World Autism Awareness Day

I think of this blog almost daily and want to write, but I'm overwhelmed by the 9 months that have passed since my last entry, and my inability to ever catch up. But today, I am inspired.

Facebook is abuzz with autism awareness today. (One post I saw said, Everyday is autism awareness day in my house!) I'm writing this, my personal story to share with my friends, to demonstrate why autism awareness is really so important. 

I'll start with a story about Annie. When Annie was diagnosed with type I diabetes (coincidentally, 1 year ago today), she was admitted to the hospital to undergo a strictly prescribed treatment and so that we, her parents, could undergo an intensive education program. She was given a backpack by the Juvenile Diabetes Research Foundation with a teddy bear to practice giving injections. We were given a stack of informational books. She got 2 free blood glucose testing meters and 2 free injection pens. We left the hospital with a bag of medical supplies and went to the pharmacy and filled prescriptions for more. No copay. A pediatric diabetes nurse called us every day to check in, and we had a phone number to contact the on-call physician, 24/7, that we used several times when we had questions. We went to 2 diabetes education classes, an insulin pump class, we saw nutritionists, physicians, and social workers. We pay a $20 co-pay each time we see her endocrinologist (every 3 months) and I have to pay for her urine ketone strips out of pocket. They cost about $11 for a 6-month supply. When she is ready for an insulin pump, it will be covered. 

During Annie's first week of kindergarten, a teaching assistant, shared between 2 kindergarten classrooms, was in charge of checking Annie's blood sugar and giving her insulin. After she had 2 episodes of very low blood sugars, her school decided that she needed someone to be with her 1-to-1 to ensure her safety and in order to keep her diabetes from disrupting her education. Within another 2 weeks, the school hired a TA who is now in the classroom, lunchroom, on field trips, wherever she is, the whole time she is in school. 

Contrast THAT with THIS: 

When Lively was diagnosed with Autism Spectrum Disorder, we were sent home with a book: the First 100 Days of Autism. We were encouraged to enroll in a study through University of Michigan. It was suggested that we get Lively additional speech therapy and occupational therapy. We quickly found out that although our insurance allotted him 60 visits of speech therapy a year, it did NOT cover speech therapy in the case of autism or if services were offered through the school district. He was receiving speech therapy already through the district, through Early On, from a therapist who could not understand him, relate to him, or help him. We had no other options. ABA therapy (Applied Behavioral Analysis), the only intervention that has been scientifically proven to improve functionality, communication, and cognition in autistic children, was not covered by insurance, and costs $36,000/year for 15 hours/week. Speech therapy, through University of Michigan, costs $250/session. We found that we could get Lively some additional help, including his intensive feeding program, and some speech therapy, by enrolling him in Children's Special Health Care Services, a Medicaid insurance policy for which he qualifies due to his perinatal stroke and mild cerebral palsy. This costs us $250/month, and we still had to pay for Lively's intake appointments at the feeding program ($900) and well over $1000 in travel expenses. 

Annie's diabetes qualifies her for CSHCS as well, but ALL of her healthcare has been covered so far, so we have not enrolled her. 

Thankfully, as the Affordable Health Care Act has taken effect, we are seeing some changes. Although Lively has qualified for autism services through this new law since October 2012, we have not actually been able to receive ANY services yet. Hopefully, he will start ABA in May or June, and instead of over $3000/month, it should only cost us $400. It's not chump change, but thankfully, we can make it happen. We will continue to pay $360/month for speech therapy, because we have found a wonderful therapist who is really making a difference for him. Although speech therapy services are supposed to be covered for him now per Obama-care, they are not, in fact, covered yet. With his CSHCS premium, that brings us to a whopping $1010 per month to pay for Lively's autism. And this is for a family that knows it's way around the healthcare system, AND it's with new laws that "cover" autism services. How many families really have this kind of money? 

(A quick mention here about my guilt in having to work as many hours a week as I do, and how tired I am when I get home, and how I let my kids watch too much television because we're all too exhausted to do anything else at the end of the day. Perhaps I could afford to work less and spend more quality time with my family if over $12,000/year of my income weren't going to pay for services that are supposed to be covered by insurance.) 

