't buy us anything we can't afford to exchange. BUT...the stress of the making sure the girls have the latest and greatest thing!
So you see I had lost track of the true meaning of Christmas and fell into the trap of the Holiday being solely material. I mean how can we be happy if we don't have the best of the best. I'm a Christian and fell into that horrible trap where I dread the greatest Holiday ever!!! So, as Christmas has been quickly approaching my anxiety level has been out of control. After all our expenses have been crazy this year (new roof, gutters, outside house paint) so I have been seeing what income is going to come in going forward and what money I can pull from each paycheck from now until Christmas.
Well thank you God for the simple conversation I had with a 7 year old that truly WHAMMED me in the face. Elizabeth became friends with a girl (she is 7) last year in Kindergarten who actually lives just down the street. They had moved in about 5 years ago but we never met them. Starting this last March, Elizabeth and her friend have been playing together regularly. We have gotten to know who her parents are and truly have built a friendship with them. The nicest family EVER! What is awesome is that they are a family of 5 living on one income. The mom stays home and cares for the kids (13, 7, and 5) and the house! You seriously cannot find a family that has a bigger heart than them. Elizabeth's friend is ALWAYS grateful for everything! If you do the simplest thing for her she always smiles and it is always accompanied by a big thank you and a huge hug. So not like Elizabeth. I'm so sad to say that Elizabeth is easily one of the most ungrateful kids I know when it comes to materialistic things. I don't blame her for this...I blame us!
So back to the conversation with Elizabeth's friend, I asked her what "Santa" brought her for Christmas last year. With the biggest smile EVER...she said that he brought her the new Tinker Bell movie. I sat there waiting for more...and Elizabeth bluntly said...that's it!!! WHAM...hello what have I created in Elizabeth??!! Here is a child that got a movie from "Santa" who was and still is extremely excited...and here was MY child who couldn't believe that "Santa" only brought her that. I have honestly gone wrong over these years. I have built everything around the material things in life.
So with some sole searching, Christmas isn't going to be what it has always been. It's not the amount of presents or how much you have spent. It's about truly understanding the meaning of Christmas and holding on and loving each of your loved ones. In less than a week I have gone from being completely stressed about Christmas to so very excited. Sure, Elizabeth and Meghan will have presents under the tree and deliveries from "Santa"...but it won't be like the past years. That is not what Christmas is about!
I have always been a strong independent person in life. I guess you can also throw in stubborn. But this past year I have had some amazing life changing moments. These life changing moments have not been from amazing speakers, sophisticated family members, or anyone of that nature. They solely have come from an amazing 3-month old angel Grace (and her parents) who I never had the honor of meeting, my amazing 2 year old Meghan, and the conversation of Elizabeth's 7 year old friend. WOW...I have years and years on them, but they have the heart and soul on me. Thank you to you three. You have made me more of a person than I ever was in my 34 years.
This Thanksgiving and Christmas, stop and think who has touched your lives and give thanks and love to them. Sometimes the people you least expect to truly change your life are the ones that will EVER make the biggest impact.
Monday, November 8, 2010
Disabled
For the first time ever, I'm admitting that my child is disabled. Ever since Meghan had her drastic regression in development, going from a normal 10 month old baby to being the equivalent of a 2 month old in every aspect, I have always held on to the fact that she is just delayed. My child is not disabled, she is just delayed. When my heart would race with anxiety of her condition, I would tell myself to calm down, she is just delayed. She will catch up. She is just delayed.
About two weeks ago we had our 6 month IDP with our intake coordinator with Alta Regional. At little bit of background, Meghan was accepted in the Early Intervention Program after her set back. Alta mainly used Easter Seals as our vendor for Developmental Therapy, Occupational Therapy, Speech Therapy, and Physical Therapy. All children can remain in this Early Intervention Program until they are 3 years old. At that time, they become the responsibility of the school district to take over all developmental needs in order for them to succeed or develop in life. There is a chance however, to continue services with Alta Regional, if your child is deemed, by their board members, as being severely handicapped or disabled. If this happens, whenever we go up against the school district for her IEP's, we will have an advocate from Alta backing her disabilities and pushing for services if they are reluctant. They also help setting Medical and SSI in place for families.
We got the call from our intake coordinator that the board has deemed Meghan disabled and they will be continuing her case when she turns 3. Bittersweet! Yay, we have an advocate, another voice that will help get Meghan what she needs! A support system that we can turn too. The help with getting signed up for Medical and SSI. BUT, my child, Meghan is disabled. That is hard to swallow. It was hard enough to come to grips with her being so delayed, that accepting the label disability will take some time. And this may not be a permanent disability. If we can keep her seizures under control, and reduce some of her medications, then she may develop leaps and bounds and catch up to her age level. I am very confident by the time Kindergarten comes around, she just may be able to run with the big kids :) So even though Meghan being labeled disabled is bittersweet, I will always continue to hold on to hope that she will overcome it. If not, then that's OK. She is my huggable, luvable, squeezable Meggers and disability or not, I will do whatever it takes to be the best mom ever!! Trying it on for size....My name is Kerri, and I have a child with a disability. Not as hard as I thought!
These poems have helped me immensely through our process: A Magical Poem and Welcome To Holland
About two weeks ago we had our 6 month IDP with our intake coordinator with Alta Regional. At little bit of background, Meghan was accepted in the Early Intervention Program after her set back. Alta mainly used Easter Seals as our vendor for Developmental Therapy, Occupational Therapy, Speech Therapy, and Physical Therapy. All children can remain in this Early Intervention Program until they are 3 years old. At that time, they become the responsibility of the school district to take over all developmental needs in order for them to succeed or develop in life. There is a chance however, to continue services with Alta Regional, if your child is deemed, by their board members, as being severely handicapped or disabled. If this happens, whenever we go up against the school district for her IEP's, we will have an advocate from Alta backing her disabilities and pushing for services if they are reluctant. They also help setting Medical and SSI in place for families.
We got the call from our intake coordinator that the board has deemed Meghan disabled and they will be continuing her case when she turns 3. Bittersweet! Yay, we have an advocate, another voice that will help get Meghan what she needs! A support system that we can turn too. The help with getting signed up for Medical and SSI. BUT, my child, Meghan is disabled. That is hard to swallow. It was hard enough to come to grips with her being so delayed, that accepting the label disability will take some time. And this may not be a permanent disability. If we can keep her seizures under control, and reduce some of her medications, then she may develop leaps and bounds and catch up to her age level. I am very confident by the time Kindergarten comes around, she just may be able to run with the big kids :) So even though Meghan being labeled disabled is bittersweet, I will always continue to hold on to hope that she will overcome it. If not, then that's OK. She is my huggable, luvable, squeezable Meggers and disability or not, I will do whatever it takes to be the best mom ever!! Trying it on for size....My name is Kerri, and I have a child with a disability. Not as hard as I thought!
These poems have helped me immensely through our process: A Magical Poem and Welcome To Holland
Thursday, November 4, 2010
Finally A Diagnosis...Sort Of
Tuesday we had an EEG for Meghan. We have seen very little to no seizure activity over these past several weeks, so I was so excited to see what the EEG would look like. Well...not too good. Still abnormal with more spiking on the left side (the more "sick" side) with some on the right. It is hard to say if she is actually have seizures on that side, or if the seizures are firing very close to the right side and just crossing the hemisphere. She had better EEG's when she was on the Steroids, but the overall improvement from the Steroids themselves was very minimal. Minimal enough where he felt that the risks outweighed the benefits. So far, the medication that has worked the best is the Felbatol. Dr Chez was hoping for a better EEG, but was so totally thrilled to hear about her diminished seizure activity.
Meghan has been seizure free, but her balance is so bad. She literally bounces off the walls when she walks down the hall. It is so sad to see her get frustrated from falling all the time. So, starting today, we are reducing her Clobazam and Depakote to see if that will help her. I'm totally nervous. I really hope that we wont see an increase in her seizure activity.
So I spend a lot of time on the Internet researching Epilepsy. About a month back I happened upon Dravet Syndrome. When I read about the onset, seizure progression, triggers, reluctant to medications, and the developmental delays, I could swear this was written for Meghan. So Tuesday I asked the Neuro about her possibly having Dravet Syndrome. He indicated that he was pretty sure that during her genetic testing, the SCNA1 Channel came back normal, which it did. I reminded him that it was indicated that one of her channels came back abnormal. He pulled up her tests and found that she did have an abnormal mutation in her KCNQ2 Channel. He then went on about how the Channelopothy's work and blah blah blah blah (I shut down when it comes to genetic talk). To sum it up...he is confident the she has some form of epilepsy that could be Dravet (because you don't need to have the gene mutation, they can clinically diagnose it) or related to Dravet (undiscovered...still). Hello...where is my kick down doc??? After all, I suggested it...right (LOL).
