I’ve bought a sewing machine, I wanted to try making children headbands ? I consulted the tailor and decided to give it a try. We’ll see about the results. I am planning to create a blog about Hela and to sell the headbands and processor pins, but first I need some materials and ideas… it is not as easy as I thought earlier. Today for the first time Hela said to me very clearly ?daj? (give).
May 8 2014
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Today we had a scheduled visit at Kajetany at 12:15 and then the admission to the hospital. The visit was delayed as usual, but the doctor proposed that if we lived in the neighborhood, we could have returned home overnight. I was delighted, even though we were already prepared for our stay at the hospital. They told us to be here next day, on the empty stomach.
May 9 2014 We’ve arrived at Kajetany on time, 8 am. Hela didn’t eat since 3 am, I only gave her some water. Today on the parking lot I saw a pretty 12-year old girl who had her hair brushed back into ponytail. She’s had two colorful implants ? the girl gave me good impression, I hoped someday Helenka would look the same way. We were admitted to hospital pretty quickly, they gave us the same room and bed as before. They told us to dress Hela in her pajamas and wait for their call. I’ve decided that this time Dominik would take her for narcosis, because of my bad memories from before. I didn’t want to feel it again (sadness, regret, the fact that I had to give my kid away for surgery). We’ve waited and waited, before Hela they took some older boy who was in surgery for two hours ? it turned out that his cochlea wasn’t fully developed, there were complications, they weren’t sure if the implant would work at all. Finally at midday there was our turn. Dominik took Hela, I gave her goodbye-kiss on the cheek and they went away. I’ve heard her from the distance, she was crying a little, but it was only because she was tired and hungry. She didn’t know what was going to happen to her. Dominik returned without Hela and we went to cafeteria. Such waiting was terrible… to be aware that our child is being cut… hard to describe that. We went to eat. Tried to do everyting t not think about what’s happening to her back there. I was thinking about work and Agatha. When I felt sadness, I tried to escape it ? I think it worked a little bit. I also took a sedative. After one and a half hour they called us. I quickly followed the nurse. Hela was lying on the bed and slept with mask on her face. After a moment she started to take off that mask, move her legs, I think she felt uncomfortable and was in some half-dream. She couldn’t stop tossing and turning so I take her on my knees, but she was still sobbing and moving.
The nurse put some painkiller into her drip and said she would fall asleep soon and that the medication would help. Hela slept for a while, but after a few minutes she woke up again, started to cry, pulled the wires, I didn’t know how to hold her because those wires were everywhere, also the syringe with blood close to her head. We both were very uncomfortable, I couldn’t stop her from moving the wires. Some machines started to beep because she finally disconnected something. The nurse who was supposed to help us came again, but she only said that the child is naughty and gave her some painkillers again. That comment didn’t seem to be appropriate, but well… Soon another nurse visited us and asked if we wanted to go to our room. I agreed with her that it should have been more comfortable and she allowed this. Dominik was waiting for us in front of the operating room; he took Hela from me because I had trouble holding her. We put our daughter in her bed where she fell asleep. Dominik went home for a while and left me alone with Helenka. I felt sorry for her. Her head in bandages, her face swollen, I think she had a fever, because her cheeks were red and she was hot. She slept for two hours, then woke up. I gave her some water, she couldn’t stop drinking, had to take the bottle from her, because the nurse told me earlier to not give her too much to drink so early after the surgery. But suddenly, Helenka looked at me, smiled and stood up ? showed me the painting of a squirrel and smiled. Then she cried ?amam? – she wanted food, so I gave her sponge cake. She ate it and wanted another one ? she was very hungry and in a good mood. I’ve asked the nurse if we can see the surgeon, she was surprised and asked me back ? why? Well, I wanted to know how the operation went, if it was successful etc. She told me that the doctor is operating until late into the night ? she would pass the message, but said we shouldn’t get our hopes up because such conversation was unlikely. Then I fell asleep for a while.
