Ben scheduled to see developmental pediatrician

Ben will be evaluated by the Pediatric Neurodevelopmental Clinic here in Anchorage.  It is quite the process, and I am feeling guilty that Liam didn't get as thorough of an evaluation as Ben will receive.  There are a total of 5 appointments over the next couple months.  First, Ben will be evaluated by an Occupational Therapist for OT/sensory issues.  Then he have a speech evaluation with a SLP.  Then he'll have testing done.  After that, he will meet with the developmental pediatrician.  After all that, Dave and I will meet with the developmental pediatrician so he can tell us his findings.  The good news is that I should feel confident in the results after all of that. The bad news is that he does need to be evaluated at all.

Bit by bit leaving the baby years behind

This is as close as I will get to a baby for a very long time:

Last year we made a decision to not have anymore babies.  At the time we decided that, Ben was 18 months old and was not yet sleeping through the night.  It was nearly 2011 and I hadn't slept through the night in nearly 4 years.  Dave was particularly done; he said living with Liam and Ben was more stressful than living in Kabul.  Dave was very done.  I knew I wanted another baby but only if it came with a 100% guarantee of no reflux or colic and I knew sleep would be better than it was with either of my boys.

Making the decision to be done changes your outlook as every milestone is a step away from babyhood.  I went through Ben's first year and a half just surviving and not cherishing any moments as I thought we'd be done the babyhood path again.  Since then, I am holding onto eveery moment as I will never again have a little one.



I am mostly happy to say good-bye to the non-stop physical demands.  I still need to dress Liam and often need to feed him to get him to eat.  Ben still wants me to carry him around the house and many place.  It isn't realistic to imagine I could handle a third.  Liam has significant delays and Ben still doesn't say his own name at nearly 2.5 years old.  It is very unlikely to think a 3rd child wouldn't also have developmental delays.  I know it was the right choice for us, and most of the time I am happy but every once in awhile I wish I had a different life.  A life where my husband was only out of the house at work 10-11 hours a day, a life where I lived near family to help, a life where babies slept 8-10 hours at night by 6 months and actually napped, a life without non-stop therapy.

Ben is done nursing.  He only nursed once in August and has changed his bedtime routine so it isn't even something he thinks about.  I will hold onto the memory of nursing him in June and him growing heavy in my arms and falling asleep.  It astounds me to think I will never again nurse another baby so this milestone is bittersweet.  I am sure I'll be much more excited when the milestone is potty training.

Back to school

I survived the summer!  It was a serious question whether I would. ;-)  Back to school encompasses a different set of challenges and we will be busy the next few weeks settling into our new schedule. 

This year Liam will be going to TWO different preschools.  In the afternoons, he will go to the public special education preschool where he went last year.  The program is 5 days a week, for 2 hours a day.  In order to accomodate his crazy therapy schedule, he will miss class one afternoon a week so we can drive downtown for his private OT and speech therapies.  He started the special education preschool this week, and was so excited to be back.

Today is his 2nd day back and so far, so good.  I am adjusting to the new bus schedule as he gets picked up right when Ben goes down for a nap.  Liam is adjusting as well as his class this year is a totally new set of friends.  In addition, his teacher had surgery so he is starting off the year with a long-term substitute.  On top of that, the school's SLP retired, so he has a new speech teacher at school.

Today we met with his morning preschool which is at a local church.  This preschool will meet 3 mornings a week for 2 hours and 45 minutes.  The class will be quite larger than anything he has ever been in before.  When he attended Mother's Day Out in Alabama, his class was never larger than 6-8.  His special education class has always been 6 or fewer children.  This new preschool will be 15 kids and only 2 teachers.  The meeting today was with the director, the teacher, teacher's aide, Liam's BCBA (ABA program manager), Liam's ABA tutor, me, Dave, and the boys.  The plan is to have his ABA tutor there the whole time class is going on, unless she is sick.  She will manage any meltdowns and will help Liam navigate any social situations.  This school has a Montessori feel to it.  The classroom will have various stations and the play/work is child-initiated.  I think this set up will be perfect for my stubborn strong willed preschooler.