From here going forward, we are going to continue on our path of treatment of medications. She is responding well to these current medications which is awesome! We will be doing another MRI in hopes to see a reduction in her brain inflammation due to the past Steroid treatment and her lack of seizure activity. We have the Keto Diet in our back pocket if need be. We are also going to more than likely pursue the HBOT (just need to figure out fundraising). Unfortunately our hope that Meghan will outgrow her seizures is diminishing rather quickly. So...we will pick up our boot straps and keep on truckn (I think that's a saying...I get them confused).
Meghan has been seizure free, but her balance is so bad. She literally bounces off the walls when she walks down the hall. It is so sad to see her get frustrated from falling all the time. So, starting today, we are reducing her Clobazam and Depakote to see if that will help her. I'm totally nervous. I really hope that we wont see an increase in her seizure activity.
So I spend a lot of time on the Internet researching Epilepsy. About a month back I happened upon Dravet Syndrome. When I read about the onset, seizure progression, triggers, reluctant to medications, and the developmental delays, I could swear this was written for Meghan. So Tuesday I asked the Neuro about her possibly having Dravet Syndrome. He indicated that he was pretty sure that during her genetic testing, the SCNA1 Channel came back normal, which it did. I reminded him that it was indicated that one of her channels came back abnormal. He pulled up her tests and found that she did have an abnormal mutation in her KCNQ2 Channel. He then went on about how the Channelopothy's work and blah blah blah blah (I shut down when it comes to genetic talk). To sum it up...he is confident the she has some form of epilepsy that could be Dravet (because you don't need to have the gene mutation, they can clinically diagnose it) or related to Dravet (undiscovered...still). Hello...where is my kick down doc??? After all, I suggested it...right (LOL).
From here going forward, we are going to continue on our path of treatment of medications. She is responding well to these current medications which is awesome! We will be doing another MRI in hopes to see a reduction in her brain inflammation due to the past Steroid treatment and her lack of seizure activity. We have the Keto Diet in our back pocket if need be. We are also going to more than likely pursue the HBOT (just need to figure out fundraising). Unfortunately our hope that Meghan will outgrow her seizures is diminishing rather quickly. So...we will pick up our boot straps and keep on truckn (I think that's a saying...I get them confused).
Tuesday, November 2, 2010
What I Never Expected To Know
I know the difference between her Complex Partial, Generalized Tonic-Clonic, and Myoclonic Seizures. I know when she is startled or when she is having Myoclonic Twitches.
I know about Clusters.
I know her Aura's and when she is in a Postictal Stage.
I know her triggers and how to avoid excess seizure activity.
I know that the excess drool sometimes is not do to her cutting molars.
I know way too much about Anti-Epileptic, Anticonvulsants, and Rescue Medications.
I know the EEG process inside and out. I know what abnormal brain waves look like and which side of the brain they are firing from. I know where Lead T3 connects and how to fix it if it comes loose. I know the variations in the Strode Test.
I know what her brain looks like through her MRI's. I know, from the inside, how damaging epilepsy can be. I know where to identify the abnormalities...and I can show you.
I know the difference between an Ambulatory EEG and an EMU.
I know what SUDEP stands for and I fear it. I know what SMEI is and I truly believe she may have this. I know at what point she may go Status in a Seizure.
I know when to breathe easy, and when to call 911.
I can have a conversation with her Neuro Surgeon regarding a Hemispherectomy, Cross-Hemispheric Seizures, Brain Biopsy and know exactly what he is talking about.
I know how to give her shots, take her blood pressure, and monitor for Ketones in her urine.
I know to fear fevers and flu season.
I know what it feels like to hold a sleeping baby all night just so I can feel for seizures.
I know the PICU and Special Care Unit nurses by name.
I know what a Downstream Occlusion is, and I can actually fix it now.
I know the difference between the IV alarm, Respiratory alarm, and Pulse Ox alarm without even looking.
And most recently, I know the finality of Epilepsy.
This is MY Holland, and amongst all of this, I have a precious little girl who loves life! A little girl who thinks all of this is normal. I still hold out hope and pray that this could be a part of our past and that someday we will be seizure and medication free! It's her smiles and hugs, that make all the glitz and glamour of Italy seem so unimportant in life.
November is Epilepsy Awareness Month!!! Please say a prayer for all those who live with this horrible disease.
This is a face of Epilepsy <3
I know about Clusters.
I know her Aura's and when she is in a Postictal Stage.
I know her triggers and how to avoid excess seizure activity.
I know that the excess drool sometimes is not do to her cutting molars.
I know way too much about Anti-Epileptic, Anticonvulsants, and Rescue Medications.
I know the EEG process inside and out. I know what abnormal brain waves look like and which side of the brain they are firing from. I know where Lead T3 connects and how to fix it if it comes loose. I know the variations in the Strode Test.
I know what her brain looks like through her MRI's. I know, from the inside, how damaging epilepsy can be. I know where to identify the abnormalities...and I can show you.
I know the difference between an Ambulatory EEG and an EMU.
I know what SUDEP stands for and I fear it. I know what SMEI is and I truly believe she may have this. I know at what point she may go Status in a Seizure.
I know when to breathe easy, and when to call 911.
I can have a conversation with her Neuro Surgeon regarding a Hemispherectomy, Cross-Hemispheric Seizures, Brain Biopsy and know exactly what he is talking about.
I know how to give her shots, take her blood pressure, and monitor for Ketones in her urine.
I know to fear fevers and flu season.
I know what it feels like to hold a sleeping baby all night just so I can feel for seizures.
I know the PICU and Special Care Unit nurses by name.
I know what a Downstream Occlusion is, and I can actually fix it now.
I know the difference between the IV alarm, Respiratory alarm, and Pulse Ox alarm without even looking.
And most recently, I know the finality of Epilepsy.
This is MY Holland, and amongst all of this, I have a precious little girl who loves life! A little girl who thinks all of this is normal. I still hold out hope and pray that this could be a part of our past and that someday we will be seizure and medication free! It's her smiles and hugs, that make all the glitz and glamour of Italy seem so unimportant in life.
November is Epilepsy Awareness Month!!! Please say a prayer for all those who live with this horrible disease.
This is a face of Epilepsy <3
Friday, October 29, 2010
So Sad
Epilepsy sucks! In fact, it blows! It's a nuisance and a constant worry in our lives everyday. But for so many people that I have met, and read about, it's so much more than just a nuisance.
My heart is so heavy for Gracie's family, at Gracie's Journey, as Gracie went to Heaven last Saturday. She fought so hard against a devastating seizure disorder. I never got the opportunity to meet this precious child, but in her 3 months, she has touched and impacted my life more than anything. I fell in love with her the first time I read her story and saw her adorable picture.
Please pray for Gracie's parents as they search to find comfort in their lives.God couldn't have chosen more loving or wonderful parents for Gracie.
My heart is so heavy for Gracie's family, at Gracie's Journey, as Gracie went to Heaven last Saturday. She fought so hard against a devastating seizure disorder. I never got the opportunity to meet this precious child, but in her 3 months, she has touched and impacted my life more than anything. I fell in love with her the first time I read her story and saw her adorable picture.
Please pray for Gracie's parents as they search to find comfort in their lives.God couldn't have chosen more loving or wonderful parents for Gracie.
Friday, October 22, 2010
I Became A Mother 6 Years Ago Today
My baby is 6 today!! Happy Birthday Elizabeth!
Taking on the job of motherhood was an enormouse change for me. I was married, owned my home, had an exceptional job...but it still turned me over and pretty much dumped me on my head. I struggled with motherhood at 28 even with the love and support of a husband. I want to recognize, hug, shout out, put it on the biggest billboard ever that all you single mothers and or fathers out there, you all are amazing. I am in awe of the strength that each of you carry everyday!! God Bless you all!!
Parenting...hands down...the hardest job in the world. But when they curl up in your lap at the end of the day or give you those big bear hugs and tell you they love you...it's moments like these that make every gray hair and wrinkle worth it!
I love you Elizabeth!!! Happy Birthday gurlfriend :)
Taking on the job of motherhood was an enormouse change for me. I was married, owned my home, had an exceptional job...but it still turned me over and pretty much dumped me on my head. I struggled with motherhood at 28 even with the love and support of a husband. I want to recognize, hug, shout out, put it on the biggest billboard ever that all you single mothers and or fathers out there, you all are amazing. I am in awe of the strength that each of you carry everyday!! God Bless you all!!
