A Shining Light

I found out this week that an amazing little person passed from this life.

He was born with a virus known as Congenital Cytomegalovirus (CMV).
He wore glasses.
He cheered on his favorite rugby team, THE SAINTS.
His name was Elliott.
He was 4 years old.

Even though he lived in Liverpool, I felt connected to this kid.  For obvious reasons.

I'm sorry I never got to meet the sweet little guy, but I feel like I loved him.

And you can see that his life was full of love.  And that love was inspiring.  I enjoyed meeting Elliot through the Christmas videos like this one, that Elliott's devoted dad would post each year. 

He was a shining light, and now Elliott is an angel, watching over his family and our special children who fight so hard to do what we take for granted.  God bless you, Chris.  Our thoughts and prayers are with you.

How many hoops?

At this time last year, I was waiting to hear whether my daughter would be accepted to a local private school. I'd found the process grueling: Open Houses first...which school is the right fit???  Then, Psychological Testing (yes, for five year-olds), Play Dates, Site Visits, Financial Aid Applications, Financial Aid Awards, Deposits...how silly I was to gripe about any of it.  The process was so clear, the steps so nicely presented in a bulleted list...she's now on auto-pilot, and I imagine we won't have to really pay attention until it's time for College Applications, or if we decide to change schools mid-stream..

My son Elliot's journey, well, that's where we've earned our stripes as parents.  After he was born with congential CMV, we were given a list of resources, including Medicaid, Social Security, and Early Steps.  We aren't eligible for the first (even under the new earning guidelines), never pursued the second, and felt saved by the third. We should have done more through Medicaid at this point...keep reading.  Through Early Steps, a host of therapists came into our home and later, his childcare to teach us all how to best help him.  It was a godsend, and shaped our parenting so dramatically.    Unfortunately this service ends when the child 3.  So what then? 

Public schools don't have 3 year-old programs.  If your child is 3 yo, you can bring him to public school to receive this services, then bring him home/childcare.  Your other options are private therapy, or if you're lucky enough to qualify and high enough on the wait list, Children's Hospital has therapy services and offers assistance to cover the cost.  Orleans parish is just getting back up to speed, and is able to send teachers to your child's center.  However, we reside in one parish (Jeff) and Elliot's childcare was in the other (Orleans) so Homebound wasn't an option for us.  You can trust that your childcare center can use modifications and interventions.  But truthfully, there's not enough education and training for these dedicated professionals to be able to fully understand the scope of many disabilities, and implement what's most helpful. And frankly, that's true of most certified teachers in this state.  To get your child's needs met,  most families create weekly schedules that are more complex than Sean Payton's best plays.

Elliot's 3 year of life and therapy looked something like this: 

Ok-today is Tuesday?  You go there, and he goes here, and at 10 oclock bring him here and then this afternoon, we'll pick up him and her and go there.  Got it??  BREAK!

This included childcare at Abeona House, 2-3 mornings at Bright School, 2 afternoons at Children's Hospital, 1 monthly visit at Crane Rehab, and 6 specialist visits sprinkled throughout...all while we were pregnant with bundle of joy number three!

Can we meet you for a playdate, or soccer or gymnastics? Um, not likely.

You can see why we were looking forward to having a comprehensive therapy plan through the public school system when Elliot turned 4.  This process was no cake walk either.  First there was the Eval at the district office.  This whole process was rather frustrating.  One tester seemed exasperated with Elliot's distractability with her test questions (and my own guffawing)...after 2 hours of testing, lady.  He's 3 and a half! 

We were then given the option to have him in a half-day program for children with special needs.  This half-day program idea is ridiculous.  Who are these people who can do this?  And does it really benefit the child?  Even though the school program seemed wonderful, we opted out of this because it meant more days that look like the diagram above.  Elliot spent another year in childcare with loving teachers and lots of play.  Therapies too.  

We put-off a lot of school searching with Elliot's participation in Abeona House.  I can't imagine looking for suitable childcare for a tiny baby with special needs.  This network of support and knowledge was critical in his development, and mine. 

So when we were done there, the big world was waiting.  And as I just got off the phone and learned even more about services for the disabled, I don't know if we'll ever know enough.  There always seems to be another hoop to jump through.

In year 4, it was Pre-K 4 & THE IEP.  The Individual Education Plan is where you explain what supports your child will need to be most successful in the least restrictive environment.  It's where you think throughou how your child communicates, eats, pottys, learns, etc.  Note to parents- You have to know your kid, and what works for him/her and include it all in your IEP.  If your child has sensory issues and is adverse to certain kinds of toilet paper, include it.

The caveat: Public Schools only provide therapy and interventions that will help the child function within the school system.  If he/she is lacking a skill that doesn't affect his functionality at school, it's incumbent on the parent to seek private therapy. 

We haven't had a great experience with our child in the public school system.  The absolute worst of it was my son telling me as he snuggled next to me at bedtime that his teacher had hurt his arm.  I made clear to his teacher that whatever had happened was not OK with me, or with him.  Mostly, I was grateful that I have a child that can communicate to me.  I also wondered, and continue to wonder, how many times in this process will I feel like I'm playing a game with the system, with my son's teachers, as I dance between getting him what he needs and not pissing too many people off?

The good news, though, is that Elliot is in a typical classroom, with an aide who assists 2 other children and him.  This is really the optimal learning set-up for him.  However, the school's Special Ed kindergarten is a joke: kids are in the pre-K building, and "Go over for inclusion (groan) once a day, unless it's raining."  The SPED kinder is a mixed-age group of kids 3-6.  NOT FOR EL.

