Full Speed Ahead…
April 25, 2013
Last Wednesday, the seventeenth, was activation day for Gigi’s left ear! It is DONE! We met our goal…before we celebrate her first Gotcha Day anniversary, Gigi is hearing with both ears. It was a long and winding road and we’re finally there…a little later than we ambitiously planned, but we are there. The wonderful thing about looking back is realizing all the things we learned in the process of being held up. We have been able to share information with others who face insurance dilemmas, we were blessed to get to encourage other parents of kids with special needs who felt like they had exhausted all the routes, and we saw care and compassion and the goodness of people much more so than if things had gone smoothly. With prayer and persistence, we stayed on the road and had some interesting stops along the way. This week however, was full speed ahead…and I am running on empty!
At the activation appointment, we got into the room, which she is quite familiar with by now, and it was only a few minutes until she removed her right “ear” and gave it to me. She always has to take it off while the audiologist hooks it up to the computer for tweaking and she is certainly one for routines. When I first hooked the device on her ear, she looked at me as if to say “Umm, wrong ear Mom….” But she went with it and flashed L, the audiologist, some interesting looks. She sat pretty well through the testing portion of the process which is something like a series of beeps that increase in volume with all sorts of scientific meaning for those with a trained eye. Once this test is complete, some adjustments are made and its time to hear! Gigi actually responded a little more to this stimulation than the last. She jumped when she was first turned on and while she was nervous, she didn’t attempt to take it off over it. It was a bit loud for her at the start and she scowled and it wasn’t clear if she liked it or not. It did cause some involuntary twitching under her eye and in her blinking, which is caused by the fact that the facial nerves that are very close to the auditory nerve that is being stimulated and it is just an overreaction in that area of the brain to put it simply. Her right ear was turned down to help her have a little more balance and to stop the unwanted facial movements. As her brain gets used to processing this information, this twitching will not be present at lower volumes and she will be turned back up. We were again given four programs, progressively louder, to work up through over the weekend. By the end of our visit Gigi seemed genuinely happy about having two “ears” and was attending to sounds and speech more than she was before. Now, with two ears hearing, Gigi will more easily be able to localize sound and find the source. She is already used to having it on and delivers it to our hands immediately if it falls off for help getting it back on. Gigi was not a happy camper come Thursday morning!! The garbage truck happened to be out front as we went out the door to get on the bus and was quite loud. She was NOT going out that door! I took her new ear off, and carried her to the bus. She didn’t resist getting on or into her seat, and I put the left ear back on once we were on the bus. I was hoping that once the trash truck was gone, things would go back to normal. When Gigi got home, at 11:45ish, her bus driver, who is wonderful by the way, informed me that Gigi was crying and mad all the way to school and threw her implants across the bus. When they arrived at the school, the driver had to carry her into the building, where the teacher had to pry Gigi out of the driver’s arms. The day did not go well…and Gigi came home in the same mood. I struggled to keep her devices on from the moment we walked in the door. We had a hurried lunch and loaded up in the car. Dan was at a fire training, and I was off to see the wizard, I mean Dr. E. at 1:00, with Beck, an out of sorts Gigi, and a past nap time Sloan. It proved to be as difficult as I was expecting, Sloan had a melt down right when Dr. E. came into our room, which was loud for Gigi and caused some chaos, Beck then cried because it was loud and he was tired, it was a disaster…but Gigi looked good. Dr. E. was pleased with her weight gain and was pleased with her progress over the last few months. He was not surprised by the regression, hyperactivity, and melt downs that Gigi had that day based on the fact that her brain is working over time this week. He’ll see her in three months. Beck and Sloan were asleep before we were out of the parking garage, Gigi had taken off her shoes, her ears, and was attempting to wiggle her arms out of her seat belt. I took a deep breath and drove straight home. Beck and Sloan awoke renewed, while Gigi only declined. Lots of the self stimulating and coping behaviors that Gigi exhibited when she first got home a year ago came back, for brief periods, but back nonetheless. She rocked, she spun in circles, she slammed herself around, and when she got sleepy, she even regressed to the spitting on her fingers and rubbing them on her lips. I prayed for a better tomorrow and put her to bed. I wondered if we would even reach a point of turning up to program two this week. Throughout Thursday night, it thundered and the rain poured down. At 5:30 a.m. the phone rang with an automated message letting us know that school had been cancelled due to flooding. I am sure I was smiling as I returned the phone to the rocking chair by my bed and I knew Jessie would be thrilled to hear this news! Dan called shortly after leaving for day two of his training to let me know that several roads we needed to take were flooded so