Just The 3 Of Us

When I say "we" or "us", I'm referring to Zan, Haygen and myself, it's always just the 3 of us. This includes the past posts as well as the future ones.

Being a mom takes a lot of hard work, being a single working mom is tough, being a single working mom to one very active sports player and one special needs child is challenging. You are pulled from every direction. You are the working mom during the day, the fun, crazy sports mom after work plus the therapist, nurse and caregiver in between all of that. There are days and nights that I cry myself to sleep, maybe from exhaustion or feeling like I've not done enough or perhaps just from guilt.  I feel absolutely guilty some days because I feel that Zan is missing out on lots of things during childhood. We used to be able to go to movies from time to time but now just leaving the house some days is an absolute nightmare.

Zan is the most loving, caring child I know with the biggest heart. He has amazed me through all of this probably more than Haygen. The way he interacts with Haygen is something you can't teach or show a child, it just comes natural. He did play every sport that the YMCA offered for a year or two, but I finally said "Baby, can you pick one sport that you love to play and just play that one?" I felt like a horrible mother asking him that but I had too. I was a complete train wreck.  He said "sure Moma" and he chose baseball. He has played every year since he was 5 and he will soon be 12, so you better believe that when baseball season is near it is his choice whether he plays or not and once he signs up, he has to finish the season because quitting is NOT an option. He is no Chipper Jones but to me he is better than Chipper. He plays with his heart and soul and baseball is the one thing that is "normal" in his childhood. I have missed a few practices and ballgames but not very many. Some of them, I'm there but me and Haygen are watching from the vehicle not because I don't want to get out, its just easier. In the parked vehicle (with the music on) in unfamiliar places is actually calming for Haygen, its sort of like a security place like home is to him. When he has a "meltdown" it could be 5 minutes or 2 hours or longer and its something we try to avoid especially in public. It's very easy for people looking in from the outside to say "All that child needs is discipline" and that used to bother me A LOT!!! But watching a child have a "meltdown" looks a lot like a spoiled little kid just having a tantrum. Seriously, some kids you would never know that they are autistic or a child with special needs just by looking. I will never forget the first day someone made me cry at Wal-Mart, we were looking at air filters of course Haygen was screaming, me and Zan were going on about our business because Haygen screaming is normal to us. This man stopped and said "Can you not control your child?"  this day I was very exhausted and Haygen could not sit up on his own then, he was sitting in the seat of the buggy and I was holding him up by having my arms under his and pushing the buggy by holding the back of the seat. Needless to say we didn't get any air filters. I picked Haygen up out of the buggy got Zan's hand and we left Wal-Mart. The saying "Don't judge others because you have no idea of the path they have been on or the path they are traveling" It's very TRUE.

Describing a meltdown is like a "System Overload" on your computer, say for instance you do things the same way everyday but one day you take a different route to work and all that new information (scenery, sounds etc) is coming back to you so fast that you can't slow it down long enough to process it, so your "computer" shuts down or crashes!!! That's how it feels to Haygen. His brain is the computer and all the information (sounds, smells, textures or just life itself) goes to his brain so fast that he doesn't know what to do with it. The "meltdowns" are his way of saying "STOP" and he needs all the new information given to him slowly and not all at once. Some meltdowns can be violate and some can be just screaming you never know.  I remember giving him a bath awhile back and as soon as I put him in the bathtub he started clawing me trying to get out of the water until eventually he pulled me into the bathtub with him. YES, he's that strong and I think he broke my thumb that day too. Haygen doesn't mean to be violate but things we don't even notice or pay attention to in our daily lives are scary for him. I had no idea what was happening or going on. I didn't know if it was the smell of the soap, the temperature of the water I just didn't know. Eventually, I realized the water was running that day I put him in the bathtub and now the water is ran before I even take him near the bathroom. He loves his baths and don't want to get out most of the time now. Everyday is a learning process not just for Haygen but for me and Zan as well.

