August 31, 2013
I know quite some time has passed since I last updated everyone on Gigi’s progress, but I guess I took a little summer vacation myself! Lucky for you all, I remember everything in detail and according to Dan I can take 40 minutes to summarize a twenty-minute show. “Well, I like to add in the descriptive details,” I say.
School was out at the end of May and I was happy to have all four kids in one place at the same time. Jessie is not a fan of school so she was happy to be here and Beck was more than happy to have her here! Even in her dislike, she tends to make As and we never have disciplinary issues. I am glad to see that even though she doesn’t want to be there, she completes her work, is respectful and follows the rules. She even got several awards at the end of the year and was voted by her classmates to receive the last Principal’s Award of the year. Dan and I laughed when Gigi was better behaved than Beck and Sloan during the awards ceremony…that never happens! We were not sure how much adjustment time it would take for Gigi’s routine change, but it really did not seem to make a big difference…maybe because she is not a “five days a week, all day” attendee it makes the change less drastic. Plus she had missed long spans of time throughout the year for both surgeries and then her magnet injury.
By June, her head had completely healed, we had seen the audiologist for adjustments and she was back to hearing on both sides all the time. What a relief when that was over! Her therapy schedule continued as normal for the summer: Speech and Occupational Therapies on Wednesday mornings and Physical Therapy at “The Barn” on Friday mornings.
In June, Gigi started signing “potty” and she has the meaning behind the gesture figured out. If she signed it, that’s where we were going. For Gigi, nothing can be explained, only demonstrated. Then, as she would sit and happen to go, we made the sign again and smiled and clapped. When it happened that “number two” took place she got a balloon for a five-minute celebration (balloons are the strongest motivator to date that we have found for her). She doesn’t have a lot of control in this area of bodily function, but I am happy to report that I have only changed one “dirty” diaper on Gigi in months. I’ve got her number, as far as her number twos go, and we are making it every time. She has to sit for quite a while some times, up to thirty minutes even, but in orphanages, children aren’t so much potty trained as “sit here ’til it happens trained” and she doesn’t make a bit of a fuss about waiting for it. At first I was afraid that she would equate us to the caregivers that she had grown up with if we made her sit too long, but it really doesn’t upset her in the least and that eased my mind about her possibly having any ill feelings about the process. Because of her Cerebral Palsy and sensory sensitivities, muscle control doesn’t come easy and the sensations of the potty process are not her favorite things. She holds it as long as possible to keep from “dealing with the issue,” which as you can imagine creates more of an issue at times. Luckily she actually likes prune juice…straight up and at room temperature! Ack!
Gigi signing “potty” from the potty. She may hate me for this one day.
Also in June, Gigi started attempting with success about half of the time to put her own magnets back on if one falls off. She will attempt, but is not having the easiest time, placing the bigger part of the device around her ear if it completely comes off, but if only the circular magnet has flipped off…she’s got it covered. This is huge for Gigi! Her threshold before complete frustration and agitation at the fact that she can’t get something to work started of around .0001 second a year ago. These days, most of the time, she can work on something for a few seconds, maybe three to five, before getting mad and giving up and expecting you to do it for her. However, with her magnets and a few other things she will try for a full half-minute or so at times.
The last two weeks of June were very hard. Gigi regressed in several areas and started rehashing old behaviors that we thought were long gone. This isn’t the first time, but it definitely lasted longer than any of her other times of setback. She stopped signing some things that she was pretty good at before, she had times of not chewing her food, she flinched at me, she bit me a few times, she pinched, she hit her face with shoes, she picked at her thumbs until they bled, she rocked and rocked and rocked, and she even went back to slapping her hands down her face when she didn’t get her way and sucking her tongue while holding a ball to her face (this occupied most of her time when she first came home). Some new things came about, she started chewing on her hair for one. She stopped sleeping well and had several nights with just a few hours. In all honesty, it was miserable. And in the midst of it all, Jessie had a gymnastics performance, we attended a special Father’s Day event at a different church (Duck Dynasty’s Willie Robertson was speaking – as you can imagine, it was packed! Packed is not Gigi’s cup o’ tea, even on a good day.), she had her annual appointment with the pediatrician where she was due for some catch up vaccinations, and we had to say good-bye to the physical therapist that Gigi has seen for a year. Gigi of course couldn’t be told that T. and Dorian (the dog) would not be seeing her any more and so it was an uneventful goodbye on Gigi’s part. The fact that I can’t tell Gigi that some people may leave her life, but we will not, is perhaps harder on me than her. To me it is a harsh reminder of the life my girl has lived and I am left to wonder how many people have left her life one day and never returned without any explanation and if she expects that we will eventually do the same.