Parenting...hands down...the hardest job in the world. But when they curl up in your lap at the end of the day or give you those big bear hugs and tell you they love you...it's moments like these that make every gray hair and wrinkle worth it!
I love you Elizabeth!!! Happy Birthday gurlfriend :)
Friday, October 15, 2010
On Paper
Meghan is 2 1/2 years old. 30 months!! On paper, according to her most recent developmental progress report from Easter Seals, she is:
Gross Motor Skills: 15-18 months
Fine Motor Skills: 12-15 months
Communication Expressive: 12-15 months
Communication Receptive: 12-15 months
Cognitive Abilities: 18-21 months
Social Emotional Development: 21-24 months
Self Care: 21-24 months
We still have a road ahead, but I cannot thank our therapists from Easter Seals and all the help and support from Alta California Regional Center for everything they do!! They are all such a blessing!
Gross Motor Skills: 15-18 months
Fine Motor Skills: 12-15 months
Communication Expressive: 12-15 months
Communication Receptive: 12-15 months
Cognitive Abilities: 18-21 months
Social Emotional Development: 21-24 months
Self Care: 21-24 months
We still have a road ahead, but I cannot thank our therapists from Easter Seals and all the help and support from Alta California Regional Center for everything they do!! They are all such a blessing!
Thursday, October 14, 2010
Going Back...I Wish I Could
I go through phases of epilepsy research. There are times that I cannot absorb enough information and other times I PHYSICALLY cannot make myself look into epilepsy. I guess 2 years later, it is still a bit surreal. Well this past week I have had my face in the computer reading blogs, researching websites and emailing new friends who share the world of epilepsy with us. I have gained a plethera of information and I have formed quite a list for Dr Chez (sorry doc). During my research, I did happen upon a type of epilepsy called Status Epilepticus. Meghan has had this quite a few times. Whenever she goes into a Generalized Tonic Clonic, she can never pull herself out of them on her own. It takes high doses of Diastat and Ativan, to the point of intubation, for them to stop. But reading about this brings me back to an event that, to this day almost 2 full years later, physically hurts my heart to think about.
In January of 2009, Meghan got some random virus which ended up in double ear infections. Matt and I took her to the after hours clinic where she ended up going into a Status Epilepticus seizure. The doctor sent us over to the ER, which was just on the other side of the parking lot. We got right in, X-rays, CT scan, blood...the whole nine yards. They admitted us that night into the special care unit as she was being monitored. On the second day, the doctor came in and said that she can go home. She still had a fever, and was still apparently sick, but they did not see anymore seizure activity. That night we put her to bed. My mom told me that maybe we should stay up with her, but I said that she would be OK. She has not had anymore seizures. So off to bed we went. I got up the next day, got ready and went to work. At 8:30 that morning my mom went in to get Meghan up as she usually didn't sleep that long. Meghan was completly unconcious and unresponsive. She was breathing, but she wouldn't wake up. She was 10 months when this happened, and when we got back from the hospital after that episode, she was equivilent to a 2 1/2 month. That night she had a Status Epilepticus seizure that honestly probably lasted 3 to 4 hours, thus causing her brain damage.
This event will haunt me forever with the "if only's".
Since I have read so many personal experiences, I don't blame myself much anymore for Meghan's epilepsy or seizure condition (since we don't have an actual diagnoses yet). I did go through that and it sucked. I have really worked on having a better attitude about it, and I think it has worked. I was talking to my friend yesterday about a mutual friend of ours who's daughter has epilepsy. She said something like "I don't understand. There are so many parents who are crack heads or meth heads and have perfectly healthy children. Here are you guys who did everything right in pregnancy and look what happened." Awe friend, I have said that to myself a hundred times in the past, talked to God about it wanting that explained. But here is where I know I have grown as a mother and I am so damn proud of myself. Instead of responding with "It's not fair. I did do everything right." I responded "But could those parents care for children like ours. Not in a million years." For me this is a HUGE breakthrough. I can do this, and I am so proud of my Meghan that she has been so patient with me while I journeyed to this point. Thank you my Meggers!!
In January of 2009, Meghan got some random virus which ended up in double ear infections. Matt and I took her to the after hours clinic where she ended up going into a Status Epilepticus seizure. The doctor sent us over to the ER, which was just on the other side of the parking lot. We got right in, X-rays, CT scan, blood...the whole nine yards. They admitted us that night into the special care unit as she was being monitored. On the second day, the doctor came in and said that she can go home. She still had a fever, and was still apparently sick, but they did not see anymore seizure activity. That night we put her to bed. My mom told me that maybe we should stay up with her, but I said that she would be OK. She has not had anymore seizures. So off to bed we went. I got up the next day, got ready and went to work. At 8:30 that morning my mom went in to get Meghan up as she usually didn't sleep that long. Meghan was completly unconcious and unresponsive. She was breathing, but she wouldn't wake up. She was 10 months when this happened, and when we got back from the hospital after that episode, she was equivilent to a 2 1/2 month. That night she had a Status Epilepticus seizure that honestly probably lasted 3 to 4 hours, thus causing her brain damage.
This event will haunt me forever with the "if only's".
Since I have read so many personal experiences, I don't blame myself much anymore for Meghan's epilepsy or seizure condition (since we don't have an actual diagnoses yet). I did go through that and it sucked. I have really worked on having a better attitude about it, and I think it has worked. I was talking to my friend yesterday about a mutual friend of ours who's daughter has epilepsy. She said something like "I don't understand. There are so many parents who are crack heads or meth heads and have perfectly healthy children. Here are you guys who did everything right in pregnancy and look what happened." Awe friend, I have said that to myself a hundred times in the past, talked to God about it wanting that explained. But here is where I know I have grown as a mother and I am so damn proud of myself. Instead of responding with "It's not fair. I did do everything right." I responded "But could those parents care for children like ours. Not in a million years." For me this is a HUGE breakthrough. I can do this, and I am so proud of my Meghan that she has been so patient with me while I journeyed to this point. Thank you my Meggers!!
Thursday, October 7, 2010
Just Normal Kid Stuff
As a parent with a child who has a medical condition, it seems like we never get the opportunity to just sit, relax and just watch our children. There is always some sort of scrutiny and or assessment going on when I watch her play. Was that a seizure, are her meltdowns a side effect of the medication, can I call her change in play progression in her development, and so on and on. I feel like I am always on a heightened sense of alertness with her.
Dr Khan, one of our neurologists, thought it was amazing how well I can spot her seizures. We went in for a 72 hour EEG. Along with the leads on her head, the entire test is video recorded (always fun trying to sleep under the watchful eye). He would see me play with her on the bed and then I would push the seizure button. He visually could not see the seizures but the EEG patterns picked it up. I am just so used to spotting them.
So, the past week or so, Meghan has been cranky, not wanting to eat, screechy, completely unhappy and unsettled. So I analyze and compare her symptoms to what I think could be going on. And it goes something like this:
Meghan's Symptoms:
Crankiness
Ear Poking
Loose Acidic Stools (sorry - tmi)
Bad Diaper Rash
No Appetite
Cranky
Waking up through the night (ugh)
My Diagnoses's (yes...plural):
Steroid Withdrawal
Vimpat Withdrawal
Adjusting to the Felbatol...still
Maybe showing an allergic reaction to the Felbatol
Verdict:
A Tooth!!!
Not just a tooth but a 2-year molar. I had to laugh. Something so normal and I completely missed it. Hello...wouldn't that be anybody's first guess!! I guess it just goes to show that with a child who has a medical condition, sometimes the normal is so abnormal for us parents.
Dr Khan, one of our neurologists, thought it was amazing how well I can spot her seizures. We went in for a 72 hour EEG. Along with the leads on her head, the entire test is video recorded (always fun trying to sleep under the watchful eye). He would see me play with her on the bed and then I would push the seizure button. He visually could not see the seizures but the EEG patterns picked it up. I am just so used to spotting them.
So, the past week or so, Meghan has been cranky, not wanting to eat, screechy, completely unhappy and unsettled. So I analyze and compare her symptoms to what I think could be going on. And it goes something like this:
Meghan's Symptoms:
Crankiness
Ear Poking
Loose Acidic Stools (sorry - tmi)
Bad Diaper Rash
No Appetite
Cranky
Waking up through the night (ugh)
My Diagnoses's (yes...plural):
Steroid Withdrawal
Vimpat Withdrawal
Adjusting to the Felbatol...still
Maybe showing an allergic reaction to the Felbatol
Verdict:
A Tooth!!!
