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Tuesday, August 31, 2010
National hydrocephalus awareness month begins tomorrow
Saturday, August 21, 2010
8 Days!
May not seem like a long time to most. But for Maddox, 8 days without a seizure is a fantastic thing. I don't know if it's the increase in medicine finally leveling him out, is it the wonderful stem cells he received a little over a month ago? I think they are a miracle and have fixed so much in Maddox already, but this time they really have done a huge improvement in his seizures and in his personality and he has even started to bear some weight on his legs and jump up and down when Mommy is holding him. I know the main reason he is doing so great is because of how awesome God is and how many of our prayers he has answered already. Maddox really and truly is a miracle and he continues to prove that every day.
Devon, Bryce and Marissa are all beginning school on Monday. Devon will be a Junior, Bryce will be started 6th grade (going from elementary to jr. high, huge step). Marissa is starting kindergarten. She has the same teacher Bryce had 5 years ago. Hope I get along with her better this time : ). I am so glad that I will have most of my days back again. To sleep, clean or whatever I need to do without filling the car with kids is going to be so easy. The mornings will be crazy like always, and now we will have Brooklyn with us to be part of my "chicken without the head routine". The afternoons will be even crazier, since I will be picking up Kalissa and trying to maintain my sanity will making sure 4 kids do homework.
I really do love having all the craziness around me. It makes the days go faster and my sleep so much more appreciated.
Devon, Bryce and Marissa are all beginning school on Monday. Devon will be a Junior, Bryce will be started 6th grade (going from elementary to jr. high, huge step). Marissa is starting kindergarten. She has the same teacher Bryce had 5 years ago. Hope I get along with her better this time : ). I am so glad that I will have most of my days back again. To sleep, clean or whatever I need to do without filling the car with kids is going to be so easy. The mornings will be crazy like always, and now we will have Brooklyn with us to be part of my "chicken without the head routine". The afternoons will be even crazier, since I will be picking up Kalissa and trying to maintain my sanity will making sure 4 kids do homework.
I really do love having all the craziness around me. It makes the days go faster and my sleep so much more appreciated.
Tuesday, August 10, 2010
Still wondering
If Maddox will ever be like his brothers and sister. And what I mean is, will he get to run around and play and drive me crazy like they do? I never thought I would want someone to do that, but I want that more then anything for Maddox. He is so sweet and such a good boy, even though he thinks it's cool to sleep all day and play all night. He makes it so much easier. I think I have just been thinking a lot about how at this point the others kiddos were walking and talking and doing all the things that I am used to babies doing, and I feel sad for Maddox to not be able to do those things too. I still have a strong faith that he will, one day, but when I guess is what I have really been thinking about. I wish there was more I could do for him, to help him develop and accomplish those things, and that is a big part of why I feel helpless, because there is really nothing I can do, but keep doing what we have been and keep praying that his shunt continues to do its job, his brain continues to grow and that eventually he will be able to drive me crazy like the rest of them : )
Have to go to bed now, waking up early for Marissa's cheer leading/drill team camp. She is so excited. And I get to relive my HS drill team days.
Have to go to bed now, waking up early for Marissa's cheer leading/drill team camp. She is so excited. And I get to relive my HS drill team days.
Thursday, August 5, 2010
These are letters I sent to family and friends throughout the year.
This is just the beginning of our blog. I hope you enjoy reading about our family and our little miracle baby Maddox.
8/19/09
Hello everyone,
I know that people are wondering why we haven't sent out pictures or an update on Maddox. Most of you know what we haven been facing, but for those who didn't know, here it goes. We found at our 20 week ultrasound that Maddox had hydrocephalus. After constant Dr.'s appointments, on July 14th at 8:03am, Maddox arrived, weighing 7lbs 13oz, and just as beautiful as he could be. He had surgery on July 17th to place a shunt in his head to help drain the fluid. I don't think they ever figured out why this occurred, but our guess after meeting with so many Dr.'s was, that the tube that we all have in our heads that regulates the flow of cerebral spinal fluid didn't form the right way in Maddox. This is why he needed the shunt. He is still in the hospital, due to him now having seizures, but they are working on getting them under control so that he can come home. In the beginning he was having some feeding issues so they inserted a feeding tube into his nose to help with what he could not finish from his bottle. But on Monday of this week, he got sick of the tube and pulled it out and now is eating like a champ. Seriously, eating about 4 ounces every 2 1/2 to 3 hours. We are very happy that he has such a hearty appetite.
