Nothing good came of our stay at Primarys. Neicell had a horrible reaction to the Valium in which she went CRaZy!!! She had a complete opposite reaction in which she turned into a demon (I love her dearly and I know it was the medication). It tried my patience beyond anything. I had my child spitting on me, ripping my nose off, yelling, kicking and not sleeping 2 minutes in 24 hours. So, lets just say she is allergic to Valium from now on. The Valium did decrease the seizure activity for a short period of time but not much. The doctors have now told us TWICE "we have never see a child do this....." I am so tired of hearing that. I know life could be harder with different medical diagnoses but we are fighting the unknown which is very difficult for me.
Our plan is to consult with Epileptic Specialists across the Nation. Very soon we may be traveling to them and trying to get answers for our little angel. We will be seeing the Neurosurgeon in January for possible surgery. What a life our little girl endures. At least for now it is doable but the future scares Eric and I so much. One day at a time, my motto....
Here we are again
We are trying this "Valium Protocol" again. About 1 month ago we were admitted to Primary Children's to have this study done. What they do is give Neicell high dose Valium to see if that will bring her seizure activity down at night. A success is a decrese of 30% in seizure activity. However, when we came 1 month ago they hooked her up to the EEG (monitors brain waves) and she was in continuous activity. So, they changed meds and sent us home. Well, in the last month we have many many seizures sometimes 3 a day so the doctor wanted to try it again. Here we are. I am praying tonight brings some answers. It is very difficult to sleep with your 7 year old right next to the nurses station WITH THE DOOR OPEN. Hello nurses shut up!!! I now have a new found knowledge of how annoying us nurses can be at midnight to Momma's who just really want to sleep. Where is my Ambien....????
At least we gave the nurses a chuckle. Last time we were here the IV team thought Neicell was a boy because they couldn't tell with the turban on her head. So, I decided to give her a little embellishing this time, oh, Aubrey (Neicell's dolly) also got it.
At least we gave the nurses a chuckle. Last time we were here the IV team thought Neicell was a boy because they couldn't tell with the turban on her head. So, I decided to give her a little embellishing this time, oh, Aubrey (Neicell's dolly) also got it.Twins' birthday letters
This is special and intimate, but I know how crazy and busy my life can get and I may not get this scrapbooked for some time. I write my girls a letter every year to put in their scrapbook, I know I will get my blog printed so I am safe right?
October 2009
Dear Neicell,
Wow 7 years old and it seems like yesterday I held you in my arms. I was so thankful to Heavenly Father for sparing your life and letting me raise and love you. I am so thankful for having your sweet spirit in my life. Every day you show me so much love. You leave for school on the bus and always tell me how much you will miss me. Maybe it is just for me because it takes so much for me to let you go. The second you get off the bus you come running “MoMMy!” That makes me the happiest Mom in the world.
This last year, your health has put a toll on your little body; seizures after seizures and so many trips to the hospital. I look up to you and your strength and endurance. You are so sweet and deal with so much garbage, and do it with a smile. I want you to know how difficult it is for your Dad and me to witness such horrible things. Every time you go into a seizure I scream inside and wish I could take it away. Your poor body does such horrible things and I can’t bear to see it. I am so sorry for the trials you endure. I pray for you daily and wish these problems would disappear.
I am so grateful for the times I get to see you shine. Every time you jump on your horse at “horseback” you light up more than I ever have seen you. I love to see you shine. You deserve the world and I will die trying to give it to you.
Your bus driver told me the other day how much she enjoys your personality on the bus. When you are there you get the kids laughing and singing all the way school. I am so proud of you, my little angel. School is a trial for us all. You are so sleepy and have such a hard time focusing in school. The doctors tell us it is because of all the medications you are on. Your life is like looking through someone else’s glasses. I am so nervous for the call say you are lost or you have had a seizure; thank goodness no call yet. Please endure to the end and stay safe. My life without would fall apart. I love you more than words can say.
You are reading and writing---huge huge accomplishment. When you were a baby we never thought you would even get this far in life because of the meningitis and sickness. You are a survivor and will accomplish the impossible. You proved everyone wrong and continue to amaze everyone.
My little Celly, you have the world wrapped around your finger. From Grandpa to Mel and Corb the world is at your beckon call. The second anyone hears you aren’t doing well, they are there for you. You have a special gift of loving and getting loved. I am amazed at your sweet spirit and the shine you bring forth.
I am so amazed at your love for babies. You are going to be the most amazing mom, despite your Mom’s example. The way you treat your babies and play with them I can’t wait for your children to come to this earth. They will be the most loved and adored children ever. I know Heavenly Father has saved his most precious children for you, He knows you will love and treat them better than anyone. You are such an example to me and make me try to be a better mom. Thank you for always putting my life into perspective. I have learned more from you than anyone or thing in this life—patience, humility, gratitude, love, pride, and so many more.
