A Not-So-Brief History
Grady had a few ear infections in the Spring. His balance was often wobbly, his eye contact was questionable, he didnt respond to his name regularly, and I just knew something was "off". I took him to his regular pediatrician who said she understood my concerns. She did not notice his lack of eye contact, but she did notice his balance was poor and that he "just seems like an unhappy kid, which might just throw you off since Whitney was the opposite." I was really questioning his hearing, but she said "the amount of fluid in his ears is not significant enough to impact his hearing or his balance." I left the office in July with a referral to a developmental pediatrician and an audiologist. I went to the car, loaded Grady in his seat and turned on his movie and just cried. I called the audiologist to make an appointment and she said that I would need to see an ENT if he needed tubes. So I went back in the pediatrician's office and requested a referral to an ENT. I went back to the parking lot and immediately made an appointment with an ENT for the following week.
The ENT and audiologist told us that Grady had a 50% hearing loss and that the fluid in his ears was A) infected and B) definitely enough to effect his balance since "ANY amount of fluid in the ear canal can cause vertigo, headaches, and poor balance."
So that was on a Friday and we were scheduled for tubes the following Monday, bright and early.
We left feeling like we had finally solved the riddle and were on the path to helping Grady's speech develop, his balance improve, and I even thought it might help relieve some of the sinus pressure that (i assumed) was causing him to blink rapidly from time to time. Finally! My baby boy was gonna be free from headaches and ear pain and his speech would take off!
Notsomuch. Grady got tubes on July 29th. We all noted that his balance did improve significantly almost immediately. We waited days and weeks for his language to explode, but we still got the same "bah, mah, mih, buh" sounds. And now, three full months later, he still hasnt gained any new sounds or true words.
EVERYONE and their mother has told me "He's just a boy. Whitney does the talking for him. He will have that language explosion and you wont be able to get him to shut up!" but something told me all along that something just isnt right. I get it. Your kid didnt talk til he was three. Your nephew didnt say one word until he was 18 months and then he decided to speak in sentences. I KNOW those stories. I happen to love those stories. And I cant tell you how many mornings I entered Grady's room in hopeful anticipation, wondering if he would greet me with "Hi Mommy! May I please have pancakes for breakfast?" Grady is exceptionally smart. His receptive language (how much he understands) is almost an entire year ahead for his age, but his expressive language (how much he talks) is only at 9-12 months. Not a terribly significant delay, and really, when he's up against the other kids in his gym class, he doesnt appear to be talking any less than anyone else his age. He could technically still be "just a late talker". But the sounds he DOES make as "words" just dont sound right. Words are a struggle for him, and as his world expands and his wants and needs grow, his limited vocabulary is starting to really frustrate him. Of course, ive been going a little bit crazy all along, spending all day with a silent sidekick, but now that its really obvious that he's struggling with things he shouldnt be struggling with, its really worth investigating deeper to rule things out.
Grady can name most of the 26 letters of the alphabet. He's been able to do that for months. But he has lost a few sounds along the way. He used to tell Bailey, "go, go, go" though it came out more like "guh, guh, guh". He no longer says anything remotely like that. He used to happily smile and say, "geh!" for "again!" when I would swing him around the room or toss him in the air or sing a song he liked. Now, he looks at me like he WANTS to say "geh", but he forgot or the word escaped him. And anytime a child LOSES words or sounds, that is considered "clinically significant." I mentioned this to TWO of the other pediatricians in his pediatric group, and neither of them found it interesting. When we were there for the flu/ear infection earlier this month,and again when I was there on Monday for another suspected ear infection when his balance was just SO terrible again. And both times, the pedi said he could be gaining other skills or working on other emerging skills, and that's why he wasnt saying it anymore. It could be that he is stubborn and just doesnt want to say it anymore. Both pedis also said that his sudden increase in rapid blinking "episodes" was likely a temporary "tic" that would go away. They both agreed that his blinking was most likely due to the stress of the stitches/ER/gash in his lip and chin situation, and that "infants and toddlers often get tics when going through stress. They said it would go away on its own over time. All things I would love to believe. But I just still feel like something is "off".
