Let’s start at the beginning--  at the beginning, I mean way back to the summer of 2004.  We had been married for 2 years and decided that maybe we’d get a dog.  If we could take good care of a dog, we figured we might be ready for a baby.   

We got our puppy, a little black Scottish Terrier when he was 8 weeks old and weighed 3 lbs.  He was tiny and cute and the vet pronounced him to be in good health.  We knew the pup would need some vaccines, but this vet was only going to give him 1 at a time… because “if there were a reaction, we would not know which vaccine had caused it.”  This left me with a lot of food for thought.

So we vaccinated pup slowly.  He fortunately had no reactions and at one time or another, the vet would say things to me indicating that he thought giving vaccines one at a time was the safer way to do it—that loading up his little 3 lb body with all the other “stuff” that comes in vaccines was not a good idea. 

Fast forward a year later and I am pregnant.  I did a lot of research during my pregnancy.  I had all of the usual pregnant lady fears but some of them were amplified by the things I had been reading regarding vaccines, and the rise in autism and the other “As”—asthma, ADD, ADHD, allergies, etc.  I was determined to find a pediatrician who had a philosophy about vaccines that meshed with mine.

The first group I met with were very strict about the topic-  if you did not vaccine per the American Academy of Pediatrics schedule—you were out of their practice. 

Then I found the group we see now.  Or actually, my mother did.  She knew Dr. S’s nurse, Kathy, and it seemed like Dr. S and I would be a good fit—so she become our pediatrician.

We were going to vaccinate one at a time and not start before 6 months.  Kate would not get the Hep B vaccine in the hospital and we would take it slow. 

Kate was born on a Thursday in late June.  We were seen that very same day by the lactation nurse, a lovely woman named Peggy, who told me Kate had a tongue tie.  I think she may have even given me a business card for an ENT in a neighboring town who frequently snipped the infant’s tongue ties.  I do not believe we were given the option to have this done before we left the hospital.  We saw 2 pediatricians in the hospital, neither of which were affiliated with the group we’d be going to because our group didn’t have hospital privileges at the hospital I delivered at, and both of them gave me the impression that tongue ties were nothing to worry about.

We arrived home two days later, our little family of 3 (4)—including the dog.   Everything seemed to be going Ok, aside from the fact that the child wanted to eat every 45 minutes to an hour.  During Kate’s 5^th week of life, we went to the pediatrician 4 times.  All she did was cry.   In my desperation, I decided to try giving her a bottle of formula.  She was 5 weeks old and it took her almost 45 minutes to drink 1 oz.  This could not be normal.  I had heard of newborns drinking 2-3 oz.  I began to ask our pediatrician, as well as her partner, about the tongue tie—was it impacting her ability to drink enough while nursing?  Why was she such a lazy bottle drinker?  Both of them, on numerous occasions, told me the tongue tie was nothing to worry about.   That made a total of 4 pediatricians who told me to stop worrying.

Ok, so I did.  But Kate continued to need a bottle almost every hour for months.  At 6 months, we did start her on cereal and that went Ok.  At 8-9 months we really began to expand upon the types of food we were offering her and she didn’t seem interested.  We went to the pediatrician almost monthly and at each and every visit, I continued to question the tongue tie.  I always got the same answer:  Don’t worry!

Kate had her 1^st ear infection at 9 months.  She had a break and then she continued with chronic, bilateral ear infections all the way up until she was 22 months when she had surgery to put the ear tubes in.  She continued to want a bottle almost hourly while she was awake and she continued not to be interested in table food.  My pediatrician told me that some babies just prefer baby food.

By 11 months, she wasn’t crawling (I never crawled but according to my Mom, I walked by 10 months).  Dr. S. felt that she was becoming significantly delayed in some of her skills and we made a joint decision to halt all further vaccines, until Kate was sufficiently caught up with her peers.  Little did I know that we’d be halting everything until she was 5 years old.

Her 1 year birthday came and went.  At 15 months, she had no words and I was beginning to worry.  My gut was speaking to me but I knew it was still early so didn’t press the issue.  At 18 months, she did have words but I wasn’t sure they were meaningful (i.e. she meant what she was saying) and they were all similar sounding:  dada, baba, doda, etc.).  Her pediatrician was again not concerned with her eating habits—still not eating table food, still wanting many bottles per day and also felt it was too early to get concerned with her language skills.

I, however, was not convinced.  For one thing—yes, Kate WAS gaining weight but that’s because my mom and I were obsessive about making sure she was getting proper nutrition in the form of a bottle every 1.5-2 hours.  At 18 months old, she could only drink 4 oz in 1 setting.  I had stopped nursing her at 8 weeks and we switched to formula out of desperation—hoping that it would help her not to need a bottle every hour.

I also felt that her eye contact wasn’t great, she continued having ear infections, and I was worried about her hearing from the repeated infections.

