Will's Strengths

Hello! Today I'm going to write a positive post... with likely tons of exclamation points!!!!!!!!! My dad said my blog was a little depressing and another friend said she made sure to grab the tissues before settling down to read it. I am sorry for being so negative. It feels good to talk about all that stuff, though, as it is in my mind and sometimes I look at our situation as a real tragedy. This is no tragedy, though. This is a good life and we have it better than many people of the world. I really don't know true suffering compared to some. This is a truth in my life that I always hold on to. I know we have it good. If you know me in person, you know that I always try to keep things upbeat. I don't like to rock the boat much and enjoy laughing and making people feel good. Sometimes the negative feelings get buried inside and I think it has been really helpful to write those feelings out and now I can go back to them whenever I feel the need.

So let me tell you about some of the incredible things about Will!

Laughter and smiling: My very most favorite thing about Will is his ability to find humor in the smallest things. I can say a phrase in a certain way, like "THIS little piggy..." and he cracks up. Will has no filter on his feelings and emotions like the majority of us do and when he is happy, you know it's an undeniable, genuine happiness. Along with his laughter comes his amazing smile. He has a bright-eyed, super sunshiny smile. I love it.

Will laughing with Grandma

Ball Skills: Will has a really good attention span when it comes to doing things he enjoys. This kid probably spends 60% of his awake time playing with bouncy balls of all shapes and sizes. He will play with a ball alone or with other people. He is extremely motivated by balls! You should see him catch a ball. It is amazing. I will try to get a good video of him doing it. He also likes to sit down with a small bouncy ball and listen to it hit the ground with the different ways he drops it. He turns his ear towards the ball and concentrates on the sound. I know I kind of put down the doctor in a previous post who told me to get Will into the Special Olympics, but if he continues on with his amazing ball work, I am really thinking about getting him involved with them. He could be an Olympian! I can see it now.

USA! USA!

Easily Entertained: Another great thing about Will is that he is rather easily entertained. If we are in a safe kind of environment and one that he feels comfortable in, like a house, the park, or someone's backyard, he is usually a really good boy. I really feel blessed that Will can entertain himself so well. It lets me relax and enjoy the company of friends and family more. It is a different story at home, however. We spend so much time here and I think he gets bored or worried I'm going away if I am moving about the house trying to get things done. But if you were ever to invite us over to your house, Will would probably be an angel and enjoy climbing your stairs, opening your doors, bouncing your balls, and playing in your yard. He also doesn't mess with people's breakable things. It is really nice.

"The way this sand falls is fascinating."

"This water feels good."

"This metal is fun to stomp on and makes a great noise."

"These bubbles are supreme!"

Intelligence: Remember how I told you the doctors down at Children's thought Will has an intellectual disability? Well, I want to dispute that claim right here. I think Will is much more intelligent than he is able to show. He doesn't understand or have particular interest in many things, but he is smart. For example, one day I opened the refrigerator and found a bar of soap where the sticks of butter are. I thought it was Colin playing a joke on me, but he denied it. Then I realized it was Will. He was playing in the bathroom and took a wrapped bar of soap out of the cabinet. He then took it to the kitchen and matched it up with the butter. Isn't that something? To me it was incredible that he made that association. A bar of soap is kind of similar to a cold stick of butter. I told some of his therapists this, but they didn't find this as profound as I did I guess. This to me is a sign of intelligence.

Another example is Will will sometimes take a frying pan out of the cupboard and set it up on the stove top right where we normally cook. He will take a spoon out from the drawer and add it to the pan. He is really observing things more than is apparent at first.

Will is really starting to understand language a lot more than ever. He is definitely delayed in this category, but in the last 6 months he is starting to understand things more. I can ask him "would you like pancakes?" and he gets so excited and leads me to the kitchen to make his favorite food. I tell him, let's put on your shoes and he stops and lifts his feet and lets me put his shoes on. We can tell Will that we are getting ready to go somewhere and that he needs to get into the car, and he runs right for the door and heads outside.

Will doesn't watch TV or play video games. I mean, he is only 3; but still, TV has never interested him (other than one particular music DVD I played at least a couple hundred times for him... it was nice while it lasted)! I said to Mick the other day how I feel Will is probably going to be more well-rounded and experienced than Colin due to the fact that he has very little interest in electronics. He is learning so much through his environment. It would be really nice for a break if I could sit him down to watch a little TV, especially some of the Signing Times videos, but so far that's not happening. I'm okay with that.

Animal Love: Will loves our pets. He particularly likes our dog Lucy. When he is feeling like cuddling, he will cuddle right up with her and suck his thumb. She doesn't mind. I want to get Will a service dog someday if I can figure out how to go about that. I love animals too and am happy he likes ours so much.

Will also loves our new kitty, Ricola

People Love: Will loves his peeps. He particularly adores his dad and his grandpas. He is also starting to like his grandmas and my sister more too. The more time we spend with certain people, the more Will is comfortable with them. He has a tendency to like men more than woman, although I am the number one person in his life. Maybe I am enough as I am the ultimate woman! Ha ha. Just kidding. I'm just his mommy and I'm glad he loves me and trusts in me so much.

Mick reading to Will

Grandpa dancing with Will and Mason (my nephew)

Enjoyment of Praise: A particularly-nice thing that makes therapy a lot easier is that Will enjoys being praised for what he is doing. He loves when we (therapists included) clap for him after he accomplishes something. I hope this lasts for a long time as it is an easy thing to do and he is really motivated by it. He also likes to look for recognition after doing something. My friend was over the other day with her kids and Will went flying down the slide like a pro and he looked at her and waited for her to acknowledge what he had just done. He does this kind of thing all the time. It is really an endearing quality and I am told a good sign in his development.

There are many other examples I could get into, but I think I will save them for another post sometime. These are the main ones for now.

I am learning to work with Will more effectively and take him to do the things he enjoys rather than do things that upset him. I always end up pushing him a little farther than he is comfortable with, but I hope it makes a difference someday and doesn't have a negative effect. It isn't bad to push him, though. And I'll tell you, doing the things he loves does some days become tedious. Sometimes I just want to do something different and exciting! I mean, I don't particularly enjoy standing out in the hot sun watching Will go up and down the slide 40 times, but I stay there because he is happy and is working on his skills. 