This whole journey has changed our lives. We see the world differently. We don't live from day to day, we live from minute to minute. To us tomorrow is the "UNKNOWN" and we face it as it comes. We find humor in everything, we have a lot of fun. We focus on the POSITIVES and not on what we CAN"T do because you will definitely drown in this world if you don't focus on the positive things. People used to ask me "How can you be so happy all the time?" It's not easy by no means but I look at it this way "We didn't choose this life, it was GIVEN to us" so that makes it more special. Not only am I a better mother now, I am a better person over all. I make mistakes everyday but the key is to learn from them. I have found strength that I never knew existed. Patience. Ahh, I never knew someone could have this much patience. Out of all the learning though, I learn the most from my boys and at the end of the day, I realize we don't want to be "normal" because we have enough love, affection and are closer than probably most "normal" families.

Our New Beginning........

When we left Memphis, we left with good news about the test but we were still clueless as to what happened to the normal healthy active little Haygen. It was frustrating but on the other hand it was a relief because all the big tests were normal. We also starting weaning Haygen off the seizure meds and got the feeding tube. (I no longer had to put it through his nose anymore YAY) Since the surgery, when he pulls it out now, I have to put a new "micky" button in the hole in his little stomach and then fill the balloon up with water. NOT FUN but definitely better than the nose.

It had been a few weeks since we started lowering the dosages of his meds and something was different about him. I started noticing his seizures were lowering and he looked SO alert it was like WOW. One day I realized, Oh My Goodness he had had NO SEIZURES. There has never been a day without seizures since he started seizing in February 2008. I'm pretty sure my whole neighborhood heard me that day :) Watching your child or loved one seize non stop on a daily basis takes a tremendous toll on you especially cause there's nothing you can do but hold them, comfort them and love them. Haygen has been seizure free ever since that day.

Then one day I'm almost positive it was August 28, 2010, Haygen's nurse from his school called my office and asked me "Guess who just walked in my office by their self?" and I responded "I have no idea" me and his nurse talked a lot so this wasn't unusual for us. And she said "HAYGEN" yea I think I fell out of my chair pretty sure I did. Haygen walking into her office never crossed my mind because he wasn't showing any signs of really trying to walk. He was crawling some but not pulling up a lot where you would think he was trying too anyway. I was completely shocked. Crying, laughing, thanking God and everything and everyone. So after work this is what I saw..........I didn't know whether to laugh, cry or what cause he still amazes me. :) This was the VERY first time I seen him walk. I went in the school with the video on :)

 

 

Haygen never slowed down either. He was soon running and jumping and to this day in December 2013, he still out runs me. He's a fast little thing too. When we went back to Memphis for our follow-up, the neurologist said 5 words to me MAYBE. He sat there for an hour and half just watching Haygen, he was amazed. He was watching him play, walk, jump, and throw toys. He said "I don't know why he's getting better." I just turned to him and said "I do and its PRAYERS, Lots of answered prayers!!" We have seen some of the best doctors there is and I'm here to tell you God is the "REAL" doctor. Two of the most amazing children's hospitals said he would never walk again. They did all the tests and there was all different types of doctor at each hospitals PLUS the tests were sent to most of the states around the US. There was nothing in the tests indicating he would ever be able too.

Those same 2 children's hospitals also said he wouldn't be able to see again and the neurologist did say at the follow-up appointment in Memphis that Haygen could see something but wasn't sure what or how much he was seeing. Totally different from the blind diagnosis and saying that he can't tell if the light is on or off. I had also forgot to mention that a friend of mine's daughter was having seizures and she had tubes put in her ears and her seizures stopped. I had never heard anything connecting tubes with seizures but I mentioned it to the doctors in Memphis the week we were there and they said that yes sometimes it does help because it takes pressure off of the brain and given Haygen's history with ear infections they also scheduled the appointment at ACH for that as well. We have and will try anything to see if it helps.

So with all this going on there's no way to say that the tubes in his ears stopped his seizures, or getting him completely off all medicine or just getting the feeding tube was the reason he was getting better other than GOD IS IN CONTROL. You just have to give it ALL to him.

Even in darkness, there's ALWAYS........HOPE

"If you've never been through anything, you can't help anyone."  That quote is the reason for my blog, I hope I can help at least one person through this and let them know they are not alone. Even in the darkest hour there is always HOPE!! NEVER GIVE UP!!!