Not just a tooth but a 2-year molar. I had to laugh. Something so normal and I completely missed it. Hello...wouldn't that be anybody's first guess!! I guess it just goes to show that with a child who has a medical condition, sometimes the normal is so abnormal for us parents.
Tuesday, October 5, 2010
Cautiously Optimistic
On Friday October 8 will be two years exactly that Meghan had her first seizure. Oh how I remember that day. She had her well baby check that day and got her 6th month immunizations (the final dose of the previous two immunizations). I also opted to get her the flu shot. We are not big on the flu shot, but with the girls being in daycare and Elizabeth previously having it without any problems, I went ahead and got Meghan hers. I went back to work that day after the appointment but totally had this urge to just want to be at home with her. The evening came and everything was uneventful! Meghan, being 6 months of age, liked to look at herself in the mirror. So my mom had her up on the bathroom counter and Elizabeth kept turning the light off on them. Every time she would turn it off and on, it would scare Meghan and she would jump. It was pretty funny actually. Well, they left the bathroom and my mom carried her into the kitchen. It was then that my mom noticed that she was continuing to do that "startled type" of jump or twitch. She called me in and I watched her. I have NEVER seen a seizure in my life or really gave seizures a second thought for that matter. But all it took was maybe two twitches, but the look in her eyes and the propped open mouth, I knew it was a seizure.
Poor Matt was on the bed talking on the phone to his sister down in LA. I ran in the room, yelled at Matt to get off the phone, call 911, Meghan was having a seizure. Really, poor guy, I have never seen panic and confusion like that in him. As we were waiting for the ambulance to come, Meghan let out this laugh that completely sounded like it was inhuman...seriously!!! I still get chills remembering that laugh. The paramedics came, confirmed that she was having a seizure, and we loaded up and headed to the hospital. In the ambulance, they actually had to give her an adult dose of Ativan because the seizure wouldn't stop. After a few days in the hospital, a normal EEG and MRI, we went home hoping that it was just single event.
Here we are two years later still looking for a known amongst all the medical craziness. It has always been 1 step forward and 2 steps back. But today, for the first time in 2 years, I feel like we have taken 2 steps forward, and not a single stumble backwards. I'm cautiously optimistic because I have learned that you can't jump full on into a celebration because the celebration may only be short lived. However, you bet I am doing my little happy dance in my cautiously optimistic phase!!!
So why you ask...the Felbatol is working!!!!! We have reduced her seizures on average from about 30 a day to maybe 2. We don't know what her EEG looks like, or what an MRI will show, BUT, the seizures are decreasing! That's a start and it was enough to even make Dr Chez excited (seriously that takes a lot). We are adding a little bit more Felbatol to her medicine regime to see if we can clean up the straggling seizures and we will go in for an EEG in a few weeks. I pray that this continues to work because her seizures have been so hard to control with the medication. Time will tell though.
Meghan's last Steroid shot is tomorrow...woohoo!!! She is actually starting to look normal again. Thank you all for your thoughts and prayers.
In a matter of 4 weeks on the steroids, Meghan went from this...
To this!!!
Poor Matt was on the bed talking on the phone to his sister down in LA. I ran in the room, yelled at Matt to get off the phone, call 911, Meghan was having a seizure. Really, poor guy, I have never seen panic and confusion like that in him. As we were waiting for the ambulance to come, Meghan let out this laugh that completely sounded like it was inhuman...seriously!!! I still get chills remembering that laugh. The paramedics came, confirmed that she was having a seizure, and we loaded up and headed to the hospital. In the ambulance, they actually had to give her an adult dose of Ativan because the seizure wouldn't stop. After a few days in the hospital, a normal EEG and MRI, we went home hoping that it was just single event.
Here we are two years later still looking for a known amongst all the medical craziness. It has always been 1 step forward and 2 steps back. But today, for the first time in 2 years, I feel like we have taken 2 steps forward, and not a single stumble backwards. I'm cautiously optimistic because I have learned that you can't jump full on into a celebration because the celebration may only be short lived. However, you bet I am doing my little happy dance in my cautiously optimistic phase!!!
So why you ask...the Felbatol is working!!!!! We have reduced her seizures on average from about 30 a day to maybe 2. We don't know what her EEG looks like, or what an MRI will show, BUT, the seizures are decreasing! That's a start and it was enough to even make Dr Chez excited (seriously that takes a lot). We are adding a little bit more Felbatol to her medicine regime to see if we can clean up the straggling seizures and we will go in for an EEG in a few weeks. I pray that this continues to work because her seizures have been so hard to control with the medication. Time will tell though.
Meghan's last Steroid shot is tomorrow...woohoo!!! She is actually starting to look normal again. Thank you all for your thoughts and prayers.
In a matter of 4 weeks on the steroids, Meghan went from this...
To this!!!
Eight Years!!!!!
I am so totally proud to announce that today is mine and Matt's 8 year Wedding Anniversary!!!! Matt is such a wonderful husband and truly my best friend. Looking back at our life, it hasn't really gone exactly as we had planned. I mean really who sits down with their new spouse and say "Let's see, we want to keep our debt level just barely below constant stress, let's throw in a water pipe breakage in which this would lead us to put brand new plumbing throughout the house, we want the neighbors behind us to constantly heave stuff in our back yard and try to shoot the squirrels with homemade blow gun darts. Oh, and those darts will sporadically litter our yard thus making us do a walk through prior to letting the kids out. Kids, lets plan for a special needs child that will truly test our marriage to the very last straw...but it will be great!" I can go on and on, but I DO have to say that I am truly blessed with EVERYTHING we have. It has had it's bumps, and there will be so many more bumps, but when I snuggle in his arms at night and he holds me tight, I feel that WE can take on the world by ourselves. It is the best feeling EVER. Happy Anniversary Matt <3>
Every year, the Monday before our anniversary, Matt will send me a dozen red roses and a white rose for every year we have been married to work. Every time I look at then I get this ridiculous grin on my face!!
Thursday, September 23, 2010
Back To The Drawing Board...
We had another EEG on Tuesday and the improvement was not any better over the one we had two weeks ago. So, we have decided to take Meghan off the Sterroids, and adjust her medicine regime. Currently she is on Vimpat, Depakote, and Clobazam. We are going to take away her Vimpat, keep the Clobazam as is, reduce her Depakote a tad, and introduce Felbatol. Apparently, in some situations where the Depakote works some, but does not completely eliminate the seizures, the Felbatol can go that extra mile and possibly knock out the rest of her seizures. Dr Chez was very happy with her socialization and her trying to mimic new sounds and actions. Yay for that.
We really hope this works. It may take some tweaking to get the medications right, and her blood levels OK, but for her age, we are running out of medicine options. If this combination of medication does not work, then Dr Chez wants to put Meghan on the Ketogenic Diet. In March of 2009, we met with a dietician to go over the Keto diet and what it entails. It is basically an EXTREME Atkins Diet. I guess with the total elimination of glucose and carbs, your bodily naturally will raise the Ketone levels and for some reason they help reduce, even eliminate seizures. So instead of a snack of cheerios, she could have some peanut butter, mixed with canola oil, and topped with some mayonnaise. Yum...I think not. BUT, if this diet will help, then yes, we will do it. Our plan though for now is to get her adjusted to her new medications, get the Sterroids out of her system, then put her on a Gluten Free diet. If all that still fails to help eliminate her seizures, then Atkins here we come (You know I will be chowing pizza in my garage).
Matt and I are also in the process of researching Hyperbaric Oxygen Therapy (HBOT). This is definitely a more homeopathic route and is frowned upon by the some neurologists (ours especially). This therapy we would use in conjunction with her medication. There is no telling if it will totally help her or do absolutely nothing for her. This therapy is SO expensive. We are looking at going 5 days a week for 80 weeks (yes 80) 1 hour a day. Total cost, 10K! Yikes, as it is not covered under insurance. That amount of money is A LOT for us, but really can we put a price limit on what we will do to help get our daughter well. No. SO friends, if you see us out holding a sign to wash your car for donations, please stop...LOL! We are still researching it, looking through medical journals (thank you psychology degree for teaching me how to read those), talking to anybody that has heard anything about it. Right now, we are leaning towards yes.
Meghan is such a strong little girl. She totally brings us so much joy. To say that I love her, is TOTALLY an understatement. I'm so proud of both of my girls.