So what are our choices as we look at kindergarten?  This question has led me on this year's journey of  disappointment, frustration, and new insights.  If sharing can spare you any agony, please read on:

-Public Schools:  Just because public schools are legally required to serve your child, don't be lulled into false complacency-this is still a system that needs to be navigated, and like most anything, the squeeky wheel gets the services, or something like that.  

• 
  
  Befriend someone on the inside...an administrator who can look at the system objectively, help you navigate the inner workings, and connect you (or give you the names) of the people you need to talk to.
• 
  
  Ask for what you want, or find out what you need to do to get it.  I know Elliot thrives in an inclusive environment.  I'll ask how this can happen in his district school, his Pre-K 4 school, and other schools 100 different ways to everyone I talk to.  Each conversation yields some bit of info.
• 
  
  Don't foget advocacy groups: Families Helping Families will connect you with a lawyer for your IEP meeting if you're meeting resistence in having your child's needs met.
• 
  
  Start asking questions for the next year right after Christmas.  That's when schools are in the planning and staffing stages...if you wait too late, your child and his needs won't go into the planning.
• 
  
  Kindergarten Special Ed programs are not in every school.  Find out where these are to begin your search.  If you want an inclusive program, you probably still want access to SPED services...
• Talk to parents.  Any time I see a parent with a disabled child, no matter what age, we have a conversation.

Catholic Schools

I am pretty sure that Jesus would open his arms wide for my child, but no so at most Catholic schools, and even when they do, there are limitations.

• Most that I have found don't serve SPED until 1st or 2nd grade, and even then, it's depending on the nature of the disability and how independently your child can function. 
• SPED usually means a resource room that assists children who are slower learners.
• Many won't even accept children with 504 plans--plans ensuring minor modifications, like preferential seating.
• The one or two that we have learned will take our child are loving environments but expect us to provide a child-specific aide.  Tuition (w/ no financial aid) + aide = No Way.

Child-Specific Aides

• You may be able to have one of these through your public school.  Elliot currently is with a SPED aide in a typical classroom. I'm hoping he'll have one in 1st grade at his district school.  (Erin, if you're reading this, any info you can add would be appreciated!)
• If you participate in Children's Choice (also known as the New Opportunities Waiver), you can have a child-specific paid in part by the gov't and you at the school of your choice.  The caveat: You should've applied for a Medicaid Waiver NINE YEARS AGO...like, before I was even thinking about getting married.  It's worth getting on the list, though, I hear from a parent who has a Child-spec at a local Catholic school.  To do so, your local office of disabilities will come down an eval and see if your child meets the criteria for the Medicaid Waiver, and will send the Statement of Approval to the Medicaid Waiver office who will contact you.  If you participated in Early Steps, they will post-date your application (which will bump us up a few years).  Read this, and weep, Republicans.  I'm sure these are the services you're always trying to cut.  Guess what?  We need them all.
• My friend's recommendation: child specific's will come through the agency.  You probably won't like who they send out.  She hired her person, and asked the agency to hire them too...they pay for this person together.

Private Schools

Like Catholic Schools, each of these vary, but for the most part, private schools have homogenous populations.  Unless you have an older sibling participating in the school, you may not even have a serious conversation about whether your child can participate, as I found during my search for Ana's school last year.  Even then, I'm imaginging these schools expecting you to provide a child-specific.  The good news is many private schools offer financial aid.  Again, no therapies are really available at private and parochial schools...you can't drop the ball on this.

What now?

We are most likely going to remain at H Park, but this crazy journey has helped me know that I need to write a letter requesting a child-specific in the typical classroom.  If this idea is rejected, we will be somewhere else.  Exactly where that would be, we don't know.

And before he starts wherever, there's a summer camp to find.  *Sigh*  It's exhausting, but what wouldn't we do for our guy?  He deserves it all.

Asking Science for a Refund

On our recent trip to the opthamologist, who after another 2+ hour wait remains confused about why Elliot's eyes made such a dramatic downturn three months post-op, we were encouraged to have another MRI done.

And exactly WHY would I subject that child to another MRI?
Deny him food, put him under, and have him put in a machine that makes the smoke monster on Lost sound sheepish because he might have some kind of flare up that causing these changes?
Can you DO anything about these changes?
Can we prevent these flareups?

If you're just fucking curious, you'll have to poke around on some other CMV kid, because my child is not a science experiment, and we have not donated his body to your cause.

Why can't doctors of children with a host of specialists coordinate care and actually TALK to each other? A quick call to his Infectious Disease doc and/or neurologist would tell him all he needs.

So what to do now? I'll wait two weeks (and hold my son down while I put on his glasses), then wait two hours to see this doctor again, and ask him if he thinks my son has a brain tumor or some other legitimate reason for an MRI. And I'll wait to see him again because I have no choices on who to see. He is, all at once, the best and worst doctor in the city.

Letting myself off the hook

Well--

There's no news I've found about the Hep A vax that would have kept me from immunizing Elliot.
And while that helps ease my conscience, I'm still struggling with fear...my fear that he is losing his eye sight.

Today I'm waiting to talk with his optham. re: vaccination and what glasses will/might do. And I'm waiting to talk with his pediatrician about CMV, and if it's possible that it's active now, and if that might mean a change in some of his functioning.

In general, I feel like there is an elephant sitting on my chest. And I don't want to ask him to move. I want to ask him to just move further up, and finish me off, instead of smothering me, a bit at a time.