At the end of June, Dan had a three-week vacation! To start, we took a family trip “home” to West Virginia for ten days. All the kids rode pretty well on the eight-hour journey. Gigi did surprisingly well, even when we stopped at a roadside park that we are super excited to see has popped up along the way. It has a shelter and picnic tables and a grassy area the kids could run around on. We tied the dog off to a picnic table and had lunch from the cooler. The kids, and the dog, had a chance to run for a few minutes while we prepared the food and again while we cleaned up – it was perfect! We arrived at my sister’s house and Jessie and Beck, who remembered quite well even though it had been more than a year since our last visit, were out of the car and off to find their cousins. Gigi went with the flow and shocked us by not “going bananas” as we say. Nana (my mom) came over with pizza for dinner and Gigi even ate good sitting in a “big kid chair.” She was excited to see Nana and climbed up on her lap (which is permissible for grandparents and aunts and uncles these days) to explore her. We have pictures of Nana at home and she has seen her, my sister, brother-in-law, and her cousins several times so none of them are new to her. The whole trip went well. Gigi was surprisingly calm, which we did not expect to happen for one second at all, throughout the trip. She stayed calm (or at least “Gigi calm”) even when we would go over to Nana’s house for dinners and visits. We met my cousin and her two boys one day at a park with my sister and her kids, nine kids total, and I was surprised to actually get to sit and visit. Gigi was fairly calm there too and even explored the playground a little. Much to our surprise, she didn’t try too hard to climb her cousin M. or the boys…who were at this point fresh meat in Gigi’s eyes. It was a little bit rainy so we did have to spend some time under the shelter with Gigi and her ears to keep dry, but overall it went great! Throughout the week, Gigi spent a lot of time on Aunt C.’s from porch, where she was safe behind railing and a gate with nothing but a view of the woods and some rocking chairs. Gigi seemed to really benefit from the quiet, peaceful spot. We need one of those around here! It is on the list for new house.
On July fourth, we went into my hometown for the parade. Gigi immediately lost her marbles. She took off her ears, rocked, moaned and bruised both our sternum by rocking and slamming into us by the end of the festivities. Our guess is that the crowd and all the movement overwhelmed her. We just held her and when the parade came, she was throwing the candy back, she wanted nothing to do with being there. The other kids had a blast. We headed off to lunch after that and after we saw a forecast of rain for the night, we decided to attend a neighbor’s fireworks show instead of venturing back out for the town’s fireworks show. It was just a quick trip over with the kids in the back of a truck and was not too much of a to do. We took off Gigi’s ears, not knowing what to expect. She loved the fireworks. Feeling the boom made her smile and she actually watched the sky waiting for more. Nana had brought her a glow wand with a star on the end and she would hold it up to the sky with each set of fireworks. I am not sure what she was doing, but she was enjoying it. Jessie went through the night with her fingers in her ears (she has always been very sensitive to loud or unexpected sounds), Beck was being big with the other boys, eating his popcorn and drinking kool-aid, and Sloan had her own personal ear plugs, daddy’s hands, while she munched her popcorn and waved her glow wand from Nana.