Lively attends a special preschool with a program to help autistic children learn to communicate. In 1.5 years, he will be eligible for kindergarten. I have started looking into this, but the process is so overwhelming, mysterious, and anxiety-provoking, I can't think about it for longer than a few minutes before I have to give myself a break. Special Education services are constantly changing in the school district, and largely due to a huge budget deficit, none of these changes are for the good. I'm not sure what he will need, and I'm really not sure what services will be made available to him. Let's just say, there is NO chance that he will be quickly offered a 1-to-1 teaching assistant to guide him through his day. My guess is, we may see an increase in that $1000+/month to supplement services and hopefully get him in a position to be able to participate in a general education kindergarten class. 

And so, friends, I hope this has convinced you of the need for more autism awareness. Spread the word.

To my sweetest boy on his third birthday:

Dear Lively,

You are 3 today! 

What a year we have had. I had hoped to chronicle it more thoroughly throughout the year, but we, as a family, are worn out. Instead, I will summarize your year here and now.

You started school! You started at the same preschool Annie attends in September. Here you both are on the first day of school.

I am amazed at how much smaller you both look; when I remember this day, it seems like it could have been last week. For the first month, Daddy and I were worried sick when we picked you up and found you right where we had left you, sitting by the front door of the classroom and twirling the propeller on the toy plane. But then you made friends! Your class is full of sweet little 2-year-olds who love you, and I think that you have learned a lot from them about how to play, how to communicate, how to be part of a group. Things aren't easy for you, and I know this, and it breaks my heart each time I understand it a little more. But you are happy there, and I am happy for you.

You continued with unbelievable amounts of therapy and interventions throughout the year. These included:

• Early On, 2 times per week
• An intervention study through University of Michigan, once per week through December, and 3-4 times per week beginning in January
• Occupational therapy, intermittent
• Speech therapy, once per week
• Intensive Feeding Program, daily, for the last 7 weeks, with 1 week to go

The accumulation of all of these appointments (as well as Annie's new diabetes and all that entails) is what has made our family so tired. But I will save those stories for another day.

Things you love:

1. Elmo. You have loved Elmo for a long time, as did your sister before you. I can't really remember how it all started, but I suspect it was with an episode of Elmo's World. You dressed as Elmo for Halloween (Annie's old costume), and at this point, you require Elmo's World to nap at home or to go to sleep at night. Because you are still at the feeding program in Grand Rapids, Daddy and I often have to use Elmo to occupy you so that we can have a meeting with one of your providers, or make a phone call, or go to the bathroom. So you are addicted to Elmo. I suppose there could be worse things. 

2. Signing Times. This is the only other show you really watch, and I continue to be impressed with how many signs you know. You also love the songs and watching Rachel teach the signs, and I think it's great.

3. Car race, aka Cars, the movie. This is a fairly new development, since starting the program in Grand Rapids. You could watch both Cars and Cars 2 multiple times a day. We gave you a "car race" racetrack for you birthday today, and it was a big hit with you and Annie both. 

4. Annie. 

You love Annie so much you don't quite know what to do. Sometimes you are so excited to see her that it overwhelms you and you sort of lash out and hit her. (She does not appreciate this.) You kiss her and say "sorry Annie" when she is sad, even if you did the thing that has made her sad. You want to be with her and play with her all the time, but often you express this by running through whatever she is playing with and knocking it down, or destroying something she is drawing. You miss her when you are away from her, and you are delighted to see her when you are reunited. (She is delighted to see you too, although sometimes she tries to hide it.) You share a room with Annie, and you won't fall asleep until you can see her in her bed. 

5. Your bike. We gave you a bike for your second birthday, which you have completely outgrown but won't let go. You have a bigger bike we are trying to encourage you to adopt, and although you like it, you LOVE your first bike, despite the fact that your knees almost drag the ground when you ride it. I suspect that when you switch to the big boy bike, you will fall equally as in love with it.