Finally the surgeon has called us. Dominik had returned from home, so he went to see him. The surgery was performed by dr Mrowka ? he was nice and told us clearly that everything went as planned. We were very happy about it. The days seemed endless, I was alone in the room, on one hand it was very comfy, but on the other hand it was rather boring. The place was empty during the weekend, the bar was closed, the whole place was calm… it was just us and one more boy, I think everyone else was out for a weekend. Time dragged on endlessly. They were supposed to remove the drain on Sunday, but it turned out there was too much blood gathered, so ? for safety reasons ? they decided to leave it there for one more day. That meant we would spend another day in that place. We were supposed to leave on Monday, but only then Hela’s had the drain removed and we’ve had to stay for another 24 hours. Hela was getting her antibiotic in the morning and evening, had her drain changed twice a day ? she was very afraid of the nurses, she was screaming or running away when she saw one coming. For 2-3 days I gave her suppositories for the pain, then I had problem with changing her diapers, because she was afraid of suppositories as well. On Monday new patients came and it became more crowded. A girl with her daughter came to our room, her child was the same age as Hela and waited for her second implant surgery as well. The newcomer told us (a) story about her kid who died at the age of eight months and about the present children, twins, one of them is deaf. They were calm and composed, sometimes we don’t have any idea what other people experience…
On Monday they gave us the complete processor set. I wanted to know how I can tell which one is left and which one is right, but the woman who gave them to me couldn’t tell. She only told me I should keep and eye on them… like it’s piece of cake to keep an eye on a little, energetic kid. On Tuesday we were released from Hospital, I was happy this is all over. At home things went back to normal. Antibiotics for another seven days and stitches removal on May 19. We were told not to cover the wound so it would ?ventilate? sufficiently. In the discharge paper they also advised us to not wash the kid’s hair for another 30 days and to keep her from physical effort for two weeks.
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May 19 2014
Removal of the stitches. We were supposed to be there between 9 and 10. We’ve arrived at 9:20, but the doctor called us into the office at noon. Such long wait… the whole visit took 7 minutes, maybe. Hela was crying, but when it was all over. Now we’re waiting for the connection. For some time now, Hela knows how to repeat words we ask her to say ? they are a little bit slurred, but a few weeks ago she couldn’t say them that well. New words: Babcia (granny), or babka (mud pie) – baba Kapcie (slippers) ? apcie I am afraid that I will accidentally attach the processor to the left side… Sometimes I am ?aiming? at the wrong side of the head ? probably wouldn’t be a good thing to connect the processor there.
May 20 2014
Helenka has been repeating some of the words after us, sometimes they are slurry, but when asked she says them again. She’s very good with vowels, says those without even looking at me: I,a,o,e,u. New word: tablet ? tablet (not clearly)
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June 01 2014
For a few days Hela has been having the fits of anger and crying. Sometimes I wonder what is happening ? on one hand I don’t like such behavior which might have had something to do with her upcoming 2-year old rebellious phase… but on the other hand maybe her head hurt where the implant has been placed. I felt helpless and thought that the doctors wouldn’t say anything smart about that. I will ask about the strong pain during next visit. Helenka’s had fits of anger ? she removes her implant, throws it on the ground and doesn’t want to put it on again. She cries, rolls on the floor, doesn’t want to be touched. These attacks go away after 30-50 minutes, then she was falls asleep. These are usually situations when she doesn’t get what she wants ? she cries then, and flies into rage.
June 09 2014
Activation of the second implant
Everything went just like the first time, the only difference was that Hela couldn’t stand still.
June 10 2014
New words: ptaki (birds), tatoo (dad), mamoo (mom), nie (no), pupa (butt), daj (give) When asked to repeat something, she does it every time, in her own way, but not far from the original word. July 01 2014 New Nanny, Aunt Renata seems to be very promising. She is calm, focused, she talks a lost with Hela, I can leave them together without feeling guilty.
July 01 2014
New Nanny, Aunt Renata seems to be very promising. She is calm, focused, she talks a lost with Hela, I can leave them together without feeling guilty.