On Saturday, July 6th, we loaded up and headed for my Grandma’s house where there was an annual family get together. The winding mountain road made Gigi sick, so we arrived and headed to the bathroom for a change of clothes – which I had brought for Sloan, so its a good thing they aren’t too far from the same size! I got to see my cousin’s new baby – not just any new baby, but maybe the cutest one ever, anywhere. Gigi also met her Great Grandma, two great aunts and a great uncle in the house while we waited to walk over to the festivities . Over the course of the visit several people met Gigi for the first time and she was WIRED. This was a Gigi playground…I can imgaine her thoughts- “so many people to climb and grab and they even smile at me!!” We completely expected this and tried to be prepared. We took a stroller, just in case, and we used it quite a bit. We had a little reminder of when Gigi first arrived and our skin hurt from the grabbing and pinching and pulling and climbing that comes in the package deal that is Gigi. The big kids – Jessie and Beck- ran around and played with the other kids and Sloan was back and forth and here and there and sweet and sassy and on Nana’s heals quite a bit. The kids went swimming in their Great Grandma’s pool and when we took Gigi to join them, it got really bonkers! She was too excited to be safe and when I took her out to calm down she was pinching and biting and just too much. I could have been more mindful about her state, but I will admit, the opportunity to have adult conversation sometimes completely overtakes me and my battles are not best fought. At the same time, it is also probably wise to not let her take my attention from everything else in life by misbehaving, or it just might become a habit – I am getting to know this daughter of mine well. The night ended with fireworks, which Gigi kept her ears on for almost the whole time, Jessie wished she could take her ears off for, Beck laughed through with nervous excitement and Sloan had her daddy’s hands cupped to her ears as she watched with delight. We spent one more day in the state that is not called “almost Heaven” for nothing and headed home on Monday. We decided to take the scenic route home so it took us about 10 hours to make it back, but it was nice and relaxed for the most part.
Gigi and Sloan looking at the New River Gorge Bridge.
Walking up the steps at the visitor’s center.
Dan still had over a week of vacation time, and because we were trying to get our house ready to list for sale, we decided to have Family Fun-cation. We went to a movie (Gigi lasted about half way through before the pinching and grabbing, rubbing her face on me, and finally the biting began. I took her out and had a quick scolding in sign that translates to “you sit” I demonstrated her inappropriate actions and told her “no” about each, told her we were “finished” with those and it was “time to sit.” We went back in and she did ok for a short time. Luckily the movie was almost over. On another day, we went to the Childrens’ Museum, which the kids always enjoy and we went to the neighborhood pool almost daily and did lots of playing on our deck. In between the fun, we were touching up paint, packing away our unnecessary stuff and hauling it to a storage unit, cleaning carpets and all the general labor associated with selling one’s house.
Here is Jessie getting geared up and climbing the rock wall at the Indianapolis Childrens’ Museum.
Beck and Gigi drawing with sidewalk chalk on the deck. Gigi initiated this (WOOHOO!) and Beck drew her a strawberry.
This girl loves the water!
When we got home, Gigi got to start her first sessions of aquatics therapy. This started off as a wild time, as most new things in Gigi’s life. It took her some time to get the hang of why were there. She loves the water. She is able to go under, breath out of her nose and for the most part not get choked up. She had this therapy for six weeks, and both the physical and occupational therapists that she worked with agreed that they thought it took half of the time for her to really calm down and get anything out of it, so they would like for her to do it again later in the fall when they have another session.
Gigi saw Dr. Escobar on July 17th. He was quite disappointed, as were we, to discover that she has gained no weight (not even an ounce) since April. He informed us that we would have to stop the medication for ADHD that she is currently on if she did not gain any in three months. ADHD medications act as an appetite suppressant, which for Gigi is not good. He is glad to see the progress she has made in a lot of areas, but not so glad in a few others. Sort of to our surprise, he added autism to her growing list of diagnoses. The diagnosis didn’t necessarily bring any new territory along with it, the symptoms are the same ones we have been dealing with all along. We will still continue with her treatment in the same manner in some areas, but we will begin one very large additional undertaking. Gigi will not be attending the public school this year, but will instead be attending the Behavior Analysis Center for Autism (BACA) that is located just a few minutes from our house (and we will not be moving far from here when we do move). This is not a school, but a treatment center where Gigi will have one on one therapy for six hours a day and two hours of supervised and directed social time. Her day will be 8:30 to 4:30 and I am more than a little nervous. The good news is that the center has a completely open door policy (for parents) and we can go in whenever we would like…within reason of course I’m sure. They don’t know what kind of offer they are extending to this particular mom. I have a little bit of a hard time handing over that much of my child’s day to someone else. This is an ABA therapy facility, which is Applied Behavior Analysis. This is in short behavior modification therapy. Now, occupational therapy is sensory based (kids do this because they have a sensory need and we need to find an appropriate way for them to satisfy their brains’ requests for information) and ABA therapy is behavior based (everything is a choice and sensory is not an overwhelming driver). This is a MAJOR gear switcher for me. I do feel that some of Gigi’s behaviors are a choice, but I think some are a sensory need. More so, I think that many of her behaviors are habits, Gigi is very habitual, that started as a sensory need. I will be operating at a high level of anxiety while I try to find the balance between these two things since a combination of the two theories does not exist (at least that I have found). I have requested to meet with her therapist before starting treatment. I do want the to understand that Gigi is coming from a very sensory deprived passed and that I personally believe that sensory does play a roll. I hope they will be sensitive to this and that they are open to hear about her past…at least what I know of it. I am also concerned that Gigi will form an attachment to her therapist that is stronger than the one she has to us. She will after all be with them for more of her day than she will be with us and like everything in life, we cannot explain to her why.
