Love letter to Jacob

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To my son Jacob on his 4th birthday…

I love your beautiful big brown eyes and long eyelashes (thanks to daddy’s genes on those).

I love your smile, even though it does not show up in pictures as much as I would like.  Your smile lights up a room.

I love our snuggle time.  You love to lay your entire body on top of me before bed and cuddle your head right under my chin. I wait for the moment when your breathing slows and your body goes limp in peaceful slumber, to roll you over and kiss your forehead goodnight.  This is always one of my favorite parts of the day.

I love your questions.  Really, I just love anything you say, especially since it took so long to really hear your voice.  Your questions are like a window into your mind, and I love what I see and hear.

I love taking you to the store with me.  You are such a good shopper – patient, curious, and great at helping me remember the items on my list.

I love your natural way with animals.  You have such a gentle way about you.  I think animals can sense that and are comfortable around you.  I never thought I would want to live on a farm until I saw you around horses and cows.  That is almost enough to make me leave the suburbs, but not quite – I love Target too much (and so do you!).

I love your appetite and hunger for healthy foods.  Thank goodness you are a good eater, especially with all of your allergies/food sensitivities.  You are happy with a plate of grilled chicken, broccoli, and sweet potato.  If not for your brother and sister, I would pat myself on the back and think I did something special to raise such a great eater.

I love your need for routine and structure.  You like to know the plan and you check-in to make sure we are on schedule and everyone is accounted for.  You have an amazing sense of direction and question me if I change course or make any unexpected moves.

I love taking you on trips.  Even though you like your typical schedule, you also love an adventure.  The other kids are happy to watch a movie in the car or on the plane, but you would rather look out the window and take it all in.  You say, “weeee” when we exit on an off-ramp, you applaud when the airplane takes off and lands, and you point out all the wondrous things in the world around us.

I love your love of water – baths, pools, oceans – you are a natural in the water.  Swim team in your future?

I love the way you light up when you are around your family.  You love having Grandma and Grandpa, Grammy and Pop, your Aunts, Uncle Scott, and your cousins over.  You love to show off when there is an audience – yelling from the top of the second floor, dancing, forward rolls, or singing.  You are happiest when you are around your loving family.

I love the special relationship you have with your brother.  You and Isabella will grow closer as you get older, but you and Noah are practically twins.  You complete each other and make each other better.  I hope and pray that you remain this close as you grow up.

I love your determination and strength.  You have had to overcome more obstacles than many other four-year-old boys, and you have met those challenges with grace, maturity, and fortitude.  I have seen how milestones like sitting, standing, crawling, walking, jumping, playing, talking, and pedaling a bike come without much difficulty for some children.  You have had to work harder and longer more often than not, but you eventually get there.  I am so proud of you for not giving up, for pushing yourself when it is hard, and for having a good attitude even in the struggle.  This will take you far in life.

I love your laugh.  Your playful giggles bring a smile to my face (except when they mean you are up to mischief).  Your laughter is contagious, frequently sending your brother and sister into a contest of silliness.

I love you as my middle child, my oldest son, and my sweet 4-year-old boy.  I love you Jacob!  Happy 4th birthday!

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Lessons from an adenoidectomy

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Jacob playing before surgery

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These instructions failed to mention that my child would still be miserable after a week.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

It has been a week since Jacob underwent surgery to remove his adenoids – an Adenoidectomy.  I still don’t really understand exactly what adenoids are, where they are, and precisely how/why they are removed, so I will refer you to google or wikipedia if you would like more information.  I do know that at least four different medical professionals that have cared for Jacob over the past three years have told us that we should do this surgery and that removing his adenoids could help his breathing, sleeping (at least having more restful, restorative sleep), and even improve his speech.  Everyone we talked to, and everything I read on the internet, made this surgery seem like a fairly minor ordeal, with the inherent risks of anesthesia and an invasive procedure.