El's Eyes

Hi folks-

I'm just brushing up on postings a couple of months back on kids with calcifications and reactions to immunizations. Abby, it seems like Jack's delays were the most intense that were shared.

We've recently had an experience that may be due to immunization, and I am searching for potential causes. Elliot (3.5, microcephaly, unilateral hearing loss, "wandering" eyes, CP) has had all his vax "on time" w/o any concern from any doctor (or uninformed parent). Last week we had him vaccinated for Hep A in preparation for a family trip to Central America. He'd visited the opthamologist just before because of his strabismus...Followed up w/ the optham. a few days post-vax and there's a significant change in the wandering, prompting some immediate action to look at glasses and discuss his eyes in a more intense way.

We've noticed increased wandering, and tonight, at bedtime, Elliot told me "My eye hurts." When asked if he wants to go to the doctor, he said, "Yes." My son's gone through so much and has NEVER told me something hurts. I feel tremendously responsible and guilty for having him vaccinated despite having read this. Elliot's never had any adverse reaction previously to vax, we've never been warned by any docs...I'm wondering if anyone out there has seen any changes in their child's vision like this (strabismus/accomodative esotropia), or Hep A experiences, or post-immunization experiences like this one.

Thank you,
Emmy in New Orleans

El's Eyes

http://www.umsl.edu/~garziar/factsheets/factsheet_accomesot.pdf

What's happening?

Follow up with Dr. Ellis yesterday.

Elliot's esotropia (a form of strabismus) has worsened since last week's visit. This tendency of one eye to act independently, causing his brain to discount the input from the wandering eye rendering it useless over time has been an issue for a few years...we tried glasses, then surgery (for that issue as well as another), and it seems that something has changed.

We've noticed increased wandering in the eye over the last month.

It's this recent change over a short period as observed by his opthamologist that has me wondering-
1. Is this related to the Hep A vax Elliot had for the Honduras trip? Other CMV moms have reported changes in their children's health post-vax (seizures). This has never been our experience. Nor do most children get Hep A vax, it's a precautionary measure for the trip.

2. Is this related to a flare up of the CMV? Elliot slept terribly last night, threw up his sushi after dinner, and is not at his best right now. Is the same reactivation of CMV that is causing the vomiting also causing other parts of his body to react differently? Is it possible that this change in his eye sight is a temporary weakness (like the one we've always noticed when he's tired)?

And so, we're back to getting glasses. Elliot is at risk for losing his eyesight, which I think was always the case. But I'm feeling angry, and tired about this right now. And quite guilty.

Should I have researched Hep A/vax in greater detail with the CMV community and made a different choice? I feel the burden of being the family researcher, and I'm not very consistent about it. Kevin will never do this kind of thing, something that I both love and hate. Last night, struggling with my feelings, I thought, Might it be my fault that Elliot loses his eyes? Fuck. I feel a tremendous amount of responsibility, and like most of this, we'll never know what's causing the change in his eyes, so I'll add this to my guilt cocktail.

For the good doctor

Hi Dr. Demmler,

I just posted to the CMV list-serv about our 3.5 yo son Elliot. My recent concerns are related to progressive hearing loss. I've read recently about a study you were involved in that compared SNHL in symptomatic and asymptomatic children. I was hoping you could help me by answering a couple of questions.

1. What determines if a child is symptomatic or asymptomatic? What are the symptoms (mom's CMV symptoms pre-baby)?
2. Our child gradually (complete loss in rt ear by age 2) lost his hearing in one ear. The other remains healthy (testing again next Wednesday). Does the loss, and progression of loss vary and fluctuate? Of course, we are hoping his loss is unilateral...I thought we were out of the risk zone but it doesn't seem to be the case.
3. What causes the progressive loss? Does it have anything to do with the shedding of the virus when reactivated?
4. WHat can you tell me about Glanci--?
5. Do you know of a doctor in the New Orleans area with a strong interest in CMV? Should we consult regularly with a virologist?

Any information you can give would be helpful.
Emmy
Mom to Elliot (3.5)

Cause I only want to write it once tonight

A cut and paste from my posting tonight on the CMV list-serv through Syracuse University:

Hi folks,
Thank you for all the information, and warmth, and love(-;

From the sound of our post, you might think that we're new to cCMV, but our son was diagnosed 3 years ago at the age of 4 months. We initially inhaled every bit of information out there, but at the time, we were so overwhelmed with our feelings, and setting up initial supports (therapists, appts w/ specialists et al)I don't know what I remembered. I was just trying to get down all these names with Latin roots...micro-what? cytomegalo-what?

I had originally posted here (or on Baylor's list-serv?), and connected w/ a mom near New Orleans. I tried to set up a playdate after reading her blog, and she had to inform me that her daughter had passed. This made me feel so hopeless and desparate...I had to opt out of the list-serv thing. It felt noisy and dark.

We've spent the last 2.5 years relying heavily on a great support system of therapists, teachers, and specialists. And had let go of so much of the fear just from watching him overcome so many of them...and I know this will be the case despite what future challenges lie ahead.

But recently, stumbling across CMV info about hearing loss (I NEVER read up on this stuff), I felt like our neurologist doesn't fully understand how the virus behaves, and that we were led to believe that his potential for future hearing loss was nil. This has made a tremendous shift in my thinking, and reliance on doctors for information. I've known since Elliot's diagnosis that I would always be an advocate for him, and I have been...where I felt like his RIGHTS as a child w/ spec. needs were concerned, I have educated and advocated. Where other parents struggled with their own diagnoses, I've championed early intervention...but as far as intimate knowledge of CMV, I assumed (wrongly?) that the damage is done, and have relied on medical experts to tell us next steps.

