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 : )