The surgery was originally scheduled in August, right after our trip to Philly for the Livestrong Challenge.  Sometime at the end of that trip, and especially on our first day home, Jacob started limping.  He also had a cold – runny nose, sneezing, coughing, and one low-grade fever.  I was paranoid about putting Jacob through surgery when he was not well.  As I have said before, Jacob is my child who has endured the most  in his young life.  Between the reflux, the stomach troubles, hypotonia, physical and social delays, food allergies, and his ongoing speech delays – nothing has seemed easy or typical with Jacob.  I am usually not a big worrier, but I just had a bad feeling about him undergoing a somewhat elective surgery while he was sick and mysteriously limping.  Jacob’s cold improved before the scheduled surgery, but the mysterious limp continued.  I did what all of us crazy moms do when we are worried – I looked on the internet for answers.  Yes, I may be married to a doctor, but doctors don’t know all the answers and Les was working the night that I was desperately searching for answers on the internet.  The internet as medical resource is a tricky thing.  My research told me that he could have a fairly benign condition called toxic synovitis or he could have something frightening like septic arthritis or leukemia.  Of course, I started obsessing about the worst possible cause of his limp and begged the pediatrician to do a CBC to rule out leukemia.  The pediatrician, and Les, agreed that he probably had toxic synovitis, but thankfully everyone also wanted to do the CBC, an x-ray, and a hip ultrasound just to be safe.  To our relief, all the tests came back normal and I guess we’ll just attribute the mysterious week-long limp to toxic synovitis.

Once Jacob was finally healthy and ready for surgery, I actually was not that worried.  As I said, most people we talked to and everything I had read made the surgery and the recovery seem very straightforward.  The patient instructions even told us that he could eat whatever he wanted and resume his normal activities, as soon as a wanted after surgery.  The surgery was on a Thursday, and I figured he would maybe miss a day of school and be back to himself by Monday at the latest.  The doctor was wonderful and the facility – CHKD Princess Anne – was top notch.  Jacob did pretty well during the surgery and immediately after.  He was tired and fairly clingy that first night and next day.  It was a struggle to get him to drink anything, and he had no interest in eating.  He had a fever over the next 48 hours and was pretty wiped out.  We have been giving him Tylenol or Motrin (usually not recommended after surgery, but ok by our doctor) every 8 hours or so every day for the past week.  Without the medicine he is pretty unhappy and runs a low grade fever.  He is finally drinking more, but is still not really eating much.

It is so hard to truly know if and where a toddler is in pain because he can’t quite verbalize what is bothering him.  It has been exactly one week since the surgery, and Jacob is not as well as I thought he would be by now.  He missed the entire week of school.  I tried to send him on Wednesday, but the nurse called after 2 hours and said he was pretty miserable and should come home.  We have a follow-up appointment tomorrow, so we will find out if all of this is within the realm of normal.  I suspect that it is, but I just wish my sweet little boy would hurry up and get better.  I just hope that this surgery leaves Jacob better than he was before and that we will feel like it was worth it.  I just want Jacob to be the best that he can be.  I just want Jacob to be healthy and happy.  Oh yeah, I would also like his breath to stop smelling so horrific.  Bad breath is a common side effect of this surgery and it should improve after 1-2 weeks, but this is some really stinky stuff.

In hindsight, I probably should not have expected an easy recovery.  I am glad I was not overly worried and stressed about the surgery, but I also could have prepared myself a little better for the possibility of a slower, longer recovery.  After all, everything up to this point with Jacob has been on a longer, slower timeline.  Nothing has been easy for him, so I am not sure why I expected that this would be.  I would just like to see Jacob’s recovery start picking up the pace a bit.  Once he starts sleeping better and eating and drinking more, his demeanor and mood should improve.  Once all of this gets going, I’ll finally feel like we are on the road to a real recovery.

