First, allow me to clarify what I meant about how thinking about AJ's future is painful. It is not ALL painful. But the detour is initially painful. You know, your drivin' along and suddenly are faced with a detour? Some frustration sets in and perhaps a slight bit of panic as to where is blue blazes this detour is going to take you, as well as whether or not you'll arrive at your destination on time because of this blasted detour. Does this sound familiar?
I think what was the most painful was changing the mindset. Our journey has not been classic. I prefer to think of it as unique. But there have been serious moments of pain when you realize your child will not be sitting on that bar stool at a college bar with his friends, or any other of the myriad of classic moments in a child's life. The process of changing your mindset is painful. But here's the thing: I don't care about that anymore. AJ will be AJ and his life will be full and enjoyable. We'll do whatever it is he needs/wants. I worry more about the logistics of this new road of a life-time of care for him. I know his life will be outstanding. No doubt.
So, moving on to the ups...
AJ saw his GI doctor in August. It was so hard for me to believe that he hadn't been there in a year. First stop, weight. 31.5 lbs. Woot Woot! Second stop, the room with a view. I secretly hope each time we visit the GI clinic that we get this one specific room that has a whole wall that is a window. And then, AJ was discharged. Say what? I was in complete shock. AJ? He was busy playing with the otoscope which, why do they have an otoscope at the GI? Anyway, they feel he is doing so well there is nothing else they can do for him, other than what we keep doing. Last year they were a bit concerned about his calcium intake, but since he's now drinking white milk, and loves all sorts of dairy products, they aren't concerned. On the days where milk isn't his choice, we give him a Tums. Yeah, and he eats it. He's growing like a weed, so I wouldn't be surprised if he's now around the 33lb mark. Way to go buddy!
During the first week of school we had AJ's private feeding therapist come in and do a consult with AJ's school staff. I was there too. The week prior, I had witnessed him eating in the cafeteria. Woah. Sensory overload and HOLY LOUD. Yep, I'm that mom that walks around her kids school with her cell phone out. Really, I have a purpose. I'm checking to see how loud things are. After watching him, I immediately stated to his staff that he cannot eat in here. He's now eating upstairs in a classroom with friends. His whole entire demeanor has changed, his behaviors are slim to none, and he's not on sensory overload, so he actually eats his food. The staff is very comfortable with AJ's eating style. This brings me a HUGE amount of relief. He has a current Feeding Plan on file. I am one happy momma.
A few weeks ago I had AJ's CI processors tweaked. It's been awesome. Now that we are aware of how loud certain environments are for him, things make so much more sense. He's no longer hating his CIs. That's truly the best way I can describe it. His audiologist tweaked his sensitivity, which has been sooooo awesome. He's been doing well at school, but still prefers only one ear on the majority of the time. We saw AJ's audiologist last week-she wanted to know who this kid was in front of her. When she came out to get us, he was in the middle of putting his coil back ON himself because he know he was missing out on sound. Holy awesomeness. He was much calmer during the appointment and when he wandered into the soundbooth, we followed. He sat on my lap, with one of the audi's in front of us, while the other was behind the window running the testing. I haven't been in the booth with him for a very, very long time. He's never just sat in my lap. His audi didn't even need toys to distract him. After I had said that anything over 70dB causes him to take a coil off, we started there, testing several frequencies. He responded to the VRA-WHOA. He lasted about 10 minutes, which was amazing for him. They also tested higher dB's and at mid-frequency, he responded at 30dB bilaterally. Woot woot!!!! We called that a success and got out of there before things got ugly! His audi ended up tweaking the sensitivity just a little bit more. Like, a smidge. We're giving him 2-3 weeks to adjust and then we'll go from there. I'm determined to keep on top of this. It is SO COOL to see him put his own CIs on because he wants to hear. That is a cochlear implant parents DREAM come true.