The Challenging World of Sensory Processing Disorder

My cute little baby Will around the age of 12 months was starting to show some significant signs of sensory processing disorder (SPD), although I didn't know what this was at the time. One of the first things I noticed was when we did parent-baby swimming lessons he would crunch up into a little ball and cling to me for dear life when we got him in the water. He didn't enjoy one minute of swimming lessons. It was sad because I think learning to swim is important and I wanted him to enjoy it as much as Colin did. These days Will is starting to be okay with getting in the water and playing a little. He LOVES the hot tub so much that he pulls me there when he sees it.

Sensory processing disorder is defined as a neurological disorder where a person's brain cannot organize and integrate certain sensations from the body's five sensory systems in a normal way. SPD is not an officially-recognized medical diagnosis; but let me tell you, it is very real and it is horrible. It rules every single minute of Will's life... and mine when he's there. It is like a ball and chain that never gets taken off. I have noticed in the last 6 months or so that Will is starting to cope with some things better and perhaps his brain is learning to work around some of his issues, but it's still bad. Some days are worse than others and new things are now bothering him that never were a problem before. 

Children with developmental delays often have some kind of sensory needs. Many average people also have minor sensory issues. For instance, ever since I was in elementary school I cannot stand the feeling of my hands after getting them wet or washing them. I learned to deal with this in school by putting Elmer's glue on my hands! And when I got older I learned it is acceptable to carry lotion with me everywhere.

When Will saw his first occupational therapist (OT), she told me about SPD. Will's young brain is not able to handle all the sensory input. Our early examples of issues for him included being deathly afraid of loud noises like pots and pans, hammering, dogs barking, and babies crying. He didn't react like other babies do. It was (and still is) more like clawing and biting and screaming and it takes a considerable amount of time and work to come down from the terror. Another problem for him that is still a problem to this day and I think is getting worse is that he has a fear of certain enclosed places like elevators, bridges, tunnels, and even the outdoor areas at stores like Home Depot or Wal-Mart. It doesn't matter if he's walking, in a cart, in the car, or in his stroller. There is something about these kinds of spaces that terrify him. I took Will to a local splash park the other day, a place we had been to many times before and never bothered him, and part of the toddler playground and sandbox has a cover over it. He refused to go into this area, which would have been lovely in the shade on a hot day. He scratched me and bit me and screamed if I took him anywhere near it.

What makes this so hard is these are activities I enjoy taking both my kids to and Colin suffers as well. This makes me really sad. It's sad to see the terror in my child's eyes and listen to him scream over an activity so many children enjoy. This happens all the time, though, and Colin and I are growing more accustomed to it.

The first OT started working with Will's tactile defensiveness in his hands. I think this has pretty much resolved and wasn't really a big issue for him in the first place. His senses that are off are sight, hearing, and touch. The touch issues involve more of him being defensive with anything to do with his feet and his head, but not his mouth. He dislikes having his hair washed. I just do it as fast as I can and try to distract him with something. He absolutely cannot stand having his hair cut. I get anxious just thinking about it now! It takes Mick and I both holding him down to shear it as quick as we can. I tried growing his hair out for a while, but then it gets on his ears and he's always messing with it. And of course it gets dirty with food and such and I have to wash it even more... Plus he's so cute with a fresh haircut!

I think OT's have an interesting job. They use different methods to help develop daily living skills. They also are the ones who help Will with his SPD. There are a lot of different treatment ideas. It's hard for me to know where to begin. We hope someday we will find something that really works for Will. We started out doing brushing, which means every 2 hours or so you take a little brush and brush his skin with deep pressure and then do joint compressions. It is a big time commitment, but I think it helped. He hasn't really needed brushing as much in the last year, although I'm thinking about starting it back up again. I will do anything to help him be happy. Everyone wins when Will is happy!

There are tons and tons of other sensory activities. Some that Will likes are carrying around heavy objects (like plastic gallon jugs filled with water), jumping on the trampoline, swinging, listening to calming classical music, beating on the piano keyboard, chewing on a toothbrush, pushing a grocery cart around, spinning around to music, getting an essential oil massage from me, and looking at and feeling his textured baby books.

Another big problem involving Will's SPD is his ability to fall sleep and stay asleep. He is a light sleeper and every little noise wakes him up. It is really frustrating. I keep a fan or white noise on in his room and also have a fan running outside his room next to his door. During his nap, if I'm lucky enough to get him to nap, I go about the house "shushing" everybody and sending them outside to play so they don't wake Will. He also always wakes up with the sun and won't fall asleep in the summer until the sun is down, even if he's really tired. The last time Will slept anywhere overnight but at home was when he was 2 months old at my brother's wedding in South Carolina. He is almost 3-1/2 and we haven't gone on any trips with him. That's a whole other thing I could get into: Vacations. Maybe I'll write about that later. But for now, there's no way I would take him overnight anywhere. When he was a baby I would bring Will into bed next to me in the early mornings, cuddled right up next to my chest and we would sleep together. I thought then that he would be my little sleeping buddy for a long time. Nope! Even when he was sick with the fevers I couldn't get him to cuddle and sleep with me anymore.

This is getting long-winded and I thank you for sticking with me if you are still reading. There is so much to talk about regarding Will's SPD!

Will can scream at the top of his lungs the loudest, most ear-splitting shrieks you have ever heard. He can't regulate the loudness of his voice. I believe I will probably have some sort of hearing loss someday due to his screaming in my ears if I'm not far enough away. It gets so loud that I will have a ringing in my ears afterwards. And this happens many times throughout the day for various reasons. I bought a pair of noise-cancelling headphones for Will to help him deal with loud noises, but I ended up giving them to Colin so that he could protect his ears when things are getting bad with Will. Will wouldn't let me put them on his ears anyway. Colin some days says to me, "I can't handle all this screaming!" I sometimes even may end up putting earplugs in my ears if the screaming isn't stopping. They are usually in my pocket. It is no bueno.

It used to really bother me when Colin or Will would cry. I would do what I could to stop the crying and make the kid happy again. But now I've grown so accustomed to the screaming that it's just part of the background noise. I usually try my tricks to comfort Will, but sometimes they just don't work and I really don't know what's bothering him. I wish so badly I could get into his head and feel what life feels like to him. I have a feeling it looks something like this, but spiraling and spinning and making loud mechanical noises:

I wouldn't wish SPD on my worst enemy. It is a terrible thing to live with. Will tends to get in moods for days where he just can't break free from the monsters that he lives with. It is so hard for him and I feel for him so much. I wish he didn't have to experience any of this. I really just want him to be happy.