Jacob – A Special Kid From the Beginning (Part 2)

Looking at these two pictures reminds me just how far Jacob has come.  I wish I could have seen this picture of him running with a football when he was 11 months old and I was a frightened that he would never sit properly, crawl, or even walk.  So many people encouraged me that it would come in time, and I believed them for the most part, but I still worried.  Jacob’s gross motor skills have improved exponentially over the past year and a half.  He walks and runs everywhere.  He still falls quite often when on uneven surfaces, but we have been lucky in escaping any real injuries or trips to the Emergency Room.  He is still in physical therapy through the school and privately, working on navigating surface changes, stairs (alternating feet up and going down safely), jumping, and overall core strength and flexibility.  From initial appearances, Jacob looks like a pretty typical 2 and a half-year old, which is such a tremendous blessing and a relief.  I feel like he will eventually be able to do everything his peers can do physically, even if it takes a lot more time and effort.

Our biggest challenge over the past year has been Jacob’s speech delay.  At the age of two, Jacob really was not talking at all.  He said mama, dada, and Bella and that is about it.  All of his therapists told us that children usually master gross motor skills before mastering fine motor skills, including speech.  Since his gross motor development was so delayed, this somewhat explained his speech delay.  He also needed to imitate sounds before he would be able to imitate words.  At two, Jacob was delayed in a lot of his fine motor skills and really was not imitating much at all.  He still was not clapping, not signing much (despite lots of effort on this), and not doing much fine motor play (block stacking, pop beads, etc.).  He would gesture, point, grunt, and cry if he wanted something.  Two-year olds can be challenging, moody, and difficult to understand anyway, but most two-year olds have a basic supply of words and/or signs to communicate their basic needs and wants.  Jacob did not have this, which was leading to a tremendous amount of frustration on his part and ours.

One of the great things about the Early Intervention program is that they are a direct link to the IEP and developmental preschool programs offered through public schools.  A child can stay in the Early Intervention program until they are three, but it seems like they encourage you to get them in school for a more stimulating, therapy-rich environment than the few hours of at-home therapy you get through early intervention.  Our daughter Isabella was in a Montessori school and we were very happy with the environment and the development we had seen there with her.  I am a big proponent of Montessori education, but I also feel like different kids need different things at various points.  This is a lesson, not just of education, but of parenting multiple children.  Montessori would not have been the right fit for Jacob, and I am not sure if it ever will be.  The developmental preschool through the public school system was a good fit for Jacob.  We went through the IEP process and he started the 2011-2012 school year with 2 days/week.  Jacob’s amazing, patient, smart, and caring preschool teacher helped advocate for him to go to school 3 days/week in the middle of the year.  Jacob enjoyed going to school.  He was fine getting on the school bus (so scary to send a 2-year-old on a bus, but he loved it).  He came home from the half-day exhausted, but happy.  The classroom is a language-rich environment, with therapy built-in to the entire program, in addition to more individualized speech, occupational, and physical therapy.  Because many of the other kids in the class were also delayed in one or multiple ways, we decided to also put him in a regular preschool class at the JCC for the other 2 days/week.  This way he would have some sort of school or activity every morning of the week (much easier for creating a routine), and he would be exposed to many different types of kids and learning environments.

We did see Jacob make progress at school, but the progress was not as fast as we would have liked.  By the time Jacob had his second IEP meeting at the end of 2011 (where we were requesting 3 days/week), we felt like his progress was stagnant.  This was a familiar feeling with Jacob’s development.  When he learned to crawl, it took him another 8 months to learn to walk, and it seemed to take forever.  With his speech, we kept expecting a “language explosion”, but he spoke less than 10 words from his second birthday to two and a half.  Progress just seemed so slow, which was so very frustrating and defeating at times.  In addition to increasing his days at school from 2 to 3 days and adding the 2 days at the JCC, we changed his private speech therapy as well.