The whopper development for the summer is that Gigi is pointing!!! Not only is she just pointing, she is pointing to tell us what she wants!!! We can hold up two snack, and she will point to the one she wants and sometimes point into the bowl – “I want that, in here.” This is HUGE! Not only is it communication, but it takes some concentration and she is making a choice! She is very proud of herself for her new skill and I can ask her “where’s the shoe?” when it is laid out with other things she knows signs for and she can point to give her answer.
Gigi has also learned the sign for brushing teeth and will model it after I sign it and we are heading to the sink and she is also signing baby. She will hold and rock a baby doll for a short time as well as give it a bottle and feed it with a spoon. Baby dolls are one of her favorite objects to hit on her face, so this activity is usually short lived.
Gigi is not responding much to speech, but we can get her attention by clapping. This is a start and I still have high hopes for her hearing in the future. We have great news in this area, as far as adaptive tools goes, but it deserves a post of its own and is soon to come!
While at my sister’s house, we attempted to get a group picture of the Stevens kids…it didn’t quite work out, but here are some attempts:
May 9, 2013
Gigi’s scalp is healing, slowly but surely. Her wound is about half the size of what it was when it was new. She has still not worn her right “ear” full-time for two weeks, and I am sure she is wondering what in the world is going on. Or maybe she is thinking “Oh good, back to normal.” Either way it is hurting this Momma’s heart that she is not getting what she needs at the moment as far as hearing goes. It has been eye-opening. We now see how much she was actually responding to sound once she lost it. Yesterday, I turned her right ear on for her speech therapy appointment. She was not so happy at first, and she cried a pitiful cry. I took the opportunity to snuggle her and tell her it was ok. I don’t get to do this very often, since Gigi is pretty “go with the flow” kind of gal – in appearance anyway. She is more of a “wait for permission before I make any kind of move” kind of gal. A little bit of time passed before she warmed up to the idea, probably fifteen or twenty minutes, but she did get back to an almost normal “right-eared” self. I left her on the softest volume setting that she has right now for the full hour that she wore her “ear.” She responded really well to her name for the most part and she did great at speech. In case you are curious, speech therapy for Gigi is more of a language therapy – we mostly work on signing and since activation we are working on some sound recognition and noise making. Hopefully by her next audiology appointment on the 15th she’ll be close to recovered, at least enough to wear her ear for more than an hour or so of the day. Today I sent her right “ear” in to school for her time with Mrs. N, the educator for the deaf. She let me know that Gigi was a bit “flinchy” at first, but that she has warmed up to it and did well. She even cried and wanted it back when it was time to take it off. This is both heartbreaking and joyous news. I am sad that she can’t have it, yet I am overjoyed that she wants it! I am going to try to have her wear at times when she will be getting the most productive sounds and ease her back in to the world of sound.
April 27, 2013
Today came and went, and was nothing like we would have planned. Its kind of funny, I have commented several times this week that she was behaving like she did the week we brought her home…what a fitting time for it! It has truly given me an appreciation for how far we’ve come in one year!
Giulten Metodieva Stevens you are ours! We love you, and we’d go to Bulgaria and back a million times and do it all over again!!
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!!
April 12, 2013
Other than a seamless recovery from surgery, I feel like I have nothing to say. Nothing is new. Nothing is wonderful. Nothing is terrible. What could I have to say that people would want to read about? Then it occurs to me…maybe things are normal! As we approach the one year mark of Gigi’s Gotcha Day, maybe things are starting to feel normal again!