So now my thinking:
-I need at least one doctor who is intrigued by CMV and keeps up with the current research on it.
-We may need to consider Glancl? for slowing hearing loss.
-We probably need to learn ASL so we're not blindsided by the loss of "his good ear."
-I need to consider other possibilities for GI issues.
-I need to connect to the larger community, to learn what I can, learn from others' experiences.

Thank you for sharing your stories. I need to dig back through and connect with you...although I did check out Project Jack, and was moved to tears in my office in a broom closet in a hundred-year old New Orleans cottage on a street that rolls right near the Mississipp--and said, damn, that's just beautiful. Thank you for sharing that.

I'm coming around but I'm generally overwhelmed. I have three kids (my daughter Ana is 5, Elliot is 3.5, and baby Oliver is 5 months old today!), and I direct a non-profit childcare started by parents after the storm. My children go there, so it's highly motivating (and convenient where therapies, interventive strategies, etc are involved), and it keeps me very busy. My husband works nights so our lives are pretty cuckoo!

We have a blog that I'd love any of you to visit: http://lospininos.blogspot.com.

And Dr. Gail, if you're out there, can you refer me to a doctor in the Greater NO area? If I don't hear from you, I'll contact you through the website.

Thank you, everyone.
Emmy

Handsome

Elliot now winks, blinks, and hams it up when someone mentions the word, "Handsome."

Do we need to work on being humble, little guy? Maybe, but we can't help it. You're quite the charmer.

Yesterday, Kevin took Elliot to Hangar in Children's Hospital to be fitted for orthotic leg braces. They will likely be high, and conspicuous, and help anchor his left foot, which he keeps flexed, and keep his right foot from collapsing inward as it does.

My son will have many accessories, by then--
The glasses that need to be brought back to the optometrist every other week to be reformed because he chews on them;

The arm cast for his right arm as we work on the forced use of his left hand, applied in little bits (20 minutes at the most, at home or in therapy);

Coming soon: Scapula tape to anchor his scapula and keep it from popping out from under use and poor muscle tone; an E-stem machine to hook up to at night, zapping your weak muscles with electrical stimuli, reminding you that they are there.

I'm struggling a little bit with the feeling that you will be the Bionic Boy, and wonder if you might want to be in your own skin once we subject each of your parts to some kind of Adaptive Technology. I hope this stuff will help.

No matter what, though, you'll still be our Handsome Guy.

Reading Labels

So I met with two of Elliot's evaluator's today. It wasn't the official IEP, but I was there for other reasons, and wanted to check in on the process.

The opinions of a team of folks that met with my son for a brief 2 hour period have no bearing on my own assessment of him, his potential, or his life path. However, it does impact, potentially, how he would participate in the school system.

Would Elliot be designated as developmentally delayed? In the currently flawed system, this would mean he would be in a special class, and would participate, on a limited basis with his typical peers. This is the designation I was avoiding at all costs, and only knew that it would mean I would have to seek out other options for Elliot's education. I have seen the value of inclusion, and how my son thrives to do as his peers. In a classroom with the full spectrum of special needs, there's no telling how, or if, he might be challenged.

Today, I learned that his designation is OHI, Other Health Impaired. YAY! That means he'll receive Speech (for articulation help, not language development), OT and PT. Super! Most importantly, if we choose to enroll him in a Jeff Parish school, he would participate in a class with typical peers, and be pulled out for services. Ideally, this is what the model should be. A good teacher individualizes instruction, and works with support staff to incorporate modifications into her daily practice. The word is that this is what the parish is working towards. But things move slowly in Education. I'll give it five years at least.

Whatever label is slapped on my son, and his file, matters little to me. As long as he gets what he needs, and is in the Least Restrictive Environment (LRE), then I'll happily sign any IEP that comes my way.

I should say, though, that I'd already contacted attorneys at Families Helping Families in the event that I needed an advocate well-informed of the law. FHF is a great resource for families of children with special needs, and as one of those parents, well. You gotta be ready to fight for what you know is best for your child.

I don't know what we'll do in August when Elliot ages out of Early Steps. We may have him get therapies twice a week through Jeff Parish (this would be in a special class with special needs 3 yo since JP doesn't have a 3 yo classroom). Or we could pick up therapies at Children's Hospital, free through CHAP. In any case, he'll be at Abeona House next year. The inclusive classroom, and the loving teachers I trust so deeply are so pivotal in his development. I don't know where the Bright School fits in, and if we'll be able to manage driving to the therapies (instead of them coming to us) + Ana at a new school + baby. Let the schleping begin.

I'm fearful of losing his web of support. His therapists have done as much for Kevin and I as parents, as they have for Elliot. It's scary thinking of his future, and of how things change in larger groups and systems. But I do believe there's a lot of love out there. Some of the most amazing people I've ever met are Special Ed. teachers and therapists. I'm so grateful not to have to do this on my own.

Visit to perinatologist

Today was our first visit to the perinatologist. Our ob/gyn recommended that we consult with one after discussing our fears regarding pregnancy and potential illness.

The timing couldn't have been better, as yesterday, I was dealing with a case of chicken pox at the center, and despite having had the illness at age 2, was on self-imposed quarentine at home. All my fears of not keeping the baby safe compounded into a massive head and body ache by the end of the day.

