Visit to our GP

We went to see Dr. W today. She's been my GP since I was first pregnant with Jesse, and has been Jesse's GP since he was born. She hadn't received the assessment from the Janeway yet. That's a little frustrating. So I had to fill her in myself. Then I told her of my suspicions regarding food and Jesse's gastrointestinal issues. So she gave me a requisition to have Jesse's celiac screening redone, as well as a bunch of other labs. There are very few things that were left unchecked on the requisition. Obviously a finger prick isn't going to suffice for this. I so hate putting Jesse through bloodwork. It's never nice and ALWAYS results in tears. And I just feel like such a horrible mom for doing that to him. I'm going to wait to do the blood work another day though. I just wasn't up for it this morning.

I also asked for a referral to Clinical Nutrition at the Janeway for Jesse. We saw them before when Jesse was an infant and having what we thought were "allergy issues." They seemed very uneducated regarding breastfed infants (telling me he should have 3-4 8 oz feeds per day in addition to solid food....WTF?). I wasn't impressed then (obviously), but hopefully they'll be better now. Regardless of the results of the celiac screen, we're going to give the gluten free casein free diet a whirl. As long as we're able to provide Jesse with a balanced diet, it's not going to hurt. And it has the potential to help. Many parents say the GFCF diet has done wonderful things for their kids, so we're definitely willing to give it a go.

I'm also waiting on the private speech therapist to call me back. Jesse's former speech therapist only works afternoons, and Jesse will need morning appointments, since that is when he is at his best, and he does tend to nap all afternoon, so scheduling would be an issue there. So we get a new speech therapist. Apparently they're booking well into March already though. It's better than waiting for the Janeway speech therapist though, I guess. We're still wait listed til March.

So that's about it for now, I guess. Nothing overly exciting...

Holland

Another mama I've been talking with has shared with me an analogy to what our family has been going through that might help other people have some idea of what this is like for us.

Imagine you had your bags packed and were getting ready to leave on a trip to the Caribbean. You were all ready to go. This trip had been in the works for months. You get on the plane, take your seat, sit back and dream of the beautiful sandy beaches, and the warm blue sea. Then the plane lands and you get off. ... in Holland. You are a little stunned, saddened, disappointed. The people there point out the beautiful tulips and scenery. Though it is beautiful, it is not what you had envisioned. It is not what you had planned, and not what you had prepared for.

Having your child handed a life changing diagnosis such as ASD is something like this. This is not what I dreamed of for my child. I had prepared, are best I could, to ensure my child grew up healthy, happy, and loved. But I did not prepare for this. I feel so ill-equipped to be an effective parent to my child. And I am sad. I'm sad that my little boy's life will continue to be filled with specialist and therapist appointments. That he has a label. That he may be seen as "different" and picked-on because of it.

Am I disappointed by my child? Absolutely not. Do I love him any less that I did before? Hell no! I have been, and forever will be, completely in love with my beautiful little boy. He continues to amaze me every day. He is the smartest, brightest, most loving little boy I could ever be blessed with. I wouldn't trade him for all the "normal" children in the world.

But I just don't know yet if I am prepared for this destination.

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***Edited February 22, 2010 to add:

Well, neither myself, not the mama that shared the little analogy with me realized that it was actually a short essay (I guess you could call it that) written by Emily Perl Kingsley in 1987, whose child was born with Down Syndrome. (Thanks Lauren for pointing this out!) And it's Italy, not the Caribbean, though I have a feeling showing up in Holland with your bag full of bikinis and sarongs might be a bit more analogous to what we're experiencing. So, without further ado, here is Kingsley's essay:

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.


It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan.


They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Intake

Steve and I had our intake appointment with the autism program social worker yesterday. Talk about information overload. The basic gist is this:

-we'll be assigned a senior therapist in about 3 weeks
-the senior therapist will see Jesse once weekly over 3-4 weeks to evaluate his needs
-we then go to an ISSP (individual support services plan) meeting, attended by all the people who'll be involved in Jesse's therapy, to make decisions regarding the treatment plan
-Steve and I attend start the process of hiring a home therapist
-Steve and I attend the 3 day ABA (applied behavioural analysis) training session

Over the course of the next 6-8 weeks, we'll also have appointments with the autism program's psychologist, Jesse's neurologist, the physiotherapist at the Janeway that works with kids with PDD, Jesse's GP, the social worker (again), and possibly others. It's getting difficult to keep track of it all.