I've had to raise the swings on our swingset twice. I've had to raise the rings on our swingset twice, because someone keeps on growing, and growing, and growing. Which is good, and sorta bad. It's shocking to us because we've gone years with praying he'd grow with very slow progress. So its weird to us. He's way to heavy to pick up and carry now-which you'd think at 30 some pounds that wouldn't be too bad. AJ is dead-weight when you pick him up-the majority of the time. Ufta. He's too big for the infant straps in his car seats. This all so exciting, and nerve-racking at the same time. When he grows, he hurts. For those of you that are newly reading my humble little blog-his cerebral palsy prevents the message from his brain to his muscles to happen normally. So, he grows, his bones grow, but his muscles stay. Tight. Ouch. Hurt. So, growing can be painful for him and increase his tone. When he grows, its like he's walking in 4 inch heels all the time. It totally screws up his body awareness. We bulk up his time of his gigundo yoga ball, swing him (helps him loosen up) a lot, do lots of deep tissue massage, and long baths. Our whirlpool tub is the absolute best thing about this house, because AJ has benefited so much from it.
Lots of tune-ups, change-ups, and growing up going on!
Showing posts with label feeding therapy. Show all posts
Showing posts with label feeding therapy. Show all posts
Monday, October 1, 2012
Thursday, August 16, 2012
The Motherload of Updates
To My Faithful Readers,
Oh what a summer it has been. Correction-oh what a spring and summer it has been. I've had an outline of things to blog about on the inside of my calendar for months-does that count? Good intentions, always. Here goes...
April
-During a regular PT session, AJ's physical therapist made the decision to discharge him. Yes, he's doing that WELL. We were able to use physical therapy to reverse his functional scoliosis. "Heidi, you did this on your own. You don't need me anymore!" Looking back I am a bit relieved decided this during that session. I think stating something to the idea of "Ok, four more sessions and then I'll be discharging him" would have ripped my heart out. I've blogged about his PT's awesomeness many times before. The idea of her not being AJ's PT was completely foreign to me. I spent the last 10 minutes of his session in complete shock. That shock continued as we walked to the car. I closed my door-and bawled. I just could not believe we were done. I never saw a tangible end to his physical therapy. It because part of our life-his PT became part of our family. It just never occurred me to me, yet here we were. Almost five years of therapy and he's just suddenly done. Never fear, his therapist did not get off easy. I still sent her regular emails and questions as needed. {Secretly she loves it!}
-AJ had a follow-up at the dental clinic. He was diagnosed with enamel hypoplasia. The enamel on his teeth did not develop correctly. It is hard, but thin and is not enough. This is due to his prematurity, low birth weight, early malnutrition, and most likely is hereditary. What does this mean? We need to brush his teeth as much as we can. Its a good thing he loves brushing his teeth! His overbite is at 10% which isn't too bad for a kid that still finds an immense amount of comfort in his thumb. He's pretty good about it during the day now, but at night that what he goes too. He's still young enough that as his big boy teeth come in they will self-correct.
-AJ started his hippotherapy (horse riding therapy) back up again at the end of April. His face was priceless as we pulled into the driveway. This kid has got a memory like his momma. At least a visual memory, that is. He's once again riding the pony, Chubbs. It is amazing to see how much he has grown and how different he looks on the horse. During his sessions he often rotates between sitting forward and backward on the horse. The change in his posture is remarkable when he's backwards. This is because he is sitting on the horse's withers (sort of like shoulder blades) which gently force him to sit upright and hold his posture. Horses are awesome. His riding center added some new fun things to the arena this year. AJ really like the hanging pool noodles that they walk through. It's like a therapy car wash.
May
-My mom and I went on a weekend getaway to Lake Geneva. Oh how I love me some girlie time. We shopped, drank wine, ate yummy food, and spent some awesome mother-daughter time together.
-I toured a school here in the area strictly for special needs children. I had gone into the tour with the idea that perhaps it would be appropriate for AJ someday. It is most certainly not appropriate for him. While I have no desire to discredit the school, my ideas for my son's education are very different from the environment I saw. Then it hit me-perhaps my purpose for touring this school was not to see it as an option for AJ, but to realize how well he truly is doing in his current environment. Sometimes it takes some outside perspective to grasp what you really need to know. I ran into a TOD that was part of AJ's initial IEP team. It's been years since I've seen her but she remembered me and of course AJ. That little boy touches more people than I ever thought possible.
-We had AJ's IEP meeting in May. Each year the group gets larger and the space we need changes. This time, we had 16 people with four tables. The plan we have in place for this next year was developed from last year's confusion. I suppose that is the best way to phrase that. His kindergarten year was rough. We are using what we learned from last year to make this year much more fluid for both AJ and his staff. AJ will be in 1st grade in just 3 weeks. Whoa. He'll attend school for 6 hours a day and continue receiving the following services: Special Education, Teacher of the Deaf, Auditory Therapy, Speech Therapy, Physical Therapy, Occupational Therapy, Specially Designed Physical Education, and one-on-one assistance.