I feel bad that I never talk much about Elizabeth. She is an ANGEL...well an angel with an attitude...but hey, she is my child :) She is doing so good in first grade. I love listening to her read, and the effort that she puts into her homework. I actually got in trouble from her teacher...LOL. Elizabeth has the BEST teacher! She is retiring this year and I am so blessed that we got her as a teacher. So, when the kids went back to school, they were assessed on their reading. I HAD (there is that darn word again) planned on working with Elizabeth throughout the summer to make sure that she keeps up on her reading. Well, didn't happen. So, based on her reading assessment, she was put into the early reader program which is for the lower level readers. Elizabeth didn't care, but it broke my heart. So, I drilled sight words, letter identification, letter sounds, rhyming words down her throat EVERY night. Matt and I mom shook their heads and told me that I was only going to hurt the situation more. But oh no, I was right, the overachiever Type - A personality, I was right and this was the way to do it. So proudly I went to Elizabeth's teacher so I could take a look at her reading assessment and know what to focus on (well really to add another layer to the homework schedule). I told her what I was doing and she sat there and totally looked at me. She said that I was doing way too much and really Elizabeth only needed help with certain letters and their sounds. So, she wants me to let her do the teaching and I will supplement with sight word identification and her homework papers that get sent home. I felt SO much better talking to her. Love you Ms. Knight!!! I am so so so so proud of Elizabeth! And, oh my, she is growing up so fast!!
We really hope this works. It may take some tweaking to get the medications right, and her blood levels OK, but for her age, we are running out of medicine options. If this combination of medication does not work, then Dr Chez wants to put Meghan on the Ketogenic Diet. In March of 2009, we met with a dietician to go over the Keto diet and what it entails. It is basically an EXTREME Atkins Diet. I guess with the total elimination of glucose and carbs, your bodily naturally will raise the Ketone levels and for some reason they help reduce, even eliminate seizures. So instead of a snack of cheerios, she could have some peanut butter, mixed with canola oil, and topped with some mayonnaise. Yum...I think not. BUT, if this diet will help, then yes, we will do it. Our plan though for now is to get her adjusted to her new medications, get the Sterroids out of her system, then put her on a Gluten Free diet. If all that still fails to help eliminate her seizures, then Atkins here we come (You know I will be chowing pizza in my garage).
Matt and I are also in the process of researching Hyperbaric Oxygen Therapy (HBOT). This is definitely a more homeopathic route and is frowned upon by the some neurologists (ours especially). This therapy we would use in conjunction with her medication. There is no telling if it will totally help her or do absolutely nothing for her. This therapy is SO expensive. We are looking at going 5 days a week for 80 weeks (yes 80) 1 hour a day. Total cost, 10K! Yikes, as it is not covered under insurance. That amount of money is A LOT for us, but really can we put a price limit on what we will do to help get our daughter well. No. SO friends, if you see us out holding a sign to wash your car for donations, please stop...LOL! We are still researching it, looking through medical journals (thank you psychology degree for teaching me how to read those), talking to anybody that has heard anything about it. Right now, we are leaning towards yes.
Meghan is such a strong little girl. She totally brings us so much joy. To say that I love her, is TOTALLY an understatement. I'm so proud of both of my girls.
I feel bad that I never talk much about Elizabeth. She is an ANGEL...well an angel with an attitude...but hey, she is my child :) She is doing so good in first grade. I love listening to her read, and the effort that she puts into her homework. I actually got in trouble from her teacher...LOL. Elizabeth has the BEST teacher! She is retiring this year and I am so blessed that we got her as a teacher. So, when the kids went back to school, they were assessed on their reading. I HAD (there is that darn word again) planned on working with Elizabeth throughout the summer to make sure that she keeps up on her reading. Well, didn't happen. So, based on her reading assessment, she was put into the early reader program which is for the lower level readers. Elizabeth didn't care, but it broke my heart. So, I drilled sight words, letter identification, letter sounds, rhyming words down her throat EVERY night. Matt and I mom shook their heads and told me that I was only going to hurt the situation more. But oh no, I was right, the overachiever Type - A personality, I was right and this was the way to do it. So proudly I went to Elizabeth's teacher so I could take a look at her reading assessment and know what to focus on (well really to add another layer to the homework schedule). I told her what I was doing and she sat there and totally looked at me. She said that I was doing way too much and really Elizabeth only needed help with certain letters and their sounds. So, she wants me to let her do the teaching and I will supplement with sight word identification and her homework papers that get sent home. I felt SO much better talking to her. Love you Ms. Knight!!! I am so so so so proud of Elizabeth! And, oh my, she is growing up so fast!!
Tuesday, September 14, 2010
The Past 6 Weeks
Oh my goodness...where has the time gone. We have been in a whirlwind of busyness over these past 5 to 6 weeks. Seeing how I took 3 weeks off of work, one would think I should have been able to post an update blog earlier...FAIL!!! So here we go...
The Biopsy
Meghan had her Bilateral Burr-hole Brain Biopsy (that's the official terminology) on Aug 6! This biopsy was going to give us the answer on whether or not she has Rasmussen's or some other form of Encephalitis. Needless to say Matt and I were scared to death for this biopsy. After all, they were going in and taking brain tissue on both sides of my daughters head. The Neuro-Surgeon stated that the right side of her brain looked great! Thank goodness for that. However, he did say that the left side looked very abnormal with a completely different coloring and texture (we sorta knew that with since that is where the damage is). Well after she awoke from her anaesthesia, she was good to go. She was still the same Meghan that we went in with...phew! Well she was missing a couple patches of hair and had some gross looking scars, but she was great. Twenty-four hours later we headed home!!!
Meghan pre-biopsy at 5am!
Meghan during recovery. She actually launched herself forward and hit her head against the bars. Of course...my child less than an hour after brain surgery hits her head!
Looks like we removed her horns instead of giving her a brain biopsy...LOL!
The Waiting
Her biopsy was on a Friday and we were told we would get the results by the following Friday. Luckily, Elizabeth went back to school in which I busied myself with that and doing odds and ends around the house. If I didn't have that to keep my busy, I would have gone CRAZY. SO...Friday rolls around, the 1 week mark, and no call. I picked up the phone and called the Neurologists office! I was told that our Neurologist is out of town and will not return until the following Wednesday!! WHAT!! The receptionist could see that the results were in but there was nobody in the office that I could talk to at that time to get them. Grrr, I was sooo not happy. How dare they go on vacation when I am sitting on pins and needles. So once again...I busied myself through the weekend and tried not to think about it too much...yeah right!
The Call
Monday morning came, I got Elizabeth off to school, came home, and cleaned my kitchen. I walked in my room and saw I had a missed call and a voicemail from the Neurologists office on my cell phone. My heart totally stopped. With shaky fingers I called my voicemail. Our Neurologists Nurse Practitioner called to discuss the results of the biopsy so give her a call back. I HATE PHONE TAG. So I frantically call the office and tell the receptionist that I just missed a call from the NP and had to talk to her right then. Well, she was with a patient but would call when she was done. I'm such a total dork that I told the receptionist that I was going to sit there with my phone in hand and wait for the call...LOL...like she cared. The phone rings, the caller ID said Sutter Neuro...it was time!
The Results
The office nurse called me back as the NP was still busy and she didn't want me to wait any longer for the news...I guess the receptionist did tell them I was sitting there with my phone in hand...Love her!!! She starts going through all the mumble-jumble- over-my-head-medical-neurological-jargon that was in the report. I wanted to tell her so bad to just get to the damn point (sorry-I was totally stressed though). While I'm completely hanging on to each and every word she says (half of which was pointless because I did not comprehend) I hear her say: based on the tissue that was received from the biopsy there is no evidence of any type of Encephalitis in which the diagnosis of Rasmussen's in NEGATIVE. What, really, it's negative...no Rasmussen's...WOOHOO!! She then goes on to state that the abnormal tissue that was taken from the left side is a result of damage quite likely due to prolonged seizure activity. There is no underlying disease or illness that lead to the damage. Can you say that I did this crazy insane happy dance! Finally tears of joy!!!
The Follow-Up Appointment
We went into this appointment on cloud 9! Where ever the road will take us, it is much more brighter than the Rasmussen's road. Well, Neurologists have a way of taking the wind out of your sails. He pretty much has no idea what is wrong. He said that he is going to ask around (the country with other neurologists) to see what diagnoses are out there that resembles Rasmussen's but it is not that. In the mean time, he wants us to start the steroid injections to see how her seizures will react.
