Playing catch up/MRI scan

I desperately need to play catch up now im so far behind and need to post this now as I am currently sitting in auckland in bed at Ronald McDonald house at 10:30pm and need to update you on where we are at.

So going back to February we had a paediatrician appointment for Eva, Eva and I went while we waited she won the hearts of all the ladies in the waiting room. we went through a bunch of questions regarding family history, Eva was weighed and measured, we were told about some different sysndromes and causes of deafness and that most the time it is due to genetics or there is no answer at all. We were given forms to get blood tests done for a couple of genetic tests and also to have an ecg done.

In February we also had a ENT appointment at Rotorua hospital. , eventually we were called in and to be honest it was abit of a waste of time, we got asked a few questions about Eva’s hearing and if she had hearing aids, I filled him in on where we were at and we were sent on our way.

At the start of March we had our very first baby sign language class with a lovely lady who travels from Tauranga to teach families with deaf children in the area. The whole family came Along as we are all very keen to learn since Eva won’t be hearing 100% of the time. It was so much fun, we learnt the alphabet, our names, hot and cold, sore, where, how, what who and when and a few more bits and pieces! Since then we have also had our second sign class, where we put to practice what we had already learnt, we also learnt most colours and practiced some other things as well like breakfast lunch and dinner. We also came up with some nicknames (some better than others) sue (our teacher) had a giggle as she picked up on the fact (nicola) my big sister tries to make up her own kind of language too! We have been practicing our signing with Eva and she thinks it is so fun and giggles away and has recently started waving back to us which is very exciting!!

Grandmummy has been  using loads of fun headbands that she is going to adapt for eva to hold the processors on her head so she won’t have to have them on her ears, big brother likes them to!

We have also had another habilitation appointment up in Auckland. At this appointment we went through all Eva’s milestones and tested her motor skills like, picking up a bottle, picking up little cubes with both hands, changing them between hands, looking under something for a toy, etc. Based on these things Eva is ahead with her motor skills and is doing some things in the 11-12 month bracket which is fantastic! We also noticed that Eva was reacting to a lot of sounds in this session which was interesting. It was a very good and fun session. After this we headed on over to the audiologists.

At this appointment they wanted to do another couple checks with Eva because of the responses we had been seeing. They first tried the test they do on older kids where they make a sound then the kid looks over to where the puppet pops out but Eva was still to young and couldn’t get the hang of it. So next they tried the one where they put the little bits in Eva’s ears and played noises at first she responded extremely well looking up and away from the distraction and straight ahead, after those few there were no more she picked up on. The ones she’s did pick up on were  the vibrational sounds. On the way home from this appointment the sun was shining so we decided to stop off and get some pita pit and head to the Hamilton gardens, we sat near a pond ate our dinner then had a little wonder it was beautiful and such a relaxing way to end the day.

Since then we have also had a habilitationist appointment in Hamilton which was so much easier. We practiced Eva’s ling sounds and did some more songs with her and spoke more about what happens after the surgery.

On the 10th of March Eva and I returned to Rotorua hospital for her MRI scan, we headed to the children’s ward and got her all ready, she was starving since she couldn’t have a bottle since midnight! We put her in her extremely large hospital scrubs and at around 9:45 headed down stairs, I took Eva in to the room where the team were waiting, the anaethetist warned me it wouldn’t be pleasant she said she would fight it and struggle, no Eva just smiled and drifted off to sleep in my arms. I put her on the bed and left. I was told the scan would only take 20mins but if there were any signs of growths it could be up to an hour. Well imagine my worry when an hour comes and goes, Eva was gone for an hour and a half, I went in to see her and she was so happy to see me and Even more excited to see her bottle she downed it and was disappointed when it was finished. We went back to children’s ward got a urine sample and finally got to head home around 2:30. For the next two weeks I chased and chased for Eva’s MRI results but our surgeon hasn’t received them yet! Finally on Thursday the 23rd of March I received no a letter in the mail from the paediatrician stating that the MRI was all ok, for some reason I didn’t feel like it was ok a pond wanted to wait until our surgeon spoke to me. Finally on Friday afternoon around 4:30 I got the call our surgeon said that parts of the MRI were fine BUT there were some abnormalities with it too, himself and the specialist radiographer had been reviewing Eva’s scan all day and decided they weren’t happy with what’s they were seeing and asked us to come up on Sunday (today) and get an urgent ct scan done in starship first thing Monday morning so they could see closer what was happening as it’s very rare. With this being the case they are now unsure if Eva will still be able to have cochlear implants we will find out tomorrow after our scan. We are staying positive and hoping for the best outcome for our beautiful girl….

 

ps: I apologise for any spelling errors or things not making sense as it’s very late and I just felt I needed to quickly get this post done. Attached are some photos from appointments and some from this evening at Ronald McDonald house, we are so great full we get to stay here i you makes life so much easier and the experience we have is always amazing .

 

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