We had been seeing a nice speech therapist at our home once a week from August 2011 to January 2012.  I had suspected that Jacob may have Apraxia, in addition to some dysarthria and hypotonia.  He fit the profile in a lot of ways and this speech therapist confirmed that he probably did have Apraxia.  She really focused on building his mouth strength through focused exercises in chewing, blowing, and whistles.  Just as Jacob had low tone in his body, his mouth was very weak as well.  These exercises were like PT for the mouth.  Jacob’s mouth did seem to get stronger, but this did not necessarily translate to improved speech.  Jacob also  did not always cooperate for these hour-long therapy sessions.  Overall, we just felt like we needed to try something else.  We had Jacob evaluated by a speech therapist in Virginia Beach (a 45-minute drive away) who was an Apraxia expert when he was 18 months old.  She said he was too young to diagnose with Apraxia at that point.  In January of 2012 I decided to attend an Apraxia support group meeting in Virginia Beach and I ran into this speech therapist again.  She suggested I bring him back in for another evaluation.  We did  the evaluation and have been schlepping Jacob to Virginia Beach twice a week for speech therapy and physical therapy since February of 2012.  Although this therapist does not think Jacob officially has Apraxia, she does agree that he has dysarthria and that the low tone affects his speech – it is just a lot more difficult for Jacob to talk than for other children.  She is good – what all speech therapists should be!  The drive is a pain, but worth it for good therapy that I finally feel is helping him.

I had suspicions that Jacob had some food allergies or sensitivities for a long time.  Even as a baby, with the severe reflux and eczema issues, I knew that dairy was a bit of an issue.  I tried to alter my diet while nursing him for 7 months, but I could never pin point what exactly bothered him.  When I stopped nursing, we tried him on regular formula, which he did not tolerate.  He seemed to do better on soy formula, and eventually soy milk.  We still gave him regular yogurt and cheese occasionally, which he LOVED, but it did not love him.  If I noticed the eczema flaring up, I would try to cut back the dairy, but sometimes he would still have skin issues or crying fits at night even when the dairy was cut out.  The other problem was that he seemed to crave dairy and would cry and throw tantrums at the fridge begging for yogurt or cheese.  I understand that my job as a parent is to set limits and control the nutrition, but it is hard to constantly fight over food, especially when you can’t figure out exactly what it is that is causing the problems.  He was also starting to refuse certain foods that he used to like – pizza, pasta, and some bread.  We took him to an allergist for skin testing at 18 months, but egg was the only thing he showed a slight allergy to.

Needless to say, I really started to suspect some food sensitivities or allergies that may not have shown up on the skin test (not the best test for certain sensitivities or allergies anyway).  I have always had an open mind to alternative sorts of treatment.  I already had Jacob on a special fish oil that is supposed to help with myelination in the brain and speech, not to mention being healthy for you as well.  Even though Les is a physician and I wholeheartedly believe in the benefit of Western medicine, I also don’t believe that the medical community (especially not any one particular doctor) knows all the answers.  We had been to pediatricians, neurologists, developmental pediatricians, allergists, dermatologists, ENT, and several other therapists and nobody really had a clear idea of exactly what was wrong, what was causing the problems, and what exactly we should do to help Jacob.

Although I do not currently think that Jacob is on the Autism spectrum, some of his issues share certain characteristics with Autism – speech delay, sensory integration/processing issues, and some of his GI problems.  I had heard about parents that had “cured” (or at least significantly helped) their children on the Autism spectrum with the Gluten-free, Caesin-free diet (GFCF diet).  I ordered six books on Autism and the GFCF diet and read them in one week.  Why not try this special diet, since it may help his stomach and skin problems that I suspected may have something to do with dairy and/or gluten?  There was plenty of information in the books and on the internet suggesting that speech and behavior improved on this diet as well.  The new speech therapist in Virginia Beach was supportive and said she had personally seen significant improvements in kids on this diet, in addition to being helped by the diet herself.  She also recommended more allergy testing by a different lab (Enterolab) to confirm food allergies or sensitivities.  We tested Jacob with this lab and, as suspected, the results showed that he was allergic to Gluten, soy, eggs, and dairy.  We eliminated the soy, since we had already eliminated everything else.  I cringe when I think about how much soy Jacob has consumed (soy formula, soy milk, soy cheese, soy yogurt, soy sauce, etc.) over the past 2 years.  After gluten, soy was the next highest score on his allergy tests.  I am trying hard to minimize the mommy guilt over missing this and possibly contributing to any of his problems with the soy.