I know it's always better to be positive and not dwell on the negative things. There are some days, however, that I worry for all of our futures. I worry about what Will will be like when he's bigger and I won't be able to stop him from biting, scratching, and pinching me. What will we do when he is a big teenager? There are times when I am so jumpy that I flinch when someone comes close to me. I'm worried it's Will coming up to bite me from behind. I fear that this could be the thing that breaks me.

I can say that most of Will's anger is taken out on me and Mick. He bit one little girl once on the hand who was getting too close into his personal space and that was the only time. He has gone after Colin a few times, but it was never anything too bad and Colin knows to keep his distance when Will is in a particularly bad mood. I am hopeful more therapy and school will help... I think they will.

I don't write this for anyone to feel sorry for me. This is my child and this is my life. I will do whatever I can to make it better for him. I really hope to make people understand that these things are out there and happening to countless families. I would like to inspire compassion and empathy.

Arnold-Chiari Malformation

The routine brain MRI Will had done showed an Arnold-Chiari Type I malformation. Ever heard of this? I hadn't heard of this. Initially the developmental pediatrician called me with the results and said she didn't believe it was of significance but asked us to see a neurosurgeon so he could explain it and take a good look. That appointment was two weeks out and I had plenty of time to use my Web-MD mom-ster skills and I immersed myself in learning about this condition. For those two weeks I had a lot of hope and was so sure this surgeon was going to tell us our son would be a candidate for surgery and this could be the answer to all his mysteries. That's not how it went down. Not at all.

First, what is a Chiari malformation? It is a disorder where the cerebellum, the lower part of the brain, protrudes out of the skull and into the spinal canal. Here's a diagram:

There can be many, many different symptoms associated with Chiari. The main symptoms are pain and headaches. We were told as many as 1 out of 3 people have a Chiari malformation and most do not know they have it. It is a fairly-common condition. But for the adults and children who do have symptoms, their lives are a living hell. I also read on one parent's blog a list of possible issues associated with Chiari and this includes (but not limited to): Visual disturbances, impaired fine motor skills, clumsiness, poor motor skills, insomnia, intolerance to loud sounds, difficulty swallowing, poor depth perception, unusual pupil size, poor muscle tone, and developmental delays. I read this list and you can imagine how I felt. I was just so sure getting this thing taken care of would be the answer! I jumped-the-gun way too soon and told everyone who would listen I thought this was exactly what Will's problem was.  

I'll just show myself out!

People who are candidates for the surgery I speak of can have a decompression surgery. It is a craniotomy which is supposed to make room for the protruding cerebellum and would relieve pressure on the brain as well as restore normal flow of cerebrospinal fluid.

We met with the neurosurgeon and he blatantly said this was not causing Will's issues. We had a few questions for him, but he didn't really feel anything as drastic as surgery would make any difference. The one thing that bothered me about this was he asked if Will has headaches. Will doesn't talk and doesn't understand what we are asking him if he's in pain. He can't point to his head and say or signal in some way that he has a headache. He at this point was starting up with his behavior issues and I said, well he's really unhappy most of the time. I had tons of examples, but this doctor just didn't agree. I can't make a doctor agree to brain surgery!

Sometimes people with Chiari can have a condition called Syringomyelia. This is a collection of the abnormally-flowing fluid that is building up because of the Chiari and creates a cavity of fluid called a syrinx down into the spine and can cause many problems including (but, again, not limited to) pain in the extremities, numbness, weakness, loss of normal gait, and dizziness. This is a really serious condition and tends to get worse over time. The neurosurgeon ordered another MRI of Will's spine this time to look for a syrinx and, if there was one, he would revist the surgery idea. Will didn't have one. Here's a pic of a syrinx:

This doctor told us to follow up in a year with another MRI to see if anything had changed. That's coming up towards the end of this year. He essentially told us if there was no change, then not to pursue this further. I guarantee I will fight to have this condition monitored at least every couple of years... And if there is any indication of pain, we will go back immediately.

The back of a child's head after decompression surgery.

We also ended up seeing a neurologist to talk about Will overall and also the Chiari malformation. She agreed with the neurosurgeon, but also did a wonderful job explaining things to me in a way I could understand.

We decided to also get a second opinion from a different neurosurgeon from a different hospital. I was starting to be suspicious that maybe Children's Hospital had some kind of standard thing they told parents about Chiari malformations and I really just wanted to see what someone not associated with them thought. This isn't really rational thinking, but we did it to cover all bases. This new neurosurgeon was a great lady and she is famous in the community of neurosurgery. I appreciated her taking the time to talk with us and look at Will's MRIs. In the end, she agreed with the other doctors. We decided at that point to take a break from all this Chiari business and revamp our focus more on helping Will through his various therapies. I think we made the right decision.

I still have a bit of a fire under my feet, though, about Chiari. I joined several message boards and groups on Facebook for families affected by Chiari. I will tell you there are some really incredible families, amazing warrior mothers in particular, and super-hero children out there. Some of these children have had multiple brain surgeries sometimes before they are even 2 or 3 years old and are fighting for their lives... They live with pain and endure many visits to various specialists and doctors and therapists. The mothers are some of the smartest and most educated people I've ever encountered and they always are willing to answer questions or lend an ear. I feel very lucky to know them. It feels good to be informed of something I never knew existed before. It also makes me feel blessed for all the things we really do have.

The Big Evaluation

Nearly a year ago now Will had an evaluation done at Children's Hospital in Aurora, Colorado by a developmental pediatrician and her team of therapists and a psychologist. They all looked at him and asked him to do things. The only thing Will wanted to do was open and close the various doors in the unit. It was so hard to get him to do anything. We had to tell them that he can do more than he is showing you now. And they had a zillion and one questions all about everything from our family history to pregnancy history to Will's history. It was an exhausting day. It feels really strange to have people poking and prodding your child as if he were a specimen to behold. I had to remember the goal was to find out what exactly is going on with him and if there is anything else we should be doing, and I guess this is how it's done.