So I called Early Intervention myself.  We live in New Jersey and I have to say, they are fabulous here.  They were in my home within 2 weeks of my initial call to them.  I believe they sent a physical therapist and a speech therapist to the evaluation.  They observed her attempt to eat food and immediately knew they had to have an Eating Therapist come out as well.

Kate qualified for 2 hours per week of services—1 hour for speech, and1 hour for eating therapy.  Calling Early Intervention was the BEST thing I ever did.

The Eating therapist came within 2 weeks of the initial evaluation and her declaration stunned us all.  Kate had the WORST tongue tie she had seen in 15 years of practice and she suggested it be clipped.  Immediately.  She also had a very tight frenulum, that was attaching to the gum line just above her teeth and she felt that needed to be cut as well.   The decision was made to see a pediatric ENT, get these 2 procedures done and put a set of tubes in her ears as well.  In the meantime, she began her therapy.  Because eating any type of solid food meant that Kate choked—you need to be able to move your tongue to move food onto the molars to chew—she was extremely orally defensive.  We weren’t able to brush her teeth, she refused to drink from anything but a bottle—no sippy, no straw cup, nothing.  The eating therapist had her work cut out for her.

Now, remember what I said earlier?  At 18 months, Kate could only drink 4 oz of milk from the bottle at 1 setting.  The day of the surgery--  she drank 10 oz afterwards.  10 oz!!!  She also ate 3 strawberries that day.  This was a child who had never had any table food to eat before other than small bites that she’d immediately choke on and then spit out.  This was progress.

Later on the day of the surgery, I was watching Days of our Lives on the TV.  This was a show Kate had seen numerous times, yet on that day, she turned and looked at the TV as though she were hearing it for the first time.  The ENT said he had removed so much gluey, sticky fluid from her ears, it was incredible.  We had made the right decision to put the tubes in.  Her body wasn’t draining that fluid and it would just sit there and breed ear infections.

Now her tongue was free, her ears were unclogged.  We naturally hoped and expected that she would start coming out with words.  She was 22 months old at this point and I kept waiting for that language explosion.

I waited.

And waited.

And waited some more.  It never came.   By the time of her 2^nd birthday, we had been able to orally de-sensitize her enough to get her to use a straw cup and brush her teeth.  She was beginning to accept more and more foods into her mouth, so we moved over to 2 hours of speech therapy per week.  At age 2, she had no words.  Not even Mama. 

My heart broke on a daily basis.  Over and over.   My days were measured by one thing and one thing alone—how Kate did during her speech sessions.  If she had a good session and was cooperative?  My day was great.   Did she tantrum?  Did she not want to participate?  Did I feel as though for every step forward we took 2 backwards?  You can guess how I felt on those days.

We ate, lived and breathed speech therapy.  We never gave up.  Some days I didn’t want to keep it up.  Speech therapy is funny in you can’t ever take a break.  Not if you’ve got a long ways to go and you want your kid to get there.  We only had 1 child at this time, so fortunately could fully devote ourselves to her therapy. 

We still weren’t vaccinating.  Well beyond the age of 2, we had reached a point where Kate should have not only had words but she should have been speaking in sentences.  She wasn’t.  Just beyond her 2.5 year old birthday, she said the word Mama and it was heaven to hear!   But there was clearly no doubt she was significantly delayed at that point.

You’re probably wondering what happened as she got closer to her 3^rd birthday and the age at which she would need to age out of the Early Intervention System. 

Believe it or not,,she made huge strides between ages 2.5 and 3.  Huge enough that she was able to graduate a week or two early from the program due to her huge strides.  I was feeling good, she was feeling good, and we were confident that she was on the right track.

Around this time we began a relationship with a very special speech therapist, Sheryl, who was working in one of the premier Children’s Hospitals in the area.   I would take Kate to Sheryl every year for a private evaluation.  This relationship eventually became the lucky card in my back pocket.

Sheryl agreed with the Early Intervention Speech Therapist’s findings.  Kate had made major progress, she was still delayed but minimally so and Sheryl felt we could take a watch and wait approach for the next 6 months.  Keep her out of speech- let her enroll in a preschool program—see if the interaction with other children who have strong language skills would benefit Kate.  This was our plan.  I was very upfront with her preschool teachers as to what her issues were.  I asked them to keep me apprised of any problems.  I frequently questioned them at drop off and pick up as to how Kate was doing.  None of them ever expressed any type of concern or led me to believe she was struggling in anyway.

I arrived at the conference in March.  March.  6 months after the school year began to learn that Kate had never, ever said a word in the classroom.  She had 1 special friend, who she frequently played with and that was it.  I was furious.

I immediately called for the district to evaluate her and got her an appointment with Sheryl.  Her language delay, both receptive and expressive, had grown from 3 months to nearly a YEAR.  She had a year’s gap between her chronological age and her ability. 

To be continued...