-In addition to AJ's IEP, we formulated a FBA and FBP. No, I did not misspell FBI. A Functional Behavior Assessment was drawn up, from which we drafted a Function Behavior Plan. AJ had quite a few aggressive behaviors at school in the last few months. As with anything AJ, his reasoning for behavior is not based solely on one thing. The staff has struggled with him to keep his implants on, becoming extremely aggressive when they attempt to get him all together again. He was aggressive during his bathroom routine. Behaviors included biting, graded scratching, and pinching. Many things with AJ are a mystery or guessing game. The question I dread, why is he doing that? I feel like I am supposed to have the exact answer, and I don't. It is definitely behavior, but also communicating frustration, anger, etc. The more you fight him, the more he fights back and wants the attention. It doesn't matter if its positive or negative. We are squeak toys. I'll get to the squeak toys later. The FBP already needs to be changed. We'll be working on that as we begin the school year.
-AJ had another emc3 (Every Move Counts, Clicks, and Chats) evaluation in May. This is the first time an evaluation has been repeated on a student, so the fantastic special education teacher that consults on AJ's team was thrilled to do a follow-up evaluation. AJ did well throughout the evaluation, which we were able to see via a video of the session. Most of his reactions were congruent with his 2010 evaluation. The one section of the evaluation that stood out-Olfactory. AJ's response to lavender was mind-blowing. It calms him immediately. We are excited to use this evaluation, in addition to the knowledge we gathered for last year to form a functional day of school for him.
-AJ saw his physical medicine doctor in late May. This is the first time in a while that we've seen her and haven't done botox. He didn't need it. She asked for a follow-up in 3 months, so we will see her this month (August). AJ has had his night splint for a while now and will not sleep with it on. Correction-would not sleep with it on. She suggested we have him wear it during dinner, tv time, and other periods of down time, just to give him a good stretch. He's been doing very well with it. The splint keeps his leg/foot at a 90 degree angle and is hinged so we can decrease the angle to create more of a stretch.
-AJ had another change in his cochlear implant mapping. He struggles wearing them bilaterally. At this time, he didn't fight me when I put on his implants-but he fought everyone else on the planet.
-We celebrated AJ's 3rd Hearing Birthday!!!
-AJ had a slew of appointments at the Children's Development Center. We had initially wanted to have him tested for autism and Angelman's syndrome. This effort turned into the "Lexus" of workups and included individual evaluations from a development specialist, psychologist, and Speech & Language Pathologist. These evaluations were spread out over the month of May. I've never had reports sent to me so fast. I love that. In mid-June we met as a whole team. The following things were determined:
AJ is a calm, easy going child
AJ does not have autism
AJ does not have Angelman's syndrome and was already tested for it in a genetics test we did a few years ago
AJ had intra-uterine growth retardation. Meaning, his birth-mother's pregnancy started off on the wrong foot from the get-go. Add that to the lack of oxygen at birth and you have an AJ. The information given to us in his referral, estimated 4-6 weeks premature, is correct.
AJ's cognitive level is at a 2 year old level.
AJ's language level is at 3-6 months for expressive and 6-9 months for receptive
AJ very likely has speech and language disorders underneath everything else he has going on
AJ is ready to take it to the next level with his learning skills
AJ's behaviors are to get our attention. We are the squeak toys. He does something, we react. Repeat, repeat, repeat. The behavior should be ignored.
AJ is not in a plateau, and there is no reason to think he will. His brain is moving at its own pace.
If AJ's cognitive ability is at 2 years of age, I'm sure this has added to his struggles at school. What two year old goes to school all day?
AJ's brain and auditory memory may not interpret the information he's given through his cochlear implants.
AJ's difficulty at having "all systems go" prevents him from accessing the world as you and I do.
AJ is a special needs child, and will remain a special needs child.
-AJ lost his first tooth! He lost the bottom front right tooth. It was wiggly for a while, but then all of a sudden my mom noticed it missing as she was rolling him on the ball! We never did find it. My assumption is that he swallowed it.