MEMPHIS........Finally

While waiting for April 2010, we were still in and out ER's, doctors offices and ACH. I still love ACH and it's an amazing hospital. I just didn't like Dr House Wannabe :)  When we got to Memphis, I met the neurologist who was in charge of Haygen's study, then after the next 20 doctors I lost count. I just knew they were all meeting at St Jude's at the end of the week to discuss Haygen.

(This was him at ACH before we went to Memphis)(That was the 1st time, I had heard him laugh since February 2008)

They began hooking Haygen up to the video EEG as soon as we arrived in Memphis. A few hours later the neurologist came in and said "I'm not sure exactly what's happening with him but I do know he does not have LGS!!" He said everything Haygen is going through mimics LGS EXCEPT Haygen was continually to decline or regress.  Which he explained that most of the time, children with LGS regress and then stay at level but Haygen keeps regressing.  By the time we got to Memphis, Haygen could not walk, talk, see, lost all of his facial expressions, could not swallow, could not hold his bottle, could not sit up and the list just keeps going. So all week were more tests, genetic testing, missing chromosome's etc etc and of course everything was returning normal except ONE test and that was the big one. Those results were not in and they said the results should be back before the end of the week.

The test was for Rett's (Haygen was 3 at this time) so during this week, they were preparing me for the positive results of the test.  In other words, Haygen would not make it past 4 years old. He was that bad :( That was the longest week of my life and during this week I lost my baby cousin Tanner. He was 17 years old and died in an auto accident.  I was devastated. There was lots of praying, soul searching, you name it and it was done. I was so afraid I wouldn't make it to Natchitoches, LA to tell him goodbye.

It was very late Friday night and the Doctor came to tell me the results of the test were in..........Haygen did NOT have Rett's!! WHAT A MIRACLE!!!! But it was puzzling Doctors because he had been tested for EVERYTHING!! Memphis confirmed ACH and said he would never walk again or see again. They were at a loss as well.  The doctor knew about my cousin and he released us that night and we drove all night stopping just to change clothes then driving on to Natchitoches, LA and got there just in time for Tanner's viewing and funeral. That made me feel better too, just knowing I could say goodbye.

Before releasing us, he said he wanted to try Haygen on a different combination of meds (which I was happy about because that was my main goal to give him a better quality of life) but we first had to wean him off the meds he was on. That process wasn't bad in fact, turned out to be THE BEST THING EVER!!! :) And he called ACH and scheduled surgery for a feeding tube.  They were going to keep us until the following week when someone was available to do the surgery there but he decided against it because he knew we wouldn't make it to my baby cousin's funeral. So during that time after we left until the surgery we had to use the feeding tube through the nose and that was NO FUN!! When Haygen pulled it out, guess who had to re do it?? Yep ME :( When you're a mom or parent to a special needs child you realize you've got Super Powers real fast.

ACH taught me how to insert the feeding tube and this was my 1st time!! :). He wasn't mad at me either :)

They love each other SO much!!! It's a bond that's unbreakable!!!

Searching For Answers........

Although I was on the verge of a serious nervous breakdown after that hospital stay in July 2009, I never gave up HOPE!!

I decided that me and the boys were gonna make the BEST of everyday!!! And that's exactly what
we've done and we still do. We no longer take the little things for granted, like a hug or a kiss or the simple sound of your child saying Moma, or even simply holding your child's hand while walking because all those things can be taken away in ONE second and they were taken from us!! Why? We didn't have a clue but we were determined to enjoy EVERYDAY because we aren't promised tomorrow.

We had several more scares with his seizures since the week long hospital stay in 2009. I had been researching and reading everything I could find on Lennox Gastaut Syndrome (LGS)  But then I started noticing his diapers were dry in the mornings after he woke up and the daycare said he was using it very little during the day. I had an appointment with his new neurologist at Arkansas Children's Hospital (ACH) the following day, he wasn't crying or fussing like it was bothering him at that time so I decided not to carry him to the doctor that day since we were going to ACH the next day. We go to our appointment and the doctor asked if he had been having any other problems, so I told him about Haygen's diapers being dry a lot and his EXACT words were "I'm not a pee doctor!!"  From that moment on, I did not like him!! Of course I knew he wasn't a "pee" doctor but we were at the #1 hospital around and I'm pretty sure there was a "pee" doctor there. We were sent to our regular doctor for that and luckily they were able to see Haygen that same day and was treated for Urinary Tract Infection (UTI).