The Shots
I was really surprised how well Meghan tolerated the injections. We bought this cream called "Emla Cream" that we put on her leg 40 minutes before we give her the shot that numbs the surface and a few layers below. We keep the cream in place with these Tegaderm patches (expensive little things, but thanks to Ebay, I can get them cheap cheap cheap). The worst part of this process for Meghan is holding her to do the shot. In fact, when we are done with the shot, she sits down on the floor, looks at her leg and giggles. She also hates getting her blood pressure done. This has to be done on a daily basis and usually takes anywhere from 3 to 10 tries to get her to hold still. We have found that if you give her candy while doing this, she will tolerate it better. Probably not the healthiest for her, but for our sanity, it works :) Well, since we do the shots nightly, and the type of steroids they are, she needs to be seen every week by the Neurologist. Since starting the shots, her seizures have decreased to maybe 2 or 3 a day (from maybe 5 to 10 a day). Two weeks after starting the shots (9/7), he did another EEG. He wasn't impressed at all. However, over these last 2 weeks Meghan has engaged more socially with laughing. She will laugh at the T.V. and get really excited. This is new, but it is also appropriate for her age...so it is kinda like which came first, the Chicken or the Egg. So, by reporting this to our Neurologist, he is going to give the steroids 2 more weeks and do another EEG on 9/21. If at that time then he will pull the shots and think of something else to do.
1 full week of Steroids!
2 full weeks of Steroids
3 full weeks of Steroids
Family Matters
It has been an ongoing crazy roller coaster this past month in a half or so. It has been very stressful for Matt and I. My mom and his parents have been there faithfully which is a blessing and Elizabeth just goes with it. Having 3 weeks off was great, but I found it so hard to be a stay at home mom and really missed work actually. So the day to day routine is something such as: get up, get ready, get Elizabeth up and ready, drop her off at school, go to work, come home, dinner (if my mom doesn't do it - Thank you mom :)) homework with Elizabeth, shots, bath's, medication, and finally snuggle time on the couch. If I make it to bed without falling asleep on the couch, it is a huge accomplishment! Some day's go smoother than other's, and some day's just end up in tears...all around.
Like I have said before, this is not the life I had dreamt up. It does not fit with the plan that I had. Letting go of the HAD is the hardest part, but holding on to it hurts the most. I so envy every one's vacations, their happy healthy bounding children, there seemingly smooth life...ugh, I can go on...but it doesn't change my situation. And I know there are other situations way worse than mine and my heart goes out to them. What ever the future holds, I will absolutely do the best that I can, and try so hard to keep my head up and the thoughts positive. There will be tears, oh so many more, but all I can do is push forward.
I hope I can be half the mother as she is the daughter to me. I love her so!
**I really did not mean to get all emotional, but I guess I'm just on a down slope right now**
I will talk to you all soon...way sooner than last time I promise :)
Hugs to everyone!!!
The Biopsy
Meghan had her Bilateral Burr-hole Brain Biopsy (that's the official terminology) on Aug 6! This biopsy was going to give us the answer on whether or not she has Rasmussen's or some other form of Encephalitis. Needless to say Matt and I were scared to death for this biopsy. After all, they were going in and taking brain tissue on both sides of my daughters head. The Neuro-Surgeon stated that the right side of her brain looked great! Thank goodness for that. However, he did say that the left side looked very abnormal with a completely different coloring and texture (we sorta knew that with since that is where the damage is). Well after she awoke from her anaesthesia, she was good to go. She was still the same Meghan that we went in with...phew! Well she was missing a couple patches of hair and had some gross looking scars, but she was great. Twenty-four hours later we headed home!!!
Meghan pre-biopsy at 5am!
Meghan during recovery. She actually launched herself forward and hit her head against the bars. Of course...my child less than an hour after brain surgery hits her head!
Looks like we removed her horns instead of giving her a brain biopsy...LOL!
The Waiting
Her biopsy was on a Friday and we were told we would get the results by the following Friday. Luckily, Elizabeth went back to school in which I busied myself with that and doing odds and ends around the house. If I didn't have that to keep my busy, I would have gone CRAZY. SO...Friday rolls around, the 1 week mark, and no call. I picked up the phone and called the Neurologists office! I was told that our Neurologist is out of town and will not return until the following Wednesday!! WHAT!! The receptionist could see that the results were in but there was nobody in the office that I could talk to at that time to get them. Grrr, I was sooo not happy. How dare they go on vacation when I am sitting on pins and needles. So once again...I busied myself through the weekend and tried not to think about it too much...yeah right!
The Call
Monday morning came, I got Elizabeth off to school, came home, and cleaned my kitchen. I walked in my room and saw I had a missed call and a voicemail from the Neurologists office on my cell phone. My heart totally stopped. With shaky fingers I called my voicemail. Our Neurologists Nurse Practitioner called to discuss the results of the biopsy so give her a call back. I HATE PHONE TAG. So I frantically call the office and tell the receptionist that I just missed a call from the NP and had to talk to her right then. Well, she was with a patient but would call when she was done. I'm such a total dork that I told the receptionist that I was going to sit there with my phone in hand and wait for the call...LOL...like she cared. The phone rings, the caller ID said Sutter Neuro...it was time!
The Results
The office nurse called me back as the NP was still busy and she didn't want me to wait any longer for the news...I guess the receptionist did tell them I was sitting there with my phone in hand...Love her!!! She starts going through all the mumble-jumble- over-my-head-medical-neurological-jargon that was in the report. I wanted to tell her so bad to just get to the damn point (sorry-I was totally stressed though). While I'm completely hanging on to each and every word she says (half of which was pointless because I did not comprehend) I hear her say: based on the tissue that was received from the biopsy there is no evidence of any type of Encephalitis in which the diagnosis of Rasmussen's in NEGATIVE. What, really, it's negative...no Rasmussen's...WOOHOO!! She then goes on to state that the abnormal tissue that was taken from the left side is a result of damage quite likely due to prolonged seizure activity. There is no underlying disease or illness that lead to the damage. Can you say that I did this crazy insane happy dance! Finally tears of joy!!!
The Follow-Up Appointment
We went into this appointment on cloud 9! Where ever the road will take us, it is much more brighter than the Rasmussen's road. Well, Neurologists have a way of taking the wind out of your sails. He pretty much has no idea what is wrong. He said that he is going to ask around (the country with other neurologists) to see what diagnoses are out there that resembles Rasmussen's but it is not that. In the mean time, he wants us to start the steroid injections to see how her seizures will react.
The Shots
I was really surprised how well Meghan tolerated the injections. We bought this cream called "Emla Cream" that we put on her leg 40 minutes before we give her the shot that numbs the surface and a few layers below. We keep the cream in place with these Tegaderm patches (expensive little things, but thanks to Ebay, I can get them cheap cheap cheap). The worst part of this process for Meghan is holding her to do the shot. In fact, when we are done with the shot, she sits down on the floor, looks at her leg and giggles. She also hates getting her blood pressure done. This has to be done on a daily basis and usually takes anywhere from 3 to 10 tries to get her to hold still. We have found that if you give her candy while doing this, she will tolerate it better. Probably not the healthiest for her, but for our sanity, it works :) Well, since we do the shots nightly, and the type of steroids they are, she needs to be seen every week by the Neurologist. Since starting the shots, her seizures have decreased to maybe 2 or 3 a day (from maybe 5 to 10 a day). Two weeks after starting the shots (9/7), he did another EEG. He wasn't impressed at all. However, over these last 2 weeks Meghan has engaged more socially with laughing. She will laugh at the T.V. and get really excited. This is new, but it is also appropriate for her age...so it is kinda like which came first, the Chicken or the Egg. So, by reporting this to our Neurologist, he is going to give the steroids 2 more weeks and do another EEG on 9/21. If at that time then he will pull the shots and think of something else to do.
1 full week of Steroids!
2 full weeks of Steroids
3 full weeks of Steroids
Family Matters
It has been an ongoing crazy roller coaster this past month in a half or so. It has been very stressful for Matt and I. My mom and his parents have been there faithfully which is a blessing and Elizabeth just goes with it. Having 3 weeks off was great, but I found it so hard to be a stay at home mom and really missed work actually. So the day to day routine is something such as: get up, get ready, get Elizabeth up and ready, drop her off at school, go to work, come home, dinner (if my mom doesn't do it - Thank you mom :)) homework with Elizabeth, shots, bath's, medication, and finally snuggle time on the couch. If I make it to bed without falling asleep on the couch, it is a huge accomplishment! Some day's go smoother than other's, and some day's just end up in tears...all around.