I love you so much and can’t wait for what this next year will bring. BRING IT ON WE ARE READY!!
Love ya,Mom
October 2009
Dear Erickell,
You would think you are 12 and not 7. You act so old and are such a huge help to me. You are such a big help to your Dad on Saturday if you hear him up early you’re right behind him. Your Grandparents tell me that was exactly the way your Dad was. You are so much like your Dad. You can pick up and do anything your little heart desires. You are so intelligent and amazing. I just need to show you something once and you have got it. I am so lucky to have you; I rely on you so much to help out. You are such an incredible sister. You are always looking out for your older sister and keeping tabs on her. I am so proud of your big heart and love you have for her.
Kell, you have accomplished so much this year. In swim team you took 4th at the county swim meet in freestyle. You are reading and learning so much in school, it is amazing. Dance finished in the spring and your concert was wonderful, you were the only one who knew the whole dance. You just started ballet at Barlow Arts Conservatory and I can’t wait to see how much you have learned. Your ability on the piano blows me away. Girl, you are amazing, I can’t squeeze or kiss you enough.
We have had a busy, fun, and crazy year. We have vacationed to Disneyland twice and Mexico. We have had many awful nights dealing with Neicell’s seizures. You have been such an amazing child. You are there waiting for the ambulance, turning the lights on for them, showing them where we are, and going and doing what a 12 year old would do. I am so grateful I have you. I don’t know what I would do without you. I have had a blast vacationing and playing with you at the beach, and riding the rides in Disneyland with you.
You learned to ride your bike this summer and that is all you want to do. It took a couple times falling in the rose bush outback but you got it down. I had told you and your friend no more riding scooters you need to be big girls and ride bikes now. After that you both decided to follow your momma’s advice. Yippee!!!
You are such a huge help to everyone. You are so willing to help anyone. I am so grateful you are an amazing cleaner and love to help. I love how you keep your room clean and help out sooo much around the house. You love to make everyone happy and everyone loves you.
The hardest struggle we had with you this year is pulling your teeth out. You had let your front tooth get so loose it was sideways and hanging on by a thread. We had bribed, pleaded, and finally just pulled the darn thing out by holding you down. You are so brave and strong with everything in life, but pulling teeth. With your kindergarten shots, yes 5 of them, you didn’t even cry. I don’t get it. Oh well, we only have 22 more to go…. ugh!
I think your biggest rival is Mo Joe. You and that stupid dog fight like brother and sister. I can sit back and laugh for hours watching you two wrestle and fight. You both enjoy each other and I love it. The saddest thing is that may be your only brother interaction.
I love you so much; I can’t express it well enough in words. I pray for you daily and hope you can understand and feel the love I have for you. I pray you will always choose the right. You are such an incredible daughter and I know you will move mountains.
Love ya,
Mom
October 2009
Dear Neicell,
Wow 7 years old and it seems like yesterday I held you in my arms. I was so thankful to Heavenly Father for sparing your life and letting me raise and love you. I am so thankful for having your sweet spirit in my life. Every day you show me so much love. You leave for school on the bus and always tell me how much you will miss me. Maybe it is just for me because it takes so much for me to let you go. The second you get off the bus you come running “MoMMy!” That makes me the happiest Mom in the world.
This last year, your health has put a toll on your little body; seizures after seizures and so many trips to the hospital. I look up to you and your strength and endurance. You are so sweet and deal with so much garbage, and do it with a smile. I want you to know how difficult it is for your Dad and me to witness such horrible things. Every time you go into a seizure I scream inside and wish I could take it away. Your poor body does such horrible things and I can’t bear to see it. I am so sorry for the trials you endure. I pray for you daily and wish these problems would disappear.
I am so grateful for the times I get to see you shine. Every time you jump on your horse at “horseback” you light up more than I ever have seen you. I love to see you shine. You deserve the world and I will die trying to give it to you.
Your bus driver told me the other day how much she enjoys your personality on the bus. When you are there you get the kids laughing and singing all the way school. I am so proud of you, my little angel. School is a trial for us all. You are so sleepy and have such a hard time focusing in school. The doctors tell us it is because of all the medications you are on. Your life is like looking through someone else’s glasses. I am so nervous for the call say you are lost or you have had a seizure; thank goodness no call yet. Please endure to the end and stay safe. My life without would fall apart. I love you more than words can say.
You are reading and writing---huge huge accomplishment. When you were a baby we never thought you would even get this far in life because of the meningitis and sickness. You are a survivor and will accomplish the impossible. You proved everyone wrong and continue to amaze everyone.