I can't tell you how hard this has been on us from the beginning of finding out that our little baby was going to face so many issues, and now after meeting with more doctors, the news we received from most of them has not been good. But we are continuing to believe that Maddox is a miracle and that he will defy the odds and make these Dr.'s be amazed by him and all he will do. He is the most beautiful little Angel and I know God will help him prove everyone wrong.
I would just like to ask you to pray for him. Pray that he goes against all they have told us and that he continues to improve and that his seizures can get under control. We feel very blessed to have been chosen to be Maddox's parents and can't wait for him to come home where he belongs.
For those of you that I haven't seen in a while, I wanted to say, I miss all of you. You are all always in my prayers and on my mind and hopefully one day soon, we can all get together, and I can introduce you to our new baby boy.
11/19/09
We met with the genetic Dr. today and he told us that all the tests they ran came back negative and that by looking at Maddox he didn't see anything that would make him think that he had anything genetically wrong. I am so happy for Maddox and my other kiddos so they don't have to worry about anything in the future. I just wanted to thank all of you for your support and prayers. We still have a long road ahead of us, but with wonderful friends like you, we will all get through it.
I wish all of you a safe and wonderful Thanksgiving with your families.
1/7/10
Belated Christmas wishes, Happy New Year and early Happy Valentine’s day.
As most of you know, it has been a crazy last 10 months for us. After finding out about Maddox’s diagnosis of congenital hydrocephalus, everything has just kind of been a blur of Dr.s appt’s, specialist’s visits and just trying not to go completely crazy. Maddox got to come home on August 19, 2009, after spending over a month in the NICU at Texas Children’s. He would have been able to come home sooner, but he started having seizures at 12 days old and we have been dealing with those ever since. He was taken to TX Children’s on October 4th due to seizures, but after many tests to ensure his shunt was not malfunctioning, they figured out that his medicine dose was too low for his body weight and after an increase, we were seizure free, for almost 2 months. But then they started again. We are scheduled to go to the hospital on Friday, January 15th, for a 3-4 day EEG. Hopefully this will finally give the Dr.s what they need to get them under control.
Devon is now 15 and only occupying himself with his girlfriend Maddy. Right now at the moment they are broken up, but I am sure that will change in the next hour or so : ). He is going to start driving in June, if his Daddy lets him. And I can’t say I am excited about this, but I know this is just part of growing up.
Bryce started the 5th grade this year and has joined the Drum ensemble. He is quite musically gifted. It must run in the family, or it’s all the Rock Band we play. He is going to start his season of Basketball with Upward this Saturday. He is very excited about this.
Marissa began Pre-K and she loves it. She is doing very well with everything but separating herself from her brother in the morning. I have heard many horror stories about the patrols having to pull her off of him in the morning. Besides that, she loves going to school, riding the bus and bringing me her Tuesday folder with her good grades in it.
Maddox is doing great. Despite all the horrible diagnoses the Dr.s have given us, he continues to prove everyone wrong. He is meeting all his milestones and I think he is beginning to say “MowMa”. This of course gets him anything he wants. He is such a sweetie and everyone loves him so much.
As for our regular family life it has been crazy. It’s hard to be a mother of 4, but it’s even harder to be a mother of 4, with a newborn with a special situation. We are able to maintain a small level of sanity and cleanliness, but that is about all we can say right now. We are in the process of finally setting up the trip to North Carolina. So that Maddox can be re-infused with his stem cells from his cord blood, in hopes that they can repair anything that may have been damaged due to all of the fluid. Please keep him in your prayers that it can make him whole and seizure free.
I hope that everyones year has been filled with great news and blessings and I wish that his year be even better than last. Thank you again for all of your support and prayers. We wouldn’t be where we are without them.
From our family to yours, THANK YOU and God Bless.