In addition to two preschools, Liam will be returning to his Tumbling class, have individual ABA, private speech and OT, and hopefully have time left over to just be a 4 year old.

Ben is not in school, but will also have a school based schedule.  Starting in September, Ben will be doing a social skills group that is sponsored by Early Intervention and held at the center where Liam does therapy.  The class will have 4 parts: tumbling (gross motor), creative movement (music), circle time (social skills), and snack (feeding/social skills).  Half of the class will be receiving services from Early Intervention and have some sort of delay and half the class will be typical developing toddlers.  I know Ben will love the tumbling and creative movement portions as it will be the same stuff Liam does during his class (which Ben imitates).  I know Ben will struggle in the circle time as I have not been able to get him to sit in any type of group circle, much less participate.  The instructors will be prepared for that though, so I am not too worried....I just know it will be challenging for him.

In addition, Ben will continue his OT through Early Intervention.  I talked with his therapist today and sometime in October, we will start discussing a transition plan.  Ben will either graduate from Early Intervention or transition to the school district as Liam did at age 3.  If he transitions to the school district, he might have a teacher work with him at the house, much like Early Intervention now or he could qualify for special education preschool like Liam.  They do not evaluate until 2 years 10 months, so we won't know placement until next year. 

I spoke with the developmental pediatrician's office and it was decided that Ben needs to be seen and it sounds like he will get in before the end of the calendar year.  Lately, Ben has been toe walking more and he seems to be shutting down a lot more.  He has recently become afraid of baths and just sits in the tub, staring down, scratching his legs until they bleed, and screaming if we present him with any toys.  When he isn't shut down due to overstimulation, he is delightful.  His tantrums are decreasing and he has started using deep breathing to control his emotions.  He is trying to communicate more every day.  He is not at all interested in children, but seeks out Liam to play with at every opportunity.  I have alot of anxiety and fears over his development.  We only recently began to see his sweet smiles and I want to make sure they don't disappear again.

A superhero/dinosaur themed birthday party

Dinosaurs and superheros go together, right?  They certainly did at Liam's birthday party.  We gave out superhero capes as party favors and made superhero masks as an activity.  Then for the cake, it was dinbosaur themed, per Liam's request.  Even though it was small, it was a bit wild with 3 kids on the spectrum running about, 3 year old NT twins, and two 2 year old little brother's.  I think Liam had a good time and Ben was so wound up that he took FOUR hours to fall asleep (not until after 11pm).

4 years old today

At 4 years old, you are 41 inches tall and 39 pounds.  You finallly speak in complete sentences.  You love trains and dinosaurs and your baby brother Ben.  You know how to ride a tricycle.  You know all your phonic sounds and recognize patterns.  This year you knew the date of your birthday and know the days of the week.  You have friends and can tell me who they are.  You are polite and loving and always say things like "please" "thank you" "I love you" and "this is so much fun!"

You have come so far.

I remember a time when you did not like any food and were angry people sang to you.  Unlike this year, when you picked out your cake and cake flavor and know all the wordsto Happy Birthday.

I remember a time you were in your own world, refused all eye contact, could care less about presents, and I felt devoid of all hope.  Unlike this year, when you are demanding presents and asking when your friends will come over.....and I know that there is every reason to have hope and I am no longer scared of your future.

I remember a time that we were excited that you could manage the stimulation of a party even if it meant you would ignore your guests.  Unlike this year when we kept your stimulation to a minimum so you could focus on your friends.

I am excited to see how you will change in the next year and look forward to the future, for the first time in a very long time.  Happy Birthday, William Francis Xavier Routhier.  Mommy loves you more than you can ever understand.