I opted to walk to pick up Ana and El, which was definitely the right move. The weather yesterday was extraordinarily beautiful. And spending some time with Ana and Elliot at the stables, where they were both "kissed" by enormous stallions, providing me some healing laughter. As we ambled home, we found our good friend, Sweetpea The Goat with owner Amy out there on the batture. It was one of those kinds of afternoons, and I was grateful for it.

But last night the anxiety found me, and I began to worry about returning to work, with the prevalence of childhood illness that exists wherever small fries can be found. I felt scared of this appointment this morning. Of what we might learn.

That anxiety followed us into Tuoro this morning. But it didn't last long. Although I was armed with a fistful of tissues, I didn't need to use them. Dr. M was well-informed, warm, and easy to talk to. We were able to discuss Elliot's pregnancy with him, as well as our subsequent fears, and potential threats to another healthy pregnancy.

He assured us that:
-the likelihood of the CMV being reactivated in my system is incredibly slim; equally slim are the chances that I would pass this to the baby.
-there is nothing in my history to indicate that there is a greater likelihood that I am at risk to pass CMV or anything else to the baby.
-there is nothing that makes this pregnancy high-risk. I'll be back to see him in May for our 2 month ultrasound...

Because of my work with young children, and my fear of another common illness that my ob sees as a threat (Parvo), Dr. M suggested that I get an antibody panel through my ob. This would show me which illnesses present a greater threat (no presence of their antibodies in my system). I think that we may follow this recommendation, for my own mental health, and so that I can stop snalyzing why Elliot's cheeks are so red (a common symptom of Parvo, aka "slap cheek").

Besides religious hand-washing and disinfecting, I hope not to become OCD during this long pregnancy. Dr. M's parting words, "Just take a step back, and try to enjoy being pregnant." They rang in my ears as we drove home and the tears came. Two days of stress coming out, as I told Kevin that all I want is to keep this baby safe. More than anything in the world. And I'm scared.

Another little one to join the clan

Well, I'm still reeling from our discovery a month ago that Kevin and I will be parents to another child.

Here's how it played out: shortly after realizing that I'd missed my period, I bought a test at the drugstore, and "administered it" while at work.

To be honest, I was relieved to see the single stripe that told me that my period must simply be late. I was not pregnant. Or so I thought.

I threw the stick into my purse.

Later that day, at a meeting with Elliot's therapy team, I found myself fishing for change in my purse at the coffee shop. Needless to say, I found a lot more than I was looking for. In the light-flooded cafe, the fainter second line was revealed. I met Kevin's eyes from across the shop, and he looked immediately panicked. I think he may have believed it was related to all the upcoming changes in Elliot's services. He shot me a puzzled, are you OK? look, to which I dismissed his concern. Frankly, I was grateful for the existence of that heavy wooden counter. It was holding me up from a fainting spell.

Unlike my first two pregnancies, I've been nervous with this one. There are some obvious reasons:

• When I was pregnant with Elliot, I contracted CMV, and passed it to him. I have a newfound fear of pregnancy. After having Ana, I took for granted that I would have a healthy child. I have struggled with some guilt at not having kept my Elliot safe inside me. And yes, I do know that there's nothing I could have done to change the course of things, but that fear and guilt exists nonetheless.
• We will consult with a perinatalogist because of this fact. My ob/gyn has recommended this. Having a professional outside of our family saying "high risk" and "pregnancy" in the same breath unlocks those fears. Although I should say that the risk of passing CMV comes only if the mother contracts this virus for the first time while she is pregnant. By pregnancy, most women have already had CMV before, and thus have the antibodies floating around to fight the illness should it raise its ugly head during pregnancy. I'm not afraid of CMV again. It's just the other million possibilities.
• We're struggling financially. It's no secret.
• I feel fairly stretched in terms of energy with our dynamic duo as it is.

Yikes.

What perfect timing to stumble upon an anniversary letter I wrote to Kevin shortly before Ana's birth. He was very anxious about being a dad, and worried that we would not be able to give the baby what she needed. In the letter, I assured him that he had the most important thing our baby would need: lots of love. So it's these words that I'm clinging to during these anxious first few very nauseating months.

And there is a new joy this time around. Ana is old enough to fully appreciate the enormity of this news, and to be excited by the new relationship she will have as a result. On Valentine's Day, we gave she and my mom copies of the ultrasound (at 7 wks) in a frame. Neither of them knew what they were looking at. Then, a knowing surprised look came across Tita's face, and we told Ana that "Mama has a baby in her tummy." She jumped up and down, speechless, with her tongue hanging out, for at least 2 minutes. It reminded me of her response to seeing El for the first time at the hospital: she jumped up and down, pulling at her own hair! For those of you who know Ana well, her being speechless is a rarity. She's got so many words to express herself. That's just how big this news was to her.

Since the big reveal, Ana has been very protective and clingy, which is much to be expected with some of the fears that come with this news. Will she still be the baby? Will we love the other baby more? I know that's what's behind her behaviors, so we have built in lots of special Mama-Ana time with hugs and kisses.

But when she's not in that mode, Ana is carefully monitoring what I eat, and asking if these things are good for the baby. She's fed the baby brocolli and crackers, and often offers something to the baby from her plate.

When I have a tummy ache, she's quick to offer a Preggie Pop to help with the nausea. She's been quite the caregiver. I truly enjoy watching how Ana nurtures people around her. It's quite a gift she has.

The other night, Ana spoke into my belly button as if it were a microphone.