So why did we want to have Will evaluated? Mainly I really wanted to know what is going on with him. He is in a gray area for many things. He could have this, or he does this sometimes, etc. I thought maybe he has some kind of brain damage or something. Or maybe there is a genetic condition. I had read tons of times about how early intervention is key and I wanted to make sure there wasn't something we were missing. I'm one of those people who really want to know I guess. I just want to know! It may not even change anything, but I just can't stand to leave a stone left unturned.

The results of this evaluation were official diagnoses of childhood apraxia of speech, global developmental delay, intellectual disability (formerly known as mental retardation). I couldn't stand that last one. It's as if they were telling me my son would never amount to much. They told us to get him into the Special Olympics. They gave me a handout with this poem called "Welcome to Holland." If you have time, read it here. It's a nice sentiment and all, but not really comforting at the time. I suppose it may be more meaningful down the road. I still don't really believe my son has an intellectual disability... or might not be very severe... or maybe he will grow out of it. He is very far behind his peers at this point, but I see intelligence in his face. I see a boy who can't make his body do the things he wants it to.

From this evaluation Will was referred to several different doctors and tests. We spent a good deal of time in Aurora over the fall and winter. He was ordered evaluations by Genetics, Ophthalmology, and Neurology. They ordered a full body bone scan, front and back; and a brain MRI to look for anything unusual. He also had urine and blood work done for a metabolic panel.

The Genetics evaluation was the one I was most looking forward to. They dissect your child and lives even deeper, but it's nice to see actual results in the end. I found it funny that they said he had slight dysmorphic facial features, mainly his big smile. I wanted to ask, "well have you seen his dad or his brother?" All three have that same large smile! -Same thing with his tall, lanky body. Genetics ordered a microarray of his DNA and we waited and waited for 5 months for the results. At this point I was searching for every possible genetic condition that he could possibly fit into. I made myself batty waiting. I thought it was taking so long because they were examining it even deeper. I didn't really understand much about genetic testing at the time and I honestly still don't. It turned out the results were "lost in the mail" for a couple of those months. Nice! I actually asked Will's usual pediatrician if he had gotten anything from them and he was the one who told me they found no concerning findings. The doc was looking on his little computer trying to tell me what everything means. It was kinda funny. I did end up getting the official report that went into greater detail. I'm glad to know he doesn't have a genetic disorder. However, that leaves even more unknown.

Will saw an ophthalmologist from Children's who had an amazing bedside manner. I loved that old dude! My mom came with us to that appointment and I think the doc enjoyed that. Will's eyes looked normal. I was worried about Will's eyes because his pupils tend to be really large while everyone else in the room's look the same. There was no explanation for this and, in fact, they were normal size and reacted perfectly during the exam, of course.

The worst part of this whole workup was the bone scan. I couldn't stay in the room for this. Will hates being confined or held down in any way. He screamed bloody murder for a good 20 minutes while the techs got it done. It was ridiculous. I was crying in the hallway by the time it was over. When the lead tech came out to tell us it was over, all four people in there were sweating and did not look happy. This leads me to wonder about post-traumatic stress. Why does Will scream like that when anyone unfamiliar comes close? Why will he not lay flat on his back? Why will he not let me cut his hair without throwing a raving tantrum? Why does it take three people to hold him down to cut his toenails? A lot of this has to do with his monster sensory processing disorder, I'm sure. I hope all these things aren't going to cause some bad problems for him as he gets older. I think he feels the loss of control greatly. He doesn't understand why we are doing this to him. We aren't trying to hurt him.

Finally, Will had the brain MRI under sedation. This showed two things of note: 1) An old brain bleed; and 2) A Chiari I malformation. The brain bleed looked old, something that happened during birth or right after birth and was punctate. I have no clue as to how this happened. It isn't in a region of the brain that controls speech or development and the neurologist was not concerned. It is yet another mystery. Now, the Chiari malformation I can write much more about.... so I'm going to do that in my next post. It's a complicated and sometimes controversial condition. A link to some general info is here to get you started if you're interested.

PFAPA Syndrome and Outpatient Surgery

Before I finally begin talking about Will's Children's evaluation, I wanted to tell you about a significant piece of Will's medical history. Around 14 months old Will started to get sick as if he had a cold without real cold symptoms. He was also teething and cutting those teeth really bothered him. He was always covered in drool up until around 2-1/2 when the last ones FINALLY came in. I thought the kid would never stop teething. It was just the normal time frame, but it seemed much longer.

So he started to get sick with a mystery illness. He would get a high fever for a few days and be really unhappy. I remember him worming along the floor with his butt in the air, drool pouring out of his mouth and whining. I would take him to the doctor and he would tell me it's a viral illness. "Has he been sick recently?" "Uh no, not really." It seemed like his drooling would get worse around this time and everyone always blamed it on teething, including myself. With his sensory issues, being sick is a different ordeal for Will than it is for your average kid. He won't just lay down and rest and watch TV. He doesn't know what to do with himself. He doesn't want to be held; he doesn't want to be put down; he doesn't want to eat a thing; he sleeps restlessly.

As time went on these fevers and pediatrician visits were becoming more regular, like once a month. It is very hard to examine Will, even back when he was a tiny guy. The doctor would take a quick look in his ears and see nothing. He would try to get a good look at his throat during all the screaming and squirming. He might see a slight redness back there. Will would present with a high-grade fever, up to 104 to 105. He scared me to death. I would be up all night with him making sure he wasn't having a febrile seizure or possibly just die in his bed. Pretty dramatic, but that's how it was. He would wake up many times in the night with the fever and I would give him Tylenol or Motrin around the clock. It would bring the fever down a tad and he would sleep some. His neck also got very tight feeling and you could see his glands bulging out. After 3 days the fever would disappear and he was normal again... until the next time. Towards the end of this illness he was getting the fever exactly every 21 days. I would mark the calendar to make sure I didn't schedule anything during this time, and sure enough, the fever would come.

Finally 6 months into this or so the doctor dug into his volumes of knowledge and told me about a condition called PFAPA syndrome. This stands for periodic fever, aphthous stomatitis, pharyngitis and adenitis. The doc had only known of one other child in their practice who had this. He wanted us to go see an infectious disease doctor and get this whole workup done. He also fatefully and thankfully sent us to an ENT right here in town. I read several stories online about how a tonsilectomy and adeniodectomy had a 90% cure rate for this peculiar condition. It started somewhere in the tonsils and caused the fever. I really don't know why it is cyclic. There honestly isn't very much information about this online.