When I took him back to the ENT earlier this month to have her check his hearing and make sure an infection cleared, she noted that Grady is "extremely intelligent" and clearly able to produce sounds, so his speech SHOULD have improved signficantly since his tubes were placed in July. She sent me for a referral to a Speech and Language Pathologist (SLP).
I made the appointment right away and also called our county Early Steps program to get him evaluated. In the mean time, Grady's poor balance was a factor in his first ER visit and first set of stitches when he put his teeth through his chin two weeks ago. I took him to get his stitches out and two days later he had his first speech evaluation.
We happen to live close enough to a nationally recognized Speech and Language professional who owns and operates a therapy practice nearby. We were happy to get an appointment quickly and I was thrilled when Grady cooperated nicely for his assessment.
I should stop to note that, through ALL of this, Grady is happy. He is relatively laid back compared to otehr toddlers I know. He goes with the flow. Is easily entertained and kept happy. He laughs and chases his sister, he loves to be cuddled and tickled. He loves to color and dump toys and can do simple puzzles already. He interacts with adults and children nicely. He gives hugs and kisses. He pretends to cook in his play kitchen, pretends to feed it to his monkey blankie. And he exhibits other social and emotional skills that are "ahead of average". He LOVES to be read to, and especially loves taking our fingers and pointing to EVERY single picture in ANY book he brings us. The kid WANTS to know words. He WANTS to talk. He WANTS to learn. So why arent the words coming?
We went last week for the assessment at "BandAssoc.". In a VERY rushed 30 minutes, the therapist was able to determine that Grady has a weak jaw, and that is why he doesnt talk yet. Okay. Makes sense. He doesnt love to chew tough foods (but he will), and if some oral motor exercises are all its gonna take to get this Dude talking, then we were on board! But again, in the back of my head, I kept thinking "its something more than that."
I went home and googled and talked to friends who were a wealth of SLP knowledge and support. Moms who have been there/done this with their sons, friends from high school who grew up to be SLPs, and even just friends who wanted to say 'good job" for not giving up when I KNEW something wasnt right. The SLP noted Grady's diagnosis as "dysarthria". She specifically made me promise NOT to google it since it was not REALLY what he has, but was most closely related to his status, but she wanted insurance to cover his two-times-per-week plan. She told me dysarthria is typically associated with speech after a stroke and in geriatric patients, and that he does NOT have it. But in my effort to learn more, I youtubed it. In reading and watching more about dysarthria, and in talking with more SLP friends, I stumbled upon the term "apraxia". I watched some very disheartening videos of kids suffering from apraxia, and while I prayed that Grady didnt fall into that diagnosis, I sorta felt like he does display some of those characteristics.
(Because Im nice and I know youll Google it: http://www.nidcd.nih.gov/health/voice/pages/apraxia.aspx)
"One of the most notable symptoms is difficulty putting sounds and syllables together in the correct order to form words. Longer or more complex words are usually harder to say than shorter or simpler words."
"Children with developmental apraxia of speech generally can understand language much better than they are able to use language to express themselves. Some children with the disorder may also have other problems. These can include other speech problems, such as dysarthria; language problems such as poor vocabulary, incorrect grammar, and difficulty in clearly organizing spoken information; problems with reading, writing, spelling, or math; coordination or “motor-skill” problems; and chewing and swallowing difficulties."
Grady can tell you the sound a 'U' makes, "uuuh". And he can tell us the sound a "P" makes. But he can not put those two sounds together to say the word "up". So my mommy brain gets going and I wonder why his jaw is strong enough to form all the sounds of the alphabet independent of one another, but not strong enough to put them into simple words like "up". I wonder if it's his adenoids or his tonsils. I wonder if its apraxia despite the first SLP telling me it is not apraxia. That was last Wednesday, October 23rd.