"Hello baby. I'm going to tell you about the world. There are stumps. They are at the bottom of trees. And there are leaves on the branches. And then there's Coke. It's not good for you. Grown ups drink it sometimes. You can drink some when you're a grown up." I'm grateful she'll be in the baby's life to explain Mother Nature and Caffienated Drinks. Essentials of life in America.

Ana also brings our two pregnancy books to me often. She's amazed to learn that one week baby is a small olive, the next time, a strawberry. She loves looking at the pictures of the fetus developing, and of the the pregnant mom's body changing. She has lots of questions about this period. After we explained how the role of the umbilical cord, and how her daddy cut hers shortly after birth, Ana noted gratefully that "it would be terrible if grown ups were stuck to other people with these tubes." Side-splitting fun(-0;

She's told me she wants to see the baby come out. I've assured her that she can see the baby shortly after. Ana is a part of this pregnancy. In a big way. And I am happy to share the miracle of this with her, and the joy of this new addition with her. She keeps reinforcing to me, that we DO have what this baby needs: A whole lot of love. And that love will come from all of us.

To Elliot, who is Two and Five Months

Well, my boy, when you were close to coming, your dad intimated to me that he was hoping for another girl. Ana's long lashes and curls had long since enchanted him, and I don't know if he could imagine such an intense love being truly distinct from his first girl. When you burst into our world on August 2, 2005, we didn't know how much our lives would change because of you, and we didn't fully understand how we could find more love inside of us, and how that would grow exponentially. But Elliot, if there is one thing about you, it is that you have the power to bring tremendous amounts of joy, and to draw love out of those that you meet.

Right now, you're crazy for The Wiggles, especially the mind-numbing, completely catchy tape we have in the car. You'll complete the last word in each line, like a cloze exercise, and move your head back and forth in a dreamy way, or clap and shake excitedly to the music. Your favorite toys are music makers: your Christmas keyboard, horns, train whistles, drums...and of course, objects never intended to be musical instruments like forks and tables, tubes, and pencils. You draw the music out of the world; you make our lives like a song.

You love to hide, and your Christmas rocket is the best place for that. You loudly announce, "I hiding, " and disappear behind a stream of giggles. You can't resist peering out at us, and love the expectation of being found. Being found is a reward for us both! We get to hold you and laugh, and you enjoy the ruse.

One of our favorite games is "cut the pickle" when you put your two pointer fingers together, and we use our pointer to break the fingers' bond. Next comes "tickle, tickle." That just cracks us all up. Any fun will surely come with the request "again!" and we indulge you until you're done with that bit, and move on to the next adventure.

I've considered renting you out to Merry Maids, but the truth is, your clean-up ventures usually yield more mess than clean. You "wash the dishes" while I cook, use your personal vaccuum when we're buzzing the louder version around the house, sweep, use the dustpan, and "wipe" away the messes that you see and make. And of course, when piles of laundry are heaped in neat stacks, you quickly make them into the more exciting mound of clothes, just right for, what else? Hiding.

You work hard to keep up with the big sister. If she's climbing a tree, you want in. If she riding her bike (it's tall, and shiny, with streamers) you can't be bother with the push toy. Now you're telling us, "Turn" and fully expect that because you're becoming such a wordsmith, there's no reason why you can't, say, climb and cross the monkey bars.

It's a good thing she's always looking out for you. You two are really best friends. You disappear into her room, and I'll find you both having a noisy tea party, wearing cat ears and pink capes. She loves to read to you, and shares with you so readily. You are sad when she is off with Tita, or a friend, and look for her out the front window, calling her name. When she hears you in the morning, on the rare day that she is up first, she runs to your crib, and you both lie under the blanket, lots of giggles emanating from you. In her recent games of Princess, and I'm getting Married, you are the prince, or the husband. She talks about marrying you when she grows up.

You are speaking in such long sentences now. Over the Christmas break, you said, "I want to go with Morgan," and demanded, "I want more kisses!" You repeat everything, and enjoy learning the names of our world full of stuff. The Moon is one favorite. As is the Train.

You've become a Two Year Old. You want things for yourself. You want a turn. You want it now. You won't take no for an answer. This has yielded a whole new set of facial expressions that we've never seen. Namely, Angry and Sad. I know that you must have felt these things before, but honestly, you've mostly been Happy and Charming. We're excited to see you developing these other emotions too.

Hugs and Kisses. You're full of them, Elliot. And you give them freely to people. Several times a week, some mom in your classroom will share a sweet encounter of you seeking them out for a hug or a kiss, and sometimes, I find them happily held captive with you on their lap. There is a real power in your hugs, and I have often felt completely unburdened after an Elliot Special.

You are a piece of my soul. I cannot imagine a deeper love than the one I have for you and Ana. What I see between you and your dad brings me to tears when I let myself fully feel it. You are two sides of the same coin. It's no doubt that your sweet, gentle temperment comes from Kevin. You both have the same vigor balanced with a genuine acceptance of people as they are.

You have some rituals that solidify this bond. Sitting on the front stoop in the morning, you with sippy, he with Earl Grey. Nightly tickle-fests of at least 15 minutes long. Your belly laugh should be bottled and given to the depressed. (The best part of this one is the "delayed tickle" that Dad does, and your cracking up before even being touched). Dad shops incessantly for you (Gap online is his favorite). Sometimes the style and design of his purchases looks a lot like what he's wearing, and you look so alike, it must seem intentional. Dad gives you horsey-rides around the house whenever you say, "Ride." Who needs an amusement park? Dad is 24 hour rough-and-tumble fun.