The ENT agreed to do a T&A and threw in some PE tubes (due to his speech delay) for the full-plate special. I didn't even bother taking Will down to Children's to see Infectious Disease. I just wanted to get those tonsils out of there and wanted him to be better. The feeling of helplessness was overwhelming. I wanted to help my boy so bad. It was so hard to watch him with these fevers, caterpillaring across the floor, flopping around, drooling. Not to mention I also really wanted to get some regular sleep again. I hadn't slept through the night since my mid-pregnancy with him. If you know me, you know I need lots of sleep to be happy. I can't get by on 6 or 7 hours. I'm talking 8 at the least, 9 at the most perfect. I'm still working on this goal becoming a regular kinda thing.

Anywho, after suffering straight through the holidays with fevers while waiting for the doctor to be back in the office and have an opening for surgery, Will had his outpatient surgery at 21 months old. He did amazingly and bounced back quick. It was great! I watched the calendar and waited for his next fever due date... and it didn't happen! He is 18 months out from surgery now and no high fever has ever again occurred. This awful thing is behind us now and I hope to never see it ever again.

Can you imagine all these fevers might have stunted his early development? They didn't help anyway. I held onto hope for a good year that he would start catching up. He hasn't yet, but that's okay.

Why do all these things keep happening to Will? Is it somehow connected?

The Aftermath From Tragedy and New Life

Losing the baby was bad. Little by little after a time I was able to be a form of happy again. Yet, I was obsessed with the idea that I did something wrong when pregnant. I had a whole list of things I thought I should or shouldn't have done that I brought to the doctor afterwards, including painting the kitchen and refinishing an old dresser. I was sure the paint fumes caused the birth defect. The doctor reassured me as best she could. I am not like this today. I know things happened and I don't know why. I had the best of intentions for my baby girl.

I also wanted to be pregnant again. I wasn't going to give up on having a baby. I waited as long as the doctor told me to and diligently kept my environment and consumption clean and straight. I took the prenatal vitamins religiously. I also loathed seeing happy people with beautiful babies. I was so incredibly jealous and saddened by them. I was just in a strange place in my mind and I was lonely for something missing.

I became pregnant in spring 2007 with my little angel Colin. As I said previously, I was a nervous wreck. I wouldn't allow myself to be happy until my early ultrasound in Denver with the high-risk OB at 16 weeks when we were able to see how the baby's heart looked and other systems. Well, he was perfect. He was handsome and had a cute little nose already. Time to lighten up here!

A hilarious thing we learned was that the doctor told us he thought it was a girl. The genitals weren't really formed yet to get a good look, but he was sure it was a girl. So we went home happy and more relaxed. I started to bust out all my girl stuff I'd been saving. I hung up clothes. I was tired of feeling awful and ready to start again.

At the 20-week ultrasound we were informed that this was indeed a boy. A boy! A boy?! I called my friend Theresa giddy and I think she thought I was nuts. She said "are you okay?" It was great. I gave my sister back all the little girl things she gave me and went shopping. I have his first little outfit still.

I really was happy the rest of my pregnancy. I relaxed and took it easy. I ate like I was starving and felt pretty great. I lived through the acid reflux and had a fun baby shower.

On Christmas Eve I went into labor. My family spent Christmas Day by the phone waiting to hear the news. They all came to the hospital Christmas night and waited. And around 10 o'clock Colin was born 3 weeks early at 8 lbs 10 oz. He was healthy and perfect. He was the best Christmas gift I will ever get and I was so happy. I was a nervous new mom about nursing and all that stuff. But I was so happy he was here I could just burst.

We brought him home to his little jungle nursery and I sat with him and fed him and I remember crying, "I'm so happy you are here little boy." I smothered him with all my love and he took a heavy burden from me.

Colin is my little angel. He's 5-1/2 now and still a sweet little boy. I may spoil him and give into him often, but I just can't help it. He is the light of my life. On days when I am feeling really down about Will and all the screaming and crying and biting we endure, when I am desperate enough to think, "wow, I don't want to do this anymore," I think of Colin and those thoughts erase in an instant.

Colin is smart. He has an amazing gift with words. He said his first word "doggie" at 9 months. I have a video of him around 17 months and he is telling me about a "yellow hose" in the back yard. It is adorable. He understands so much. He understands the meaning behind the meaning in our language. He can tell jokes. He remembers the most obscure words he hears and uses them in context. He is really the polar opposite of Will when it comes to language.

Colin and I spent nearly every waking and sleeping moment together up until Will was born. Colin loved his dad, but he was mama's boy. This is different nowadays. He would way rather spend time with his cool dad than me, but I know he loves me. He is a great kid and I value our time together.

The Old Me and the New Me - Heartbreak of Lost Baby

I have been anxious to write this post for a long time. I've written it many times in my head. I know I said I would write about Will's Children's Hospital Evaluation next, but I really needed to do this first.

Mick and I met and fell in love in 2001 when I was 21. He was one of the gentlest men I'd ever met, despite his tough exterior. We had so much fun those first years being together. We had tons of things in common and he always treated me well. We worked together on our goals. We bought a house together a year after meeting. I was in college still but I needed a stable person in my life. I was a fish out of water in the real world making some poor choices. I am really glad I met him when I did and I loved him from our first date.

In 2004 we got engaged and married. By that time I was really ready to be married. I had 6 months left of the college courses I was taking and was ready to get a permanent job and settle down for reals. I wanted to have a baby too. My sister had my niece then and I thought she was the best thing ever. I couldn't wait to have my own baby. We waited until I finished my classes and got a job. We waited a little longer until my health insurance kicked in.

I got pregnant in 2006. I was on cloud nine with the idea of being pregnant. It was finally my turn! I really was so happy. I did, however, have horrible morning sickness... or round-the-clock sickness is more like it. My stomach was doing me no favors. I was weak. I was hot. I just never felt very well. My hips ached so bad. I still feel it sometimes like a phantom pain in my hips. I did end up feeling better into the 2nd trimester and was starting to show. I was getting pretty happy and excited. I started collecting baby items. Mick and I even took a little road trip. We had a lovely time together. It was a nice trip, but when I look back at those pictures it is very painful. They are in a box in the back of my closet. That was the last time I was truly my old self. Look how happy I was. Not a real care in the world. I was untouchable and nothing truly tragic had ever really happened to me.