6. Daddy. Daddy has been your parent of choice for about the last year. You started having a lot of one-on-one time with Daddy last summer because his work schedule allowed him to be with you for the majority of your appointments through the research study at U of M. I feel sad knowing that my job responsibilities have taken me away from you, and from Annie and Daddy too. 

7. The park. You love to slide! To swing! To climb! To jump off tall things and land in the grass! And every single time I see you do these things, I remember that there was a time that we didn't know if you would ever be able to walk. 

8. Lion. Lion is a new friend -- you appropriated him from Annie's no-longer-wanted toys. You and Lion have been inseparable since we've been in Grand Rapids.

9. Screaming! You have an ear-piercing scream that you use mostly to express joy and excitement, and occasionally frustration and fear. Usually I hear this sound and know that you are happy. But this scream, if released in public, draws angry and judgmental looks from people in the vicinity, and sometimes rude and hurtful comments. I love your unbridled joy. I am disgusted at how intolerant others are of it. 

You have been so busy this last year, and you have learned so much. I desperately want the world to be an easier place for you, but so far you are living in it happily. May you continue to be so happy my darling boy. It is what I want the most for you, for Annie, for all of us.

I love you with my whole heart,

Mama

First, some updates

I'm writing from Grand Rapids at the end of Lively's first day at the Intensive Feeding Program. More on that in a post I'm planning to write after this one. We've been beyond busy the last few months (in fun ways as well as some not-as-fun ways), so let's get up to speed before the feeding program takes over this blog for the next 2 months.

We dedicated April and May to diabetes. My amazing department at work (and the most understanding, generous, and downright lovely coworkers) allowed me to take some time away to take care of Annie. I had a few overnight calls which were mostly covered for me by partners from my group who was on call the same nights (thank you, thank you, thank you!), and I continued to see patients one day a week for breastfeeding. Overall, my partners picked up much of my clinic time so that I could be with Annie, and I will always be grateful for their willingness to help me.

Pete's mother and sister were able to come with me to the hospital-led diabetes teaching classes, both for moral support, and to learn about counting carbohydrates, giving insulin, diabetes emergencies . . . it was basically a type I diabetes crash course. I was able to teach Annie's preschool teachers and other school staff members about diabetes and how to take care of Annie. She is so young to have this diagnosis that the preschool hasn't had another diabetic kid in years, but the school staff were absolutely amazing in their willingness to learn about this with us. After a several weeks, Annie was able to go back to school for full days without needing me to come for meals, snacks, or blood sugar checks, and I think everyone is pretty comfortable now. Pete and I stay available by phone when Annie is at school, and her teachers call often with questions, which is exactly what I want them to do.

So our diabetes routine is coming together. Weekdays are structured, so I pack her meals and snacks and send them with her to school, and I pre-calculate her insulin dose, because for better or for worse, I don't trust anyone to do the math but me. One day I'll have to let that go, but that day is not coming anytime soon. Weekends are tough. We've been trying to do some fun family and friend things, but the unstructuredness of it, and the inability to stay on top of Annie's activity level and diet make me really nervous. Annie can drop her blood sugar really low, really fast, just by running around outside, chasing Lively or riding bikes or playing at the park, so I have to check her blood sugar before and after any kind of exercise, and sometimes in the middle as well if she's out more than 30 minutes or so.

Example: the first Sunday in May is the Water Hill Music Festival in our neighborhood (2nd annual this year!) Any household can sign up for a particular time to play music on the front porch or yard, and no one needs a permit because it's legal to play on your porch. There is a schedule and hundreds of people wandering around the neighborhood drop by at the scheduled time and listen and dance and sing along. Pete and I think this is a really cool perk of living where we do, so we wanted to participate this year. Some friends with actual musical talent came over and played fun sing-along kid and kid-at-heart songs, and we put out lots of musical instruments and various things to shake or bang or blow into, and a bunch of friends showed up as well as tons of people we didn't know. The kids loved it, the day was beautiful and everyone stayed outside and it was great. Except that I was so worried about what/when Annie was eating and how much she was running around that I was on edge the whole time and couldn't relax and enjoy myself. I find myself feeling that way a lot on the weekends, so much so that sometimes I feel like the week is easier, which is a terrible and stupid way to live.