We have really seen significant changes in Jacob since January.  We have seen the most dramatic improvements in his speech.  He probably has 50 words – maybe not easily understood by all – but 50 words and often tries to imitate other words and sounds.  Jacob is also playing more like a typical little boy.  I still remember the first time I saw Jacob playing with cars in a way you would expect a 2-year-old to play with them (about 6 months ago).  I was so excited and proud that it brought tears of joy to my eyes.  Now he regularly plays with cars, trains, and other toys the way I would expect him to.  This is something you take for granted with neurotypical children, but such a big deal for kids like Jacob. It is almost impossible to say if any one particular thing has resulted in these improvements.  I think the diet is probably the biggest thing that has led to the improvements.  He does not wake up crying during the night (confirming my suspicion that his stomach was hurting), and his mood is so much better.  He can still be a moody, grumpy and whiney toddler, but not nearly as unbearable as before.   In addition to the diet, Jacob is certainly benefiting from 5 days of school/week, more frequent speech therapy with an excellent therapist, and time.  He will be three years old next month.  What a difference a year makes!

There is still a great deal of work ahead of us.  Jacob will be starting a new year of preschool in an integrated class at the local public school in the fall.  We finished his IEP, and he will continue his speech, PT, and OT therapies while attending school 4 days/week.  We will continue to go to Virginia Beach for private speech therapy and physical therapy.  We have to work with Jacob every day on his speech.  I would love for him to be putting 2 or more words together regularly and expand his vocabulary.  I can’t wait to hear him sing songs and have a conversation with his brother and sister while playing.  He still has some strange skin rashes that appear on his legs.  We went to a dermatologist a year ago about this and did not get any answers.  We need to go to a different dermatologist and push for a better answer.  I continue to look for new things to cook and serve to Jacob to accommodate his food limitations.  This diet does involve a lot more grocery shopping and advance planning on my part, but it forces me to make fresher and healthier meals for the whole family.  In the next year I would love to see Jacob learn how to walk down stairs, pedal a tricycle, jump, and sit up in a chair for longer periods without slumping down.  We have lots of goals and look forward to celebrating all these accomplishments and more.  I am so thankful for the progress we have made and more hopeful than ever that my precious little boy is starting to shine through.

Jacob is a sweet, resilient, funny, and smart little boy.  He is such a special kid!  Of course, I still worry about him every day and probably always will.  I worry about all three of my kids, but my fear and concern for him is just different.  I just want what all parents want for their kids – good health, happiness, and the opportunity to be independent and live a full life.  Despite the stress and struggles along the way, I am so honored and proud to be Jacob’s mother.  I would do anything for him.  He has given us so much joy and taught us so much already in his first 3 years of life.  I can’t wait to see what he’ll learn next and look forward to the journey ahead!

Jacob – A Special Kid From the Beginning (Part 1)

Jacob is one extraordinary little boy.  He is my first born son, my middle child, and probably the sweetest AND the most challenging of all three of my kids.  Before I describe some of the details around my handsome little man Jake, I need to provide a little context.  Isabella, my oldest, was a tough baby for the first 3 months (she did not sleep much, not a great nurser, and colicky). Around 4 months Isabella became a much easier baby, and I became a much more sane and confident mom.  Other than our rough start together (more on that in a future post), Isabella was great.  She hit most of her milestones on time or early.  She was social, adorable, engaged, active, and it seemed like she was progressing and learning new things every day.  We felt like we had the hang of this parenting thing and thought we could do this again.