8/19/09
Hello everyone,
I know that people are wondering why we haven't sent out pictures or an update on Maddox. Most of you know what we haven been facing, but for those who didn't know, here it goes. We found at our 20 week ultrasound that Maddox had hydrocephalus. After constant Dr.'s appointments, on July 14th at 8:03am, Maddox arrived, weighing 7lbs 13oz, and just as beautiful as he could be. He had surgery on July 17th to place a shunt in his head to help drain the fluid. I don't think they ever figured out why this occurred, but our guess after meeting with so many Dr.'s was, that the tube that we all have in our heads that regulates the flow of cerebral spinal fluid didn't form the right way in Maddox. This is why he needed the shunt. He is still in the hospital, due to him now having seizures, but they are working on getting them under control so that he can come home. In the beginning he was having some feeding issues so they inserted a feeding tube into his nose to help with what he could not finish from his bottle. But on Monday of this week, he got sick of the tube and pulled it out and now is eating like a champ. Seriously, eating about 4 ounces every 2 1/2 to 3 hours. We are very happy that he has such a hearty appetite.
I can't tell you how hard this has been on us from the beginning of finding out that our little baby was going to face so many issues, and now after meeting with more doctors, the news we received from most of them has not been good. But we are continuing to believe that Maddox is a miracle and that he will defy the odds and make these Dr.'s be amazed by him and all he will do. He is the most beautiful little Angel and I know God will help him prove everyone wrong.
I would just like to ask you to pray for him. Pray that he goes against all they have told us and that he continues to improve and that his seizures can get under control. We feel very blessed to have been chosen to be Maddox's parents and can't wait for him to come home where he belongs.
For those of you that I haven't seen in a while, I wanted to say, I miss all of you. You are all always in my prayers and on my mind and hopefully one day soon, we can all get together, and I can introduce you to our new baby boy.
11/19/09
We met with the genetic Dr. today and he told us that all the tests they ran came back negative and that by looking at Maddox he didn't see anything that would make him think that he had anything genetically wrong. I am so happy for Maddox and my other kiddos so they don't have to worry about anything in the future. I just wanted to thank all of you for your support and prayers. We still have a long road ahead of us, but with wonderful friends like you, we will all get through it.
I wish all of you a safe and wonderful Thanksgiving with your families.
1/7/10
Belated Christmas wishes, Happy New Year and early Happy Valentine’s day.
As most of you know, it has been a crazy last 10 months for us. After finding out about Maddox’s diagnosis of congenital hydrocephalus, everything has just kind of been a blur of Dr.s appt’s, specialist’s visits and just trying not to go completely crazy. Maddox got to come home on August 19, 2009, after spending over a month in the NICU at Texas Children’s. He would have been able to come home sooner, but he started having seizures at 12 days old and we have been dealing with those ever since. He was taken to TX Children’s on October 4th due to seizures, but after many tests to ensure his shunt was not malfunctioning, they figured out that his medicine dose was too low for his body weight and after an increase, we were seizure free, for almost 2 months. But then they started again. We are scheduled to go to the hospital on Friday, January 15th, for a 3-4 day EEG. Hopefully this will finally give the Dr.s what they need to get them under control.
Devon is now 15 and only occupying himself with his girlfriend Maddy. Right now at the moment they are broken up, but I am sure that will change in the next hour or so : ). He is going to start driving in June, if his Daddy lets him. And I can’t say I am excited about this, but I know this is just part of growing up.
Bryce started the 5th grade this year and has joined the Drum ensemble. He is quite musically gifted. It must run in the family, or it’s all the Rock Band we play. He is going to start his season of Basketball with Upward this Saturday. He is very excited about this.
Marissa began Pre-K and she loves it. She is doing very well with everything but separating herself from her brother in the morning. I have heard many horror stories about the patrols having to pull her off of him in the morning. Besides that, she loves going to school, riding the bus and bringing me her Tuesday folder with her good grades in it.
Maddox is doing great. Despite all the horrible diagnoses the Dr.s have given us, he continues to prove everyone wrong. He is meeting all his milestones and I think he is beginning to say “MowMa”. This of course gets him anything he wants. He is such a sweetie and everyone loves him so much.
As for our regular family life it has been crazy. It’s hard to be a mother of 4, but it’s even harder to be a mother of 4, with a newborn with a special situation. We are able to maintain a small level of sanity and cleanliness, but that is about all we can say right now. We are in the process of finally setting up the trip to North Carolina. So that Maddox can be re-infused with his stem cells from his cord blood, in hopes that they can repair anything that may have been damaged due to all of the fluid. Please keep him in your prayers that it can make him whole and seizure free.
I hope that everyones year has been filled with great news and blessings and I wish that his year be even better than last. Thank you again for all of your support and prayers. We wouldn’t be where we are without them.
From our family to yours, THANK YOU and God Bless.
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