Been following.....

I have been following lots of wonderful babies on facebook lately.  Some of them are defying the odds that were given them and other have left us, but continue to educate, inspire and give hope for other special needs parents. and parents who are finding out their little ones are going to be speciallyabled. 

I think we can all learn a lot from these awesome miracles and their strong parents. 

Please check out their sites.

https://www.facebook.com/babytreski

https://www.facebook.com/LoveForAlynaMarie?hc_location=stream

https://www.facebook.com/prayersforcorbinmchenry?hc_location=stream

Here is a beautiful article written about Corbin. 

http://liveactionnews.org/baby-trisomy-13-lives-135-days-reaches-500000-facebook-fans/

I have encountered so many negative people in the amount of time that Maddox has been here.  And I see that it is a very common problem among special needs parents.  I think it's just another form of segregation and ignorance.  Lets keep teaching the world that every life has value no matter what the Dr.s/medical community might say or think.

 BE THE VOICE FOR THOSE WHO CAN'T SPEAK FOR THEMSELVES!

 

 

Happy Birthday Maddox

I can't believe it's been 4 years.  4 years since we were so scared because we didn't know what to expect.  Then over 5 weeks of Dr.'s telling us to take you home and enjoy you, because they were sure you had Walker Warburg syndrome.  You didn't.  You still continue to baffle the medical community with all the wonderful things you are able to do with such little brain.  And we still have to deal with some of the Dr.s negative responses to you when you are sick and how they just see you as a "case" and not the center of our family.  You keep proving them wrong every minute you are here and we all are truly amazed with how awesome you are.  We all love you more then you know and truly feel blessed to have been picked to be your parents, brothers and sister and family.  Keep on being the miracle and we will keep fighting for you like you do for us everyday.  WE LOVE YOU!  Happy 4th birthday Maddox!

be the voice

Going to countless doctors appointments with your special needs child is not something out of the ordinary. For us, we have been fortunate to not have to visit the hospital many times with Maddox. He had to go once for seizures when he was 4 months old and it was due to him out growing the dose of his medicine. They gave him a loading dose of phenobarb got his levels right and we were on our way home in less then 24 hours. When I had to take him to the hospital this last time it was a different story. But because it was so uneventful the first time, it was hard to believe what was going on this time we went. 

We had to go again for seizures. When Maddox gets sick, even the slightest sick, he has a seizure or seizures. He had been having seizures for about 2 weeks. A dose of diastat usually resets him. It worked the first time for about a week then after a week they came back with a vengeance. I gave him a dose on Sunday and he was good until Monday afternoon. I kept him home from school and by Wednesday they had started again. I gave him another dose, took him to the pediatrician and called his neurologist to see what I should do from here. The pediatrician and I both suspected he might have some kind of sinus infection because he sounded stuffy. He started taking amoxicillian which usually stops the seizures if it is an infection and all is good. Not this time. I gave him another dose of diastat on Thursday early afternoon and upped his dosing of Onfi. Talked to his neuro that afternoon and was told I could diastat him again at 12AM if the seizures had not stopped. If that did not take care of the seizures then I needed to bring him to the ER. He ended sleeping until 2AM and then began to seize again. I gave him another dose of diastat at 2AM and it took 30 minutes to take affect. This usually is an instant fix. I should have known things would not be good after it taking 30 minutes. He woke up Friday morning at around 7:30 and began seizing again. I called Maddox's Aunt and we both decided it was best to take him to the ER where his neuro was so we could get the best care. I waited for Sammie to get here so we could go to the hospital together. I had to pack stuff for the hospital anyway. I called his neuro to let her know we would be coming and she would be expecting a call from the ER doctors to decide what to do. When we got to the ER Maddox was asleep. It is a long drive. The ER doctor was good T asking questions and talking to Maddox neuro on what should happen next. But then the worst doctor with the worst bedside manner ever came into the room. He proceeded to tell me after looking at MRI's and cat scans of Maddox's that were over 2 years old. That because of what little brain matter Maddox had that for him to be seizure free was impossible. I told him I understood that, but that what he was doing now was not normal and usually after diastat, amoxicillian, etc.... they would get under control and that unless Maddox was sick he did not have seizures. He nodded his head as to appease me and then left with his flock of interns following behind him. I am used to this kind of behavior, but Sammie was in shock as to how he spoke of Maddox like he was so insignificant. This is where things started to go wrong.