-I received a call from the PE teacher one afternoon regarding AJ. He had been nominated for a scholarship award. A fellow Mom nominated AJ for the S.J.C Scholarship. S.J.C. was a teacher who taught at AJ's school for many years who passed a few years ago. His family setup a scholarship fund in his name, just as he had requested. Each year this award is handed out to a student with exceptional needs. This year, AJ was chosen. He received $250 to use toward whatever therapies or equipment AJ needs. We dedicated these funds to his hippotherapy. I had the pleasure of meeting S.J.C.'s brother and shared AJ's full-story with him. We are so grateful for the C family's generosity. I'm anxious to see AJ's name added to the plaque that hangs in the front entrance of the school. What an amazing gift for our kiddo.
June
-Through a chain of incredible events and meeting some incredible people, I've been given an amazing opportunity. I was asked to be a District Parent Liaison for our school district. I cannot tell you how excited I am about this! This fall will be jam-packed full of trainings, but I am so looking forward to it. Currently there is one liaison for our district..I just so happen to know her. Well. I'm excited to partner with her...and lighten her load! I'll be helping families advocate for their children! What could be better than that!!
-AJ graduated Kindergarten. Oh my cuteness. School had a cute little graduation ceremony and a song presentation by the kids. It's so amazing to watch them all grow each year. One of AJ's little lady friends helped him "cross the bridge" from kindergarten to 1st grade. It was adorable. And, as it turns out-she's adopted from Guatemala too. It's a small world people.
-We had a family reunion of sorts at a lake resort Jeremy and his family used to go to multiple times a year. It was a great weekend and celebrated the lives of those in his family that we've lost. AJ fell in love with the lake and was not too disappointed with the playground right across from our cottage.
-We celebrated out 11th wedding anniversary!
-A while ago AJ's pediatrician suggested we see a dermatologist to check out the scarring on the back of his head. As AJ grows, we've become concerned as to whether it will "stretch" with his head growth or who knows what else might happen to it. So, we added a dermatologist to AJ's repertoire of providers. I've always been mighty curious as to what the little bumps are on his legs. Something only a mom would notice, but still. He did have scabies when he was at the orphanage (I know, ewww) so I thought it was slight scarring from that. The dermatologist could not determine what caused the scar on his head. She was however concerned about whether or not a foreign matter was under the skin as the scar is very thick. She took a photo to consult with her colleagues and then requested an MRI. Here we go with the "He can't have an MRI because he has cochlear implants" speech. She was very understanding and requested that we have the results of his original MRI and CT scans sent to her. No one knows what the scar is. His MRI showed no foreign matter under the scar. All good news right? She referred us to the skin surgeon for a consult.
When she looked at his legs, she told me it was not from scabies. AJ was diagnosed with keratosis pilaris. The little bumps are due to clogged hair follicles. You can read more on the condition by clicking above. While this is common, AJ seemed rather irritated with his skin and scratched at times. His skin gets dry very quickly. He has it mostly on his upper arms, his thighs, and his legs. We switched to FREE products, meaning nothing with fragrance or dyes, etc. Laundry detergent, dryer sheets, lotion, etc. WHAT A DIFFERENCE it has made. It has made a huge difference for our little guy. I'm so relieved.
-AJ's ESY (summer school) staff was trained on his iPad and did a fantastic job during his 6 weeks of summer school. AJ really did well. Not only do I attribute that to his rock star staff, but also to the quiet, distraction-free environment he was learning in.
-My mom moved closer to us in June. Oh how we love having her closer! She's truly been a blessing to our family. I love that can just pop over and not drive a half hour. It's great!
-AJ turned 6 at the end of June. SIX. SEIS. OLD. We had a Route 66 themed party for him. I usually try to think of something AJ enjoys. Since he can't tell me what he'd like and doesn't understand the concept of birthdays yet, I think about what he loves to do, what he likes to play with, etc. He loves car rides, so Route 66 seemed perfect! In place of gifts for AJ, we asked guests to bring a baby item as a donation for layettes that a local non-profit puts together for expectant mothers. We were so excited and grateful for every one's generosity! Lots and lots of new moms and their babies will be well-stocked!!
-We put up a small (just less than 3 foot) pool in our yard. Oh what a good idea! No, I'm serious. AJ absolutely loves it. In fact, he learned to hold his breath under water. He can hold it for 10 seconds. This kid is going to be in the Special Olympics for swimming. I am so not kidding. The local Y where we hold a membership is quite a drive from here. It also makes me uncomfortable that they've had several cases of pertussis and whooping cough there in recent months. We're looking at other options for AJ to continue swimming in the colder months. Water does wonders for him!