When you have a baby, the first few weeks fly by…you are tired and delirious more than half the time. Sleep deprived, your eyes are open but they aren’t seeing and that’s ok, because you’ve quickly learned to change a diaper in the pitch black darkness of the night and the baby has learned to forage for that breast or bottle with great intensity and purpose and he or she does all the work for you, and slowly you can finally start to rest. While you are napping, time flies by, because when things aren’t normal, time moves rather quickly! You feel like you get the swing of things and then BAM! – New development, changing sleep schedules, and changing eating habits. You delight in the smallest developments and the smallest setbacks seem huge. You encourage the baby to roll over, then sit up, then push up, then crawl. Everything happens in necessary steps and slowly the milestones are reached and the next goal is set. Suddenly, the baby gets close to one year old and you think, “hmm…I haven’t had to adjust those car seat straps for a while…” and you’ve stopped reading your “what your baby is supposed to be doing this week” book. Things aren’t such a guessing game any more…things are just normal. You know the baby and the baby knows you. You know what your baby needs, and he or she can let you know what is needed. This is your life now, and what people often call your “new normal.”
Bringing Gigi home has been like having a newborn in a lot of ways. Those first few weeks flew by, we were jet lagged, our kids at home hadn’t seen us for ten days, and we had a new child – a virtual stranger- in our house, we were in and out of doctors’ offices, we were trying to get her set up for school in the fall before the summer break, we were dropping off blood work, we were sending in MORE paperwork, we were trying to figure her out and we were being bombarded with questions from ourselves. It wasn’t normal to watch out for a child crawling behind you to smell your feet throughout the day, it wasn’t normal to stop a child from scratching her shins until they bled, it wasn’t normal to peel your child off of every new person that entered the room, it wasn’t normal to constantly take shoes from her because she is beating herself in the face with them, it wasn’t normal to watch her like a hawk because as soon as you weren’t looking she would tap her front teeth with the closest hard object to the point of loosening them, it was NOT NORMAL! It took some time, but I stopped tearing up at the sight of the unending rocking that she did constantly, to the point of “knocking the breath out of herself.” We finally learned to keep our eyes shut while she flipped and flopped and squealed and laughed like a maniac in the middle of the night and then eventually it occurred to us, “hey, she doesn’t really do that so much any more.” We didn’t notice the fade of these behavior and countless others, but we did find rest and relief when they were gone. Time flew by, because our picture of a routine had been torn apart and we were left with a pile of pieces and we couldn’t even find the box to put them back in while we waited for the time to put the thing back together. Gigi eventually gave up on smelling our feet, she stopped scratching herself to the point of bleeding, she still needs to be peeled off the occasional person but it is improving, she still likes shoes but if she sees you and she is holding one, she takes it quickly back to the basket and puts it away and the tooth tapping is a battle for another time – it has slowed down, but is still a go-to method of exploration for her. She is meeting goals and we are setting new ones. Even seeing these changes, we were starting to think “normal” was a thing of the past. We know everyone has their own normal…and I don’t want people to think that our desire is for Gigi to “be normal.” She is normal…she is her normal Gigi self. We had to take time to learn who she was and yes, our life has changed a little to accommodate her “not normalness” in more than one way, but now, it is starting to feel normal. Not normal has become our normal. And we are fine with that. We just needed to know what our normal was, but you never know until you get there. We have finally gotten some of the pieces pulled together and slowly the picture is taking form. Some of the pieces might take longer to find…and I am sure we have a lot of changes still to come, not only with Gigi, but with the other kids and life in general as well. Maybe we’ll never look normal, but who is!? I was never one to throw out forty-nine pieces of a fifty piece jigsaw puzzle just because one was missing, you can still see the picture after all and you never know…you might just come across it one day.
March 20, 2013
One thing is for sure, the 9:00 am surgery time slot sure beats the 1:00 pm. When we got to the hospital entrance for surgery, Dan dropped Gigi and me off at the door and when we walked around the car and she saw the building, her bottom lip went to work pouting. She didn’t cry, but she whimpered and held on tight. She was obviously nervous while we waited, but she cooperated like a champ. The anesthesiologist wanted to give her a sedative before taking her back so the mask and sights of the OR wouldn’t scare her. I am guessing this would have been true since she clearly knew what was going on. They brought in an oral sedative in a syringe and allowed us to give it to her. We took off her “ear,” which is what her processor has been named by the kids, and she got woozy pretty quickly. This picture is actually of Dan singing to her (remember, her “ear” is already “off”) as her eyes rolled and her head bobbed while the medication was taking effect.