My little Celly, you have the world wrapped around your finger. From Grandpa to Mel and Corb the world is at your beckon call. The second anyone hears you aren’t doing well, they are there for you. You have a special gift of loving and getting loved. I am amazed at your sweet spirit and the shine you bring forth.
I am so amazed at your love for babies. You are going to be the most amazing mom, despite your Mom’s example. The way you treat your babies and play with them I can’t wait for your children to come to this earth. They will be the most loved and adored children ever. I know Heavenly Father has saved his most precious children for you, He knows you will love and treat them better than anyone. You are such an example to me and make me try to be a better mom. Thank you for always putting my life into perspective. I have learned more from you than anyone or thing in this life—patience, humility, gratitude, love, pride, and so many more.
I love you so much and can’t wait for what this next year will bring. BRING IT ON WE ARE READY!!
Love ya,Mom
October 2009
Dear Erickell,
You would think you are 12 and not 7. You act so old and are such a huge help to me. You are such a big help to your Dad on Saturday if you hear him up early you’re right behind him. Your Grandparents tell me that was exactly the way your Dad was. You are so much like your Dad. You can pick up and do anything your little heart desires. You are so intelligent and amazing. I just need to show you something once and you have got it. I am so lucky to have you; I rely on you so much to help out. You are such an incredible sister. You are always looking out for your older sister and keeping tabs on her. I am so proud of your big heart and love you have for her.
Kell, you have accomplished so much this year. In swim team you took 4th at the county swim meet in freestyle. You are reading and learning so much in school, it is amazing. Dance finished in the spring and your concert was wonderful, you were the only one who knew the whole dance. You just started ballet at Barlow Arts Conservatory and I can’t wait to see how much you have learned. Your ability on the piano blows me away. Girl, you are amazing, I can’t squeeze or kiss you enough.
We have had a busy, fun, and crazy year. We have vacationed to Disneyland twice and Mexico. We have had many awful nights dealing with Neicell’s seizures. You have been such an amazing child. You are there waiting for the ambulance, turning the lights on for them, showing them where we are, and going and doing what a 12 year old would do. I am so grateful I have you. I don’t know what I would do without you. I have had a blast vacationing and playing with you at the beach, and riding the rides in Disneyland with you.
You learned to ride your bike this summer and that is all you want to do. It took a couple times falling in the rose bush outback but you got it down. I had told you and your friend no more riding scooters you need to be big girls and ride bikes now. After that you both decided to follow your momma’s advice. Yippee!!!
You are such a huge help to everyone. You are so willing to help anyone. I am so grateful you are an amazing cleaner and love to help. I love how you keep your room clean and help out sooo much around the house. You love to make everyone happy and everyone loves you.
The hardest struggle we had with you this year is pulling your teeth out. You had let your front tooth get so loose it was sideways and hanging on by a thread. We had bribed, pleaded, and finally just pulled the darn thing out by holding you down. You are so brave and strong with everything in life, but pulling teeth. With your kindergarten shots, yes 5 of them, you didn’t even cry. I don’t get it. Oh well, we only have 22 more to go…. ugh!
I think your biggest rival is Mo Joe. You and that stupid dog fight like brother and sister. I can sit back and laugh for hours watching you two wrestle and fight. You both enjoy each other and I love it. The saddest thing is that may be your only brother interaction.
I love you so much; I can’t express it well enough in words. I pray for you daily and hope you can understand and feel the love I have for you. I pray you will always choose the right. You are such an incredible daughter and I know you will move mountains.
Love ya,
Mom
Halloween Piano Recital
Witches Rock---and she rocked it. Memorized and perfect--that's our girl
My little witch and her friends that take lessons. Big 7
"This is whatever I wanted" Little Neicell circled everything and I mean everything in the American Girl magazine so phew at least I got the "whatever I wanted" gift yipee!
Erickell got a bike about a month ago and was reminded multiple times it was for her birthday and she agreed to this splendid idea, although kinda sad not opening as many gifts. Whatever, she was spoiled.
Well, lets just say I will never make cakes again. Time, money, time, money so not worth it. Did they even appreciate it? I doubt it but it was a good experience, NOT!
Neicell's horse cake, for all of you that aren't aware Neicell loves horses. She takes horseback riding lessons (mainly for therapy) and loves it!!!
Erickell is obsessed with mermaids and hopes to be one when she grows up. Plus she is a little fish in the water.The girls had a fantastic birthday. They had their closest friends and family over for cake and icecream. They got to pick their favorite dinner and breakfast that day and of course was pampered all day. Dad and Mom also went to their schools and ate lunch with them. I think they got spoiled. We try to go a little far, but we only get to have one birthday a year at our house so it is way fun.
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