Ears and Feet

Feet

A bit over a month ago, Maddy got new AFOs. She needs AFOs as her ankle joint is very unstable. When she stands, she stands on her ankle - and in the long term, she could do damage to her feet.

The AFOs that she has are not designed for walking. They are designed for infants, to immobilise a joint. The AFOs that are designed for walking at lighter, thinner and can fit inside a shoe.

A couple of weeks ago, we met with the orthopedic surgeon to discuss how the AFOs were working for Maddy. My main concerns were that they are quite heavy and they tend to slip off very easily. The problem is, though, that Maddy's legs are so short and fat that there is no "ideal" AFO for her. We are, however, going to try what is called a "Dennis Brown Walking Shoe". These are little leather boots which go over the ankle and are very supportive for little feet. We will go and have some fitted next week, and hopefully they will work better for Maddy :)


Ears

One of my current main concerns with Maddy is her hearing. I know that with cleft palate, and also with DD in general, hearing loss is not uncommon. Maddy has DD with a cleft and as such is more at risk for hearing loss. An article about DD that I read suggests getting hearing tests every six months or so during the first few years (from memory). I have been asking the doctors at the public hospital to test Maddy's hearing, and about 4-5 months ago, Maddy was apparently placed on the waiting list for a hearing test. After chasing them down, I learned that the machine was broken, but should be fixed soon. As I had a pediatric appointment coming up, I decided to wait and talk about it with them then.

Now, I know that Maddy can hear at least a bit - she does respond to noises (although sometimes she seems as though she may not hear, but I can't tell if she's just ignoring). She also responds to certain things that we say. BUT - she is now 15 months old and cannot say a single meaningful word, with the debatable exception of "mamamama" which she says when she is cranky. She also doesn't say a wide range of consonants, and hearing is so important to speech development at this age.

At Maddy's pediatric appointment, the doctor told me that it is not abnormal for the wait to be so long, and I shouldn't expect an appointment in the near future. The only way I could get a sooner appointment was to go to the private sector.

So, armed with the referral, I called a private ENT on Tuesday afternoon. He asked if I could come in the following day!! After all those months of waiting, I could get an appointment within 24 hours of calling a private doctor!!

Now, Maddy is at risk for hearing loss due to two different things - a) fluid in the middle ear due to cleft palate, and b) problems in the inner ear due to DD. The ENT first checked for fluid in the middle ear, and sure enough she does have fluid which could be causing some hearing loss. He would recommend that she has tubes put in her ear ASAP. He cannot accurately assess the inner ear until the tubes are placed and the fluid is drained. After this is done, she will need to have a special hearing test called an "ABR" which is performed under sedation and could indicate whether or not there is a need for hearing aids.

The complication, however, is that we cannot just rush Maddy into surgery. First of all, the private hospitals will not take her as it is necessary that there is an ICU just in case there are complications with the surgery. Secondly, they need a senior anesthetist for Maddy as she is difficult and even dangerous to intubate. So the ear tubes, logistically, cannot be placed until during Maddy's cleft-palate surgery. Last I heard, the doctors were planning to do this between 18-24 months of age, so still 3-9 months away.

The private ENT will be sending the public hospital his recommendation to do the surgery "as soon as it is safe to anesthetise her". Our next cleft appointment is a month away, and I will be urging them to consider surgery in the new year (I would ask for earlier, but we've already booked tickets back to Australia for Christmas!!). She will not grow significantly in a few months, so hopefully they will decide that it is "safe"...

We won't have any firm answers on Maddy's hearing until after the surgery is done!! "Wait and see" is the story of our life with Maddy these days ;)