I was hoping to possibly make use of the critical illness insurance that my parents have purchased for Jesse - using it to cover lost income while I took a leave of absence from work - but I think I'm going to save that for if/when we truly need it. The autism program here in NL covers the cost of ABA home therapy. As a treatment, it's shown the best outcomes for kids with ASD. However, not all children do well with ABA. So if it comes to the point where we're considering other treatment options, we'll have to pay out-of-pocket for those, as they aren't covered by the provincial health care system.

I guess I'm going to have to get really good at time management.

New Words!

So, in the past few days Jesse has learned two new words! He now says "baby" and "no." It's so adorable when he says "baby" and not quite so adorable when he says "no" but I'll take it anyways.

I know this isn't they typical brag of a mama of a two-year-old, but language has been a HUGE challenge for Jesse. Jesse had about 10-12 words by his first birthday. Then, between the ages of 13 and 15 months, he lost all but a couple of them. A couple of times he'd say a new word and then never say it again. At my cousin's wedding last August, Jesse said "dancing" twice (in context!) but then never said it again. He also said "kisses" around the same time, but hasn't since. This past Christmas while my parents were visiting Jesse went from saying around 5 words to about 10, but then lost them again after they left.

This pattern of language growth and regression was the big sign that tipped me off about 10 months ago that something just wasn't right. Of course everyone assured me that Jesse was just a mover, not a talker and that a lot of boys talk later. Our family doctor sent the referral to the development team at the Janeway just to reassure me. But then other issues were being dealt with (particularly Jesse's heel cord contracture) and the speech thing was no longer our number one concern. We DID get in to see a private speech therapist (the wait for one of the Janeway's speech therapist is about 14 months...we're still waiting) and she did an assessment and gave me a bunch of suggestions on how to help encourage language development. But they didn't help. For the longest time I felt like I wasn't doing it right or talking to him enough or I was doing something wrong. I still feel that way a lot of the time, but at least now I KNOW that there's something going on other than just a speech delay. And I know that I don't have the knowledge or skills to deal with it on my own.

Pretty soon Jesse will be getting consistent, intensive in-home therapy to help him learn to talk and to work on his other issues. For right now though, I'm going to celebrate these new words and hope they don't disappear. 

My Funny Boy

I'm taking a break from the seriousness for a minute and sharing some of my favorite moments from the past 24 hours.

The first happened yesterday after his nap. Jesse wanted to nurse, of course. (He always wants to nurse.) So I nursed him. I also "nursed" his baby doll. Then my kiddo reaches for the TV remote and holds it up to my boob. Who knew electronic equipment got thirsty?

The second time my little boy cracked me up was this morning. We were all chilling out in the master bedroom watching some of the Olympic coverage, when Steve took it upon himself to give me a foot rub. (The man knows how to please.) Jesse decided he wanted in on the action and stuck his feet out to his father. I had to share my foot rub action with a munchkin. Though, to be fair, Jesse did pay it forward. Jesse treated his baby to a foot rub afterwards.

And lastly, was when, shortly after the foot rub funny, Jesse's baby gave me zerberts on my belly. Jesse made the zerbert noise and everything. Hi-freaking-larious.

God, I love this kid!

Appointment updates and an interesting article

We have our intake appointment booked with the social worker. It's for Tuesday, February 16th at 10:30 am. That will start the ball rolling with the whole Early Intervention Program. I'm both looking forward to it and dreading it. I want to get this going, get my little boy the help he needs. But at the same time, it'll be confirmation that this is actually all happening. That it's not just a really long bad dream. I guess it's better I face it sooner rather than later though, right?

