Thursday, May 28, 2009

Along comes baby

During all this, I found out that I was pregnant.

I knew two days before I took the test and I cried for those two day too.

I was terrified that the baby would be born with defects like my oldest son. I was terrified that the baby would have MSPI like my oldest. I worried about being able to afford another child, we were barely getting by then!

I remember calling my little sister crying hysterically the day before I took the test. I remember calling her from a WalMart after I took it in the bathroom there! :) I called her from a payphone and was almost yelling and bawling like a baby, I was terrified about how it would work, how it would all turn out.

I'd tell you how everyone reacted to the pregnancy but, that requires a whole other post! My husband, though shocked, was happy with a bit of fear too. He had the same issues I did but, at least he was happy. I still was not....Now, I'd not trade him for anything in the world and can't imagine a day without him but, then it was too much.

My pregnancy was monitor the whole time and seemed ok the whole way. Except no one could really decide on the age of the baby due to his size. Other than that, everything was running smoothly until one day...

Went to my OBGYN appointment, I had four weeks left to go. I'd been feeling really just sick and very tired, just off really. I'd had some serious contractions a day or so prior to the appointment but, they didn't last, I hadn't lost my mucus plug and it was too soon to worry about it really.

I remember my OBGYN asking me about contractions, making some comment about how really far down the baby was. He was worried about me going into labor soon. I kind of blew him off, even when he gave me a way to get a hold of him after hours!

I came home, was home maybe ten minutes and felt like I was peeing my pants and couldn't stop it. When my mother told me it was my water breaking, I almost laughed. It was too soon and I wasn't ready yet. I hadn't fully prepared my oldest son, I'd not packed a bag yet, I'd not gotten everything ready and the baby....what would this do to him?

This time, things were worse delivery wise for the baby. He turned breach after we were at the hospital! So, when they were trying to get a good hold on him to pull him out of my stomach, they didn't quite get a hold of him right and his first breath was inside of me! He inhaled amniotic fluid and a lot of it, or so I was told.

His APGAR score was 2 out of 10!

He is my tank though, just keeps plowing ahead no matter what, almost always happy. He made it through, without intubation. Which surprised most of the NICU staff. Four days later, he got to go home with me.

Now, real life began.

And along comes TS....

So now, here we are with this beautiful child. He's very intelligent, very motivated to do the things he's currently obsessed with and VERY energetic.

His OCD can run out of control some days and drive everyone in our home CRAZY. If a toy isn't put back in the right spot, exactly the way it was situated before, we didn't take the same way around my van to get to my husband's car or if we didn't take the same way to the store - meltdown town! Meltdown town was beginning to be a ritualistic stop on our daily tour too.

If it wasn't the OCD, it was the SPD. He would be screaming because the lights in the store hurt his eyes, the noise from the TV was too loud or not loud enough, the tag in his clothes was really hurting him, etc.

Those days were hard enough but, then the ADHD symptoms seemed to kick into overdrive and he wasn't quite four yet!

Those days were the worst too. Those days usually accompanied OCD or SPD days but, he'd spend the day running, screaming, talking WAY too loud and WAY too much. Again, most moms will say that all kids do this but, they don't quite get that when us ADHD moms say TOO loud and TOO much, we mean they don't stop talking literally ALL day and they're screaming like they're outside ALL day. It can wear on your nerves daily.

Combine that with with the OCD issues and/or the ADHD issues and you make for a very, very stressful life.

Now, nearly a year later since we first heard ADHD, we were suddenly introduced to a new set of initials.

Since our oldest was two, we'd noticed in passing, these odd repetitive things that he'd do here and there but, a)either thought that the were due to allergies, eczema or OCD and b) because they were so random or so it seemed, didn't think anything of them.

The one we noticed first, looking back, was him constantly rubbing his face on our clothing. Again, can't stress the "constant" in constantly. We noticed this at 2 yrs. along with him continually swiping at his nose daily. Then within the next two years he went through many different repetive behaviors and noises.

He'd do this thing with his legs, when he'd stand still, he'd have to touch one foot to the opposite knee. He'd do it the whole time he'd be standing still. He'd pull at his shirt over and over again. Then it was his pants. Almost like they were too tight or too big but, this was not the case for any of his clothes.

He'd have to run and tap one side of the room, then the other. Then he'd start all over again, he'd do it for about ten minutes before continuing onto something else but, sometimes he'd do this not only dialy, he'd have to do it several times a day.

He'd make this eek eek eek noise when alone in a room. I just assumed that he'd got if off of watching TV, a friend from school or a neighbor child. He was soo busy making soo many noises so often, that I didn't pay too much attention to it. Until one day, his early intervention teacher told me that he was making noises in class a lot. When she would get after him to stop, he'd tell her he wasn't doing anything. After a while, she said that the look on his face convinced her that he didn't have a clue he was doing it.