My 1st ultrasound at 20 weeks changed everything. I get a sinking sensation even writing it now. The tech seemed to be spending an awful long time looking at my baby. She did inform us it was a girl. I was giddy for a moment. She told me "have fun shopping." Umm okay, thanks lady. We met the doctor afterward. It was the first time I had seen the actual doctor at the OB office. Before it was the PA and nurse. She didn't know me. I didn't know her. She told us our baby has "a very concerning finding." The way she said it, I cringe. I can imagine us sitting there all bubbly and excited and she has to tell us something horrible.

She said our baby has a heart defect called hypoplastic left heart syndrome (HLHS). Half of the baby's heart didn't grow; her heart, a vital organ. She told us what it meant. The baby will develop fine in the womb but as soon as she is born her heart will not pump blood properly. She would need surgery at the moment of birth. I encourage you to read more about HLHS if you have time. I remember they told us 1 in 10,000 babies had it. I think the number is higher now. I personally know of three other people who had or have children with this condition, which is remarkable. There are many details about HLHS that I have honestly blocked out. I searched online through late hours learning more and more about it. Babies were known to survive with this condition with a heart transplant or a series of surgeries.

I was scared to death. I didn't have the emotional tools to deal with such a thing. I remember worrying about money and how we would afford all this. How would we manage to make it through such a dramatic thing? What if the baby dies when she is born? How could I ever go on? This isn't a television show; this is real life.

We were sent to South Denver to see a pediatric heart specialist. They did an ultrasound of her heart that took an hour and a half. I fell asleep lying there. We were told even though it was technically HLHS, hers looked slightly abnormal. I apologize for not remembering some of these details. We talked with the heart specialist about what her options would be when born. She had very few options. It was a bleak picture. We were basically told she wasn't going to make it.

Still, I was sent to see a high-risk OB in Denver and had detailed ultrasounds done of all her systems. The only other significant finding was that my baby girl was very small for her gestational age. I don't remember the exact details.

I can tell you my heart absolutely broke during all this. I am the first child in my family and I thought this baby was going to be just like me. I thought she would have been beautiful. I still wish I had a little girl of my own to know what she would be like. I'm certain my reproductive days are over. I couldn't handle going through all this again. I get sick just thinking about all the stress I was under when pregnant with Colin. I was so worried about him. I fatefully had been introduced to "The Secret" around this time and was able to visualize and meditate on positive outcomes and that was really the only thing that kept me from going off the deep end when I was pregnant with him. I had a mantra I would repeat whenever I would start to feel negative: "My baby will be healthy, my baby will come home with us, my baby will grow up and live a full life." That was Colin. I actually still do this from time to time. I should probably do it more.

Mick and I had a lot of long talks during all this. Thank goodness we were able to communicate still. I don't even know how we did it. We had to make some tough decisions. In my heart I am a woman's advocate and I believe every woman should always be able to make informed choices about what happens to her and her body. During this time of making hard choices I got a cramping stomach illness. I was throwing up nonstop. I became dehydrated. I started spotting. I feel like I was making myself sick with some kind of mental breakdown. We went down to Denver to induce labor. I was 25 weeks. This was the decision I had made. I am hesitant to write this because I fear being judged for the choice we made.

The baby came quick; stillborn. We have pictures with her, both of us red-faced and crying. She was the tiniest little person I'd ever seen. She had a little bit of brown hair and long fingers. We named her Frances Jane. The doctor inspected the baby. I was told the cord was wrapped around her neck many times. I was told it was highly likely she had perished in the womb up to a week before. Yet we still had to make the choice to induce early. I wish I'd never had to make that choice and would have let my body take care if it. I think she died from my broken heart.

After this all went down we had a little funeral for the baby. I was empty inside. I wasn't nice to Mick. We should have held onto eachother tighter. I don't know how we even came out of all this. It was a dark day.

I retained part of the placenta for a good week and was bleeding a lot. I had no idea what it was all about. The cramping and blood came in waves. I finally went to the doctor and she sent me to surgery right away to have it removed. I didn't even know what was happening to me. I was so very sad.

I had a certain person ask me not a month after all this happened, "so when are you getting pregnant again?" That was my first real taste of human insensitivity and I cringe thinking about it still. I wish I would have screamed in this person's face. I wish I could right now. It wouldn't make any difference though in the end.

There is not a day that goes by that I don't think about this baby girl. She is always in my mind. I hope she is out there looking down on us and looking after her brothers. I hope she knows I really did want her so badly. I wanted her so bad. I still do.

First Steps to Getting Help

Between the time I realized something was wrong and now, honestly not much has changed in 2 years in Will's neurological status. He has grown very big and is moving along at slow pace. We don't really have a true answer to what he "has." Sometimes people ask me, "what's wrong with him?" And then I try to come up with an answer without getting in a pissy-fit about what a rude thing that is to say... Not that I didn't just previously post "something's wrong with Will." But I'm his mom. I know he's deep down a sweet thing and I know he has gotten the short end of the proverbial stick. Everything he does is a challenge and it is heartbreaking to see him grope for words that don't come out; not be able to figure out how to sit down to use a slide; not know how to make his body climb a flight of stairs; not be able to tolerate loud laughter in a room. It's hard to listen to him scream at the top of his lungs about me not letting him open the grocery store's refrigeration units another 20 times. He doesn't know how to control his feelings and takes most of his anger and frustration out on us. He bites my husband and me and no matter what I do I can't get him to stop that painful behavior. He doesn't know how to play with other kids. He can barely play with a toy. I promise I will write a post on the things he can do because he can do a lot of things and tends to amaze me.

At 15 months Will's pediatrician sent us to a speech therapist. She was a nice lady who first told us the word "dyspraxia." She had been a speech therapist for many years and had a lot of experience. She could tell he couldn't motor plan. He had the intention of doing things, but his brain would not send the signals to his body to make them happen. She said he needed as much speech therapy as possible and to start now. She also told us to get evaluated by a physical therapist and an occupational therapist.

The physical therapist Will sees still to this day is my absolute favorite of all Will's therapists he has ever had. She is a wonderful person and really is great with Will. She takes it easy and he loves her. She works with him every week on getting his core strong and helps him practice walking up stairs, among many other things.