Then in mid-March Steve and I have an appointment with Dr. Crosbie at her office to discuss things. I was hoping we'd get in sooner, but she's one busy chick. I really want to talk with her more about the ADOS and the scoring, and about her thoughts on these "rapid gains" that Jesse is making, especially since I'm not exactly sure what she's talking about. I'd like to believe her and be optimistic about this, but she was also the one who told me not to worry, that Jesse wouldn't not come out of the ADOS with a diagnosis. So I'm a bit skeptical.

Lastly, I came across a very interesting article on autism and it's causes and treatments. It's from eMagazine  and it's called The Search for Autism's Missing Piece: Autism Research Slowly Turns its Focus to Environmental Toxicity. It's actually a very good read, and much less biased than most pieces written on the topic. Of particular interest to me was this part (and the really pertinent parts are bolded by me): 

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DAN! doctors, despite their detractors, tend to focus on one physical attribute common to autistic kids that’s scientifically indisputable: As many as 70% of them have something wrong in the gut. Common maladies include what’s known as “leaky gut syndrome,” in which the intestinal lining is damaged, allowing toxins and waste to enter the bloodstream; bowel inflammation and an overgrowth of harmful bacteria and yeast. These kids can be constipated often, or prone to chronic diarrhea. Stools are often horrible-smelling (well beyond the norm) and the act of pooping can lead to bleeding. And besides the cramping, pushing-on-their-bellies behaviors, autistic kids with these complications often have outward physical signs: bloated bellies, dark circles under the eyes, pale complexions. 

Back in 1999, a study of 36 severely autistic kids by doctors at the University of Maryland School of Medicine found the first link between autism and a series of gastrointestinal disorders. Nearly 70% of the kids had acid reflux and 58% had chronic diarrhea because they could not properly absorb carbohydrates. Many of the kids could not sleep through the night as a result of their constant discomfort, which in turn was thought to contribute to their behaviors of irritability and aggression. Then, in March 2009, researchers found what looks to be a gene variant linking these two conditions. Published in Pediatrics, the researchers found that the specific gene variation called the MET C allele affected both brain development and gut processes. After studying 214 families with at least one child with autism, researchers found that only kids with both autism and gastrointestinal problems had the gene in question. In a subsequent article in U.S. News & World Report, the author concluded, “This line of research may turn up targets for new drugs.” 

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The reason this section struck me so much was that Jesse changed at 6 months when I started him on solids. until then he'd been perfectly healthy. It was right after I started him on solids that had a nasty bout of diarrhea for 2 weeks (it was dark green-black watery stools, that often included blood streaks). This was in the absence any other indications of infection. It was then that his sleeping went to hell as well. I thought he had food allergies, but he didn't. He continued to react to food with gluten in it, so I removed gluten from his diet and he seemed to do fine. I added back foods with gluten in them and he did OK for a while, though he did have occasional bouts of constipation followed by diarrhea. But these past couple of months he's been constantly having loose stools or diarrhea and the smell is absolutely horrible. He also went on all those food strikes (between around 8 months and 16 months). This article seems to be leading to confirmation of what I had been suspecting for a long time. Again, people kept telling me he was fine (the allergy specialist, the gastroenterologist) even though I knew that wasn't the case. 

So, where do we go from here? (On the gastrointestinal issue, I mean.) I think I'm going to make an appointment with our GP so that she can order blood work to screen for Celiac Disease again. He tested negative last time, but I doubt that he'd been on a regular diet long enough. I really think there's a possibility that it was a false negative. Stranger things have happened.

The Assessment

We received a copy of Jesse's assessment in the mail a couple of days ago. It really helped me understand what Dr. Crosbie had been trying to explain to me last week in the office, when I was too stunned to think. I still have a lot of questions, of course. Hopefully many of those will be answered by the social worker next week and by Dr. Crosbie herself when Steve and I meet with her to discuss Jesse's case.