Then the one that really got my attention and drove me mad - sniffing. I wish I could explain the's not like when someone is sniffing from a cold. It was a hard, continual sniffing. It was maddening when you were alone in a room or car with him. I always had to turn on the music or TV a bit louder than I would've liked because I was afraid I was going to hurt him!

After that he moved on to this blinking thing. That's when I started to pay attention. He was doing it no matter what - stressed, it was worse of course; relaxed and alone, he would still do it! Nothing seemed to set it off and nothing seemed to relieve it.

We go to the doctor's office and go through just the last few repetitive things because I didn't know what exactly he was asking me to think back about until he said Tourette Syndrome.

Of course, I thought to an classmate of mine Jeff. He had TS, one of the severe forms. He would cuss, blink or roll his eyes and slam a leg or something down during a tic. That is what I thought that TS was. I was wrong.

This, my son was what a majority of people with TS are like. Most people never need meds and some even make it through their entire lives and don't even know they have it, if it's milk enough!

The reason being that tics can be anything. They are both complex and simple vocal and motor tics, there are sensory tics and even obsessive compulsive tics. Sometimes they're things that you never think of!

Unfortunately, my son was one of those that needed medication. So, we've started at the beginning, a basic dose of clonidine. We've sinced upped the dosage because it didn't seem to be working but, the side effects are a bit more than I can handle some days.

Tuesday, May 26, 2009

The calm before the storms.

As he grew, he graduated from the early intervention program. He seemed to be so smart, he never practiced standing or walking. He just did it! Literally, one day, he just stood up, all on his own. He never tried to take a step. He'd just stand up, then sit back down.
The same went for walking, never practiced...just one day pulled himself up on my husband's leg and started walking to me!! I cried. I was soo proud of him. He walked everyday after that.

There were the instances where I knew he was brilliant...stacking his blocks in color coordinated towers, lining up his cars by colors too. He never really babbled like most babies do. He just started talking one day and by the time he was a year old, he was talking in two to three word phrases and saying and using correctly over twenty or thirty words!

By the time he was two, he was talking in paragraphs, using words that there was no way he should know, let alone know how to use them correctly! Shortly after his second birthday, he was doing 24 piece puzzles in no time. He was doing them faster than my stepson, who was 8 at the time! He was so astute to, always knew were every piece to every toy went or how to get from one place to another in the car!! I knew he going to be a "perfect" child.

Oh, the humor in this now...

Around this time, we began to notice some odd behaviors. He would hang upside down all day when he could or if we'd let him. If it wasn't that he'd spin ALL day. You know, whenever I say that, most people say, "all kids do that", I just want to scream at them "NO THEY DON'T!!" If you had seen it, you'd understand what I mean by ALL DAY.
He started swiping at his nose constantly or rubbing his face on my shirt constantly. He started repeating things, like "mommy are we going to Maple Street?". What I mean by repeat would be him asking that question every few seconds, regardless of me answering him, ignoring him, etc. He would do this for several minutes sometimes. Other times, he'd repeat words off of TV or from snippets of conversations.

By the time he was 3, his behaviors got worse. He would sit and bang his head on the walls, shortly after 2 yrs. he started licking chair legs, the metal divider between a carpeted room and a wood floor, etc. He would "NEED" to wash his hands several times in a minute, he didn't like getting wet - he'd SCREAM, he couldn't swallow mashed potatoes or any similar substance without choking, he'd run from one end of the house to the other and again, do this all day. When he was doing this things, he didn't want to stop to eat even. He was crashing, banging, jumping, climbing, screaming, hitting or ramming others, he was in constant motion.

It was then, that I began to search out help. I knew something was wrong but, I just didn't know what.

From then until now, we've gone through a myriad of specialists and doctors. One telling us, it's this and not that, another saying it's just this, at the end of this period we had a definitive diagnosis of SPD (sensory processing disorder) and OCD. We were told that he more than likely had ADHD but, was too young to get an official diagnosis but, we were recommended some meds to slow him down!!

So, now what were we left with....our insurance won't pay for OT for SPD, we can't afford it ourselves so, we would do OT with the help of books on SPD and suggestions from the early intervention OT. The OCD, I was told is genetic and that there isn't much to do for it at this stage. So, here we sat for almost a year before the last shoe fell.

At this point, I still had hopes for that perfect child. OCD could be highly motivating and useful in some instances, I have it and at my last job BC (before children), I got six promotions in three months! His SPD didn't come with any real developmental delays like most of the other children I'd heard of so, we were still on least, that's what I had ignorantly thought.

The rest of the beginning

Not quite one month later, I was laughed out of an ER by a doctor who pretty much told me that I was a new, hysterical mother!

When the pediatrican came back into town, he admitted us to a hosptial but, still did not believe me that the membrane or bone had grown back over his nasal airways. After a week and a half he tried to put tubes into his nose. He was turning red trying to get them in. When he realized that he couldn't and removed them, he looked sick.

We were sent back to the other hosptial, where the ONLY specialist in the region did this kind of surgery. This time, to ensure he'd not need another surgery, they removed part of his septum!

