Johnny Speaks

When Johnny is focusing hard on a toy, or looking curiously at something going on outside and we can just see the wheels turning in his head we often say something like this: "I can't wait until we can hear what's going on in that little head."

We're still waiting. Johnny has such expressive faces. It's easy to figure out what he wants or needs. But he remains, for the most part, pretty silent. Sometimes he does pipe up and babble or coo or sing. Then we say something like this: "I love to hear your pretty voice!"

And oh how I want to hear more.

During the first week of Johnny's life, as we were receiving all of his diagnoses, his hearing loss was the least of our concerns.  I was getting letters and phone calls from all the deaf and hard of hearing associations in the state wanting to sign me up for their news letters, and get me involved with a mentor, and put me in touch with a speech therapist and sign language instructor.

And I was so annoyed!

My child is not deaf. He can hear. And his hearing aids are correcting the hearing loss he does have. So what's the big deal?

But as things have wound down with other medical needs, as he's gotten older, and people keep asking, "does he have any words yet?" and we keep saying, "no, not really." we've started giving his hearing loss more attention.

Johnny signing "help".

It's hard to say whether Johnny's speech delay is related to his hearing loss, or if it's a part of his shy and stubborn personality. He was born with a mild to moderate hearing loss, he's been wearing hearing aids since he was 2 months old, and theoretically with the hearing aids on, he should hear normally. But he is still at risk for speech delay.

Because of that risk, and the fact that he was 20 months old and had only one word ("up") we started weekly speech therapy appointments in January. They are first thing Monday morning and oh I hate starting the week with a frantic morning of hurrying to get diapers changed and breakfast eaten and coats on and out the door. And sometimes Johnny's shyness and stubbornness dictate the appointments and he doesn't do or say anything and I wonder if it's just a waste of time. But all and all I think it's been good.

Johnny signing "bath time".

The speech therapist first encouraged us to give sign language another try, which we had done very halfheartedly when Johnny was around 8 months old. We did, and within a week Johnny was signing more, all done, bath time, and milk. since then he has added help, open, diaper, waiving bye bye, and a very fuzzy version of the sign of the cross! It's pretty cute to see him sign, but it's even better to see how proud he is when he realizes he's communicating with us.

Johnny signing "more".

After he mastered some signs we started trying to get him to say the word with the sign.  This has been a lot harder than just signing. And it often seems like no progress is being made. But he is making progress. Before we started therapy the only word he had was "up".

Now he says all done, more, help, up, bye bye, papa, mama, hot, open, ("mmmpa") and sometimes he'll bath time. He also says ball, bite, and bus, but they all sound the same. And he babbles. He babbles all the time. Well, not at therapy.  At therapy he is basically silent. But at home he babbles all the time. He knows what he wants to say, and he's starting to say it to us.

And I love to hear his pretty voice.

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Follow Up

I realize that I need to tie up some loose ends from Johnny's birth story and bring you up to speed with where we're at now.

Since our stay in the NICU we have had several follow-ups, and we have had follow-ups from those follow-ups.  And we will have a few more follow-ups before Johnny turns 1.  And I imagine there will be more follow-ups after that.  It feels like we will be following up on things for the rest of our lives, and I wish we could just be done and settled.  But I am thankful that so far all these follow-ups have given good results.

Kidney ultrasound.

Of all the defects associated with VACTERL Syndrome the three they were checking out Johnny for were his heart, kidneys, and spine.  He had an ECHO done in the NICU that came back normal. And that was such a relief.  A kidney ultrasound showed that he has a "horseshoe kidney", which means his kidneys are connected along the bottom.  Kidney function appeared to be normal, but they would follow up with another ultrasound when he's a little older. The x-ray that showed some abnormalities in his spine was inconclusive.  The thing they were worried about was a tethered spine, which means that instead of hanging free in the body the spine is attached to something, which if untreated could lead to paralysis, but if caught early could be corrected with surgery. They would follow up on that with an MRI when Johnny was 3 months old.

Then finally, Johnny failed the infant hearing test, and a more advanced test showed he has a mild to moderate hearing loss. Hearing loss is associated with VACTERL Syndrome, so it was not a total surprise. He can hear, but if he doesn't get hearing aids he would be missing quite a bit and could develop some speech impediments. So we would also be following up with an audiologist to get him fitted for hearing aids.  It was sad to think that Johnny will have to wear hearing aids for the rest of his life.  It's just another thing to make him different from all the other kids. But after everything else we were dealing with hearing aids seemed like small potatoes.

Johnny tries his hearing aids for the first time.  He seems to notice the difference!

The second kindney ultrasound was good, no blockage visible, but they wanted to follow up with another ultrasound in 3 months.

The MRI also went well and no tethered spine was detected.  However he does have some curvature in his spine, and they noticed some abnormal curvature in the aorta of his heart. So we would be following up with an orthopedic surgeon and a cardiologist.

Getting ready for the MRI

The "orthopod" (as some call them), said that Johnny just is too small right now to be able to tell if the curvature in his spine will need any intervention.  So we will be following up at 6 months and 1 year of age.

The cardiologist had a lot of information for us, and I am very bad explaining it, but what it comes down to is Johnny heart is working fine and will not need surgery. There are a couple of mis-formed arteries, but they work.  And of course, he wants to follow up with another ECHO in a few month.

Waiting at the Cardiologist's office

And so we just keep adding things to our calender and keep thanking the Lord that nothing they have seen so far has been serious.  After getting the green light from all these specialists we were finally able to schedule Johnny's next surgery! And it's soon! October 28.  What a strange phone call that was, "Hi, I'd like to schedule a surgery for my son John."  Not something most parents have to do.  We are a little nervous, and sad that our baby boy has to go through this. But we are so happy to think that we might be done with surgery by the new year!

At the doctor with Grandpa!