Odds of autism in siblings and other anxiety evoking thoughts

A recent study was released yesterday showing that odds of autism for children with a diagnosed sibling are significantly higher than once thought.  I blogged about the odds here and felt a bit twitchy about Ben having 1 in 20 odds of a diagnosis.  This new study shows that 19% of children with a sibling on the spectrum will also receive a diagnosis.  When talking about boys, that percentage is even higher....25%....a 1 in 4 chance.  I heard about this earlier in the day while dealing with a puking Liam, so I kind of shoved it to the back of my brain.  Then last night Dave comes home having heard this study on NPR and Dave is shaken and tells me how anxious it makes him.  Dave is a rock; little worries him.  In our relationship, I am the one who does all the worrying, and if he is worried, then there is a good reason.  Honestly, those odds scare me so much that I sti;ll don't have the ability to think about it too much.

I STILL haven't heard from the developmental pediatrician...the only one in Alaska that Ben was referred to months ago.  Several weeks ago, Ben's OT through Early Intervention said he contacted her to ask her opinion, which was that Ben needs an evaluation from a specialist.  I have talked to Liam's BCBA about Ben and she said he reminds her alot of her oldest son who was diagnosed with Asperger's at the age of 7.  In my heart, in my gut, I still think he doesn't meet the criteria for being on the spectrum and just has sensory issues at play, but I am not exactly an uninvolved party.  When I am honest, I know that Ben ignores most people and chooses only to engage with me and Liam.

Liam starts special education preschool next week.  I wouldn't be anxious except none of his classmates will be the same, and despite my explaining this to him, he doesn't understand it.  In addition, his teacher is having surgery so he'll be starting the year with a substitute.  The school's SLP retired and there will be a new one; the SLP who retired was excellent and I am having a hard time imagine anyone as good replacing her.  We were supposed to go to the school yesterday to meet his teacher and tour the classroom, but he was puking, so we couldn't.

Next week I meet with the church preschool that Liam will start in September.  I have massive anxiety about this.  Will he get kicked out for potty accidents?  Will other kids pick up on his differences and ostracize him or make fun of him?  How will he deal with a larger classroom with more kids?  How will Ben and I manage being always on the go?

A future without reflux medication?

Today Ben had a GI appointment to check on how he is doing weaning off reflux medication.  He has grown so much recently, which is an indication that his body might be outgrowing the reflux.  He measured in at 35.5 inches tall and 27.5 pounds (adding 2 inches and 2 pounds since turning 2 years old four months ago).  The appointment with the GI was a bit frustrating as she mentioned that his excema and reflux symptoms are consistent with food allergies but does not think allergy testing is a good idea.  I guess at this point I have to accept that allergy testing is not going to happen.

The plan is for him to be done with reflux medication by October at 30 months old.  She said if he proves to still require reflux medicine than it will probably need it for life.  She also asked about his preference for soft food and said to call immediately if he starts having more difficulty as she could see a need for him to be re-scoped and tested again for EE.

All in all, a good appointment with his growth and ability to handle a lower medication dosage.

Celebrating World Breastfeeding Week: Part II....Why I Choose Child-Led Weaning

Child-led weaning is not the same as baby-led weaning.  So there is no confusion, baby-led weaning is allowing a baby to feed themselves solids and skipping purees and spoon feeding.  We used baby-led weaning with Liam as he refused to be spoon fed and never allowed purees.  He still won't eat anything that doesn't crunch and needs to be chewed (it is part of his sensory issues).  Child-led weaning is allowing a nursling to decide when they are ready to wean from breastfeeding.  Kellymom shows that only 36% of mothers are nursing after 6 months, 17% are still nursing after the 1st birthday, and less than 6 % still nursing after 18 months. Kellymom Source  By contrast, Kathy Dettwyler, an anthropologist who studied nursing across cultures and mammal species, estimates that a natural age of weaning of humans is between 2.5 and 7 years of age.  Kathy Dettwyler

So why did I decide to follow child-led weaning and place myself in a tiny percentage of women nursing past 18 months?  Remember I said when pregnant with Liam that I would wean him no later than 6 months.  Ben nursed until 28 months, so my thinking changed alot somewhere along the way.

Safety note about this photo: I was not sleeping with the sheets since Ben was newborn.  He fell asleep nursing and Dave wanted to capture the co-sleeping but covered me.