Here's a photo of Lively at the music festival. It really was fun. Feel free to come by next year, and hopefully I'll have my head on straight by then.

Despite his adorableness in this photo, Lively was pretty overwhelmed by so many people and the loud music, but he held it together as best he could.

In other Annie updates, she is generally feeling a lot better now that her body can actually get energy from the food she eats instead of allowing glucose to build to toxic levels in her blood while the rest of her cells starve! She gained 4 pounds in the first 3 weeks on insulin (she had lost weight and was way too skinny prior), and for all you medical people out there, her hemoglobin A1c, which started at 11% (!!!) was down to 8.7 after 3 weeks. We're shooting for 7-8% at next check, and 7% after she turns 5 at the end of the summer. 

Annie had her second ballet recital this month, and I sat 3 rows back with tears streaming down my cheeks the whole time she was on stage. We weren't allowed to take pictures during the performance, but here's one I like from the rehearsal the week before.

We really try to avoid the princess thing as much as we can at home, so of course Annie was overjoyed to be able to dress in a lavender tutu with tiara and diamond necklace. The day before her recital, her class at school had a come-dressed-as-a-princess, knight, or dragon-day, and I could not convince her to dress as a dragon, so we went with this:

I tried to convince her to let me put green makeup on her to be Princess Fiona from Shrek, but she would not have it. She couldn't stop looking at herself in the mirror, spinning around, and saying, "I look so beautiful Mama!" And she did. She was so happy!

Annie is doing very well with the blood sugar checks (she's able to do it herself, with just a little instruction from us now) and all the shots, but she's having a hard time too. Her diabetes rebellion is manifesting itself in temper tantrums that take us by surprise completely, and a basic refusal to do anything I ask her to do. I suppose this isn't surprising. Unfortunately, her difficulties adjusting to diabetes combined with my overwhelming stress are not working well together. I am having a lot of trouble staying calm and not yelling, and many days I fail miserably. This of course, leads to more guilt and stress about not being the mother I want to be for her, which continues the vicious cycle of depleting my emotional reserves so that I am perhaps even more likely to blow up at her the next time she acts out. Bad, bad, bad. I have stopped waiting on the front porch for our mailman to deliver my mother-of-the-year award. It's not coming.

So ok, lots of stuff has been happening with Lively too, but I just can't go on anymore tonight, so instead I'm going to insert this picture of him learning how to balance on his big boy bike. Most days he insists on the toddler bike we got him last summer, even though his knees are close to scraping the ground, but he's getting more interested in this bike, and I'm so very proud of him. When I see him do this, I can't help but remember that 15 months ago, we weren't sure if he would ever walk. 

Tomorrow I plan to update with accounts of Lively's first 2 days in Grand Rapids. Right now he looks like this, which is a very good thing:

Here's hoping that I will find a way to fall asleep sometime tonight as well.

Highway Lively Becomes Highway Pasque

I've been a little worried about Annie for awhile. In the last few months, when friends asked me about her, I said she's fine. And she was, for the most part. But a few things were bothering me.

• She hasn't been having a great year at school. Her last 2 years at the same school were wonderful, and she woke up excited to go every morning. Lately she's been telling me that she wants to stay home.
• She's really skinny. She's growing in height rapidly, but she seems to be getting skinnier. Her pants that fit her waist are much too short, and the ones that are long enough fall down because she's a waif. Perhaps that is because . . . 
• She hasn't been eating well. Many nights it was a struggle to get her to eat even a few bites of her dinner. I chalked it up to 4-year-old picky eating.
• She's pale, and has dark circles under her eyes that look like bruises. This crept up so slowly that it's only now and looking back that I can see the change in her.
• Her general mood has been different. She's been irritable, and fussy. Sometimes she's over-the-top hyper and can't calm herself enough to put on her pajamas.
• She started having accidents again at nap time. She had been dry for many months, and lately I've been putting her in a pull-up again.
• A few months ago, she was dry a couple nights per week. She still wore a pull-up to bed, and more than half the time it would be wet in the morning. But the last couple months, she's been waking up with a soaked pull-up, drenched pajamas, and wet sheets.
• Three or four weeks ago, she started drinking water like crazy. We went on a 5-hour trip in the car, and she drank 5 or 6 cups of water. We, of course, stopped every 45 hours for her to go to the bathroom.
• She got a rash that wouldn't heal after several weeks. At first it came and went, and then it came and stayed and worsened.