July 06 2014
Hela’s talking more and more, I can’t even list all the new words she has learned. Many of them are unintelligible, but it is obvious she’s trying all the time. We are on the 4th program with first setting.
Buty ? buty (shoes)
Osia ? osa (wasp)
Mi ? mis (bear)
Agata ? Aata
Picie ? ciu (drink)
Pilka ? ilka (ball)
Bacia ? babcia (grandma)
Bawo ? brawo (bravo)
August 01 2014
Nanny Renata turns out to be great!
Co to ? co to (what’s that)
Mama choc tu ? mama choc tu (mama, come here)
Nie wolno ? nienoniono (not allowed)
Dzieci – dzieci (kids)
Gdzi tata? Gdzi mama? – gdzie tata, gdzie mama? (where’s mom, where’s dad?)
Hela’s starting to walk without the diapers. She can hold her pee and is signaling when she wants to go, but still doesn’t want to go on the potty.
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September 01 2014
Hela and her electronic EAR
Helena Gładysz was born deaf. She’s got two cochlear implants (one for every ear); thanks to them she can hear quite normally. She’s developing properly, she’s lively and energetic. Her hearing however needs some of our support. The implant consists of two parts: internal (implanted under the skin) and external, which is the speech processor with the coil. Both parts are connected thanks to the magnet, placed on the coil.
OUR REQUESTS AND ADVICES:
– there are moments when Hela’s taking off her headband with processors ? we don’t force her to put it back on. She can rest from sounds for a while. Then, we can encourage her to wear it again.
– We call the processors: ?ear?. When other people/children ask what it is we’d like you to say something like: ?It’s Hela’s electronic ear. Some people wear glasses to see better, Hela’s got electronic ears to hear better. When the ear is disconnected she doesn’t hear anything and we have to touch her to show her something or point a finger or make a gesture.?
– Hela never wears electronic ear when sleeping
? we’d like the Aunties to put the device somewhere safe and turn off the power (see: picture 1).
– The processors are powered by batteries; those may run out of charge, which is signaled by a red diode if the processor doesn’t work, Hela very often comes and points at her ear that she doesn’t hear anymore). The batteries need to be replaced (see pictures 2 and 3).
– The ?ear? isn’t waterproof, so watch out during washing her face and hands
? no splashing. – Please pay attention to whether or not the coils are still connected after putting the cap on? Hela usually signals she can’t hear when the coil is off.
– Speak to Hela a lot, with normal voice.
– Implanted kids have it harder in places where there’s high intensity of noise, then there might be difficulty with understanding some specified command, you just need to get closer and repeat it.
– for any additional questions, contact mother at (?..) and father at (?..).
PICTURE 1 ? Processor On/Off
PICTURE 2 ? Flashing diode, signaling the empty battery
PICTURE 3 ? Switching batteries
1. Turn off the processor.
2. Pull down the plastic over.
3. Take the empty batterie
s with magnetic coil.
4. Put in the new batteries
5. We put the cover back (WARNING: the ?spout? must face backwards)
September 19 2014
Today we came to the kindergarden for the adjustment day. We’ve been there from 10 o’clock to half past noon. Our daughter is in a normal, private kindergarten ? comfortable situation, because there are only eight 2-year olds and two tutors. That factor affected my decision of sending Hela to this place ? teachers have better contact with children in smaller groups and may carefully help with the kids’ development. It was very successful day. I sat on the side and watched Hela participate in every game with other children. Sometimes she called me, even though I tried to isolate myself and be further away from her. We also went outside, to the kindergarten grounds, Hela practically didn’t pay any attention to me being there ? she was running and playing without any problems. The coil kept disconnecting when Helenka was jumping on the trampoline; but every time that happened, she ran to one of the ?aunties? to reconnect it. It seems promising, although I am afraid of the first days. September 20 2014 Sold the first size-sewn headband, the buyer bought it for her daughter with one Opus 2 implant. Today made it and sent, I hope it would fit and be useful for the child.