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.