-Jeremy was accepted in the University of Cinncinati's Family Nurse Practioner program! He'll be starting in January and is super excited! He's been out of school for 17 months so he's chompin' at the bit get back into the groove. By the way, its an online program with clinicals locally. We are not moving to Ohio. Nuh uh.
July
-Jeremy had a chance to sneak away to Oshkosh, Wisconsin for Lifest 2012. It was an incredible experience. Lifest is a Christian music festival. They had a grandstand and other smaller stages in the biggest park I've ever seen. We took out our folding chairs and sat and listened to music at the grandstand most of the days. At night we made a habit of going to one of the tents for the late acts. We had a fabulous time. Hearing the first few notes of "I Will Be Here" by Steven Curtis Chapman was amazing. Two friends of mine sang that song at our wedding. Jeremy and I danced in the middle of the aisle. Forget that there were 10,000 people sitting around us. I bawled. Uncontrollably. Therefore, confusing my husband-to him crying means you are sad. I was not sad, not in the least. My mind became a Rolodex of memories of our life together. We've been together 15 years. That is a lonnnng time. I was so proud of what we've become and how we have not only survived, but thrived. We'll definitely be going again next year.
August
-We took a trip to Iowa to visit Jeremy's parents. AJ experienced cotton candy for the first time, and went on his first real ride. Let me tell you, the Berry Go Round is nothing like the Tilt o' Whirl we had growing up! AJ was neutral about the ride, which really surprised me. We were just excited that he was tall enough this year to ride a ride.
-AJ was finally granted speech (feeding) therapy visits as well as occupational therapy. We have 12 sessions to squeeze into the remaining of August. Ufta! Feeding wise AJ has regressed a bit. He wants to claw everything and chooses not to use his spoon or fork. Because his cerebral palsy affects his left side, you would think the left side of his mouth would be weak also. Not so. The right side of his mouth is weak, where the left is his strong side. The body is a mysterious thing. He chooses to place things with his fingers and move them from side to side with his fingers vs. actually using his tongue to manipulate the foods. He's craving oral stimulation constantly. We've introduced harder items to him, such as the P chew, harder versions of thera-tubing, and theraband. His z-vibe broke and I'm anxious to get his new one. So much of his organization comes from oral awareness.
-AJ's been having gihugic (I love cooky words) growth spurts throughout the summer. I felt the need to schedule a "check-in" with his physical therapist. She said he looks really good, is fully mobile, and is self-correcting. Music to my ears. His left foot is turning in considerably, but not from his hip like it usually does. He's turning in from his tibia down. We're taping his foot with Kinescio tape. All the years we've used Kinescio, we've never taped his foot with it, so I wasn't sure how to do it. What a difference it makes. I also fixed his left shoe, which has Velcro that doesn't get along with his AFO orthotic. It constantly kept coming loose. I attached some extra Velcro, one sticky and one soft strip, to the existing Velcro strap on the shoe and presto! It worked like a charm. Because he wears orthotics, he looses out on the natural sensory input your foot has when you walk. Ok, to keep his foot straight and maintain balance, we take away some sensory. Such is life. Back to his PT's thoughts, she literally looked at me and said, "Why are you here? He's doing fantastic. And I am not taking him back on my service." Ok then. She calmed my fears, as always. In order to keep avoiding surgery, which is always our goal, we are doing soft tissue massage on his calf muscles and his foot especially. His plantar fascia is very active. We also do the foot wiggle, which consists of holding the sides of his foot and, wiggling rapidly.
-We had a playset built in our yard for the big boy himself. The look on his face when he saw it was PRICELESS. We added a rock climbing ramp to provide nature physical therapy. We are sneaky parents like that. He's going down the slide himself, which gets quite a bit of speed! He climbs up and down the ladder on his own and balances himself on the swings like a pro. He's an amazing little man. Having the set in our yard also helps keep him occupied. Since he's not the kid who will watch a tv show or sit and read and pretend play, this gives him something to focus on AND enjoy. We love it!
-I'm still taking courses to earn my BA in English. I'm 15 classes into my program. My original date of graduation was September 2013, but now it is December 2013. I had to add two classes to my schedule to fulfill the program requirements. I had to get to a certain point of the program to choose the classes I wanted to take. Summer has proved to be quite difficult trying to balance having AJ home and doing course work. Steady wins the race, right?