He's often said to you, "I thought I wanted a little girl, El. How could I have known?" Your daddy would do anything for you. I have to admit, I am in awe of the bond I see between you. Your dad is so enamored of you that he can barely speak of you, and your newest high-jinx, or latest accomplishment without becoming dewy himself.

You LOVE to read, and ask for your favorite books by name. Right now they are "Goodnight Kisses," "Daddy Loves Me," and "Horton Hatches the Egg." That one is a little long, but you are just as happy to laugh with me about this enormous elephant parked on a nest in a tree.

You're growing and changing in leaps and bounds, and have changed so many of us in such a short time. Unlike most of your peers, your story includes an element few of us know at age 2: WORK. To hear the challenges stacked against you could be overwhelming: Cerebral Palsy (lovingly known as CP), unilateral deafness, low oral tone, ocular muscle deficits. But the power of your spirit trumps all these scary names, Elliot. You are a tremendous fighter. Your loving therapists are among your many friends.

Ms. Chris, your PT, spends twice her alloted time with you each week. Both your eyes light up when you see the other. And you immediately say to her "Play!" Yes, she makes your work tremendous fun, and could fill the world with her belief in you. During the summer, she meets you for therapy in the pool. She is an angel to us, and a playmate to you. Chris has shaped our parenting and calmed so many of my fears by simply saying, "Just look at him, Emmy."

And between your OT, Speech, Special Instructor, and mornings at Br1ght school, you've got a busy schedule. But nothing is going to keep you for what you want to do. Right now, you're making tremendous gains in using your left and right hand together. You're clapping along to music, and using your hands for fingerplays. You "bring lefty to the party" on command, now, and work hard to open and close it as the situation demands. Counting has helped in this regard, and we're now saying, "Two hands. You have two, Elliot." And you look at that hand, and watch it move, as if you were controlling a puppet, and then, as it obeys, you smile so proudly and cheer yourself.

You're cheering so loudly. Can you hear us, Elliot? We're saying, YAY! Elliot. We love you Elliot. You amaze us, Elliot.

Thank you for being exactly who you are, Elliot. We love you. Being your Mama is such a gift.

Neurology Update

Elliot had his 6 month Neurology visit today. This is usually the appointment I dread the most...maybe it's the residual pain from our initial visit, or the lenghty wait room wait (usually 2 hours, then another hour in the actual room) or the fact that despite being a Children's Hospital, CH doesn't have wait rooms designed with children in mind, unless a TV is supposed to count. Or maybe it's El's cynic of a neurologist, although the more I learn about CMV, and the more I watch and learn from El, the more I realize his obligation to paint the picture of El's future with all of the possibilities...

The good news is our visit today was actually pleasant. We waited a mere 10 minutes (his first appt of the day), and about 20 in the room. The nurse who weighed, measured, and took El's blood pressure was a sweetheart, and gave him a zillion stickers. And our visit with Dr. Wong was pretty comprehensiveand positive. He seemed enthusiastic to see Elliot, and noted his growth and progress with, dare I say, optimism. Some of what we learned today:

• The loss of Elliot's hearing in the right ear was viral (not due to brain damage incurred in utero), and he has likely shed the virus (as determined by our pediatrician as well); therefore, it's unlikely that he will lose the hearing in his left ear. This doesn't effect our "testing every 3 months til he's 3" plan, but it's certainly good news.
• The generally moderate tone that we see in El's left hand and foot from the cerebral palsy may have the tendency to tighten as El gets older and goes through rapid growth spurts. It's important for us to keep him loose, and keep stretching him out. His PT who came to school this afternoon thought that this was really a non-issue.
• We only have to visit the neurologist once a year now because El is progressing so nicely! Yay! This is good news. We'll keep up with the preventative and observation visits with our other specialists, but I'm glad to cross an appointment of the list.

On our way out the hospital, we made appts for our 3 month hearing follow-up and the second opinion on the opthamology visit. I'm really hopeful about this visit. Each visit lasts between 2 and 3 hours because he comes in to observe the eye pre-dilation, and schedules the other parts of the exam after that. This is a standard practice, people! He's already better than our current guy, and we haven't even seen him yet.

We still have a visit with Thing Number 2 about El's eyes next week. We'll see what he thinks, but I've already kind of written him off. Does anyone out there know the protocol in seeking patient information for a second opinion? I'd like to know how to do this without any wierdness.

In other El news: it's likely Mr. Smarty Pants will be kicked out of the school for the deaf. He's meeting all their goals for him and has so much speech that they've dropped doing signs with him. This semester's goal was for Elliot to use three word sentences. He's at 5, with some wonderful subject-verb-objects, like: "I want more kisses," and "I want to go with Morgan." It's funny how we receive this news. I'd be happy for him to stay until he's five, but him not needing the services is supposedly a good thing.

And he's beginning his annual evaluation tomorrow. This process usually requires 3 visits of 3 hours with an objective evaluator (Battel test). In the month after that, we can expect the evaluation from the school system which will be trickier. Qualifying medically for services and qualifying in the school system are two separate things. The school system will only provide services that are necessary for El to be successful in a school setting. For example: Unless the high tone on his left side affects his ability to hold a pencil, and participate in the classroom, he won't receive services.

Another tricky thing: I tend to "low ball" El's abilities with the evaluators and doctors. I want to hear what the bad news might be, and I always want to get as many services as possible. This doesn't mix well with Proud Papa, who's so proud and inspired by our guy that he has a hard time not painting his abilities in rose. In any case, the evaluator comes often enough to make her own observations.

More news next week about these other visits.