The ER doctor per Maddox's neuro told me they were going to give Maddox a loading dose of phenobarb and that should stop the seizures. He told me if I didn't feel comfortable leaving, that they could keep him in for observation overnight. Less then an hour later I was calling Michael and telling him he needed to get there as soon as possible because I wasn't sure what was going to happen. They gave Maddox a loading dose of phenobarb, the problem was, they did it to quickly. I am sure they have a protocal they follow. 3 year old comes in with seizures and the give them phenobarb at this rate and this much. But with Maddox and most special needs kids, they are different. Unfortunately we had to learn this the hard way. Maddox's vitals started to drop. His heart rate plummeted, his blood pressure dropped, his resting respiration's where 6 breaths per minute. It happened so quickly and during all this, he continued to seize. So much was happening during this time all I remember thinking was, this is not what I expected to happen. I thought we would get a dose of phenobarb, it would stop the seizing and we would be home that evening. We came dangerously close to leaving the hospital without our baby. We were rushed to the PICU, where the doctors gave him adavan for his seizures while they called the asshole neuro who I talked to earlier. The one who felt the need to inform me of how small Maddox's brain was. Tell me something I don't know. I asked that they call Maddox's neuro and after speaking with her they decided to also give him dilantin for the seizing. This helped for a while, but didn't stop them. They stabilized his vitals and then he was fitted with EEG wires to monitor his seizures. This was all Friday to early Saturday morning. He seemed to be resting comfortably, until the next evening when the seizures began again. And not before I had to deal with the asshole doctor again. This time he came in to tell me, since the seizures had not stopped all he could deduce was that Maddox was deteriorating and was essentially dying. He asked had no one ever talked to us about this before, because it was just a matter of time before he passed away and we should be prepared for that. I told him everything he was saying to me was the complete opposite of anything we had ever been told. We had been told would he ever be like me and you, no, but what he had was not life limiting. He had already done way more then any doctors had ever thought he could and when he was not sick he was a pretty normal kid considering how involved he was. He met all his milestones at school, he continued to progress in all his therapies. Opposite of what he was telling me. Then he continued with his hands on his chin like he was thinking "I wonder what it would be like to be Maddox, what does he think about, hmmmmm". I wanted to strangle him, but I held my composure.

That night got worse. He began seizing again and it seemed to be one continues seize. For over 2 hours. After I found a nurse and insisted that someone do something to stop them, another uncompassionate doctor came into the room and said, since Maddox was in static epilepticus that maybe he was dying. That some kids with brain injuries or conditions like his come to the hospital in the state that he is and they are dying and the only way to maybe save him was to put in in a medically induced coma for 5-6 hours. I argued that since his brain was smaller did it have to be for that long and she said yes, even though it was smaller they had to do it for that long. Now I know Maddox is strong and a fighter, but I also know that he was in a bad place and his body was not strong enough to come back from something like that. I told her if they did that he would die, and she said "that is the RISK you have to take". Thanks for being so compassionate, it's not your baby, so I can't imagine you would care. Wonder how she would handle the situation if she was in it. I insisted that I speak to Maddox's neuro, she said this was per his neuro, I again insisted on talking to her and hearing this from her before I said yes. She got the doctor on the phone with me and never once mentioned medically induced coma. She asked if she could give him phenobarb again. She asked how long it had taken them in the ER to do the first dose and from there decided that they were going to do a smaller dose over a longer period of time. The lovely PICU doctor confirmed with me that I agreed to this and if this didn't work we would try the medically induced coma. THANK GOD it worked. He was so sedated he was practically in a coma, but it stopped the seizures. At this point they are running tests on everything, checking for virus's, infections, shunt failure and we even got to hear that he was dying. The asshole neuro even said since he was peeing so much since he was being filled with fluid, that since he was dying he was peeing out all his cerebral spinal fluid. Needless to say, when your in this situation, even though you know your baby/child better then any doctor. You know what they can and can't do. You know what is normal and not normal for them. You know that if the asshole neuro is right that you will die yourself if something happens. But after being in this environment for a while you start to doubt yourself. You start to wonder if they are right. For me, you even start to question did you keep him/her here just for your selfish reasons. Because these doctors have you doubting everything with their negativity.