I've been debating on whether or not to post some of the assessment online. I wasn't sure I wanted that info out there for the world to see. But then, today, I took Jesse to McDonald's to play in the playroom while I had a cup of coffee. A father and his young son sat next to us while I was getting Jesse ready to leave. He asked me how old my son was and I told him Jesse had just turned two. Then he asked me if he was talking much. I said, "no." (We get these comments nearly daily, since Jesse is usually really quiet in public.) And then he said, "Yeah, my little guy will be three in August and he doesn't say much either. They say it's a boy thing." I didn't know what to say. Should I have told him about Jesse? I really didn't know what to do. What made it even worse was that this little guy reminded me very much of a family member who also has Autism Spectrum Disorder. If I said anything, would it have upset them? I really don't know.

So this is the big reason why I'm posting this. In case anyone out there has concerns about their child but has had it beat into their head that their child is "fine." The lesser, but still important reason, is that I'm getting tired of the "you're crazy" or "don't be silly" reactions whenever I've mentioned something being "not right" with Jesse (even though I, myself thought that it was just a speech issue). Maybe this will help people see why I've been concerned. I'll skip through a lot of it and focus on the actual assessment part of it. This was written by Dr. Crosbie but I've added my own notes in italics, to clarify and/or elaborate. Here goes:

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Jesse Snow is a young man reviewed through the Development and Rehabilitation Division as an urgent pediatric consult on December 7, 2009. (I didn't realize that a ten month wait was still considered an "urgent pediatric consult." Can't say I'm surprised though.) At that time presentation was characterized by a loss of speech. He had 9-10 words at 10-13 months of age and subsequently lost them. There were concerns with respect to motor delay but he did have a tight heel cord with contracture on the right foot and [had been] serially casted. (I just want to note here that Jesse's prior toe-walking was labelled "idiopathic", even though his wonderfully perceptive physiotherapist had mentioned that suspected it was a sensory issue. We're now dealing with this being an issue again, as he toe-walks more than he walks flat-footed.)

Family history is positive for....Autistic Spectrum Disorder....(I'm not comfortable giving more info than that, since it's not my (or my child's) medical history.)

Parents have been less and less concerned about Austistic Spectrum Disorder as time has gone on. (In very large part due to everyone and their dog telling me Jesse couldn't possibly have autism.) Jesse is being followed by Speech-Language Pathologist, M.S., who felt primarily his language was behind. (He hasn't been seen by her since last summer.)

At the age of 23 months words included mom, dad, hi, Jess, sometimes boots (and boobies)....

Parents note response to name is variable however he understands everything that is said. During the course of the office appointment he was making tea, pouring, stirring, and giving cups of tea. No repetitive play was noted. There was no unusual television shows watched. He eats a variety of food, continues to drink from a sippy cup, and is breastfed 2-3 times a day.Some early imaginary play was noted in the office. There is some contact with other children at playdates and a play group....

Sleep is generally non-problematic. (Is not *now* but was for 18 months of his life!) He previously hand flapped but this has extinguished. There was no hand gazing or finger gazing noted....

Abbreviated physical examination revealed a long lean child....Neurologically he appeared to be intact....

Given the concerns around language regression and some of the inconsistent response to name decision was made to proceed to complete an Autism Diagnostic observation Schedule (ADOS) Module 1. This was complete on February 1, 2010.

Jesse participated quite readily in all items on teh ADOS. The ADOS was administered by C.P., Occupational Therapist with assistance from D.S., Speech-Language Pathologist. At the time of assessment, Jesse was 2 years, 3 weeks of age.

While Jesse did perform many nice communication attempts throughout the assessment it was overall felt that his use of eye contact and social interaction were not typical for his age.

The scoring of the ADOS is divided into a communication and reciprocal/social interaction domain. The communication domain is looking at the frequency of vocalizations, use of stereotypic language, use of other bodies to communicate, pointing to point out things of interest as well as to get help, as well as gestures. Jesse obtained a score of 2 in communication which is at the autism spectrum cut off score. Reciprocal interaction is exploring eye contact, direction of facial expression, shared enjoyment and interaction, showing behaviour, joint referencing, response to joint attention, and quality of social overtures. His score of 8 in social interaction is just above the autism cut off of 7. His combined score of 10 is just above the autism spectrum cut off of 7 but below the autism cut off score of 12. 