-AJ had a petit mal seizure last week after waking up from school. While my intial "in the moment" reactions to them are improving (which-I'm not sure if that is a good or bad thing) the after effect is what drains me. We went to a concert that night and I was just drained. Having fun? Sure. But if you looked at me I looked bored out my gourd. All in all, he's been doing well. He does have clusters of absent seizures, and I think he knows when they are coming on. Sometimes he's upset about it, other times he just comes back like flipping a switch. His little sad face is so heartbreaking. Buddy, if I could make them go away, I would. Believe me.
-AJ qualified for Family Support Program funds again this year. I made our home study visit appointment this week and am preparing everything we'll need to submit. We always seem to qualify when changes are about to be made. I'm not sure how we do that. Our plan is to have sidewalk in front of the house redone and widened a bit. New regulations regarding what the program will pay for are coming down from the state level. Our coordinator advised us to gather as much information as possible to "prove" that AJ needs this walkway. Despite this, we are ever grateful that he qualified for funding again.
-AJ continues to use his iPad for communication. Two weeks ago we had his iPad in church and he kept hitting the home button to exit from the menu or app that was up and clearly he didn't care for. Jeremy and I were thrilled! He shocked me when we were in Iowa by turning it on with the home button all by himself!! Wahoo! We have specific goals in his IEP related to his iPad and he just aced one of them! During summer school AJ was asked to listen to a musical instrument and then choose from three images of the instruments on his iPad. This little boy amazes me.
The SLP that evaluated him at the development center suggested using ABA flash card apps. AJ learns best by rote practice and let me tell you, these apps are awesome. There are different categories, such as emotions, foods, sports, actions, vehicles, animals, etc. She also gave me a mega list of apps that she a colleague put together, as well as a list the center hands out. One of these days I will dedicate a post to the 'ol iPad and all its awesomeness.
-A friend told me about the COOLEST APP EVER. Ok, maybe not the coolest, but it sure is informative for Jeremy and I as non-cochlear implant users. There are several apps that have a dB meter. Yes, I know this is awesome. The app is Decibel 10. I am seriously disturbed by how loud our world is. Despite this, I find this app amazingly helpful. AJ has been having a seriously hard time with his cochlear implants. This app is helping immensely as I can identify what range of sound bothers him and what he can tolerate. I'm anxious to take it to school and use the app in the school environment.
-Jeremy and I participated in our church's Believer's Baptism in the lake. What.An.Incredible.Experience. I really don't have words other than it was an amazing experience and I am so grateful we made the decision to be baptized.
-I've been participating in a women's bible study. The study is appropriately called "Stuck". The ladies in my group are all amazing women. Next week is our last week and I am incredibly sad that we won't be meeting anymore. We've followed this study and I've become a new woman because of it. Truly. As much as I am looking forward to meeting other peeps with the fall groups form, I am sad. Each week we've done a "Chica of the Week". Each of us writes a prayer request and we pick cards from a basket. You are to encourage and pray for your chica that week. I absolutely love this idea. I love sending encouragement and well wishes to my chica, and love receiving prayers and encouragement from whomever has me as their chica that week. Sigh. What I learned? I am not alone in my place of stuck.
-AJ is scheduled for a follow-up with his physical medicine doctor, a cochlear implant mapping, and an appt with his neurolgist within the next two weeks. He is also scheduled for a genetics consult and a consult with the skin surgeon regarding his head scar.
Is that it? I think so. All in all, AJ is doing great. Thanks for checking in here on the 'ol blog. She won't be neglected anymore. Promise. Ok, I promise I'll try.
Oh what a summer it has been. Correction-oh what a spring and summer it has been. I've had an outline of things to blog about on the inside of my calendar for months-does that count? Good intentions, always. Here goes...