we stayed home from Gigi’s physical therapy as well. I thought it might be a good idea to lay low anyway, judging by Gigi’s behavior over the last few days. Gigi did better and I actually turned her up to program three by the end of the day for a short trial. She stopped taking the new implant off at some point during the day and things started to improve. She is most definitely responding to her name more often and looking for the source of a sound more often. The weekend brought a calmer end to the week. We got to play outside. Gigi is swinging on her own these days. She is only occasionally trying to get hit with the swing and she is actually laying on her belly and swinging! We tried to get her to do this last year, it did not work out. She hated it to say the least. SHe also twisted herself up on the swing and let it untwist!! Spinning is something that Gigi does not care for AT ALL unless her feet are on the ground and she is the one in charge of the spinning. Gigi’s reaction to spinning is one of complete and utter fear. This stems from her sensory issues and we were almost thinking it might be something she could never completely overcome. Needless to say, the sight of her twisting the swing made me very happy! On Monday, Gigi had her post operative appointment with Dr. F., the doctor who implanted Gigi. He checked behind both ears, said her scars looked great and checked the sight where her coils (the magnet) attach to her head. Everything looked good! He asked some questions about how things were going, and said he would see us in six months. After her appointment with Dr. F., we were off to the orthotics place to pick up her new foot braces. That appointment was quick and easy as usual and luckily they noticed that her new compression pants had come in as well so we got to pick those up too. On Tuesday, Gigi went back to school. I was a little nervous because she had been so out of whack over the week, but they have experienced a wired up Gigi before. I sent a quick email to her teachers and was pleasantly surprised when Mrs. N. responded to let me know what an awesome day she had! She was working on vocalizing “eee” “eee” “eee” while signing “eat.” She even started signing “water.” She came home and the good day continued. She even signed “water” for us at dinner. She was tired, from all the hard work I guess! She got her pajamas out to let us know she was ready for bed. We obliged and got her ready and laid down. Beck came in to give her a hug and a kiss, which she has come to expect and she even hugs them and kisses them back! He also asked if he could sing to her and he chose “Twinkle Twinkle.” She thought it was funny that he was there singing. As always, she took off her “ears” and gave them to me and I covered her up.
The morning, Gigi slept it almost an hour! She does not have school on Wednesdays, because it is her day for speech and occupational therapies. This day, her therapies were cancelled due to meetings. When she finally woke up, I let her know that she could get out of the bed, because she thinks she needs permission before getting out of the bed. We came down the stairs in our normal routine- get a diaper, then put your ears on. I hadn’t put her pony tails in yet, and when I did she resisted, which is not the norm. I thought to myself “one of those days, huh…” and then as I ran my fingers up the back side of her pony tails I felt something. “What’s in your hair girl?” When I looked, my heart jumped! It was a yellowish scab, in the shape of a perfect circle. The magnet on the inside of her coil had rubbed a hole in her scalp! This is bad news! How did this happen in one day!? I text messaged Dan at the fire station…he said “call dr fritsch.” Gigi already had an appointment to see “L,” her audiologist early in the afternoon, so I got the three “littles” ready to go. I left Gigi’s right ear off, and she continuously told me “uh, uh, uh” while tapping her ear. “I need my ear Mom!!” While I am glad she likes hearing and is able to tell me so, it was beyond exhausting. In addition, everything she could possible do the wrong way she did, purposely. She put both legs in the same leg of her pants, she tried to brush her hair with the handle of the brush, she pretended to not know any signs, even the ones that she has known for a long time now. On the way to the office, I pulled her right “ear” out of my bag and looked at the magnet, it was tightened to the strongest setting. I have no idea how it happened, and there is a handful of theories, none of which matter, because what is, just is. I was near a breaking point by the time we got to the audiology office. I walked in and soon, “L” was there to see us. “Hey guys, how’s it going?” Fighting a breakdown, I told her about Gigi’s ear and she took us back to the room. Beck and Sloan got coloring pages, and did better than I expected them to, especially considering the frantic state of their mom. Gigi was all over the place, climbing all around her chair, grabbing things, and making noise. She was bananas to put it mildly. It was very clear that Gigi would not be able to handle any kind of testing. “L” looked at Gigi’s scalp and to me seemed as surprised as I was that this could take place in such a short amount of time. She changed the magnet out to one with less strength, since we will need to be careful for quite some time and said that it was kind of unusual for this to happen so late. Keep in mind, this is the right side that has the problem, which she has been wearing all day every day for three months now. “L” then tested her internal equipment, in case Gigi had somehow hit her head and caused the magnet to damage the skin. It all looked