Overall it was felt, given the history as well as the curerent presentation, that the appropriate diagnostic label would be one of Pervasive Developmental Disorder Not Otherwise Specified. This is an Autistic Spectrum Disorder. This makes Jesse eligible for the Provincial Autism Intervention Program....

It needs to be stressed that Jesse is making quite rapid gains. (I'm not arguing, but I'm not sure what she was referring to here.) It is anticipated that involvement with the Autism Intervention Program can only serve to speed this up. My plan would be to repeat an ADOS when he is 3 years of age and review the need for ongoing programming....

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Is Jesse still Jesse?

I wrote the following post last night while I was at work. It was actually a reply to a post in an online conversation I was having with another mother who's child has autism. I thought it belonged here as well.

~~~~~~~~~~~~~~~~~~~~~~~~

 

I keep telling myself Jesse is the same little boy he was before February 1st. Just because he has a diagnosis, or a label, doesn't change who he is. But after thinking about it, and I KNOW my son wasn't born like this. I KNOW that shit started happening around 6 months of age, and I have a feeling his diet plays a role in this (among other things, perhaps). So I'm kind of left wondering how much of Jesse is JESSE and how much of it is the PDD? I feel like my son is being obscured this....whatever you want to call it....disorder/illness/whatever it is.

I tried to get him to look at me today. I held him (he wanted to be picked up) and asked him to look at me. He shook his head and avoided making any eye contact. The only way he'd look at my eyes was if I asked him "Where are Mommy's eyes?" and he'd point to them and then look away again. That's not my son. We used to gaze into each others eyes (when we were nursing or cuddling or playing). Something has changed. And I think that's one of the reasons why I've been so stunned. Jesse was always "normal." This change has happened so slowly over the past year to 18 months that I've barely noticed it. When his Dr. Crosbie (the neurologist) told me after the assessment that he doesn't make eye contact, I was floored. He always had made eye contact. Even with our GP, he always made eye contact so she was sure that autism wasn't a concern.

So I don't know if Jesse *is* still Jesse. This is really eating at me. I feel like I'm losing my little boy.

Today reality hit me

Jesse has Pervasive Developmental Disorder Not Otherwise Specified. He has an Autism Spectrum Disorder. My child has "special needs," a "developmental disability." He isn't like other kids. He might never be like other kids.

I just want him to be like other kids.

In the meantime....

While we're waiting on the social worker to contact us to get the ball rolling in terms of the Early Intervention program and ABA therapy and all that, I've been doing a bit of research and looking around at things I can do to mitigate any roll the environment might have in all of this. One site that a dear friend has led me to is www.toxicnation.ca

They have a great list of the top 10 ways to detoxify. I'm slowing working my way through this information. It's going to take a lot of time and effort to make these changes, but I'm trying to make a start. High priority items include:

-trying to figure out if my Kitchen Aid cookware is toxic and needs replacing. If it does, I'll be going with stainless steel or cast iron.

-replacing all kitchen plastic (including mixing bowls, cooking utensils, etc...)

-replacing Jesse's bedding, including his mattress cover, sheets, and pillow. Replacing his mattress as well would be preferable, but an all natural mattress is PRICEY! We're talking $500-$1000. So I think I'm going to find some sort of organic cotton zippered mattress cover to go over it. I'm also going to try to find a used or low cost 100% wool blanket to felt and lanolinize as a waterproof cover for Jesse's mattress.

-buy organic cotton slip covers for our furniture

-getting rid of any toxic cleaners in the house. Right now I have some non-toxic and environmentally safe cleaners, but I think I'm going to try making my own as well.

-replacing our shower curtain. I want to buy a hemp shower curtain, as they're antimicrobial and have a tight enough weave to keep the water in. Again, they're pricey. I'll be searching for the best price one I can find. I'd rather not have to spend $100 for a single shower curtain.

I'm sure I'll think of more things I need to add to this list later. But this is it for today.

So much info, so little time....