This is why I am writing this. Be the voice, for your child who can't tell them. They can't tell us if their head hurts or their stomach hurts or whatever hurts. They count on us to know them, to figure it out for them so you can be the one to convey what they are feeling. And believe me, if Maddox could have, he would have told the asshole neuro, "you know what I am thinking, I am thinking f--k off d--k head". They count on us for everything and we should never second guess what we know. What we know they can do, what we know they are capable of and what we know is wrong no matter how bad it looks at the time. Some of the doctors are so jaded. They have seen so many horrible things that they have turned every patient into a total clinical case. Not thinking of how devastated the parents would be if something happened to their child. BE THE VOICE, for the little ones who have no voice of their own. Never let anyone doubt your child. They have already proven to beat the odds, proven the doctors wrong and proven how much stronger then you or I ever can be.

When I was 20  weeks pregnant with Maddox I had to get a level II ultrasound.  The other day while reading the Houston chronicle there were about 5 different sections about Houston's philanthropy.  One of the sections was "Houston Heroes".  One of the heroes was the high risk OB GYN that told me Maddox had hydrocephalus. 

Here is the link to the article

http://www.chron.com/default/article/Childhood-dream-comes-true-for-doctor-4290360.php

Here is the response that I sent to the journalist that wrote the story. 

Dear Ms. Cowen,

I just finished reading the story in the chronicle about Houston Heroes Dr. Joanie Hare, and I would like to share my story and experience with Dr. Hare. In my opinion she is just the opposite of a Hero. Let me start out by letting you know I am the proud mother of 4 beautiful children ranging in ages from 18-3. I have had the pleasure of working with many doctors over the years for my prenatal care and never experienced what I did when I went to visit Dr. Hare. In November of 2008 I found out I was pregnant with my 4th child. Super excited about having another baby I went to all prenatal appointments as I should. Due to my age I was told I needed to have a level II ultrasound at the time I was 36 years old. I was seeing an OB GYN at Willowbrook Methodist hospital which at the time did not have high risk doctors. Again I only had to go see Dr. Hare due to my age. Lets fast forward to March 3, 2009 when I was to go see Dr. Hare for my ultrasound. My appointment was at 2:00 or 2:30 it was almost 4 + years ago. I sat in the lobby of the doctors office until around 4:00pm, only to sit in another waiting area until around 5:00. When Dr. Hare finally came into the room to do the ultrasound close to 20 minutes later, she was very impersonal. She was adding some flavor packet to her water and shaking while asking me in a very impersonal tone, "Mrs. McNear why are you here to see me?". I proceeded to tell her that due to my age my OB GYN wanted me to come get a level II ultrasound. She then asked me why I had not had any prior testing done (FISH test) to check for any chromosomal abnormalities. I told her I had not had any testing done with any of my other children so I did not feel the need to do any testing with this baby. She then told me "at my age there was a 1% chance that anything could be wrong with my baby" and then she began the ultrasound. With most ultrasounds you get the whole "look there is the heart, feet, hand, etc...". Dr. Hare said nothing to me directly only said things to the nurse that of course I didn't understand and then after 15 minutes of silence to me and my mother in law she finally said "Mrs. McNear your baby's brain is not developing the way I want it to and I need to do an amniocentesis now, can I do the test?". I asked her again because now I am in shock what did this mean and she said "I don't know, I need to do the test". I consented to the test and was moved from that room to another room where a genetic counselor came in to talk to me. She said she was told by Dr. Hare to come in and speak with me. I asked her what did this all mean and she told me that the baby could have a condition called trisomy 13, 18 or 21. All of which were fatal to the baby and that is what the FISH testing would determine. I then asked if that wasn't the case what was wrong then and she said that it was a severe case of hydrocephalus and that Dr. Hare suggested that I terminate the baby immediately. I told the counselor that was not an option and she said that Dr. Hare had said this was not the baby I wanted and I should terminate the pregnancy. I have 3 perfectly healthy children and now this doctor that I was only coming in to see because of my age is telling me that my baby's brain is not developing the way it should and that I needed to terminate my pregnancy. Needless to say, it was all very overwhelming and extremely traumatic. After the amniocentesis was performed she told me that she would be sending out the sample for testing and she would get back to me as soon as possible the next day. The next day came and after not hearing back from the doctor, I called and asked if the results were in. I was told the sample had not even been sent out until that morning and they wouldn't know anything until the earliest the following day. During this time I cannot express the extreme sadness and anxiety that was experienced. All which is not very good while you are pregnant. I never went back to Dr. Hare. I found a new wonderful and compassionate doctor that did confirm that my baby did in fact have hydrocephalus but that besides that everything else was perfect and looked great. He took his time and did an hour + ultrasound measuring, checking and the entire time telling us what he was looking at and why. Unlike Dr. Hare, who honestly seemed inconvenienced by me being in the office asking her to do what she said in your article that was her dream job. I have read many reviews of Dr. Hare and from what I read, if your baby is not what Dr. Hare seems perfect and beautiful, they are not worth being born and should be terminated. It saddens me to think about how many beautiful children have been terminated because of the horrible fate that Dr. Hare felt they had. Children that yes, may not be perfect, in the eyes of society, but are no less worthy of being part of our earth with the rest of us.