 

           (These are the scratches)

Later that same night I carried him to our local ER because he had been screaming and clawing his stomach, they immediately sent him by ambulance to ACH. We stayed there and waited for hours and were sent home. They did nothing for him. This happened 2 or 3 more times in the same week and ACH always sent him home without even cathing him. When he scratched his stomach so bad that he was drawing blood and he was rushed by ambulance again to ACH, I refused to leave until they would cath him and tell me what was happening. But while in the ambulance his oxygen level was going down and was put on oxygen. ACH did finally cath him and they got 2-3 diapers full. During that time, they noticed his heart rate was also going down as well as his oxygen. The heart doctor was called in and lots of test were being ran to figure out why his kidneys were shutting down and everything else!! After a couple of days, the heart doctor discovered that Haygen's VNS settings were set way too high. Of course Haygen's neurologist refused to believe he was wrong so the heart doctor adjusted the settings.

(This is actually the night I said I wasn't leaving!! You can't tell he's sick because he was laughing!! )

I started the internet search immediately after that night for a specialist that dealt with these amount of seizures daily and the diagnosis of LGS (Lennox Gastaut Syndrome).  I found LeBonheur Children's Hospital in Memphis. I emailed the hospital explained Haygen's situation and I was immediately contacted. They wanted to meet Haygen, but not for a visit, they wanted him for a whole week. It was scheduled for April 2010.

2009 The Year of Total Darkness

As I said in my last post, 2008 was a tough year for us but it sure didn't prepare us for the struggle we were about to face in 2009.  You know that saying "OMGOSH can things get any worse?!?" The answer is always YES, YES THEY CAN!!! So if you make it through whatever it was that made you ask that question, just thank God for giving you strength to get you through it. I have changed a lot since February 23, 2008, and I've found out more about myself since then than I have my all life. I will elaborate more on that a little later. 

 

Haygen had continued having 20-100 seizures per day and at the last doctors appointment he was scheduled for surgery to have a VNS implanted near his heart. The surgery was scheduled for February 25, 2009, almost a year to the day that all of this began. A VNS (Vagus nerve stimulation) is a technique used to treat epilepsy. It involves implanting a pacemaker-like device that generates pulses of electricity to stimulate the vagus nerve.  This little device is a Godsend!! It truly is and technology is absolutely amazing. It didn't completely stop the seizures however, it did lower the number of the seizures he was having everyday. But there were some days that it didn't help at all.  It takes a while and its more like trial and error to get the settings of the VNS to where they need to be.

 

The VNS was helping Haygen with his seizures but he was still on the meds and by this time the dosage had increased several times since the beginning. He was still having all types of seizures not just one certain type.  There was still lots of ER trips, lots of doctors appointments and lots of sleepless nights. My ZanMan was doing good in school considering all of this and he was enjoying every sport that the YMCA offered and Haygen was right there at every practice and every game (unless we were in the hospital). Zan loves Haygen more than life itself and you can clearly see it in his actions. When it comes to Haygen, he is like the Big Bad Wolf.  He will protect him and make sure he is ok.  At his Christmas school program, one of his classmates saw Haygen and asked Zan "Why don't your brother just die??" when they were behind stage. I didn't know about it until he told me when we got in the vehicle. I could barely understand him because he was crying so hard.  He said, "Moma, they just don't love Haygen like we do and they don't understand that he has feelings too!!" My heart was hurting because at that moment Zan saw the world in a total different light. The next morning I called the school (not to fuss or get anyone in trouble) to tell them what had happened so that maybe they could talk to Zan's classmate and explain to them about his little brother. Its wasn't the child's fault at all they just probably had never been around any special needs children. There's many children and adults that have never been around those with disabilities or special needs and that's why I chose to write this blog to maybe help educate others about them. After I spoke with the school, Zan's teacher asked if I would mind bringing Haygen to Zan's class so that everyone could meet him and see how precious and special he is to me and Zan.  Of course I said yes and the whole class just loved him. Zan has never had anyone else to say anything like that to him again. In fact, I think he's had several to ask where Haygen was if he wasn't with me at the school!! :)  

 

A couple of months had passed since the surgery for the VNS and there had been a little improvement with the seizures but he continued having them everyday. He was not getting any better with the medicines that he was on, so his neurologist wanted to put him in the hospital for a week if not longer.  He wanted to run more tests and observe him more closely because by this time Haygen could no longer walk, talk, sit up, hold his head up, hold his bottle or anything. It was like he had literally became a little vegetable overnight. The doctor scheduled it for the week of July 20-24, 2009 but wanted me to come in to his office a week or maybe 2 weeks before so we could discuss the tests and what they were going to be looking for during that week.