So time goes on, my back goes out, Whitney has some minor school issues nagging at the back of my mommy brain, and I just cant shake this feeling that something isnt right still. On Monday, Grady's balance was off and he just seemed lazier than usual, wanting to sit in my lap and watch movies and not really play like usual. After going to my own chiropractor appointment and talking with her about his issues, she suggested she might be able to help. I scheduled an appointment with her and then took Grady to his regular pediatrician for yet another suspected ear infection. Nope. Wrong again, Mom. No ear infection. No yucky throat. Nothing wrong. "He's perfect!" Just wobbly again, pulling on his ears, blinking strangely from time to time still, and he's now lost a pound since his last appointment one week ago. Sigh. Okay. Moving on to the chiropractor for some help, and then another speech appointment this week.
So yesterday morning, Grady had his second speech session at BandAssoc. This time, Mrs. B herself, the owner and operator and fabulous SLP would be our therapist and I felt great knowing that Grady was under the care of someone who has made this time of work her life's mission and her livelihood. Mrs. B took one look at Grady walking into her happy, toy-filled office and said, "What's with the tip-toeing, Mom? Does he always do that?" I laughed and said "No, thats a new event. He has never really been a toe walker before but he's suddently doing it more and more. Is it a big deal?" She said that his weak jaw muscle COULD also be related to overall low muscle tone, and that it was worth checking out just to cover all the bases. She set me up with an appointment the next day with her physical therapist for an evaluation, and then she went on to evaluate Grady and work with him. Grady worked for her nicely, doing all this exercises and cooperating well. Having educated myself via google and some fabulous SLP friends, I asked Mrs. B if she believed Grady has apraxia. She said "it COULD be called a form of apraxia because he is having difficulty pulling the sounds together and spitting them out", but she said once the structural hurdle (weak jaw) was overcome, that any suggestion towards apraxia would more than likely disappear since he wouldnt have to be working so hard to physically form the sounds, and could focus more on choosing the right sounds. Made sense. Sorta. But again, I was up ALL night praying and wondering and worrying and praying some more because something just tells me that something is "off".
So we get up this morning, my back is a nightmare but I absolutely HAVE to get this kid to this evaluation because I want to put all the pieces together to rule everything out and have a clear understanding of his strengths and weaknesses. My chiropractor saw Grady yesterday afternoon and noted that he did not appear to have low muscle tone and she would be shocked if the doctor told me he needed physical therapy. She said that she felt some irritation or inflammation up near his C2 or C3 joints, but that it wasnt enough to lead her to believe that his jaw was weak because of it. She was able to adjust him on the first try and he cooperated and loved playing with all the tools in her office. She said that she thought maybe his back and spine would be so out of line that it could explain his jaw weakness and maybe his speech issues, but that she just didnt find that after examining him. I was glad to at least have tried the adjustment and grateful that Grady so easily goes along for this adventure with little more than a request for puffs and milk along the way.
Back to this morning. We went to the physical therapy appointment which is in the same building as the speech therapist. She wasnt really someone who I would classify as "great with kids", which is especially disheartening since she WORKS with KIDS ALLLL day long. But I went with the punches in an effort to get him sized up some more. She measured his legs and looked at his walking and watched him jump on the trampoline and climb through her messy gymnasium office. She watched him blow bubbles and measured his arms. And right after she watched him go up and down a set of stairs a half dozen times, she looked at her watch and said, "Well Ill need to see him again." I asked, "For what?" and she said, "Well, to finish the assessment. I have another patient right now and 30 minutes wasnt enough time to get the evaluation done."
Oh. Hell. No.
