Happy Father’s Day Dad

Happy Father’s Day to all the wonderful dads out there, especially my dad!  I am so incredibly proud of my dad this year because of his remarkable physical transformation. He is a new man. I was worried about my dad for a long time. He has spent much of his adult life battling his weight and other health issues including high blood pressure, elevated cholesterol, and diabetes.  He never had the healthiest diet, and I only really remember him exercising when he had to for the military.  About 69% of adults in America are either overweight or obese, so he was not in the minority with his weight or poor lifestyle and health history.  My dad’s weight and medical concerns only increased since retiring from the Navy, until he was forced to make some serious changes or risk loss of his career or even his life.  My dad’s side of the family has a pretty bad track record with a number of deaths from heart attack or stroke, things that probably could have been prevented with lifestyle changes.  I think he probably knew that he would face a similar fate if he did not take control of his weight and health.

My dad also had a lot to lose if he did not make the necessary changes.  He is a husband and a father to four grown daughters.  Perhaps most importantly, he is Grandpa to my three kids and now to my sister’s newborn son.  With a 20+ year career in the military, my dad was gone a lot, too much with young kids at home.  He missed plenty of big and small events in our lives, and I still really don’t know how my mom managed so much on her own while my dad was deployed.  I also know, although he has never said this, that it must have been hard on my dad to miss all those precious moments with us.  I know that this is the fate of so many military families right now while our country is at war, and it breaks my heart because I know firsthand how hard it can be on the members of those families.  Since retiring from the military, I have seen so much more of my dad and been able to get to know him so much better as an adult.  All of my sisters are probably closer to my dad now as grown-ups than we ever were as children.

I have also been able to watch my dad become a Grandpa, perhaps one of my greatest joys over the past few years.  I know my father loves each one of his daughters, but I also know that my parents always wanted a boy.  They had a name picked out and everything.  My dad is naturally the strong and silent type, but having five women in the house (all fighting to get a word in) left him without much to say.  I don’t think he quite knew what to do with Barbies, dolls, make-up, boy trouble, and the hormonal teenage angst that was ever-present in our house for years.  Now there are three grandsons in our family, some sort of poetic justice in my opinion.  My boys, especially Jacob, adore their Grandpa.  Jacob loves all of his grandparents, but there is an amazing connection between Jacob and my dad.  He loves to take Grandpa on walks in the woods, play choo-choos or cars, and go to the park.  My dad enjoys following Jacob around wherever he leads, making him #1 in Jacob’s mind.  Jacob even resembles my side of the family, especially my dad.  Before my dad lost all of the weight, he had a hard time getting down on the ground to play with the kids and struggled to keep up with my active toddlers.  He could not physically be the Grandpa he wanted to be – active, engaged, and playful.  I am so appreciative of my parents and the role they play in my children’s lives.  Yeah, the babysitting is nice, but mostly I just love to see the way my kids get so excited to see them.  My dad needed to get healthy so he could be around a lot longer, especially for Isabella, Jacob, and Noah.

I always admired my dad’s work ethic, tenacity, and pride.  These are traits that I hope I have inherited and learned from him.  He relied on these character traits to totally transform his weight and his health.  My dad underwent gastric bypass surgery a year and a half ago and has lost over 100 pounds since that time.  Some people feel that this is “the easy way out” or somehow not as impressive as losing the weight without surgical assistance.  I understand where some of those people with that opinion are coming from because there are plenty of examples where surgical weight loss does not work as a long-term solution.  I do not feel that my dad will be one of those people.  He committed himself to long-term success.  He is doing it for the right reasons.  He did the mental work to prepare for the lifestyle changes and has followed through on those changes even after the weight loss.  My dad is a runner now – a real runner who belongs to a running group and does 10K and half-marathon races on weekends.  He does not take any medicine to treat health problems anymore.  He actually managed to get off all his blood pressure, cholesterol, and diabetes medicines before the surgery, as a result of the significant dietary changes leading up to the surgery.  He makes better choices about the foods he eats, liquids he drinks, and portion sizes.  He looks awesome and I know he feels great too.  He has a new lease on life and is making the most of it.  He has always worked hard for his family and for his job, but I am so proud to see my dad working so hard to take care of himself.  I admire my dad for many things, but I am inspired and moved by the complete transformation he has made over the past 18 months.

Congratulations on your remarkable accomplishments Dad!  Thank you for taking charge of your health so that you can be around for many more years.  Keep up the good work with your diet and running.  We are all so proud of you!  Lots of love to you on Father’s Day and every day!

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.

Dance Like No One is Watching

There are quite a few things that a 4-year-old can get away with that a 34-year-old simply can’t quite pull off:  smocked clothing, light-up sneakers,  licking the bowl after eating ice cream, and possibly dancing by yourself to a steel drum band in the middle of town center.  I guess a 34-year-old could get away with these things, meaning they would not be carted off to jail or checked into a psychiatric hospital, but they certainly would be looked at a little funny.  However, a 4-year-old doing any of the aforementioned things is a pretty adorable sight.  Last night we enjoyed a wonderful family dinner at Bravo in the Virginia Beach Town Center to celebrate our niece Emily’s 13th birthday.  It was a more relaxing dinner than usual because my parents were watching our two youngest children while we took our daughter Isabella to dinner.  Isabella is pretty good at restaurants, but she is still a picky, restless 4-year-old who has a hard time sitting through a two-hour meal at a restaurant that does not have television, video games, or a playground.  Right outside the restaurant was the temptation of fountains, a steel drum band, and lots of people.  Needless to say, someone would be going for periodic breaks with Isabella and our  7-year-old niece throughout the meal.  Because my husband Les is awesome when it comes to all things kids, he volunteered to take the girls out so they could dance and prance about.

There are many things that rock about being four years old.  My husband and I often remark how awesome it is to be our daughter Isabella.  I mean last Saturday she woke up to homemade pancakes, played soccer, went to a carnival, went to an afternoon birthday party, played with her friends, watched a movie, and got a bath and bedtime story before settling in for a restful 12 hours of sleep.  THAT sounds like an AWESOME way to spend 24 hours!  Heck, if I could just get some exercise and a grown-up movie in the same day I would feel like I was on vacation, or I would feel guilty about taking too much time away from my family.  Exercise, movie, AND a play-date with my friends or my husband – that would just be crazy talk.  Twelve hours of sleep – LOL – that is really crazy talk.  I am telling you, it is good to be four years old!

I think many of the adults, and even teenagers, in the courtyard of town center probably felt like dancing to that steel drum band last night.  Some people were swaying side-to-side, tapping their feet, or had a little bounce in their step, but only the children were really dancing.  They weren’t just dancing either – they were dancing as if no one was watching them.  Spinning, cartwheels, arm waving, jumping, and dancing without a care in the world, as a kid does best.  It was a delight to watch and almost made me want to get out there and dance too, except for the fear of people watching.