Elliot's Eyes

Elliot's opthamologist really frustrates me. After the last appointment, and hearing "this is bad" two times too many, we're back where we started with the "wait and see."

Last visit, the nurse dilated his eyes, the doctor checked El out, then requested further dilation. The second examination is when the doctor shared with me that because El's eyes turn in, it's likely one or both will deteriorate (blindness is associated with CMV. Yes, this is the next place my mind goes when I hear this). Then the "this is bad, this is bad." Then me saying, "could you be less cryptic? WHat do you mean BAD? Can we do something about it?" Then he, "Oh yes, glasses, or surgery." Then me, "That's not bad. If there's something we can do, that's not bad." He "Right. Come back in 3 weeks. We'll do all this without dilation."

GROAN. Because he couldn't have popped in before this circus to check him out pre-dilation. Because he admits that this dilation sometimes exacerbates the eyes' tendency to wander.

And so, Friday was three weeks later. No dilation. He, Hmmm. Not as bad as I thought. We can just watch her and see. Me, He. His name is Elliot, you F***. Last visit you said things were bad. I was worried. I don't understand. He, well I was worried. We'll just wait and see. Me, that's what you told us last year. That's where we were before our last visit. He, If this deteriorates, then we may have to do something, but I think we're OK for now.

@#$&*()@#*!!!!!

My friend Holly is always looking for good doctors, and it's not until she asks her questions, that I begin to question our choices. Is it too much to ask that the dolt remember my child's gender, for christsakes? I know Elliot is quite the doll, but shit. And of course, all the confused and contradictory determinations do nothing but strip away at my confidence in anything he says.

So we're looking for another pediatric opthamologist. Not that I won't keep my appt. with this guy in two months. We all deserve better. And because we have these kinds of relationships, with Elliot's pediatrician, with my allergist, with Kevin's GP, with El's therapy team, we know how this should work. And this is not it.

Coming out of the Dark

The funk that was weighin' me down is leaving, and I'm quite relieved.


My visit with the social worker was good stuff. I've never talked to anyone, and the outcome of it was different than I had anticipated. First, I imagined that discussing my feelings would be an immediate unburdening. Instead, like any therapy, what I did was make the necessary work clear, with some tools to help. Lou recommended writing about my feelings for 4 straight days, 20 minutes at least at a time at the same time each day, and then letting it go. I have yet to do this. But am moving past my feelings, and have been sleeping, and feeling uplifted. Sleep makes a tremendous difference in my ability to be present and receptive to all the joy that exists in my life. I'm so grateful for those many nights of sleep...

What was so validating about my visit were such simple things-

-Lou acknowledging that "Yes" all that I've been through is hard. As an objective person on the side, he could look at it all, and say, "yeah, that's a lot, Emmy." Wow. Through my tears I had to acknowledge, "I don't know why that feels so good, but it does. Just hearing you say that."

-The simple statement that struggling through Elliot's health does not negate my love for him. That was such a gift. Wow. Being able to talk about how hard these challenges are, and how guilty I feel when I let the weight of it sink in was tremendously difficult. I didn't really want to open this can of worms. But I felt so relieved by Lou telling me that I can love Elliot and struggle with this all.

-Discovering that I've adapted something that I hated from my family: my dad's crazy obsession with dinner time ON TIME. I explained to Lou that I feel that I was spending too much time in the evenings at work. I then told him how much I LOVE my afternoon art time with the preschool, and rarely feel in a rush to leave. It's when I get home that I feel this self-imposed pressure to put my nose to the grindstone, and get dinner made by 6 pm. This intense rushing that I do gets in the way of the evening walk, or backyard playtime that the kids often want to do. I'm not even hungry when I'm doing this. As I answered Lou's question of "where does this come from" with "I don't know" I thought about my Mom's crazy rushing every evening, and my dad's petulant frustration if dinner wasn't made by 6:30. The lightbulb went off. Yikes! I've done so much to marry a man not like my father, but what have I done? Lou's comfort was so easy: It's easier to get rid of the dad in your head. It's a good thing you didn't marry someone with that expectation. It would be much harder to change him. So now I'm working on ejecting the dad in my head from our family traditions. Sorry dad. It's not working for me. (My dad doesn't know what a blog is. Otherwise, I wouldn't write about this).

I imagine if I was doing my homework, these good feelings would double. I'm going to try that tonight.

Elliot's hearing

3 month follow up!

Elliot's left ear is holding his hearing.

Ya heard?

Glasses or Surgery

Elliot's eye doctor told us today that he will either require glasses or surgery for his wandering eye.

Not terrible news...we knew that he'd need something. But after walking 2 blocks in the torrential rain with Elliot in arms, arriving dripping wet in an empty waiting room for 30 minutes, then hearing the doctor describe Elliot's situation as "Bad" twice, I'm in a damn pissy mood.

Needless to say that we'll be getting a second opinion...less for the advice than for a little bedside manner. That goes a long way with me.

Another revelation: I need to invest in a rain coat and umbrella.

CMV

What's that CMV stand for anyway?

Charming Model Valentine?

Campy Manchurian Ventriloquist?

No, it's CytoMegaloVirus, and you can learn all about it by clicking on the link.

I'm in the process of editing all my posts entitled "Elliot's Health" to include CMV. If you've found this blog by googling CMV, please visit the archived posts to learn about our story.

His is one of the faces of this condition or disease or impairment or whatever it's supposed to be called. Elliot is amazing, inspiring, and besides all that...he's the best of all: He's just a regular, beautiful kid.