By the time they came in to take her back she was still awake, but floppy and pretty unaware. We decided to run down to the cafeteria (or chow hall as Dan referred to it and got a strange look from the nurse) for some breakfast and by the time we ate and got back up to the room and made a few phone calls we were getting heads popping in the door letting us know that things were going well. One of the audiologists from the office where Gigi goes for all of her cochlear implant adjustments tested the device before she was sewed up and she came in to tell us that things went great and everything was working. By about 12:30, she was back in the room with us and trying to wake up. She was not happy about waking up and was less happy when the arm restraints came into view. She was too tired to fight and really she stayed quite sleepy the whole time we were there. We got the same care instructions we got last time, and were on our way home by 2:30.
Gigi got home, ate one bite of bread, headed for Grandma’s lap and went right back to sleep. She stayed asleep while I joined the other three kids, Grandma and Aunt Pam (or Geemah and Pan Pamp if you ask Sloan) for a fun dinner at McDonalds while Dan joined Gigi for some shut-eye. When we got back, we saw Geemah and Pan Pamp off, jammied everyone up and started an early bedtime routine! Gigi woke up, ate some more bread and drank some water and of course squirmed around until her bandage was half off. We sat her down and took it off so we could get her hair under control with a few pony tails. It was great to see that they shaved much less of her head this time! She was not feeling good at all, so we gave her some pain medicine. Beck came down the stairs while we were readjusting her pressure bandage, which caused her to cry more than a little, and wanted to see her ear. He looked at the back of it, which is stitched back on from top to bottom and said “look,” as he folded down his own ear, “I came with ears that are already hooked on!” Then he sat with her for a minute and rubbed her knee while she cried.
We got her some fresh clothes on and she was ready to lay back down. We are having her sleep in the pack and play in the living room again and staying on the couch beside her since it worked so well last time. We’ll hope her recovery goes as well as it did last time! Thanks to everyone for their thoughts and prayers as always!
March 2, 2013
We have made it! Gigi weighs 30.8 lbs. according to the scales at Dr. E’s office on February 18th. These are the same scales where she measured a whopping 25 lbs. and 2 oz. about nine months ago. Dr. E was quite pleased with the weight gain! He was also quite pleased with her overall developmental gains. He said that she has already far exceeded some of his expectations for her since their first meeting and admitted that at that point he wasn’t sure how much rehabilitation we would see. He told her “now, let’s get you talkking! I want to hear you speak!” Have I mentioned how much I like Dr. E?
Hearing is going well. She is leaving her processor on just about all of the time. The car is our only battle at this point and her teacher, Mrs. N, just might have fixed her wagon on that! She made Gigi a homemade clip so that if she does take it off it is at least attached to her clothes. Gigi brings it to us if it falls off and turns her head so that it can be put back on. She also comes to us at least half of the time that only the coil (the magnetic part) is disconnected (which means she is not hearing, though the processor is still on her ear) and taps her ear to let us know that she needs fixing. She will take it off and give it to me when I sign for her to, along with saying it of course. We are still working on getting her to signal to us that she heard something, which is highly useful in making sure she has the optimal programming. She is turned up to normal hearing levels these days, so there is a lot of stuff pouring into those little ears….or those little microphone holes to be exact. She has started being irritated and “rattle snaking” with her tongue when her “ear is off.” She is also attempting to reattach her coil if it falls off, but she has a hard time getting it to the right spot. She will only attempt things for a VERY short time before getting mad and giving up, so I don’t expect to see her getting it on any time soon. She is not having any adverse reactions to sound…for the most part she does not react at all. Some days are definitely and noticeably better than others. We are trying to get her to vocalize more…she is vocal, but when you want her to do it on command, she’s a bit stubborn. Hmm, we should have known to expect that! I have some really cute videos that I need to get posted somehow.
She saw an orthopaedic doctor on the 25th, the same one she saw when we got home, who said everything was looking good. He was glad to see the forward progress in her walking and had xrays taken of her hips just to be sure. They looked good, only a minor issue, which according to him is not an issue at all. The neck of her femur should turn inward to her hips at a 35 degree angle, and it is instead a 20ish degree angle. He is not worried in the least and said that as her bones grow, it can correct on its own…and if not, it still isn’t a big deal.
I know this is a short and technical update. We have been making the rounds at our house with a pretty nasty head cold. Gigi has had it for over two weeks at this point, and it is just hanging on tight. In just over two weeks we will be taking Gigi in for her second surgery! Time to get well and stay that way!
