Tuesday, 5 November 2013

Appointment marathon: check.

We had a lot of different big doctor's appointments these past weeks. I am glad that we are finished now for this year because it was really very exhausting. Some places we have to visit are rather far away and the traffic is just crazy lately.

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Last week we went to the paediatric ophthalmologist. He checked Sunny's eyes and wanted to see how he had accepted the new glasses he had gotten in summer. The transition to the new glasses was rather unproblematic except for the fact that Sunny had also needed a new frame which is completely different to the one he used to have for years now (same model in different sizes). So that was a bit problematic because the new frame is lighter and has different pads and, therefore, feels different on his nose. It took him a few days to get accustomed to it.

As for Sunny's strabismus there is news. We had to patch his right (better) eye for years now because the left one used to be not in alignment. Now it seems that his right eye has taken over and is the one that is not in alignment so we were requested to stop patching his eyes immediately. Our next appointment will be in February and we will then decide when he will have eye surgery, depending on how his strabismus develops until then or it if stays the same as it is now. Of course I am not happy at all that he needs eye surgery but I was aware that it would be necessary sooner or later so it was no shock for me because I was prepared for it.

The ophthalmologist complimented me for patching Sunny's eye for so long. He said that he finds it impressing that I pulled it off for such a long time. It was nice to hear that but I guess the praise is on Sunny since he had to endure all of it. 

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We also had a follow-up EEG last week. Sunny was so brave and after a bit of discomposure when he was prepared for the EEG he was such a good boy. He was calm and relaxed while I had him sitting on my lap and read one of his favourite books to him. The results were, expectedly, the same as last time so the diagnosis "Rolandic epilepsy" remains as the sword of Damocles hanging over our heads that another seizure may happen any time or never again. I pray to god for the latter.

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We also had another genetics appointment. At the moment there is only one more examination and diagnosis method that medicine science can offer us and we agreed on doing it. More than 500 of Sunny's genes will be sequenced now. I am split somehow in whether I want to have a result or not. I have written about this before. So I am not sure what to wish for. Weird, isn't it?

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Then we had our annual appointment with Sunny's developmental paediatrician. He always asks a lot of stuff, checks on Sunny's health status, wants to know what new things he can do since our last appointment, and also makes some tests with him. It is always a lot of work for me to prepare for this appointment because I need to put a list together on all the things that happened in the last 12 months. Which is always a lot. If I do not prepare the list I forget many things so I have to work hard in advance for it. The developmental paediatrician also makes sure that a child gets the therapies it needs but in our case I already take care of that and do this together with our regular paediatrician so, in all honesty, the appointments with him do not take me any further. He agreed that he could not really support us with anything because I am doing such a good job with all of this which is why he suggested to see Sunny again in 2015 and not next year. Which is just fine for me.

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Back in September we also had the final follow-up examination with regard to Sunny's surgery back when he was still a baby. I wrote about that already.

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Oh, and not to be forgotten, some news about Sunny's teeth. The first incisor has made its way out and while it comes out in second line, just as the dentist told us, the milk tooth in front of it is wiggeling a bit. So I hope it will be pushed out naturally and that we will not need to have it pulled.  

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So can I just say how glad I am that I can cross all those appointments off my list? I just hope that the next weeks will be a lot more relaxed with Christmas slowly approaching. It is time to slow down and take a deep breath as the end of the year is already on the horizon. The year rushed by so quickly!





8 comments:

  1. Breathe. you are through the appointment marathon and can just relax knowing you have done everything you can to make Sunny the best he can be. I am so happy he relaxed during the EEG even if the results were not what you hoped for. I'm so happy that now you can just enjoy the next few months without worry.

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    1. Thanks Kerri! xoxo

      I am happy, too. I) just hope the genetics will not bring up new things to worry about. :-/

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  2. Wow, you were busy!! For how long have you been patching Sunny's eye every day? I'm asking because we now have to patch Violet's eye for most of the day and she's developing a mild rash from the adhesive. We didn't have that problem before when we patched for 4-6 hours. Which brand are you using?

    I hope that Sunny won't have any more seizures, and isn't it a great compliment from the doctor that he cannot help you mich because you're doing such an awesome job! You rock, Joy ;-)

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    1. We have had various time periods how we had to patch his eye. The final one was four full days of patching and then one day without.

      We use Ortopad patches. We tried a lot of different brands but Sunny developed rashed from them all except for the Ortopad patches.

      Thanks, you are right, it really is a compliment. :-)

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  3. One of the things I love the most is flipping the calendar to a brand new month and seeing all the blank spaces! It's fleeting though since I immediately have to write down everything coming up for us!

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    1. Same here, exactly the same! I enjoy the blank calendar, too, for approximately 5 seconds ;-)

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  4. It seems like they snowball on one another. I feel like our life is the Amazing Race: Medical Edition. I relate so much to your feeling of ambivalence towards the genetic test. I have had my fill of complex emotions.

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    1. Nailed it, that is exactly what it is re: the Amazing Race! :-)

      Sorry to hear that you went through all the confusing feelings with regard to genetics, too.

      Thank you for taking the time to comment!

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