Let me skip ahead to July 14, 2009. I gave birth to a beautiful baby boy. Maddox came in to the world crying like all other children and was immediately loved and doted over. Yes he did have disabilities, but it didn't make him less wanted, less worthy or any less loved. I wish that prior to you writing this article you could have had all spectrum's of what Dr. Hare does. In my eyes she is not a hero. It is not her place to inflict her opinions on her patients. Yes she should inform them of their babies health, but never should she tell someone "this is not the baby they want and they should terminate immediately". How did Dr. Hare know what kind of baby I wanted. A baby is a baby and is always a blessing that should never be discarded or not wanted due to disabilities. Side note - the diagnosis of hydrocephalus is the most common reason children have brain surgery. Approximately one in 500 infants are born with hydrocephalus or acquire it shortly after birth. If you think about the number of children that are born in the world, the diagnosis of hydrocephalus is not a death sentence and it a very manageable condition.

Maddox is now 3, goes to early childhood classes at Schultz elementary. He is nonambulatory, nonverbal, has epilepsy and is visually impaired. But he is the happiest, funniest and most loved little boy to everyone that has the pleasure of meeting him. He is strong, smart and extremely handsome. And if I would have listened to Dr. Hare he would have just been discarded as medical waste because he was not what she thinks is perfect or worthy.

Just wanted to share my opinion of one of Houston heroes. If this is all that Houston has to offer in heroes, I think we live in a very sad city. 

I have always wanted to write a letter to Dr. Hare, letting her know how horrible she treated me and how horrible it made my pregnancy to try and enjoy after she rudely told me her opinion of my child.  If any of you get horrible news like this from your Dr. about your baby, know they are not right for telling you to terminate your pregnancy. Everyone has the same right to be born as a "normal" baby.  It is not the Dr.s place to play God and try and convince you of anything else.

New Year 2013

Hope everyone had a fantastic Christmas and New year.  It was again an adventure at our house. 