He never did need another surgery after that.

About a month after that, he was screaming all the time. I don't mean a colicky baby either. I mean SCREAMING - no breaks. Not naps, playing, cooing, sleeping - NOTHING. He screamed one night from 3:00 to 11:30! My mother thought I was over reacting until she came over one night and saw him screaming, and bunching over. He did this for hours, and for hours I rocked and rocked and rocked him. When she told me that this wasn't right, I just thought, like I had been told, he was colicky or that it was his reflux and his meds weren't working so well. I couldn't bring myself to go there. If I did, I would have to think about how small he was and if I did, I was afraid I'd never stop crying.

The next day, we found blood in his diaper.

Into the hospital again, this time for MSPI - milk, soy protein intolerance and failure to thrive. Basically he could not tolerate ANY milk or soy protein in any manner. We spent almost two weeks in the hospital that time, getting the offending things out of his system and slowing introducing a new, more digested formula in. We also changed his reflux meds too and were put under the care of a GI specialist in this area.

We went home, me a little scared. I knew this wasn't working but, I wanted it to so badly.

Almost a month to the day, I called the doctor crying, he was barely over his birth weight. When he saw him without clothes on, he almost passed out. The specialist that had taken over had never once seen our son in nothing but, a diaper and he never asked to either. The pediatrician was ticked to say the least.

This trip in the hospital lasted two weeks. This was the trip where not only the nurses, and my family thought he'd die but, I did as well. I was told to have him baptized and I was so angry that they told me to. I couldn't face it until one day, during his daily weigh-in, he was then 3, almost 4 months old and only 5 ounces over his birthweight! His skin was hanging off of his body, he couldn't be moved without it hurting him or his bones, he lost the ability to move his arms, legs and hold his head up. He even lost the ability to cry! He would just sort of was awful.

I remember going out in the hall and dropping to my news in tears. The nurses had to hold me up and were so supportive. I know without them, I couldn't have made it through those days.

This time, he was put on an NG feeding tube, with 24 hour feeds. I had to learn to adjust the pump every four hours. I had to learn how to mix the formula (formula meant to be given to literal vegetables, who were usually elderly people.), and how to not only put the tube in and remove the tube but, how to maintain it as well.

It was all a bit more dramatic and heart breaking then but, I can't go into too much detail because it still breaks my heart all that he had to go through. I'll never forget any of it.

By the time he was ten months old, we finally removed his tube! It was great, the freedom. He just needed a bit of OT to get him back up with other babies his age and he was going to be perfect. "Perfect" just like I had planned......

In the beginning

So, I guess I should start at the beginning.

I remember being pregnant, thinking "my son won't be one of "those" kids, my son will be perfect. He'll be super intelligent, kind, he'll mind his mother and father. Everyone will be so jealous of how well behaved he is.
He wouldn't have to be a star athlete but, I could live with that. He wouldn't have to be the brainiac either just as long as he was one or the other. Either way he'd be "perfect".

I imagine someone upstairs looking down and hysterically laughing at all my plans. All my judgements of other mothers and children that I'd so rashly made. Oh, they must have had a good laugh over me.

About five months in my pregnancy, I knew something was wrong. So, did my doctors. I remember at one point, I think I was somewhere between 24 weeks and 30, when they measured my uterus, I measured 42 weeks pregnant! My husband still jokes that I looked something like Kate, from John and Kate the TV show. I remember people asking me how many babies I was having.

I had polyhydramneous, which is extra water. In my case, it was one of the worse cases they'd ever seen. Apparently, no one told me this though, it means that there is a birth defect somewhere.

When my oldest was born, he was purple. Not purple like newborn baby purple, shortly after they cut the cord, and took him to be cleaned off, he turned purple. When they brought him back over to the table, where I was hemmaring (sp?), I noticed it but, was told that he was just cold.

An hour later, they couldn't get him to breathe and could not get a tube down his nose or esophagus to clear his airways!

Needless to say, something was really wrong. Later that evening they told me that my newborn would need surgery. NOTHING can prepare you to hear that, absolutely nothing.

Long story short, he had surgery. Only, it took place at a different hospital. One across town luckily and I had begged and begged my OBGYN to let me go extremely early so that I could go be with him. So, less than 36 hours after a surgery, where I apparently almost died from loss of blood, I was released with strict rules. Rules that I had no intention of following...I was going to be with my baby.

The day of the surgery, I was told that there were four risks involved with his surgery. One - brain damage due to where his nasal blockage was, Two - blindness, again due to were the blockage was, Three - anethestia and Four - that one and/or both blockages (both membrane and bone) could grow back and a repeat surgery would be needed.

The surgery took ok and he came out of it ok. I remember going to the NICU and asking a nurse if that was my baby! I'd never seen him without tubes, wires and tape all over his face and mouth. He was beautiful. We took him home nine days after he was born with high hopes.