These things happened so slowly, over many months, that it took me awhile to realize they weren't just phases she was going through. And then last Monday, it hit me and I just knew what was going on with her. We took her to the doctor on Tuesday, and it turns out that I was right.

Annie has type I diabetes.

Here's a picture of Annie in the Emergency Department after her visit with her pediatrician. 

She was admitted and we stayed for 3 days. They sent her home with her blood sugars still in the 400s persistently. Here she is in one of the Child Life rooms in the hospital.

This is the insulin-requiring diabetes. It cannot be controlled with diet and exercise. Her pancreas stopped making insulin, and her body cannot turn her food into energy without insulin, so we now give it to her in shot form 4 to 6 times per day. There is no other treatment at this time, and unless one is developed, she will need insulin injected in some fashion for the rest of her life.

We prick her finger to check her blood sugar at least 5 times per day. One of those times is at 3 am. If her blood sugar is low during the night, I might check her several times.

I'm reeling. Pete is too, although he's confident that everything will be fine, so he's holding it together a bit more than I am. Annie is fine, for the most part. She keeps a book and puts check marks every time she gets a shot, a finger poke, or some other medicine, and making these check marks is great motivation for her right now. She sets up her glucometer, and puts her little drop of blood on the strip that reads her blood sugar. She chooses which finger to poke, and where to inject her insulin each time.

I felt like we were barely getting by with everything Lively needs and now this. I'm not sure how to find enough hours in the day to take care of my children anymore. And I'm not sure why this is happening to my family. I can't believe there's a reason behind it. 

Big L's updates

There are many updates, and once again, I've waited so long to update the blog that it has become an almost unmanageable task. Here is what has happened, in a nutshell.

1. Feeding program

On December 1, we finally made it to the Intensive Feeding Program at Helen Devos Children's Hospital in Grand Rapids for the long-awaited eating evaluation. (See previous Dear Doc entry.) They were great. First of all, they were appalled at how long it took us to be seen there, and demanded to know who I had talked to that had been so rude on the phone with me (read: made me cry) so that they could address the issue. It should have taken only 2 to 4 weeks to be evaluated from the time the referral was made. It took us a year.

I was very impressed with the facilities. Finally, a place that is set up for special needs kids! The waiting area was full of toys, comfy-ish chairs for families, big-screen TV, train table, play kitchens, lots of windows and light. When it was our turn to be assessed (a 3 hour process), we went to a smaller room that was set up like a kitchen. There were 2 large 2-way mirrors on the walls, and after the team members introduced themselves (social worker, neurodevelopmental specialist, psychologist, occupational therapist, nurse practitioner, and there are more we didn't meet), only 1 or 2 came in at a time to interact with Lively so that they didn't overwhelm him. The rest watched behind the mirrors. It worked so much better that other assessments during which he has been bombarded by multiple strangers at once. Lively was also really tired, had skipped his nap on the 2 hour drive from Ann Arbor, but he managed to hang in there and complete the evaluation.

The pediatrician did a full physical, and she remarked when she was moving his feet around that he was "loosey goosey." When she tested his reflexes, he was hyperreflexive in his left arm and leg. I've seen that test performed on him many times, and this was a new response. The OT pointed out that when Lively chews, he isn't really using the muscles in the left side of his mouth in a coordinated way.

After 2 hours of testing, they spent almost another hour going over what they had noticed about Lively and what they suggested for him.

(Here's a video of one of the first times Lively was able to spear little pieces of Boca chicken nuggets with his fork and dip them in barbecue sauce. It was a proud moment!):

2. Cerebral Palsy

The bottom line is that Lively has cerebral palsy, and it is causing his eating problems.