After everyone started school, all the cooties came home with them.  Since this was Maddox's first year exposed to all the cooties the sickness began and along with them came the spasms after spasms after spasms.  Sometimes more then 50 a day.  I went through so much diastat that I was having to go refill every 2 weeks.  On our visit to Dr. Von Allmen he was having one of his spasm days.  Arm twitching, leg twitching, but still able to talk (babble) during them and of course suck his paci.  Dr. Von Allmen decided to start him on Onfi.  A new drug for what she said, kiddos like Maddox needed to get through the day without continuously spasming.  After hunting it down in the Houston and surrounding areas. I picked up the prescription in Magnolia and started it right away.  After about 4 days of the medicine the spasms stopped and since that we have had maybe 20 total and that is a high number, but it's been months (since October).  So to go months with maybe 20, from days with more then 50, we feel very fortunate. 

Devon began his Air Force bootcamp on November 6th.  He went off to Lackland Air Force base in San Antonio, TX.  And he just graduated from bootcamp on January 4th.  We all made our way up there to hang out in the freezing weather and sleet.  It was super cold, but super worth watching my 18 year old baby do something so awesome.

 

Halloween was great and the beginning of the holiday season at our house.  Paw Paw (my dad) the Saturday after Thanksgiving called me and told me he was so sick that he couldn't drive himself to the hospital.  This is from the rock of our family so I knew something was wrong.  His wife has severe Alzheimer's so she needs to be tended to at all times and also could not drive him. So after picking him up and taking him to the hospital for what he thought was a tooth ache, turned into an 8 day stay at the hospital.  First after sending him home the 1st night with antibiotics, painkillers and zofran, we ended back up at the hospital the next morning.  His BP was super high and they couldn't figure out why.  First they thought stroke, then they thought severe jaw cancer.  Turned out to be a very rare case of the shingles.  Hunter Ramsey disease.  We feel very blessed that it was something manageable and not something terminal.  He is still hurting cause of the nerve damage and bells palsy, but again, very fortunate and blessed to only be in pain.  The 21st of December we got a call from Gigi (my mom).  She was back in the hospital with congestive heart failure.  She had this 7 years ago when Marissa was 5 weeks old.  They thought she had a blockage and was going to have a heart attack or a stroke, but it was congestive heart failure.  They did a heart catheter and everything looked good.  The Dr. limited her fluid intake and she got to come home on Christmas eve.  We have been so very blessed that everything that at first seemed so horrible all turned out to be manageable and everyone is her still with us. 

We did have some bad things happen.  Maddox's hydro friend Tre earned his angel wings right after he had his first birthday.  He was a sweet little baby and he will be missed by everyone that meet him. 

So here we are at the beginning of the year and we already are all trying to recover from the holidays and now from foot problems.  Michael just had foot surgery on Friday and it is super gross.  I have nicknamed his toe "frankentoe".  I pulled a ligament in my foot and finally went to the Dr. because it was making everything from the waist down hurt.  And now me and Michael have matching boots.  It sucks when you have to pay $200 for one boot and it's not even a cute one : ). 

It is that time of year where all our appts for every 6 months is coming up.  Next is trying to get speech therapy set up and then a new geneticist. 

Here are some of our pictures from the holidays.

 

Marissa on Halloween. 

 

 

 

Maddox on Halloween.  He was the singer from LMFAO and then after the hair came off he was Elton John :)

 

 

Last picture I got of all of my babies together.  The pretty girl next to Devon is Maddy.  She is Devon's girlfriend and totally fits in our crazy family.

 

 

Here they are in true form : )



 

Milestones

A new school year has started for everyone. 

Bryce started 8th grade.  Last year in junior high.  Big man on campus! until next August when he will be the little fish in a big pond. 

Marissa started 2nd grade.  She is the little woman.  She is only 7, but acts as if she is 21 or older.  I have to say, she is really coming into her own.  She is still extremely whinny, but such a tremedous help to me! 

And last Maddox.  He has reached a huge milestone.  I have to admit, I was totally freaked out about him being away from me for 5 hours a day.  And thought he would be totally freaked out.  But it is just the opposite, he loves school.  I really think on Friday, Saturday and Sunday he said "go chool".  His teachers say he loves it too.  I guess he really is a big boy. Which makes me happy that he again has gone against the Dr.s diagnosis and reached not only 3 (refer to my first post) but has started school and is loving every minute of it!  I wanted him to look like a super cutie so I made him one of those shirts with a tie on it.  He would have been cute if I sent him in a paper sack : ).