We decided to start trying for a second baby when Isabella was just 8-9 months old because of some of the fertility issues we had.  We did a failed round of IVF in the summer of 2008 before successfully trying IVF again in October.   I had a very good pregnancy and a much better delivery than my first one because it was a scheduled c-section.  I was thrilled to have my healthy baby boy, a big boy at 8 lbs, 4 oz.  He was a much easier baby than Isabella that first month – eating well, sleeping often, and easily soothed.  At about the one month mark he started having some reflux symptoms that were making him fairly unhappy – spitting up frequently, lots of spit bubbles, stomach/GI pain, and fussiness.  Our pediatrician confirmed that it was reflux and we started him on some reflux meds, I altered my diet to try to eliminate things that might be bothering him, and we let him sit and sleep on an incline as much as possible.  At around 3 months, I started to be get all “psycho mom” with worry and doubt about his development.  My mother’s intuition told me something was just not right with my baby.  He was not really smiling very much and just did not seem very engaged or interested in his surroundings.  Les and our pediatrician tried to reassure me over the next few months that he was fine and that it could be discomfort from the reflux, or he might just be a late developer.

There were a lot of little things that worried me in those first 6 months with Jacob.  All I had to compare his development to was his older sister who did everything much earlier than Jacob was doing things.  Many people said that boys develop differently and that I had to just be patient and not stress so much.  My husband is in the medical field, and I know enough about a little to be dangerous.  I was worried about Autism primarily, but there were other scary disorders I did not want to even fathom.  Even Les started to worry at 8 months when Jacob was not sitting, was not really playing/engaging with toys, and not getting around at all. Dr. Lewis, a pediatric neurologist at CHKD, diagnosed him with hypotonia, or “floppy baby syndrome”.  He reassured us that he would eventually sit, crawl, walk, and talk.  As for some of the other things I was worried about, like skin issues (eczema and rashes), speech delays, and some of the sensory and temperament concerns, we would just need to wait and see as he got older.  Jacob did finally sit up at close to 10 months, crawled at a year, and walked at 18 months.

I got him in early intervention services at 8 months for physical therapy, speech therapy, and occupational therapy.  The therapists were so helpful with all of Jacob’s issues – physical, sensory, speech, play, and feeding – and with all of my concerns and fears.  I try to tell anyone who has concerns about the development of their kids about early intervention services.  No doctors told us about these services that are available in every state.  I found this on my own, as so many concerned parents do when researching ways to help their child.  Jacob received services from his early intervention therapists, and from private physical therapists at CHKD, until he was two.  We will never know where Jacob’s development would be without the early intervention services, but that is sort of the point of these services – to not have to know what a potentially worse outcome would look like.  Jacob was certainly not a “typically” developing boy at 2 and he is still not at almost 3, but we are making progress (more on Jacob from age 2 to 3 in Part 2).

As a parent, you worry about all of your kids.  If you have a healthy, typically developing, smart, talented, and well-behaved kid (like Isabella and Noah) you worry about something going wrong in the future, you fear the unknown, and you worry about how smart or talented or well-behaved they are compared to their peers.  With a child with developmental delays, you have many of those worries, plus the real fear and concern about their present issues.  You wonder if the diagnosis is right, you wonder if you are missing something, are you doing enough, are you pushing too hard, are you giving them enough time and attention with therapy, will they ever catch up and lead a “normal” life.  I could go on and on about the list of worries I have had with Jacob.  Add to that, a heaping serving of guilt and self-doubt (is this my fault, something I did or did not do to cause this?), and you have some serious parenting stress.  I know this was true for me and it is true for so many other parents of kids with developmental delays and health concerns.

I am sure I will have many more posts about our journey with our wonderful and special son Jacob.  In spite of Jacob’s delays and all the fear and worries I have had about Jacob since his first few months, he is such a sweet, sensitive, adorable little boy.  When he does reach those milestones, like walking for the first time or saying a new word or playing with a toy in a “typical” way, they mean so much more because we know how hard fought the journey was to get there.  Many of these moments have brought tears to my eyes – tears of joy, relief, and immense parental pride.  I hope that sharing our journey with Jacob, might help those who are curious or who may be going through something similar.  Please share your experiences and your journey with me.  I have learned so much from others going through similar experiences and look forward to continuing to help each other in the future.