We went to his office the week before and he told me he would not be there when Haygen was going to have all the tests ran. He was moving to Texas because he took a position there to help with children but would be back in a year. He said I had a great doctor that was taking his place and that he had already briefed him about Haygen. I didn't want him to leave but I understood.  He was going to help with some program that Texas has for children and they needed doctors that were willing to come work for free and be involved with research (I can't remember all the details) and I truly admired Haygen's doctor and not just because of that but because he truly cared for each of his patients. To him Haygen was a "mystery" baby and he hated to leave Arkansas Children's Hospital but he felt like this was something he needed to do. I feel like he would have never stopped searching for the answers for Haygen. We sure do miss him cause he was the BEST!!

We got settled in at the hospital and a few hours later we met the new neurologist for the first time, he was from Texas.  It was odd that our doctor left for Texas and was replaced by a doctor from Texas.  He seemed nice. He explained to me again about all the tests and said hopefully we would have answers before we left. A few of the tests results had a came back within a couple of days and of course they were normal but on the 3rd day the doctor came in and told me that Haygen had Lennox Gastaut Syndrome or LGS. LGS is a difficult to treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types; it is often accompanied by developmental delay and psychological and behavioral problems.

Then on the 5th day the doctor said that Haygen was never going to walk again and someone would be there later to measure him for a wheelchair. I started crying but I wasn't hysterical because deep down I had known for awhile that he would eventually be put in a wheelchair and I had already accepted that but it was just that everything was happening so fast.  They weren't quite finished measuring him before someone came from optometry to take him down for his vision tests. As we finished with the tests, the doctor said "he can not tell if the light is on or off" and I just looked at him and he calmly said "Your baby is blind!!" I don't remember exactly what I did at that moment but I remember him leaving the room and it was a little while before he came back.  When he finally came back he brought another specialist with him that ran the tests again and told me the same thing as he had but added that Haygen would NEVER see again. I do believe I had everyone that was in that hospital at that moment crying, even the doctors. It was BAD or I guess I should say that I was bad. My baby being in a wheelchair, I had already accepted but the thought of him being in a wheelchair AND blind was way too much for me to handle in ONE DAY.

After things had settled down a bit, the doctor came in and said that he was releasing Haygen that day because every test that could be ran has been done except one and he was scheduled for it right then.  He said he would have all the discharge papers ready for me to sign when he was finished with the test.  I asked what it was for and he said "His hearing"  I said NO WAY ABSOLUTELY NOT!! You are not going to test his hearing and then tell me he can't hear NO WAY NO SIR!! You can schedule that test for later. We were discharged that evening and Haygen did not have his hearing tested before we left.  I know I couldn't have handled it if they had told me that my baby was deaf on top of everything else that day.

After we were home, I think that was the darkest time of my life, knowing Haygen would never walk again, never see again and not to mention the horrible seizures he was having 24/7 was almost to much for me to handle. It was a NIGHTMARE that never ended and couldn't wake up from but I also had to remain strong for Zan.  I never told him that his Bubba couldn't see, I just said that his Bubba was sick and left it at that.

There were many more trips to the ER after that hospital stay mainly because of the seizures and the severity of them. But then he began not being able to use the bathroom, his diapers were always dry after all day and during the night. This was the beginning of our transition to Memphis.....................

 

The Beginning of Our Journey

It was February 23, 2008 and it was a typical day. Nothing out of the ordinary until, I saw Haygen fall to the floor. His eyes were rolled back and he was so still. I immediately knew something was wrong. A mother always knows when something isn't right. When he began acting like his self again (it was less than 1 min but it felt like an eternity) I picked him up, grabbed his diaper bag and we headed out the door.  I was just driving not quite sure where I was headed but I knew I wasn't carrying him to a local hospital.
 