 Wait till next week, when he gets his new glasses.  He will be so cute you will want to eat him!

I volunteered to be the room mom in his room really more for me and my spying that I need to do.  I know he is in good hands and loves it, but mommy is lonely and I need to be around him more then he needs to be around me.  Daddy keeps telling me to cute the chord : (.

Happy Birthday Maddox

Happy Birthday Maddox!  3 years ago you came into our lives.  The Dr.s said one thing and you have done the opposite.  Now all they can say is how well you are doing.  We know they don't think your perfect like "everybody" is supposed to be.  But we think you are smart, strong, awesome and so handsome and of course perfect in every way.  We love you and can't wait to celebrate the big 4 with you next year.  Love from your "amama", "agaga", sissy and bubba's! 

To long, but I will really try and keep it up

I am not only going to talk about Maddox in this blog, I will also speak of my other children and stuff that happens in our lives. Hope you enjoy.

So much has happened since our walk, which was a huge success. We managed to raise over $1033 for Maddox's Ball alone (our shirts were lady gaga themed) for the event all together in Houston they raised $10,292.  The goal was $10,000 for Houston so it was a great accomplishment.

We continued with our Hydrocephalus support groups which didn't get anyone attending until the very last one for the year (2011) but boy was it a great meeting.  Santa even decided to visit : ).

Our best friends Tim and Fran got married. I made her bouquet and stuff for her wedding.  I am not good but I am cheap : ). 

We entered 2012 ready to go . Even though most of us were sick from the beginning of December until probably the middle of March, we were still going to Mississippi for our annual spring break vacation, when something horrible happened in our family. 

I have never said much else about my family except for mainly about Maddox. So I will try to make this short and sweet an easy enough to follow. I have 4 kiddos.  Devon, Bryce, Marissa and Maddox.  Devon's dad is Mikey.  Bryce and Marissa's dad is Edwin.  Maddox's dad is Michael (not to be confused with Mikey). I married Mikey very young and we just out grew each other but we have a great Son so no regrets for anything. We are still very close and great friends. Edwin and I married after being together for 8 years and 1.5 kids.  Bryce was 5 almost 6 and I was pregnant with Marissa. We were married a little over a year and a half and I found out that he had a girlfriend.  So we divorced. I was devastated and truly thought there was something wrong with me until Michael. We met in 2001 and just kind of kept bumping into each other at work.  I applied for another job in the company and I had to interview with him, but before we had our interview he called me and as soon as I answered the phone he said "oh, your that Vanessa" I guess I left an impression on him.  Hope it was good : ).  We started working together but only briefly then just ended up on the same floor together.  And when I was going through my divorce and being really sad an pathetic, he was there every step of the way.  And the rest is history. 

Anyway back to why I started to tell you a short bigraphy. We picked up Devon from Mikey's house.  Mikey recently remarried Charlie and she has two kids.  Sydney and RJ.  We all hung out and chatted for a while before we packed up everyone and headed for Mississippi.  We were not even an hour away from Baytown, TX.  When Devon got a call that RJ had been hit by a car. We immediately turned around. That was the longest hour ever.  When we got to their house it was horrible.  Just as we pulled in, Devon got a call that RJ had not made it.  The impact from the SUV running him over had killed him instantly.  It was the most horrible event I had to be part of.  Trying to console my son because he was so confused.  Trying to console his girlfriend who is like a second daughter.  Having to hear Mikey sob on the phone because of this devastating event.  And then trying to console and explain to my children what had happened because we didn't say anything to them when we got the call.  I will be honest, I did not know RJ that well.  He had come to our house a few times and a birthday party and we had just played with him that morning.  But I still cried for him today.  When you hear of stuff like this happening on the news or in the paper, it is so sad.  But when it is so close to home, it really freaks you out.  I don't take any day with my kids for granted since that, because you never know what is going to happen.  You are loved a bunch sweet one and will be missed RJ. 