 

When Ben was born, I was hoping to nurse until age 2.  I wasn't sure whether I would then gently wean him or follow his lead.  I was not happy with the way Liam weaned suddenly due to a nursing strike.  Thankfully, Ben took right to nursing at the hospital.  Even more surprising, Ben was a fast nurser which meant he wasn't constantly attached to me and he even chose to nurse every 3 hours.  Nursing him was so easy.

At 3 weeks Ben started crying inconsolably.  If I had known then that random crying and screaming would last 2 years, I am not sure I could have survived it.  The first pediatrician said colic, but a few weeks later, a second ped said it was reflux.  We started with Zantac and it made no difference.  His dosage was increased and increased again.  Nothing made a difference.  I eliminated dairy and soy from my diet.  By 4 months, we were all weary.  Ben started spitting up blood.  Blood tests confirmed internal bleeding and we finally got a referral to a pediatric GI.

These photos were taken in January 2011 when Ben was 21 months.



The GI put Ben on Prilosec and it reduced the crying from 6 to 7 hours a day to 3 hours a day.  3 hours of crying a day is alot, and by this time, he was almost 6 months.  His weight was not maintaining on a curve.  He was born around 30th percentile and went up to 50th percentile by 2 months.  Between 2 and 4 months, he fell 42 percentile points to 8th percentile.  He fell even further over the next couple of months to 2nd percentile.  The GI suggested that I formula feed.  I requested a 2nd opinion.

The 2nd GI did not think I should supplement with formula but did make me talk to a nutritionist to ensure that I was consuming enough calories to support a nursling.  The trial of going of milk and soy lasted about 4 months and did nothing to reduce Ben's crying so I started consuming them again.  There were no changes to Ben in amount of crying.  Ben still wasn't gaining weight as expected.  The 2nd GI was convinced that reflux wasn't an issue and tested Ben for every disorder possible that causes growth issues.  Time and again, the tests showed Ben was healthy.  He was still crying hours a day.  Dave was deployed and I was worn out.  Ben wouldn't take a bottle so I didn't leave him at all basically.  I constantly questioned whether I was making the right choice.

We made it to the 1 year milestone and Ben was still nursing.  He was also still spitting up every day, sometimes multiple times, and often solid food rather than breast milk.  The 2nd GI wanted to trial Ben off the Prilosec.  The trial went horribly; Ben stopped sleeping, refused solids, and went back to screaming 6 hours a day.  The GI tried to put him on Zantac and it made no difference.  Ben went back on the Prilosec but was still refusing solids and solely nursing.  His sleep wasn't improving, and he was still crying alot.  But something was going right: he was gaining weight.  At 14-18 months, eating little other than breast milk and kefir, his growth went from the 4 or 5th percentile all the way up to the 20th percentile. 

In the meantime, we had moved so we needed to see a new GI.  This time we had to travel 3000 miles to get there.  This GI tripled Ben's Prilosec dosage and at 19 months he finally started sleeping through the night.  With the Prilosec and Early Intervention OT, he started to eat more.  The crying didn't decrease.  Ben was scoped in January and it showed his esophagus is healthy.  The GI wanted to take him off Prilosec.  I asked for a 2nd opinion again.  I also started taking him to a chiropractor.  Ben was still spitting up weekly at 22 months old and as I mentioned had bouts of unexplained screaming.

The 4th GI agreed to leave him on Prilosec until after his 2nd birthday.  His 2 year well baby showed that his growth was catching up to his peers, especially his height.  Sometime after he turned 2, the uncontrollable crying stopped.  In addition, I met the milestone I set for myself: I nursed Ben until he turned 2.  He only nursed twice a day so I saw no reason to stop.  Over the last few months, Ben went down to nursing once a day to every other day.  By June, he was nursing once or twice a week.  It is August 7th and he has nursed once this month so far, and I don't expect he'll nurse at all in September. 