fine. They ran one quick test and made a few quick adjustments. “L” decided it would be best for her to e-mail Dr. F. and let him decide if we should go in to see him. I thanked her, we cleaned up crayons, got the kids their stickers, and headed to the car. We stopped in at the fire station to show Dan the damage and we headed home to Neosporin and Tylenol. We got in the door, made dinosaur shaped PB and J and tried to relax. Wednesday just happens to be Jessie’s gymnastics day, and with Dan being on duty, everyone has to go. This is a regular occurrence, but today was nothing remotely regular. We could not skip gymnastics. Not only is it Jessie’s favorite time of the week, it was a skills test night, and somehow, every time something must be interrupted because of something Gigi related, Jessie is the one effected by it. I do not want Jessie to ever resent Gigi for this, and so we make every effort to keep Jessie’s events on schedule, attended by her parents, and just as special to us as they are to her. I did talk Jessie into walking into the gym on her own for the first time, so I could park the car and get the other kids situated before we came in. She agreed, and without being nervous jumped out of the car and walked in. She waved with a smile when she got to the door and I let out a sigh of relief. You see, everything in me said she was going to come back before she got to the door, because that is what kind of day this was. I got my breath while the kids watched a movie and when I felt calm, I got Gigi strapped in to the stroller, Sloan and Beck both jumped on to the riding platform and away we went. Gigi is always a mess at gymnastics. Something about being there sends her over the edge. She pulls at me, she pinches, she had even bitten me while we were there. She is always in the stroller when we go because of this. We walked in and Jessie was very close to us. The kids go down stairs and the parents can watch from above them. Rather than trying to find a seat with space for the stroller, I decided we were going to just sit right there on the floor and watch Jessie. I parked the stroller and Beck and Sloan sat watching through the bars of the railing. Sloan doesn’t sit still for long and so she was walking around and pushed the stroller up to the bars. I usually do not put Gigi close enough to reach them because I know she will grab them and move herself and the stroller around by pulling and pushing. It is a crowded place, so I just avoid the possibility of her crashing into someone. What I witnessed was bizarre. Her eyes zoned out, she held the bars with both hands and started to rub her face downward between two bars while she sucked her tongue like a baby over and over. These are painted metal bars, so if you can imagine her face was “skipping” down them as she rubbed. It was such a strange sight to me that I didn’t stop her immediately, but watched for a moment. She looked as if she had done this a million times before and a wave of heartbreak came over me. These colorfully painted metal bars are just like the bars we saw in Bulgaria – the fence that surrounded the playground at her orphanage, the fence that surrounded the playground of the deaf school, the bars on the windows of the buildings…this is what I have been putting in front of her face week after week. How have I never recognized this before? I thought it was the people, the noise, and the chaos of the gym that was sending her into some kind of anxiety…its the bars. Bars! I never saw her bed, but I wonder if it was a crib with metal bars. I have been sitting her in front of a trigger for this behavior over and over again. Yet, the behavior is not wild hysterics, it is not out of control at all…it is calm, it is sad. Tears welled up and I took her strange comfort away as I rolled her back from the bars. She deflated and I was left wondering if in that moment, she longed for “home.” She was not interested in any comfort from me and she sat and reached for those bright yellow bars with clear purpose. The bars like those that held her in year after year after year. I know that Gigi’s life has a great purpose, I know God did not set her into hardship for no reason, I know that His plan for her is perfect, but in that moment, I wished she had never spent a single moment behind bars…bars that bring her more comfort when she is in pain and riddled with anxiety than her mother of nearly a year. In moments like these, Gigi’s physical needs seem like the simplest of things. Her emotional and psychological needs far outweigh them. Those are hard things to deal with when you have a language barrier as vast as we do. So all we can do is pray, and thank God for giving us this girl as a daughter.
God, give us the strength to stand like those metal bars…to be as strong and steady in her next six years as they were in the first. Let us be the bars she reaches for and clings to and where she finds her comfort and her calm.
As far as Gigi’s scalp goes. Pray with us for it to heal. To my understanding, because the skin has suffered a recent trauma (surgery) there is some limited blood flow to the area, which makes healing a little harder. We are expecting a full recovery, because we shouldn’t expect anything less. However, in the event that her skin does not heal, it is a major ordeal. She would possibly have to have her implant removed, have her scalp skin grafted and then be re-implanted at a later date. This is very obviously not good at all. She will most likely be seeing her doctor tomorrow to get a better picture of what is going on, and we will keep you informed. Thank you for caring about our girl, and for praying for her and the rest of our family!!