And our journey continues...

We had a very low key christmas that year. Jose was in denial and I just blamed myself. Was it something I ate? Was I exposed to something? Was it the antibiotics that I had to have to combat an ear infection?

I guess we were just grieving, something that we later found out is perfectly normal. Grieving for our daughter, for this unexpected journey, for the future that was oh so scary. To say it was a hard time is an understatement. I was still trying to recover from the delivery, then trying to cope with this unknown medical condition.

So we did what most parents do these days, we Googled. Joses mum was the one that discovered that our daughters condition had a name. Microtia. With further research we discovered that there are many options available for children with this condition. We were excited!! ok... we can do this, they can fix her ear and all will be well.. WRONG.

Then the letters from the hospital started coming. And kept coming. First appointment up was with the audiologist. We were naive. We expected that although she had a little ear that the hearing loss in that ear would be minimal . We were wrong. "Normal" hearing can hear up to 20 decibels. Aaliyahs little ear could only hear to 80, a 60 decibel deficit. We were given our options as far as audiology were concerned. They stated that she could have a bone conductor hearing aid, or we could leave it as she had one good ear and plenty of people have survived with hearing on one side. We opted for the hearing aid. This is due to the research that we had done. We had found that there were indeed many detrimental effects of single sided hearing loss, including 20 times more likely to end up in the emergency department, speech and language delays and the list went on. Aaliyah was 9 weeks old when she received her hearing aid. We have since upgraded to a better model but the fact that she has been aided since so young has really been beneficial.

I wont bore you with all of the appointments that we attended in the first few months but will include the list:

*Paediatrician (x3 in the first 6 months, now every 6-12 months)

*ENT (Ear, Nose, Throat, x2 in the first 6 months, now every 6 months)

*Plastic Surgeon (the one we saw, we hope never to see again!)

*Cardiologist

*Opthamologist (Eye doctor)

*Neurologist

*Audiologist (x4 in 6 months, every six months since)

*Auditory verbal therapist

*Hearing loss support worker (she was sooo wonderful and such a support)

*Cardiac Echo

*EEG

*ECG

*Femoral ultrasound

*Kidney Ultrasound

*We were referred for Aaliyah to have a CT however it would have to be under general anesthetic so we have deferred until she is older.

During this time I was still seeing a physiotherapist and a gynecologist due to my injuries during delivery.

To say it was a stressful, tiring time is an understatement, but we got through it. We had support, our families were and continue to be wonderful. We really are blessed.

What we learned from all of these appointment was that besides her ear, Aaliyah is find. Something they didnt think possible. Most children with Microtia have some sort of other medical condition or syndrome attached to microtia. We will have to keep an eye on her kidneys as they are the often affected with microtia children. However so far, all is good, her scans showed perfect kidneys as did her blood tests.

A note about the plasitic surgeon. We were full of hope when we saw him (when Aaliyah was about 3 weeks old). He took one look at her ear and said , "if I were you, I would just chop it of and put a prosthetic ear on " yes those were his exact words. We were crushed, then we were determined, we would find a better option for our daughter.... so the research continued...