We are done.  After supporting a baby with my body in pregnancy or nursing continually since December 2006, I am a happy to have my body belong to me again.  But since we are done making babies, I am sad to say good-bye to nursing.  Of all mothering things, it is the one that comes most natural to me.  I struggle getting my boys to sleep close to a normal amount.  Neither of them eat well or much.  I struggle with issues related to discipline and what is typical development.  Nursing is easy.

I am glad that I kept an open mind about length of nursing.

Celebrating World Breastfeeding Week: Part I....Why I don't Cover Up

It is World Breastfeeding Week, which is a bit ironic at this house as it looks like Ben might be weaned at almost 28 months.

Before I ever got pregnant, I wasn't sure that I'd breastfeed children at all.  I didn't even really have a desire to try. Then I got a job that required me to give workshops to military families and part of one workshop was presented by WIC on the benefits of breastfeeding.  So when I got pregnant, I decided I'd try to breastfeed, but when asked for how long I always answered "6 months or until he gets his first teeth."

Then Liam was born on August 20, 2007 at 10:38pm.  It wasn't until the early hours of August 21st that he even knew he was alive and that he was going to survive.  Until about 1am, we had no status and only knew he was rushed out of the room unable to breathe and Dave was not allowed to go with him.  I refused to call family that Liam had arrived because I wasn't even sure what I'd tell them.  I hadn't seen him myself and no one would tell us if he was going to be alright.  Around 1am, we finally got an update that they were trying to stabilize Liam for transfer to a hospital with a NICU. 

About 3 or 4am, the two loves of my life left me all alone.  I remember sitting alone in my hospital bed crying and a nurse came in and quietly said "You really should get some rest, but in the meantime, do you want to try pumping?"  I spent my time in the hospital pumping as much as I could, which in those first days in just small amounts of colustrum.  I felt defeated when Dave came to get the the milk I pumped, but the NICU nurses assured him that I was giving Liam "liquid gold."  I remember thinking Liam would never latch on since I was missing this pivotal first days with him.

Finally, I was released.  This picture was taking when I put him into my arms for the first time, right before I nursed him for the first ever time.

In the photo, you can see the feeding tube they had down his nose.  That is how he started off eating.  I was incredibly blessed and lucky that Liam was a natural at nursing.  While we had some struggles with getting a good latch on my right breast, we really had an easy time.  It took 5 days for my milk to come in and i never had painful engorgement.  Liam was a slow nurser, nursing for 60-90 minutes every 90 to 120 minutes for the first 4 months.  I once calculated that I spent 14-16 hours a day nursing for 4 months.  I loved mostly every second of it.

The fact that Liam nursed so often and the fact that he wouldn't take a bottle meant we HAD to nurse in public.  I never wanted to be someone nursing with my boobs hanging out, so I bought a cover....but like the bottle, Liam hated the cover too.

Liam was nursed everywhere from the Sandringham garden (summer house to British royalty) to all over the military base to airplanes flying between England and Germany and England and the US to train and subway rides to German cafes to English pubs to parks in London....and even once in line at Heathrow, without the people next to me even knowing.  Dave didn't even know; he asked me if Liam was sleeping.

Liam was a high needs baby, but nursing was one thing that settled him.  As it happened, it was also the single parenting/mothering thing that came perfectly natural to me.  Then in July 2008 when Liam was 11 months old, we moved from England to the US.  The day after landing, Liam refused to nurse.  I started pumping....I LOATHE pumping.  I contacted the Le Leche League in our new town.  I consulted with the lactation consultant at the local hospital.  In the meantime, we found out that Liam had a double ear infection.  Before his antibiotic course finished, I took a pregnancy test and found out I was pregnant.  With a new pregnancy and an almost 1 year old refusing to nurse, I made the decision to switch to formula (as Liam wasn't eating much solids yet).  This meant though that I was still pumping when I got pregnant. 

As of today, I have been continually pregnant or breastfeeding since December 1, 2006.  I know people have a longer stretch but for me who never expected to nurse, that is pretty long.  When I tell people, they act shocked and ask me how many children I have and then seem even more shocked that the answer is only 2 children.