So I sorta went Mama Bear on her. I told her that this child may be just another patient to you, but he is my son and he needs and deserves answers. I told her that I was not leaving until her job was done. I told her that her next patient was not really my problem, and that she shouldve planned her schedule better knowing she had a toddler evaluation to get done. She was minimally apologetic and, I think, taken aback that I would get loud with her. As she walked out of the room, me following her in tears, my aching/throbbing back trying to carry Grady and a diaper bag full of snacks and bribes to get my kid to perform and cooperate and make HER job easier, we happened to walk into none other than THE Mrs. B. The woman who runs the place and who met Grady just yesterday, and spent 30 minutes with my son. The woman who then proceeded to introduce herself to me as though we had never met.
I told her that "I know who you are. You worked with Grady yesterday and, in fact, you are the reason I am here right now, being hustled out the door by your physical therapist."
I let her know my frustrations. She let me know she was sorry and that she wanted to make it right. She asked the physical therapist to explain all she was able to learn in the 30 minutes she spent analyzing my son. She asked me if I had any questions and she told me that I was right for standing my ground and demanding respect for my son, her patient.
In the end, we learned that Grady has several things that, in and of themselves arent really big deals. But when combined together in one child, they COULD be clinically significant.
-the blinking tic
-the lack of vocabulary or any new sounds in 7 months
-his wobbly nature despite clear ears and no fluid
-his recent tip-toe walking
-the loss of certain "words" and sounds he once repeated readily
-his weak jaw despite the fact that he grinds his teeth
-the fact that he will allow anyone to examine any part of his body (trunk, limbs, feet, etc), but he immediately winces when anyone tries to touch his neck or the base of his skull (the chiro and the PT noted this)
She lined up all these details and said, "If Grady was MY son, I would immediately get him in to be evaluated by a pediatric neurologist. You just want to rule out any tumors obstructing his vision or preventing his development." The PT said that "structurally, there is NO reason he should be tip toe walking." In fact, he is especially flexible in that an average kid has a 60 degree range of motion in their hips/legs, and Grady has a 75-80 degree range of motion. I asked what the meant or what they could imply and she said, "It just means he's flexible. But that flexibility and the other things she found along the evaluation show that Grady doesnt have tightness in his calves or hamstrings or in areas that would lead to toe-walking. Now, who knows? Maybe the Dude just figured out that he can tip toe and he thinks its a cool way to walk!? Maybe he sees cool spots when he blinks really rapidly and that's why he blinks weird from time to time?! Maybe he needs to do a few crunches to strengthen his core and help with his wobbly, drunken walk?! And maybe his neck is just ticklish and that's why he doesnt like it to be examined or touched?! And maybe, like every well-meaning friend and family member have suggested, he will wake up one day and just start talking in paragraphs?!
But everyone has this instinct that alerts you when something just doesnt feel "right". And my mommy-alert button is going off, and that combined with the loss of words and sounds is enough for me to go into a little bit of panic.
I am exhausted. Physically, my back is a mess and i havent slept well in a week. And emotionally, I am so drained from thinking and over-thinking this whole scene that I KNOW all i can do is wait til our neurology appointment on November 15th, and just pray.
Grady continues to be his happy little self. Laughing at a squirrel as we walked to the car from the therapy offices. He loves his Mac and Gramps and enjoyed spending time with them this afternoon while I picked Whitney up from school. He loves riding in the golf cart and trying to steal the ipad from his sister. He is completely oblivious to the trauma he is causing in his mother's life :) And that works out nicely for both of us.
Does he have a brain tumor? I dont know. Does he have something going on that I cant fix? Yes. But my friend Julie always says "it takes a village", and I truly believe that. The help from my parents, always ready and "on-call" to babysit or pick Whitney up from school at the drop of a hat. The support from Eric who answers my phone calls at work regardless of what fancy, important meeting he is in. And all the texts, messages, emails, phone calls and silent hugs are SOOOO appreciated.
We will get through this. We dont even know what "this" is yet. It might be nothing! But while we work through it and figure out ways to help our son be happy and strong and successful, we really appreciate all the prayers and support from our loved ones. THANK YOU!
We got this.
And
GO SOX!
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