Like I have said before, this is not the life I had dreamt up. It does not fit with the plan that I had. Letting go of the HAD is the hardest part, but holding on to it hurts the most. I so envy every one's vacations, their happy healthy bounding children, there seemingly smooth life...ugh, I can go on...but it doesn't change my situation. And I know there are other situations way worse than mine and my heart goes out to them. What ever the future holds, I will absolutely do the best that I can, and try so hard to keep my head up and the thoughts positive. There will be tears, oh so many more, but all I can do is push forward.
I hope I can be half the mother as she is the daughter to me. I love her so!
**I really did not mean to get all emotional, but I guess I'm just on a down slope right now**
I will talk to you all soon...way sooner than last time I promise :)
Hugs to everyone!!!
Tuesday, July 27, 2010
Zumba Fail
I so want in on this Zumba hype! It looks fun and I hear it is a fantastic workout. I have many friends that have joined gyms in order to Zumba. Unfortunately, joining the gym to do so is not possible for me at this time with all that is going on. Thank you God for infomercials, because they have Zumba Fitness. I didn't think twice. I jumped right on the computer and ordered my box (I did not spring for accelerated shipping though).
This past Friday my box came. I was so excited. I tore it open, played with the little hand weights, or sticks, because they really don't weigh that much. I was super ecstatic!! Saturday morning rolls around. I'm home alone with the girls, playing and cleaning up the house. Meghan decided to go down for an early nap, so I decided to Zumba!
I was short on time so I decided to pop in the 20-Express workout. Perfect. I'm all for fast workouts. I change my clothes, lace up my tennis shoes, and move the Ottoman down a bit (I knew I would need room).
This is where turns south....
**The DVD said for beginners. I'm a beginner right, so I didn't think there would be a problem. However, I found out that a beginner is totally different, and definitely more 'skilled', than a first timer. This was confirmed as the trainer would say statements such as, 'you know this step', 'remember this step'. No I don't know because I've never done this!!
**The 20-minute express work out turned out to be 33 minutes. I had to stop and pause. I had to catch my breath a few times, I had to clip by bangs back, I had to get some water, I had to get some more water, I had to bend at the waist to catch my breath. I work out. I can pound out 3 miles on the treadmill no problem. I can hang fairly well with Jillian Michael's. But THIS, kicked my a#$!
**Thank GOD I do not have a mirror in my living room. I could only imagine what I looked like. I don't have a lot of rhythm....sober. So here I'm trying, for the first time, these Latin dance moves at an "express pace". For 33 minutes I probably looked like a hurt chicken hopping around on hot coals. Ugh...I shudder.
Well, the end finally came. I'm was laying on my floor gasping for breath when Elizabeth chimed in with her take on my 33 minute session. Bless the innocent and honest heart of a 5 year old. Our dialog went like this:
Elizabeth: You OK mom?
Me: *very heavy breathing* Yep
Elizabeth: You could probably dance better if you took your shirt off like they did (some were wearing shirts like sports bra's).
Me: *silence*
Me: *silence*
Me: *silence*
Me: I don't think that would help hun :(
On a good note...
**I may not have actually Zumba'd, but I did manage to elevate my heart rate and burn a few calories.
**I will not quit! I will start with the DVD that is probably tailored for first timer's.
**I will only Zumba with the doors locked, the blinds closed, and nobody will be allowed in the house.
**And finally...you will not see me visiting any Zumba classes...yet.
This past Friday my box came. I was so excited. I tore it open, played with the little hand weights, or sticks, because they really don't weigh that much. I was super ecstatic!! Saturday morning rolls around. I'm home alone with the girls, playing and cleaning up the house. Meghan decided to go down for an early nap, so I decided to Zumba!
I was short on time so I decided to pop in the 20-Express workout. Perfect. I'm all for fast workouts. I change my clothes, lace up my tennis shoes, and move the Ottoman down a bit (I knew I would need room).
This is where turns south....
**The DVD said for beginners. I'm a beginner right, so I didn't think there would be a problem. However, I found out that a beginner is totally different, and definitely more 'skilled', than a first timer. This was confirmed as the trainer would say statements such as, 'you know this step', 'remember this step'. No I don't know because I've never done this!!
**The 20-minute express work out turned out to be 33 minutes. I had to stop and pause. I had to catch my breath a few times, I had to clip by bangs back, I had to get some water, I had to get some more water, I had to bend at the waist to catch my breath. I work out. I can pound out 3 miles on the treadmill no problem. I can hang fairly well with Jillian Michael's. But THIS, kicked my a#$!
**Thank GOD I do not have a mirror in my living room. I could only imagine what I looked like. I don't have a lot of rhythm....sober. So here I'm trying, for the first time, these Latin dance moves at an "express pace". For 33 minutes I probably looked like a hurt chicken hopping around on hot coals. Ugh...I shudder.
Well, the end finally came. I'm was laying on my floor gasping for breath when Elizabeth chimed in with her take on my 33 minute session. Bless the innocent and honest heart of a 5 year old. Our dialog went like this:
Elizabeth: You OK mom?
Me: *very heavy breathing* Yep
Elizabeth: You could probably dance better if you took your shirt off like they did (some were wearing shirts like sports bra's).
Me: *silence*
Me: *silence*
Me: *silence*
Me: I don't think that would help hun :(
On a good note...
**I may not have actually Zumba'd, but I did manage to elevate my heart rate and burn a few calories.
**I will not quit! I will start with the DVD that is probably tailored for first timer's.
**I will only Zumba with the doors locked, the blinds closed, and nobody will be allowed in the house.
**And finally...you will not see me visiting any Zumba classes...yet.
Wednesday, July 7, 2010
God Won't Give Us More Than We Can Handle...Righ?
Two weeks ago we did some testing on her which ended up to be a 96 hour EEG, an MRI and a Spinal Tap. During the EEG she was having A LOT of Generalized Seizures. Her Neurologist came by to see us after about 24 hours of monitoring and totally changed her medications. The rest of the time went by very uneventful with a lot of Yo Gabba Gabba watching. Finally we reached the end of the 96 hours, they disconnected the EEG, and went on to have her MRI and Spinal Tap. After her MRI, the doctors wanted her stay on IV as she was pretty dehydrated from having to fast that morning. I had left Meghan and Matt at the hospital and headed off to Elizabeth's dance recital. At the end of the recital I got a text from Matt asking to call him when I got home. Call it motherly instincts but I knew right away something was wrong. He NEVER says to call when I get home. So I walk outside of the auditorium and give him a call. He said that neurologist called the MRI tech to see how it looked. The MRI tech reported that the MRI looked worse than the one she had 6 months ago. Our neurologist wanted us to see his partner the following week based on the results. I felt like I was totally punched in the stomach. All of us, including our Neurologist, expected to have no issues with the MRI.
Yesterday we went in for our appointment. Dr Chez is a fantastic Neurologist and one of two certified Epileptologists in CA. I completely trust him with everything I have. He pulled up the MRI that we had two weeks ago and compared it to the MRI from six months ago. The actual damage to the brain that she had on the left side was not worse, which is what we were thinking. However, she has this white hazing that is showing up on both sides of the brain hemispheres. Dr Chez stated that he seeked out two of the best Radiologists to review the MRI with him, one is from the Boston Children's Hospital. The three of them seem to think that what is showing up on the MRI is something called Rasmussen Syndrome. It is an Auto-Immune disease in which her immune system is basically fighting against her brain. WOW...not what we were expecting. Dr Chez informed us that Meghan's case is very complex in which it does resemble this Rasmussen Syndrome however her activity and development does not match what "should" be happening based on the MRI. Meghan is developing, growing and learning everyday. She is more dominant with her right side, and that is what goes against the MRI, as the left side of the brain is more "sick" than the right side.
The only way to confirm if it Rasmussen's is to have a Brain Biopsy. We have a referral in to meet with a Neuro-Surgeon to discuss the pros and cons of the biopsy. Matt and I are already pretty convinced that we are going to go forward with it as we want answers and we want to know what we are up against. Next week we will be starting her on a steroid regime where we will do daily injections of the steroids (pray for Matt as he has a tendency to pass out when he see's needles...LOL). Once we start that we will have to do weekly blood pressure and blood tests to make sure all is OK. Dr Chez said that after about four weeks he should be able to see if the steroids are helping or not. We may move forward at that time with some sort of IV med regime which would consist of Meghan having a port installed in her to regularly administer the meds by IV.