April
-During a regular PT session, AJ's physical therapist made the decision to discharge him. Yes, he's doing that WELL. We were able to use physical therapy to reverse his functional scoliosis. "Heidi, you did this on your own. You don't need me anymore!" Looking back I am a bit relieved decided this during that session. I think stating something to the idea of "Ok, four more sessions and then I'll be discharging him" would have ripped my heart out. I've blogged about his PT's awesomeness many times before. The idea of her not being AJ's PT was completely foreign to me. I spent the last 10 minutes of his session in complete shock. That shock continued as we walked to the car. I closed my door-and bawled. I just could not believe we were done. I never saw a tangible end to his physical therapy. It because part of our life-his PT became part of our family. It just never occurred me to me, yet here we were. Almost five years of therapy and he's just suddenly done. Never fear, his therapist did not get off easy. I still sent her regular emails and questions as needed. {Secretly she loves it!}
-AJ had a follow-up at the dental clinic. He was diagnosed with enamel hypoplasia. The enamel on his teeth did not develop correctly. It is hard, but thin and is not enough. This is due to his prematurity, low birth weight, early malnutrition, and most likely is hereditary. What does this mean? We need to brush his teeth as much as we can. Its a good thing he loves brushing his teeth! His overbite is at 10% which isn't too bad for a kid that still finds an immense amount of comfort in his thumb. He's pretty good about it during the day now, but at night that what he goes too. He's still young enough that as his big boy teeth come in they will self-correct.
-AJ started his hippotherapy (horse riding therapy) back up again at the end of April. His face was priceless as we pulled into the driveway. This kid has got a memory like his momma. At least a visual memory, that is. He's once again riding the pony, Chubbs. It is amazing to see how much he has grown and how different he looks on the horse. During his sessions he often rotates between sitting forward and backward on the horse. The change in his posture is remarkable when he's backwards. This is because he is sitting on the horse's withers (sort of like shoulder blades) which gently force him to sit upright and hold his posture. Horses are awesome. His riding center added some new fun things to the arena this year. AJ really like the hanging pool noodles that they walk through. It's like a therapy car wash.
May
-My mom and I went on a weekend getaway to Lake Geneva. Oh how I love me some girlie time. We shopped, drank wine, ate yummy food, and spent some awesome mother-daughter time together.
-I toured a school here in the area strictly for special needs children. I had gone into the tour with the idea that perhaps it would be appropriate for AJ someday. It is most certainly not appropriate for him. While I have no desire to discredit the school, my ideas for my son's education are very different from the environment I saw. Then it hit me-perhaps my purpose for touring this school was not to see it as an option for AJ, but to realize how well he truly is doing in his current environment. Sometimes it takes some outside perspective to grasp what you really need to know. I ran into a TOD that was part of AJ's initial IEP team. It's been years since I've seen her but she remembered me and of course AJ. That little boy touches more people than I ever thought possible.
-We had AJ's IEP meeting in May. Each year the group gets larger and the space we need changes. This time, we had 16 people with four tables. The plan we have in place for this next year was developed from last year's confusion. I suppose that is the best way to phrase that. His kindergarten year was rough. We are using what we learned from last year to make this year much more fluid for both AJ and his staff. AJ will be in 1st grade in just 3 weeks. Whoa. He'll attend school for 6 hours a day and continue receiving the following services: Special Education, Teacher of the Deaf, Auditory Therapy, Speech Therapy, Physical Therapy, Occupational Therapy, Specially Designed Physical Education, and one-on-one assistance.
-In addition to AJ's IEP, we formulated a FBA and FBP. No, I did not misspell FBI. A Functional Behavior Assessment was drawn up, from which we drafted a Function Behavior Plan. AJ had quite a few aggressive behaviors at school in the last few months. As with anything AJ, his reasoning for behavior is not based solely on one thing. The staff has struggled with him to keep his implants on, becoming extremely aggressive when they attempt to get him all together again. He was aggressive during his bathroom routine. Behaviors included biting, graded scratching, and pinching. Many things with AJ are a mystery or guessing game. The question I dread, why is he doing that? I feel like I am supposed to have the exact answer, and I don't. It is definitely behavior, but also communicating frustration, anger, etc. The more you fight him, the more he fights back and wants the attention. It doesn't matter if its positive or negative. We are squeak toys. I'll get to the squeak toys later. The FBP already needs to be changed. We'll be working on that as we begin the school year.
-AJ had another emc3 (Every Move Counts, Clicks, and Chats) evaluation in May. This is the first time an evaluation has been repeated on a student, so the fantastic special education teacher that consults on AJ's team was thrilled to do a follow-up evaluation. AJ did well throughout the evaluation, which we were able to see via a video of the session. Most of his reactions were congruent with his 2010 evaluation. The one section of the evaluation that stood out-Olfactory. AJ's response to lavender was mind-blowing. It calms him immediately. We are excited to use this evaluation, in addition to the knowledge we gathered for last year to form a functional day of school for him.