Will has been through a few different occupational therapists for various outside reasons. They work on things like pincer grip and getting Will to open his hands up instead of holding them in fists. They also have helped him deal with his sensory processing troubles. Again, I will write a separate post on this awful-horrible-bad monster condition. It is just so huge. It effects every single moment of his life, including sleep.

Around this same time I also got hooked up with Early Intervention, which is a free service for birth to 3 years provided by all states, some under a different name. They do a big formal evaluation of your child and then recommend different therapies that are provided in the home. Their big thing is that they teach the families in their own environment so that therapy can become a way of life. I have really mixed feelings about our experience with Early Intervention, though I would never truly knock an organization whose purpose is to help small children from all walks of life. We just had a few flaky therapists and I don't really know how much I learned from them; most of it was common sense. I will say that the OT who came was a really sweet woman who was great at listening and cheering me up when things felt most desperate. She also helped Will learn how to climb up and down some playground equipment and he really liked her company. When Will turned 3 Early Intervention was over and we have moved past it.

But for a good year we worked with Will and his therapy diligently. Back in those days I hoped he would just be a late bloomer and could possibly even have "Einstein Syndrome." There's another one I have heard dozens of times: Einstein didn't talk until he was 4. And I would send out my prayers and wishes to the great beyond: Please make my child a genius and I can look back on how silly I was when he was a toddler. Wouldn't that be great? Truthfully, I haven't given up hope on Will and I never will. Things move so slowly with him that it's hard not to get discouraged. But there is always hope. Eventually meeting milestones, even the littlest things, really do encourage me and I know it's all worthwhile. I try to visualize a time when he will be able to talk to me and understand and cope with what is going on in the world around him. And he is happy in those visualizations.

A year into Will's therapy not much progress had been made. The pediatrician referred us down to the developmental unit at Children's Hospital in Denver. What kind of wonderful, mind-blowing insights did we get down there? That's the next post!

A Boy With Developmental Delays - Part 3 - Realizations

For Will's 1st birthday we had a party at the park and it happened to be really windy out. He was one of those babies whose breath gets taken away by the wind. It was still happening. He was so uncomfortable with that wind on his birthday. It was also kind of too cold yet in April for an outside birthday party, so we moved it back to our house. Opening presents he had no interest in. He could have cared less about the wrapping paper excitement. The toys: Forget about it. The kid had yet to show interest in any kind of toy... other than baby books. He did eat the cake and that was cute.

My sister had a new baby in March of that year. How exciting that our kids were going to be able to play with each other and grow up together I thought! In December Mick and I decided it would work out financially for me to quit my job in order to stay home and save money we were spending on childcare. Money was tight, but I didn't really care. I would give things up. I was just so happy to be able to spend all this time with my kids. It was a dream! Mick's mother was a stay-at-home mom and I think that made a big difference in his acceptance of me not working.

My mom spent the majority of our childhood working and how badly I wanted to spend time with her back then. I loathed going to the babysitter. No one understood me there. My mom was burnt-out between work, housework, and three kids and I could feel that as a child. It still has a profound effect on me to this day. I understand that my family needed money and I have no bad feelings to my parents for this. We really wanted for naught and were able to experience some great things. I also do not judge working mothers in any way. We are all doing the best we can out here trying to survive and be happy. There are many days now that I wish I could go to work. I don't doubt that I'll be working again when the kids are in school. The world we live in is all about money, money, money. Always need money. Need to have a house, need to have a car, need food, need vacations from all the work.

Because of the fact that I was staying home now I offered to my sister to watch my baby nephew while she was at work. It would be perfect. Will was between 14 and 15 months at this time... And this is where my eyes were open to the fact that Will wasn't developing normally and something was really bothering him.

He still had no words. He still wasn't yet walking. He seemed to be getting more upset by things like the wind, loud noises, gas, constipation. My nephew was a little over a newborn and I had him over a few days a week. He was just a baby with regular baby things going on. For a few days it was nice, but then Will started to be really bothered by the baby's crying. I had Will screaming and hanging on my leg and a baby crying in my arms. It's an experience many mothers have had at some point, but it was really hard for me. I couldn't have these two babies crying and screaming at me nearly all day. It was really awful. Colin was also there and my niece who was around 6 then. Those two were easy as pie compared to this screaming and crying situation I was in. It was too much. I didn't know what Will was so upset about, but he absolutely could not stand the sound of the baby crying. Both of them ended up spending too much time alone in their cribs at different times and I was guilt-ridden. It was a hard time.

I had to break the news to my sister that I couldn't do this. This is the first time I admitted, in tears, "I think there's something wrong with Will." My sister was mad at me. I had made all these promises and had all these dreams of how it was going to be like the old days when people helped their families out and cousins grew up together. I guess she didn't really understand what it was like with the dueling screaming and crying I was dealing with all day; not to mention the bigger kids were on their own playing video games the majority of the day because I couldn't keep them in-line very easily. My sister got over it quickly, though, and no harm done. She made alternate arrangements for my nephew, but my niece got to stay and entertain Colin and that was good. But how sad I feel missing out on this time with my nephew. It really does hurt.

CRYING BABY ALERT: Crying babies had become a common issue. If we went to a restaurant, I would search for any babies and sit as far from them as possible. How tragic! I love babies! I loved taking the kids to the storytime at the library for babies. Will lost it a couple times and I thought, I'm never doing this again. This isn't worth it. Later down the road when Will started up with Early Intervention services, I had mentioned how hard storytime was and they recommended I make it a goal for Will to be able to tolerate storytime. Great! Sounds like torture.

Around the 4th of July Will finally started walking. He was 15 months. We were so happy for him. Maybe he would cheer up a little now. He was becoming more and more aggitated by the world around him. Later I was to learn about a monster called sensory processing disorder. I'll talk about that in a future post. But the walking thing was great! He was unsteady and walked around like a drunken sailor, but he just started, so no big deal.

It was during Will's 15-month checkup with the pediatrician where they have you fill out the developmental questionnaire and pretty much every category had "not met yet" for various developments. This is where our new life for Will begins. Stay tuned!

A Boy With Developmental Delays - Part 2 - Baby Days

 

One of the first things I remember when we brought Will home was crying to Mick about how things weren't going to be the same for Colin and I. I had given Colin so much undivided attention and he was so attached to me. He was the light of my life. Most people have siblings and I don't really know what I was so worried about. It was just going to be an adjustment; our family dynamic was going to change. I had no idea how different it would be! But the differences really didn't happen until Will was about 15 months when I started to feel things weren't quite right. 