I've been hopping around the internet just trying to get an overview of things. I'm not wanting to dive right in just yet. I'm still trying to find my bearings. There is just SO MUCH I need to learn. I feel like it'll take me a lifetime to learn it all, but I don't have the luxury of taking my time. We need to get on this NOW. My head is swimming with all these new concepts and concerns. Right now, first and foremost in my mind is the role of diet in all of this. Since Jesse first started on solids at 6 months of age, I knew something was going on. I knew it. He had food intolerances right away. He got hives from oatmeal. He had a bout of the nastiest diarrhea I've ever seen for about 10 days, even though he wasn't otherwise ill. He had allergy testing done and had no food allergies. He was also screened for celiac disease, which came back negative, but now I'm wondering about the validity of that test. He hadn't been eating much food with gluten for very long before being screened. And now I'm wondering if his initial language regression after his first birthday was related to the introduction of cow's milk into his diet. I know it all sounds crazy, but at this point I'm willing to investigate anything that might be causing this and I'll do anything to make it better.

Sinking in

Is it sinking in yet? Maybe. Or maybe I'm just too numb to deny it. I think this whole thing is complicated by the fact that Jesse seems so happy and normal. I mean, to anyone who is unaware of Jesse's diagnosis, Jesse is just a normal little boy. Sure, they'd probably pick up on the language issue, but other than that....clueless. I mean, that was ME prior to yesterday. And now I'm noticing things. Things that should have made this less of a shock. The toe walking is happening a lot more than I noticed. The echolalia.

And then there's the fact that this diagnosis explains almost everything we've been through with Jesse since he was 6 months old. The food intolerances (not explained by allergies) and gastrointestinal issues, the sleep issues, the heel cord contracture (which the physiotherapist felt was related to a sensory issue), and the speech problems (delay and regression). Why did I not put this all together before?

I guess it's all moot anyways. The past doesn't exactly matter very much now. We have to figure out where to go from here. I guess we'll be getting a call from the social worker soon. And I placed a $150 Amazon.ca order today for around 10 different books on autism. Maybe by the time they get here I'll be prepared to start reading them.

Day One

There are certain days and events that will be forever burned in your memory. The sights, the sounds, the smells.... Even though I've been around for going on thirty years, I don't have many of these days. Getting my high school diploma, walking down the aisle, getting my first positive pregnancy test, suffering a miscarriage, and the birth of my son Jesse comprise my list.

And then today happened. My beautiful, perfect little boy was diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified.

What does it mean? I'm not entirely sure. I do know that PDD-NOS is an autism spectrum disorder and that it scares the shit out of me. I've been avoiding google, because I'm not quite ready to dive into this just yet. I'm still adjusting to the shock of it all.

Jesse is the most wonderful little boy. He's incredibly loving - very generous with kisses and hugs. He flirts with pretty girls and ladies. He's very gentle around other children and adores older kids. He's incredibly smart (I know all parents say that about their kids, but other people have noticed this too). So how did Jesse end up with a diagnosis of PDD-NOS? I'll give you the long version later, but the short version, is that speech issues led us to an appointment with the developmental team neurologist, Dr. Crosby, who assured us that Jesse was almost certain a perfectly healthy normal little boy. But she suggested a team assessment just to completely rule out anything else. So we went to Jesse's appointment with the developmental team today fully expecting them to say to us, "What are you doing here? Your kid is fine." That didn't happen. After going over the assessment with the other team members (occupational therapist, speech language pathologist, psychologist?) Dr. Crosby met with us. In under two minutes my head was swirling with information that I was just failing to comprehend. "Autism spectrum", "Pervasive Developmental Disorder," "Social worker", "lead therapist", "therapy program".........

In a matter of minutes, our whole world turned upside down. Nothing has really changed. I mean, Jesse is the same child he was yesterday. Still the same happy, loving, wonderful child he was yesterday. Right now I have to remind myself of that constantly. But everything else has changed. Yesterday I was planning on starting a new business venture that would, hopefully, in the future, allow me to reduce my hours away from home. We've been planning to grow our family. Both of those are on hold indefinitely now. I have so much to do and learn. I have to help Jesse get better. I don't want my little boy to have to deal with a world that views him as "damaged." I just feel so ill-equipped to do this.