Now for some happier news.  Devon graduated High School.  He now has enlisted in the Air Force. I am so proud of him, but also worried, but again still so proud.  Bryce will be going into the 8th grade.  He is doing so great in school and is doing well even with being involved in Football, Basketball and Orchestra.  Marissa will be going into 2nd grade.  She is keeping herself busy with Hip Hop class and swimming lessons in the summer.  Maddox will be starting PPCD this August.  We have had many meetings for this awesome milestone for him.  One of the meetings we went to I was so surprised as to how he was actually interacting with the teacher and playing with her.  Not that I don't know he is a smart little man, but I never thought he could communicate that. So after our meeting I did a little experiment with him about showing me his eyes, nose and mouth.  And would you believe he knows where they are.  It is definitely a raw expression on how he shows me, but hey, we will take anything he can give us and celebrate it over and over again.  He also now has showed me where his foot and hand are, and can tell me the difference between Maddox and Mommy.  SO PROUD!!!!!  We met with the genetic Dr. again.  They are determined to label him with a syndrome.  Even though they told us when he was 4 months old he did not have Walker Warburg syndrome, now they are saying, their testing is only so good and they still think he has it or Joubert syndrome.  I asked my number one question,  is it life limiting (will he die at a young age) and I was told no.  That is all I need. We are all prepared for a long, hard, slow progression, but as long as he is here with us, we all have nothing but time.  And so does he!

Every one's birthday is coming up with the exception of Devon his was in June.  Happy 18th baby. 

Here are some pics of all the stuff that has happened 

Maddox at his Hydrocephalus walk

Maddox's Ball and all his monsters (OK I will stop with the gaga-isms)

Maddox loved Santa

He was wondering who this man was with the hairy face

Bryce and Marissa trying to ensure Santa was going to visit them : )

I love this one, Fran is so happy!

and you may kiss the bride

Maddox looking handsome at their wedding dinner

This is Fran's bouquet

boutonniere

the cake.  again not good, but cheap : )

Ronnie James Wallace (RJ)

Maddox was happy for the first 100 names called

After about 200 he wanted to leave (there were over 350 names)

Goosecreek Memorials 1st graduating class of 2012

Devon and Maddy

Hydrocephalus awareness walk

Getting pumped up for the Hydro Angels over Texas Hydrocephalus walk.  Just sent out an e-mail today to get donations for Maddox to reach his goal of $500.00 and I already have $225.00.  We are so blessed!  If you would like to join us, please feel free.  Here is the information below. 

Please Help Support Maddox on his 2nd Hydro Angels over Texas Hydrocephalus Awareness Walk September 24, 2011 Hosted at: Oyster Creek Park Sugar Land, Texas Check-in begins at 8:30a & Opening Ceremony is at 9:30a & there is something to do from 9:00a till 2:00p Join Hydro Angels Over Texas as we raise funds while we Boot Scoot Across Texas for Hydrocephalus Awareness. You do not have to wear “boots” however; this is our THEME for 2011! So go ahead and wear your cowboy boots, go-go-boots, rubber boots, crazy boots, bling-bling boots… you get the point! We would love to have you & your team SUPPORT the cause. Shine up those boots and come Boot Scoot’n with us! Just so you know, it doesn’t matter what you wear just as long as you are there! Sneakers or flip - flops welcome. Each person attending, child or adult, who has Hydrocephalus will be recognized at opening ceremony and will receive an event souvenir t-shirt. *Must pre-register with size. Hydro Angels Over Texas is a nonprofit 501(C)(3)Organization. We support infants to elderly living with the complex issues of hydrocephalus; on a daily basis, and in the future with research. Our Vision: "To create a world where hydrocephalus is at the forefront of public attention and a cure is imminent."

Last year our team was able to raise $400 for the walk, please help Maddox reach his goal of $500 this year. If you are able to, it would be wonderful to have everyone there to walk. I know it will be hot, but we would love to see everyone. Thank you again for all the support you give us throughout the year. Without wonderful family and friends like you, it wouldn’t be possible.

Please follow the link below to our page.

http://www.active.com/donate/txbootscoothouston/maddoxray0714

Happy Birthday my little Champ!!!!!