I'll back up to Will's blissful baby days. First, he was absolutely adorable. He was chunky and soft and loved to cuddle. He nursed with the best of them and loved to fill his belly. He had a little colic for a few weeks; but, again, nothing totally out of the ordinary. 

I remember Will being a really good baby. How many times have I read of moms saying their speech-delayed kids were great, quiet babies. Will was so quiet. I don't remember him babbling like a baby does. More than anything I remember about Will when he was a baby is that he loved to bounce in his bouncer. He would bounce for hours a day. In retrospect, I believe this was probably really good for him as it helped him gain some gross motor skills. He just loved bouncing and bouncing and bouncing. I loved it too because I was able to get tons of things done. I would just bring that bouncer around the house with me and he would be happy in there. 

When I think of Will when he was a baby, I also see him strapped into his baby chair on the kitchen table staring at the ceiling fan moving on low. He always seemed so mesmerized by it. He would sometimes kick his little legs and get so excited about it. It was same thing over and over and over again, day in and day out.  

Will sat up at a normal age, about 7 months.Will crawled a little later than I guess what would be considered average. He was 10 months. He worked so hard on it for so long. I have heard of babies walking at 9 months and I thought, 'well, he's so big, it's probably harder for him to move that body around!' He was always so content just to be in one place. He would just sit there too; never played with toys; never had much to vocalize or complain about. I would encourage him to play, I would sing to him, I would constantly be talking to him. Things were just a little different than with Colin, who I had started to think was a super baby! Though realistically Colin just moved at the average pace. 

A couple little things when I look back that I can see as possible issues are: Will had a hard time holding a bottle for his babysitter or me once he quit nursing. He didn't really know how to do it. His little hands were always kind of in a fist. He also would not know how to swallow baby food properly. We would stick it in his mouth and he would kind of like "bleck" it out with his tongue thrust forward. Eating was a messy ordeal for him, but he always managed to eat.

The thing about Will that is still very apparent today is he has a social smile and many facial expressions when you interact with him. I often would catch him with his mouth open, "catching flies" if you will, but as soon as we'd play or get down to his level, he would light up and smile. His smile is big and bright and fantastic. He loved faces. He had a baby doll that he would look at and smile. He loved the baby books with photos of babies.

Still, these days nothing really seemed amiss yet. True, there were no words. No mama or dadda or doggie or kitty, but I don't even really remember fretting over that one bit. I had tons of people say to me "his brother talks for him." Lordy, how many times have I heard that one! I remember we were all worried more about the fact that he wasn't walking yet. I don't know why we wanted him to walk so bad. There was something about that. It seems stupid now how bad we wanted him to walk! 

All in all, Will was an easy baby and had no red-flag issues. And also he was absolutely adorable. Did I say that already? 

A Boy With Developmental Delays - Part 1 - Pregnancy, Labor and Delivery

In April of 2010 our son Will came into this world 2 weeks early at 9 pounds even. He was my second full-term birth and I was more relaxed and ready to enjoy this experience more than I had with my first. The morning before I went into labor I remember having a sudden feeling like I needed to get a lot of stuff done. I had taken Colin, who was 2 at the time, to get his haircut. We went out for lunch. We came home and I raked the front yard. I put him down for a nap and sat down to rest. Then my water broke! 'So this is what it's like,' I thought. When Colin was born my water was broken at the hospital. Mick happened to be at a fishing tournament not too far from home, so I called him and my mom and they both rushed to us. I was still really relaxed and excited.

At the hospital I went into labor easily, though progressed slowly. Finally at 12:01 in the morning Will was born. A new little prince all for myself. Colin was such an adorable and fun and great little boy and I just couldn't wait to have another one. I recall the doctor exclaiming something like, "You're never going to believe how big this baby is!" I was surprised with how easy it was. Colin did a number on my body during my labor with him and I couldn't walk properly for a week! But Will was so easy. He was born with low blood sugar and so was monitored in the nursery for the night and I was able to sleep a little. Nothing else remarkable happened during his labor or birth, as well as pregnancy was completely normal. Will was a perfect little newborn who nursed easily from the get-go and rested tenderly with me. It was love. After a couple nice days in the hospital we took our new baby home.

I will write a post in the future about my first pregnancy that was very remarkable for a tiny baby girl who had a heart defect called hypoplastic left heart syndrome. It was the experience that changed me forever and I have never been the same since. Because of this condition, both Colin and Will were monitored closely in the womb with several detailed ultrasounds with a specialist from Denver. I mention this because whenever we looked at Will nothing unusual ever came up on his ultrasounds. Mysteries abound!

A New Blog, An Old Journey

They say history repeats itself... so away we go again! I'm starting this new blog to help document our lives and give some insight into my personal feelings, struggles, pleasures, amazement, and amusements that go along with raising my son Will, who happens to be developmentally-challenged, and our family experience as I see it. Will has a big brother Colin who is the angel of my life and a happy, fun, super smart kid. Colin is now 5-1/2 and Will is 3. There's also the big guy of the house, Mick, who is a heck of a hard worker and cool and fun-loving dad. I'm Lauren and the mom. I do a lot of mom stuff and house stuff; a lot of reading and a little too much obsessing over certain cable TV shows and immersing myself in pop culture; I also love music and dancing and singing in the kitchen with Will and sometimes Colin and this is where I seem to spend a lot of my time. I love being around my extended family and wish I could spend more time with all of them. I hope to travel more one day and visit some particular family members my heart longs to see. For now, social media and technology are filling that empty space.

This blog is going to be more of my writing and less photos, though I'm sure I won't be able to resist posting photos and videos every now and again, especially since I've recently been blessed with an iPhone and have all this at my fingertips. Growing up I loved journaling and writing, though it was more about my daily life and feelings than any creative type stuff. Being a mom of young children, I feel like a lot of myself has been put on the back burner and lately I've been yearning for an outlet for all these thoughts and feelings. I'm doing this for myself too and am rather excited! Ideas are popping into my head and I'm trying to keep up. This is going to be good.

Welcome to Colorful Colorado with our gorgeous blue skies and summer breezes; welcome to my new blog. Thanks for visiting and come back often.