Lively is not quite ready for snowboarding yet

We knew about the possibility of CP for Lively since he was diagnosed with his stroke. He has always had some left-sided weakness, but he has compensated well, and unless you're looking for it, you probably wouldn't be able to tell by watching him. But he does have a much more immature grasp with his left hand, and he's certainly not good at manipulating small objects on the left, but he can pick up things, turn on the lights, stabilize a bowl so he can feed himself with the right hand. His left leg has always been a little unsteady, but he walks well, and he runs. He can jump, and he can squat down and stand back up without falling over. When he runs, he has a funny gait, and he does a funny posturing thing with his left hand and arm, but if you saw it, you would probably just think he has an adorable little quirky run.

Evidently, Lively's run is "classic" for CP.

This summer, Pete and I also noticed that when he rides his push-bike with his helmet on, it seems like his head is too heavy and it falls to his left side. We have known a long time that Lively can't coordinate chewing and swallowing, but it had not occurred to me that he can't eat because he has muscle weakness due to CP. I actually thought that maybe we were never going to get the official CP diagnosis because his left arm and leg work pretty well. But his chewing and swallowing aren't working well at all.

CP explains a lot though, and it's a better diagnosis than a recurrent stroke, which is what I was afraid of. A stroke at birth is not likely to reoccur, but if he had a second stroke, he would be likely to have more. So the CP diagnosis is a missing piece to the puzzle. Lively's medical history makes a little more sense to me now.

HOWEVER, I am beyond frustrated that we have seen every specialist at U of M, multiple physical, occupational, speech therapists, a neurodevelopmental pediatrician here, a neurologist, a surgeon, people who treat CP kids on a regular basis, and NO ONE HAS EVER SUGGESTED THAT THIS MIGHT BE WHY HE CAN'T EAT. I have previously had a lot of pride in this health center. I work here. I have thought of U of M as the place to go if there's something very wrong and complicated going on. But now, all I can think about are the hundreds of appointments where this not-uncommon diagnosis that unifies Lively's constellation of symptoms has been missed. U of M, you let me down.

Lively is now on the waiting list for the Grand Rapids program. Currently, the wait is over a year, but because of the run-around from the person who coordinates phone calls and appointments, the team is going to try to get Lively in closer to 6 months from now. No guarantees.

The program lasts around 8 weeks and is for 5 days a week from 8 am to 5 pm in Grand Rapids, 2 hours away. This means we're going to have to split up our family so Annie can stay in preschool or kindergarten in Ann Arbor, and so Pete and I can still work as much as possible. We don't really know how we're going to do this, but we'll find a way. We will probably have to live in the Ronald McDonald house in Grand Rapids with Lively for 2 months. I am really looking forward to improving Lively's ability to eat, but I am dreading our family having to live apart.

(Despite the CP diagnosis, he gets around very well!):

3. Speech therapy

We're focusing on Lively's communication right now. He is making quick gains in our minds, but when he is formally tested in receptive and expressive speech, the gap is widening between his abilities and those of his peers. I stopped keeping track of his words months ago, because he suddenly had so many that I couldn't keep up! Now he's starting to put 2 words together, and sometimes even more. A couple days ago he brought a toy in a box over to me and said "Help open please." He got lots of big kisses for that performance.

Lively gets speech therapy through Early On 1 or 2 times a week, although I don't actually think that therapist is helping him much. He also has a new therapist through U of M who has experience working with autistic children, and I have hope that she'll help him. I'm also attending the Hanen Program for 3 hours, 2 nights a month, which is a special program to help parents encourage speech and communication in their autistic children. I like it, and it's giving me some good ideas. But as I was sitting in the class Tuesday night, watching video examples of parents struggling to have a meaningful interaction with their autistic children, I was struck (again) that this shouldn't be so hard! I was in a room full of parents trying to learn how to play with their children, spending long nighttime hours studying how to do something that is supposed to come naturally, but that isn't. We should have been home with our families or in bed, but instead we need this instruction on how to take care of our kids. It sucks.