February 3, 2013
Gigi started out after activation at a level of hearing that would still be considered profoundly deaf (and would still qualify her for cochlear implants). We turned her up three “levels,” for lack of a better word, over the course of the week and she did great. We went in Monday for another “mapping.” We were given three new, higher levels of hearing to progress through the week with. Her new lowest volume gives her the hearing of a person with a 40 decibel hearing loss, which would be considered mild hearing loss. Needless to say, she was aware of more sounds now than during week one. They told us that the third program would be quite a jump and she may not tolerate it. We got there Thursday night, and she has done great! She is definitely “hearing,” but this task of teaching her to look for what made the sound because it means something is a little difficult, but we’re getting better at it every day. We are making sure we tell her “you heard it” while pointing to our ear and whatever made the sound. I love that Sloan tells says “Gigi, I hear you!” while pointing to her own ear and to Gigi. My little assistant. We have also started talking with Gigi’s hand on our throats and then placing her hand on her own and somewhat surprisingly, she makes a sound. It is more of a growl than vocalization, but she has the concept, and she is showing us, I can move mine too! Jessie and Beck have learned how to put her processor back on if it falls off and she lets them most of the time. Saturday, I sat in the chair and watched as Jessie was bringing her laundry down (throwing it on the stairs and then sliding down like a slide on the clothes until they all end up at the bottom – “I don’t care how it gets here, as long as it ends up in front of the washer” is the rule) and Gigi grabbed some jeans. “Tell her where you are going Sis, maybe she will help you.” Jessie doesn’t engage with Gigi a lot – she doesn’t exclude her, she just doesn’t always think to include her – so I am always trying to foster that idea. Jessie dropped her arm load of clothes and signed and said “grab it” while pointing to the clothes. Gigi grabbed the jeans, that she had since dropped, and followed Jessie who had signed “come on.” They did this until all the clothes were in front of the washer. It was by far the longest purposeful engagement for them yet. Then, Jessie got out the sheet that was in the laundry, signed for Gigi to sit on it and proceeded to give her a “blanket ride” around the house. Gigi loved it! Sloan joined them, then Beck joined them and for quite some time they played. Gigi played…and she had fun! When they stopped riding on the sheet, Jessie picked her up from behind and spun around with her. She wasn’t sure about that idea, but Sloan only needed a glimpse to know she wanted a turn! After Jessie finished spinning with Sloan, Gigi turned around and walked backwards into her to make sure she got a turn next. It was so wonderful to watch her want to be with them.
As for what Gigi thinks about hearing, realize that none of these new sounds mean much of anything to Gigi at this point. The primary thing that is happening is that her auditory nerve (in the brain, since that is what “hears” – your ears just get the information there) is being stimulated, maybe for the first time in almost seven years. This is vital, and the only reason any of us can hear. This nerve delivers sound information to the appropriate area of the brain where it is processed. The brain has to “learn” to do this. Her brain will start with the basic skill of detecting the sound, later it will learn distinguish patterns in a series of sounds, it will then start to decide if two sounds are the same or different, it can then start to differentiate and identify that things have names, finally the brain will be able to understand all these sounds that are pouring in as language.
We can see that she is detecting sound in some cases. Its kind of a tough guess sometimes because of course she doesn’t know to respond to it and unlike a lot of other older children who are implanted, she has hardly any language skills. We can’t explain to her with sign language that this is happening, what she should expect and that we need her to show us when she hears things so the audiologists will know to properly adjust her implant programs. So, the first goal is to get her to realize that it means something and that she should respond to it. We are doing this by teaching her to touch her ear when she hears something (like her teacher banging a drum behind her). This could take a while of course, but we are finding lots of ways to practice. She is working on it at school, therapy and at home so hopefully we will have success before too long.