There was some good news that came out of yesterday though. Dr Chez wanted to do an in office EEG to see how her new medications are working. Her EEG actually does look better. So that is great news in that department.
It has felt that we have had nothing but bad news after bad news. This news really sent us reeling. We are holding to the fact that God has a plan and He know what He is doing. And He won't give us anymore than we can handle. He chose Matt and I to be Meghan's parents and I am forever grateful for that. It's not the news we wanted, but that darn smile on her face makes it ALL worth it.
Yesterday we went in for our appointment. Dr Chez is a fantastic Neurologist and one of two certified Epileptologists in CA. I completely trust him with everything I have. He pulled up the MRI that we had two weeks ago and compared it to the MRI from six months ago. The actual damage to the brain that she had on the left side was not worse, which is what we were thinking. However, she has this white hazing that is showing up on both sides of the brain hemispheres. Dr Chez stated that he seeked out two of the best Radiologists to review the MRI with him, one is from the Boston Children's Hospital. The three of them seem to think that what is showing up on the MRI is something called Rasmussen Syndrome. It is an Auto-Immune disease in which her immune system is basically fighting against her brain. WOW...not what we were expecting. Dr Chez informed us that Meghan's case is very complex in which it does resemble this Rasmussen Syndrome however her activity and development does not match what "should" be happening based on the MRI. Meghan is developing, growing and learning everyday. She is more dominant with her right side, and that is what goes against the MRI, as the left side of the brain is more "sick" than the right side.
The only way to confirm if it Rasmussen's is to have a Brain Biopsy. We have a referral in to meet with a Neuro-Surgeon to discuss the pros and cons of the biopsy. Matt and I are already pretty convinced that we are going to go forward with it as we want answers and we want to know what we are up against. Next week we will be starting her on a steroid regime where we will do daily injections of the steroids (pray for Matt as he has a tendency to pass out when he see's needles...LOL). Once we start that we will have to do weekly blood pressure and blood tests to make sure all is OK. Dr Chez said that after about four weeks he should be able to see if the steroids are helping or not. We may move forward at that time with some sort of IV med regime which would consist of Meghan having a port installed in her to regularly administer the meds by IV.
There was some good news that came out of yesterday though. Dr Chez wanted to do an in office EEG to see how her new medications are working. Her EEG actually does look better. So that is great news in that department.
It has felt that we have had nothing but bad news after bad news. This news really sent us reeling. We are holding to the fact that God has a plan and He know what He is doing. And He won't give us anymore than we can handle. He chose Matt and I to be Meghan's parents and I am forever grateful for that. It's not the news we wanted, but that darn smile on her face makes it ALL worth it.
Saturday, May 29, 2010
Peaks and Valleys
Since Meghan has started getting seizures, it has been nothing but ups and downs. It has gotten better, she is definitely improving everyday over these past 17 months since her set back. But a part of me still feels really heartbroken at times.
I know that I should count my blessings and be thankful that she has a really good chance of outgrowing them. I know that I should be thankful that she is just delayed and not disabled. I know that I should be thankful that she won't remember everything that she has gone through. But yet I sit and cry at times. Why I ask myself...is it because she's not talking like her other 2 year old friends, is it because she doesn't know how to jump, or sing along to the "itsy bitsy spider" and do the hand movements, or that she is just about a year behind developmentally. I do know for a fact that she is HAPPY, she has FUN, and most of all she is LOVED and gives the best LOVE. Nothing else should matter but yet I find myself in these pity parties, looking at my friends children with a twinge of sadness because Meghan "can't do that" yet.
Even if Meghan will always be challenged with developmental delay's, I just need to grab on to her love and happiness because that is what truly matters. God trusted me with this precious gift. He chose ME to be her mommy and I will not let her down. I have a lot to learn from Meghan. Her strength and determination is amazing. She will teach me how to pull from that strength and rise above. Some days are harder than others.
OK...so my party of pity is over! I will stand up straight, hold my head high, grab my martini and power on through. Wish me luck!
I know that I should count my blessings and be thankful that she has a really good chance of outgrowing them. I know that I should be thankful that she is just delayed and not disabled. I know that I should be thankful that she won't remember everything that she has gone through. But yet I sit and cry at times. Why I ask myself...is it because she's not talking like her other 2 year old friends, is it because she doesn't know how to jump, or sing along to the "itsy bitsy spider" and do the hand movements, or that she is just about a year behind developmentally. I do know for a fact that she is HAPPY, she has FUN, and most of all she is LOVED and gives the best LOVE. Nothing else should matter but yet I find myself in these pity parties, looking at my friends children with a twinge of sadness because Meghan "can't do that" yet.
Even if Meghan will always be challenged with developmental delay's, I just need to grab on to her love and happiness because that is what truly matters. God trusted me with this precious gift. He chose ME to be her mommy and I will not let her down. I have a lot to learn from Meghan. Her strength and determination is amazing. She will teach me how to pull from that strength and rise above. Some days are harder than others.
OK...so my party of pity is over! I will stand up straight, hold my head high, grab my martini and power on through. Wish me luck!
Wednesday, May 19, 2010
Ugh...The Teenage Years
I totally forgot kids grow up to be teenagers!! Is this what I have to look forward too?
The constant texting! Not to mention the laziness along with socks on the floor!!
I do believe it was about 10 AM. Do I see drool?
The floor is not the place for clothes...especially clean and dirty ones together..gross!
The constant texting! Not to mention the laziness along with socks on the floor!!
I do believe it was about 10 AM. Do I see drool?
The floor is not the place for clothes...especially clean and dirty ones together..gross!
Sunday, May 9, 2010
Mother's Day!!
I must say that Mother's Day is one of my favorite days!! I really have no idea why because I still have to get up, fix breakfast, clean up, get the kids going, chase the kids around...I could go on! It's not like I get to sit in a lounge chair on a tropical beach with a super sexy guy serving me drinks every 15 minutes or so. Ahhh that would be so nice. Well, there are 364 other days I can enjoy the sun, the beach, and the "view".
On mother's day, I want to be with none other than my two girls. They have taught me the true meaning of unconditional love and have shown me strength that is beyond belief. Trying to put what it's like being a mother into words would be something like ; it's the happiest, hardest, scariest, confused, excited...every emotion you could think of all wrapped in one. By far, the good times outweigh the bad. They are my life and truly hold my heart in their very souls!
Happy Mother's Day!
Here are some pics that I find so memorable as a mother!
Elizabeth's first ballet recital!
Elizabeth boating...her favorite summer fun!
Meghan happy as can be!
Elizabeth's priceless smile!
Sisters!!
Beautiful Elizabeth!
Elizabeth's first day of Kindergarten!
Meghan and her amazing strength...she is a fighter!!
Beautiful Meghan and her priceless smile!
Thursday, April 22, 2010
My Truck and I....
I can't park...my truck that is! Give me a compact and I can park it anywhere (as long as I don't have to parallel park, or, in some instances, have to get out of the car).
My truck and I started our relationship in September of 2007 when we bought our fairly new Toyota Camry. I was newly pregnant with severe morning sickness, and the new car smell from the Camry made the sickness over 100% worse! Problem solved...I will drive the truck (2001 Chevrolet 1500 = no fairly new car smell). All was fantastic, with only a few pit stops (pregnant women will know what I'm talking about), while I was driving my truck. Hey...I even got whistled at when I was 9 months pregnant by a semi-cute guy (he didn't see my belly...and at 9 months pregnant, any cat call is a compliment whether they saw my belly or not)!!
Alas...Meghan is born, and, obviously the sickness is gone! Enter...the crashing of the economy and over $4.00 gas prices (I live in California...remember). Seeing how I have a 2 mile commute to work and Matt has a 15 mile commute, it made more sense for me to drive the truck (we had since traded our "Camry" for an "Altima" since Matt complained about the acceleration on the "Camry"...I thought he was FOS (full of shit) but, hello, Toyota recalls, I guess he wasn't)!!
To sum it up...my truck and I have spent about 30,000 miles together, and over 1,500 parking adventures! I suck so bad...so bad to this day like it is the first day that I have ever parked that damn truck! So bad that I make my mom (who has had double knee replacement) walk hundreds of yards to enter the store because I need the room to park and pull out. So bad that I choose a more expensive grocery store over another because their parking lot is easier to maneuver (for me that is :)). So bad that I get pissed at the black VW Jetta who parks in "my spot" at work because I have parked there for the past 8 months uninterrupted and now I need to find another! So bad that, both, some dear friends of mine, and me (because I admit I can't park that damn truck) stop our daily activities to take pictures of my parking!
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