(Still new words everyday, like CHEESE!):

4. Autism (more)

We have been involved with a study through U of M for the last 9 months that has basically been a weekly playgroup. Pete and Lively go every Friday. The second leg of the study starts now, and it involves 2 home visits a week, 1 clinic visit a week, and 1 videotaped play session at home a week. Yes, our already booked calendar just got 4 more appointments a week. We're going to give it a try. But we're overwhelmed just thinking about it.

I met a very nice woman in the Hanen class this week who was telling me that she and her husband decided that she would stop working for the next several years so that their family could fully dedicate themselves to helping their son. Pete and I need to find a way to do that so badly, but I just don't see how we can. We rely on both of us working to get by right now, especially with the multiple extra expenses for Lively each month. But sometimes I wonder if we're all going to make it through with our sanity intact. It feels like our household is balanced so precariously, that if the wind blows just the wrong way, we're going to just fall apart.

5. Autism preschool

I think I'm going to have to get into this more later, but in short, we were told Lively could enter an intensive 5 day a week preschool program that focuses on social communication this month. We have met many families whose kids are in this program through our involvement with various other autism-related groups, and they all are so happy with how the preschool is helping their children. Lively was going to be allowed to enter early (at 2 1/2 instead of 3) because the Early On folks thought he needed more help. Now they say he has to wait until next fall. I met with the principal of the preschool this week, and we're working on trying to push our way in.

6. Annie

All of this is hard on her too. We're not able to focus on Annie, and she needs us to sometimes. Her brother hits her and pushes her all the time, for no reason she can understand (or that we can understand). And her teachers at her preschool right now just aren't as good as the ones she had the prior 2 years. I'm looking for some things that she can do that are special -- she wants to take ballet again, so I'm going to try to do that for her, and she also wants to learn how to swim, so we might try to do that too. But did you read the part above about Lively's 8 appointments each week? *Sigh*

Dear Patient with a Birth Plan:

I understand that being pregnant for the first time is a new and scary experience. I understand that you are a motivated, educated woman who takes charge of your personal and professional lives. I respect that. I relate to that. And I understand that in the face of something that is new and unknown, an experience to which you may have been looking forward for many years, you have ideas of how you want things to be. You probably single handedly planned your wedding down to the last detail, paying for most of it yourself, and it all went off without a hitch. Maybe you got pregnant right away, or maybe you struggled through some months or years when you thought it might not happen for you -- but then it did, and now, here you are, getting ready to deliver your precious infant and take him/her home to a nursery outfitted with shiny new furniture, filled with carefully laundered layettes and the whitest of white new organic cloth diapers.

Throughout your pregnancy you have avoided caffeine (despite the fact that I told you it is safe to drink two 8 ounce cups of coffee each day). You have not taken Tylenol for your headaches, although I recommended that you do so. You have taken birthing classes that have focused on the risks of medicated labor and childbirth. You have downloaded and filled in a 4 page birth plan. You have planned your delivery.

You don't want an IV. 

You don't want antibiotics even though you have been found to carry group B strep.

You don't want fetal monitoring.

You want your partner to deliver your baby.

You don't want an episiotomy, a vacuum extraction, or a forceps assisted delivery.

You don't want the cord clamped until it stops pulsing.

You don't want a c-section.

You don't want your baby to have erythromycin eye drops or a vitamin K shot.

You don't want your infant to have hepatitis B vaccination.

You want to breastfeed exclusively.

You probably also didn't want nausea and vomiting during your first trimester, heartburn, back pain, constipation, hemorrhoids. But you got all of those things, and you made it through just fine.

Do you know what I want? I want my 2-year-old to wear mittens when it's cold outside. Before I had children, I was absolutely sure that I would not allow my 2-year old to make a decision about mittens for himself. And now, I can pin my toddler to the floor and force mittens on him while he screams, and the second I let go of him, the mittens come off. I have no control. And that's parenthood for you.

Go ahead and give up your ideals about parenthood now. You don't get to control the labor and delivery process any more that you can control whether or not your baby will wear mittens when he is 2.

You need an IV if you are in labor. If you start to hemorrhage, I can give you medicine to stop your bleeding. I can give you blood to save your life. My anesthesia colleagues can put you to sleep if you have an IV so that I can do a procedure to stop your bleeding. If you don't have an IV, my ability to help you is limited.