 

This picture was taken before February 23, 2008.

We ended up at Arkansas Children's Hospital and after hours of observing him in the ER, they decided to send us home. They said he wasn't walking off balance and nothing looked out of the ordinary but if it happened again to bring him back.  I was FURIOUS!! As a mother, you know when something is just not right. The longer we sat there waiting to get our discharge papers, I kept trying to reflect back to when he fell to see if he had done anything different that morning or if in fact, he did trip over a toy or something but he didn't.  I am sure of it.

 

The doctor and nurse came in with the discharge papers and Haygen fell just like he had fell that morning, but this time the doctor witnessed it. Immediately we were admitted and sent to Nero.  They hooked him up to the video EEG (that was a complete nightmare) its very hard to keep a very active toddler from pulling all the wires off of his head.  He was on the video EEG for over a week.

This pic wasn't taken at ACH but that's how he was hooked up to Video EEG

 

As soon as he was on the video EEG, it was very clear to the neurologist, that he was having seizures.  Both times that he had fell, he was very confident to say that those were drop attacks.  Drop attacks (Atonic Seizures) are a type of seizures that are brief (usually less than 15 seconds) consisting of a brief lapse in muscle tone that are caused by temporary altercations in brain function.

 

We also learned from the video EEG that he was having up to 20-40 seizures a day even while sleeping, it also showed that he was having seizures that were not noticeable.  This started the beginning of all kinds of tests known to mankind trying to figure out what was causing seizures. The test were sent to other hospitals all over the US and the results of each test were NORMAL.  He was put on 3 different medications 2 of which were seizure medications.  We were discharged from the hospital on June 4, 2008 with a diagnosis of epilepsy. We didn't stay at home for long and to be honest everything after that just runs together to me it seems like.  We were always in and out of the ER, doctor offices and hospitals.  I was confused, angry, upset and could not comprehend all of it. 

 

This picture was taken at the hospital in April 2008.

In February 2008, Haygen talked, walked, ran, played, fed his self and all the normal things a toddler is suppose to do.  He met all of his milestones on time if not before. By the end of 2008, Haygen had lost all of his motor skills.  I just couldn't understand WHY. I kept blaming myself that I may have missed the signs but I knew I didn't. The only way I can describe it is like this:  It was like I had 2 babies and I lost one of them and I was grieving for that baby. Its hard to explain but its the worst feeling in the world. The hard part of it all was there was no answer as to why this was happening except for one thing a doctor said to me during those first 4 months at Arkansas Children's Hospital.  When all the tests kept coming back normal one doctor asked me for Haygen's original shot records, I was shocked.  I was not aware of all the controversy surrounding vaccinations, I just knew that you took your children to be vaccinated and that was that. I asked the doctor if he thought this could be caused from his vaccinations and his reply was "I can't rule it out and I can't say that it is" and with the look on his face I knew it was from the vaccinations.  I also found out that you do NOT have to vaccinate your children in the state of Arkansas. There is a wavier that you can sign and your children will still be able to attend school. 

At the end of 2008, Haygen was having 20-100 seizures PER DAY!! Yes I said per DAY, and those were the ones we could see!! When we were at home, I had to keep a log of his seizures and that was what my days consisted of!!! That was absolutely horrible watching your child seize and knowing there was nothing that you could do!! :(

After we were released from the hospital in June, I came home on my lunch break one day and the next thing I knew I was waking up in the hospital. I didn't know my mother, my boss, my sister and had NO CLUE that I had 2 boys!!! After a couple of hours, I finally started remembering things and I remembered having my kids but I couldn't remember putting Zan on the school bus or taking Haygen to daycare. The doctor told me that I had had a seizure and my potassium had bottomed out.  Other than my potassium bottoming out he said that stress played a huge role for the reason I had a seizure. So I couldn't even begin to imagine what my poor baby was going through having that many seizures a day. It nearly killed me just thinking about it!! :(

He is having seizures in this video.

 

2008 was a tough year for all of us but it was nothing compared to 2009, it was filled with many many dark days..........