The question everyone is asking these days is “will Gigi ever speak?” The reality is, we have no idea, but we certainly have hopes it will happen. We know that audiologists have told us not to expect it, that she may only gain enough receptive language to recognize her name or a few common words and phrases. They say she might say her name one day or “Mom” and “Dad.” Their primary goal for her would be sound awareness. They don’t say these things without reason and scientific research is more than somewhat on their side. The best window for the brain to learn to process auditory input is from birth to age seven. Gigi is six and a half and so we are reaching the sunset on that stage. Even more challenging is that she doesn’t have a first language, like sign, to bridge to spoken language. As for when speech could happen for Gigi, realize that babies start processing sound before they are born – at about 20 weeks gestation- so we are actually starting off at a developmental level of hearing that exists before birth. I came home from the appointment where I was given that statement of expectation feeling deflated and a little sad – do they know what we just went through to get to this point!? I am sure they do. I wanted to respond with “Oh, but you don’t know the Gigi we know and maybe you haven’t met her mom and dad. We’re not really here to meet your expectations, we have our own, they are not for Gigi but for us as her parents and they go pretty high. What if we stopped at the point when your expectation is reached? We’ll never know her limits until we get there – and even then, we might wonder if we’re there yet.” But, I don’t have to say it…they’ll see. No matter where her communication skills end up, they’ll be far greater than where she started, we will NEVER be disappointed in her…and why not give her every opportunity and every prayer for complete rehabilitation?? If we didn’t believe that God can help us walk into something that seem hard, Gigi wouldn’t be here with us to start with! We’ll be striving for speech.
If Gigi had the dexterity in her hands of a person who does not have complications from cerebral palsy, signing would be effective and we wouldn’t place so much interest on speaking. Perhaps this will improve as she overcomes some sensory sensitivity on her palms and starts using her web space (between the thumb and forefinger) more. These are both things we are working on. When we think about what she has been able to overcome and adapt to in just the last nine months, she astounds us. As Dan said, she has got to be a stress case. She has a new house, new family, new foods, new routine, schools, cars, therapists, doctors, medication to help her focus, a compression suit, CAT scan, MRI, surgery, she is learning to do things for herself, she is learning that we expect her to do things for herself, she can eat when she wants, she can explore, she can just be free. On top of that, she is learning sign language, and now learning that there is even more to this new world of hers with the introduction of sound! How many of us would not be a complete mess!? I think she is handling it all quite well considering the enormity of change she has experienced this last nine months. We have also come to learn that Gigi knows FAR more than she lets on. We also know that Gigi really only ever acts like herself when no one else is here…and so most people don’t get to meet the real Gigi. I am positive that all the facts that are given to us are to help keep us grounded and living in reality. They are given in a caring way and we absolutely believe them that research is on their side and we absolutely believe that they want the best for her. I am glad it was said to me. Even though it hurt for the first few hours. Sometimes that one little spark is all I need to ignite the “oh yeah, watch me” attitude that just might prove to be a necessary characteristic when it comes to parenting Gigi. For all the non-encouraging comments we will receive, we will get more that weigh in on the positive side I am sure. Gigi’s teachers have higher expectations and her therapists have higher expectations because they see her frequently.
January 22, 2013
Today went well! This morning I got her out of the bed and followed our normal morning routine: come down the stairs, get a diaper change, put on her Spio suit, get a drink of water, grab a slice of bread out of the cabinet, take her medication and head to the table. At the table I showed her the device, signed “you ready to hear?” I turned it on and placed it on her ear, signed “ready?” and click. She startled, but settled in quickly to hearing. The house wasn’t overly busy at that point and she really had no problems dealing with it. Today was a two hour delay in our school system, which for Gigi’s half-day schedule means a whole day off. For the most part she again left it alone and didn’t try to take it off unless it was falling. She went through a spell of wearing a hat and knocked it off several times. She never resisted being reassembled, though she did jump a few times when she got reconnected. We decided that it might be best to turn her up while Sloan and Beck took a nap. We made it up to program three, which is currently Gigi’s loudest program. She almost surprised us with not having much of a reaction to it. She is reacting more to banging sounds and clapping than voices. She almost took an interest in the tv but it was short-lived. As she is exposed to more sound, both the variety and the amount of it, her brain will start sorting through it all. We have big changes ahead I am sure.
We are partially glad for this calm reaction, it is most certainly better than a meltdown or an obvious dislike for sound! But, in all honesty, in some ways it would be really exciting to get one of those youtube reactions! We are proud of her none the less! As I thought about that this morning, it occurred to me, if she was reacting in a way that caused a lot of excitement it could appear to her that by simply hearing, it gets her more attention, more love, or makes her better. We would never want her to feel that way – she is loved beyond measure, hearing or not! With that in mind, we tried and I think we succeeded in having a regular day – it just had this something new added in to the mix!