Two years ago at 8:02am you came into the world and were whisked away from me for over 24 hours.  The news we got over the next 17 days was the worst news ever.  But we walked away knowing that God did not bring you here for such horrible things to be true, and you have proven them wrong and continue to do so.  You amaze everyone who meets you and your change every ones life for the better.  We all love you Maddox.  And are super proud to be the ones you and God picked to be your family. HAPPY BIRTHDAY!

Great news hard to swallow news

Went to the eye Dr. last Tuesday and the Dr. was able to determine that Maddox is extremely near sided.  The only thing we ever got from the other Dr. is until he can tell us what he can see we will never know if he can see.  Kind of a hard thing to wait for when you dealing with a severely delayed child.  Makes me sad to know if I would have gotten a second opinion sooner maybe he would be just a little further along in his development, but now that we are on the right path, I can only keep on hoping for the best. He will be getting glasses sometime this week and also I will be administering an eye drop in his eye once a week to keep them dilated so that he can bring in more light to see as much as possible.

That was last week, the week before brought us some other news.  We met with a physical medical and rehabilitation Dr. for the first time on Monday before that.  She was a fantastic Dr. Really seemed to know her stuff and for the most part gave us some pretty optimistic news, until the end.  When she sprung on me that she wanted to add some more diagnosis to Maddox's condition.  She has now added cerebral palsy and quadriplegic.   That one was hard to hear.  The cerebral palsy we always kinda knew would come since he has so much of his brain missing, but the quadriplegic very hard to hear.  Here you have a very actively kicking child.  Moving, squirming, etc... but since so much of his brain is missing and damaged, the quadrant of his brain that controls his motor skills is the part that is damaged, and he is very weak in all for quadrants.  That is the reason for the new diagnosis. 

Oh well, we will keep rolling with the punches.  He is worth every hit!

It's been a while

It's been a while since I have been on and added anything to the blog.  I will try and be more current with the news.  We did our Hydro Angels over Texas walk in October in New Braunfels.  It was awesome.  Maddox slept through the whole thing, but it was great to see all the people there that are dealing with the same thing we are.  I met Sheri (founder of Hydro Angels over Texas).  She is an awesome person and has helped me become an Hydro Angel and start a NW Houston Hydrocephalus support group.  I have my first meeting April 7.  I was the only attendee, but I know one day, I will have at least one more person.  Thanksgiving came, followed by Christmas.  And from December 26th, someone in our house has been sick with one thing or the the other.  We had the flu, stomach virus, sinus infections, virus's, more sinus infections and more random virus's and it still hasn't ended.  It is now April 8th.  And anytime Maddox gets sick, it takes him a lot longer to get over it.  If it takes us 3-5 days, it takes him 3-5 weeks.  So needless to say, he has been sick a lot lately. 

Since January we have been lucky enough to get a physical therapist and speech therapist started about a week ago.  Maddox has made great strides (for Maddox) since Ms. Wendy has started coming.  He is now holding his head up, unless he's tired or just had an episode (epileptic spasm).  He is starting to bear weight on his legs and now has a stander.  He also got AFO's for his feet and bowed legs.  And we are now waiting on an awesome stroller for him. 

We just had our shunt checked in March and everything looked great.  A whole lot more parts of his brain has filled in and even a little more fluid has drained out.  So we seem to be heading in the right direction. 

Below are some pictures of our last months.  Now we have some teethers : )

teeth smilers

Maddox in his stander 

 go Texan day photo shoot

 Devon being cool

 Bryce is super cool tweener

 Maddox at the beach

 beach smilers

 Christmas 2010

National hydrocephalus awareness month begins tomorrow

Tomorrow is the first day of National hydrocephalus month.  I am attempting to educate the people in my small town/community about the condition.  I have already met an "angel" that just moved into my neighborhood about a month ago.  If Brandi had not insisted we introduce ourselves to her at the bus stop, I would have missed out on meeting her.  It is amazing how God places people in your path, just when you need them.

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.

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. 

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.