Do you really want to rush your septic infant to the hospital at a few days of life for blood cultures, catheters, lumbar punctures? (I have done this with my newborn, twice, not related to group B strep, but trust me, it is terrifying and you don't want to do this.) Treat your group B strep. You have entrusted your care to me and I feel this is an important part of keeping your baby safe. I have studied and trained for over 12 years to come to this conclusion. Just take the ampicillin.

I have reviewed the literature on cord clamping. There may be some benefit in letting the cord pulse for 2 minutes after delivery. Longer than that, there is not benefit and there may be some harm. Look at the sources of your information before you make this demand. Trust me over the random baby blog you found online.

If your baby is in distress, I may recommend a c-section or an assisted vaginal delivery. I do this to protect your baby, to give you a healthy child, not to ruin your birth experience. I have a child with cerebral palsy. You will be happier if yours does not. In fact, be grateful if yours does not.

If your baby is breech, or if you are in labor for 3 days and your cervix has been dilated to 9 centimeters and your baby is facing forward and not budging, I will also recommend a c-section. I will not recommend a c-section unless I think you really need one. I am not just trying to ruin your plan -- I am actually offering to protect your health and your baby's health. 

Don't even get me started on vaccinations. Just talk to your pediatrician. I just can't go there.

I am one of the biggest breastfeeding advocates you will meet. I have devoted part of my career to helping women breastfeed. If your baby loses too much weight after delivery, if he is lethargic and not able to take in enough nutrition at the breast, if your milk doesn't come in for 6 days, I may recommend that you supplement with formula. Your baby cannot learn to breastfeed if she is too weak to latch or to feed for long enough. Your baby needs nutrition to grow, to be healthy, to live. If she cannot get enough from you, she is going to have to get it somewhere else. I will try to help you with your breastfeeding difficulties, but sometimes you have to give formula, at least for a little while.

If you go into your labor and delivery with an open mind, and if your only goal is to have a safe delivery for you both, you will probably not be disappointed. Don't worry about whether or not you want an epidural now. It's a safe treatment for pain in labor, and it's available if you need it. If you don't want one, no one is going to make you have one. Get your IV, just in case. We rush women to the OR for unexpected and emergency c-sections every single day around here. Just get your IV, and maybe you won't need it, but if there's an emergency and you do need it, you are going to be very glad you have it. 

Having a c-section is major surgery, It sucks. I've had 2. I didn't like them. I recovered just fine from them though, and I am no less a mother because I missed out on the unmedicated birth. 

Your delivery is just one instant in the parenting of your child. For most mothers and babies, it is also the most perilous instant in their lives, which is why we have hospital births, and trained, medical birth attendants. But delivery lasts for a second, and it's over, and then you move on to the rest of parenting. And please believe me when I tell you that you will have no more control over your children later in life than you will have over the labor and delivery process. Think of labor as preparation for motherhood, and just give up control. Your baby may not wear mittens either, and there's not a damn thing you're going to be able to do about it.

A letter to Lively's class

Dear parent of a healthy "normal" child in Lively's preschool class:

I understand that it is completely normal that a 2-year-old would be curious as to why his new friend at school gets some food, water, and medicine through a tube in his belly. Your child has probably never seen anything like this before, and it may seem funny, or weird, or even a little scary to him.

But you're a doctor, right? So in all your years of training, you must have learned that some people can't eat or drink everything they need with their mouths. And certainly you must want your child to grow up showing compassion and love and friendship to others, even others who may have one too many holes in their bodies. Surely you can explain these things to your child at home, and you can teach him that Lively is a happy, playful, fun, and loving little boy even if he has a small physical difference from your child.

Surely you wouldn't come into Lively's classroom, telling his teachers that your child is coming home telling stories about Lively getting fed through his stomach, and what's the deal with that anyway? And don't the other kids and parents deserve an explanation?

Oh wait. You did do that?!?! You think the class, the school, needs an explanation of what Lively has been through the last 2 years of his life?

Well, go f#@% yourself.

Sincerely,

Lively's mama