-AJ saw his physical medicine doctor in late May. This is the first time in a while that we've seen her and haven't done botox. He didn't need it. She asked for a follow-up in 3 months, so we will see her this month (August). AJ has had his night splint for a while now and will not sleep with it on. Correction-would not sleep with it on. She suggested we have him wear it during dinner, tv time, and other periods of down time, just to give him a good stretch. He's been doing very well with it. The splint keeps his leg/foot at a 90 degree angle and is hinged so we can decrease the angle to create more of a stretch.
-AJ had another change in his cochlear implant mapping. He struggles wearing them bilaterally. At this time, he didn't fight me when I put on his implants-but he fought everyone else on the planet.
-We celebrated AJ's 3rd Hearing Birthday!!!
-AJ had a slew of appointments at the Children's Development Center. We had initially wanted to have him tested for autism and Angelman's syndrome. This effort turned into the "Lexus" of workups and included individual evaluations from a development specialist, psychologist, and Speech & Language Pathologist. These evaluations were spread out over the month of May. I've never had reports sent to me so fast. I love that. In mid-June we met as a whole team. The following things were determined:
AJ is a calm, easy going child
AJ does not have autism
AJ does not have Angelman's syndrome and was already tested for it in a genetics test we did a few years ago
AJ had intra-uterine growth retardation. Meaning, his birth-mother's pregnancy started off on the wrong foot from the get-go. Add that to the lack of oxygen at birth and you have an AJ. The information given to us in his referral, estimated 4-6 weeks premature, is correct.
AJ's cognitive level is at a 2 year old level.
AJ's language level is at 3-6 months for expressive and 6-9 months for receptive
AJ very likely has speech and language disorders underneath everything else he has going on
AJ is ready to take it to the next level with his learning skills
AJ's behaviors are to get our attention. We are the squeak toys. He does something, we react. Repeat, repeat, repeat. The behavior should be ignored.
AJ is not in a plateau, and there is no reason to think he will. His brain is moving at its own pace.
If AJ's cognitive ability is at 2 years of age, I'm sure this has added to his struggles at school. What two year old goes to school all day?
AJ's brain and auditory memory may not interpret the information he's given through his cochlear implants.
AJ's difficulty at having "all systems go" prevents him from accessing the world as you and I do.
AJ is a special needs child, and will remain a special needs child.
-AJ lost his first tooth! He lost the bottom front right tooth. It was wiggly for a while, but then all of a sudden my mom noticed it missing as she was rolling him on the ball! We never did find it. My assumption is that he swallowed it.
-I received a call from the PE teacher one afternoon regarding AJ. He had been nominated for a scholarship award. A fellow Mom nominated AJ for the S.J.C Scholarship. S.J.C. was a teacher who taught at AJ's school for many years who passed a few years ago. His family setup a scholarship fund in his name, just as he had requested. Each year this award is handed out to a student with exceptional needs. This year, AJ was chosen. He received $250 to use toward whatever therapies or equipment AJ needs. We dedicated these funds to his hippotherapy. I had the pleasure of meeting S.J.C.'s brother and shared AJ's full-story with him. We are so grateful for the C family's generosity. I'm anxious to see AJ's name added to the plaque that hangs in the front entrance of the school. What an amazing gift for our kiddo.
June
-Through a chain of incredible events and meeting some incredible people, I've been given an amazing opportunity. I was asked to be a District Parent Liaison for our school district. I cannot tell you how excited I am about this! This fall will be jam-packed full of trainings, but I am so looking forward to it. Currently there is one liaison for our district..I just so happen to know her. Well. I'm excited to partner with her...and lighten her load! I'll be helping families advocate for their children! What could be better than that!!
-AJ graduated Kindergarten. Oh my cuteness. School had a cute little graduation ceremony and a song presentation by the kids. It's so amazing to watch them all grow each year. One of AJ's little lady friends helped him "cross the bridge" from kindergarten to 1st grade. It was adorable. And, as it turns out-she's adopted from Guatemala too. It's a small world people.
-We had a family reunion of sorts at a lake resort Jeremy and his family used to go to multiple times a year. It was a great weekend and celebrated the lives of those in his family that we've lost. AJ fell in love with the lake and was not too disappointed with the playground right across from our cottage.
-We celebrated out 11th wedding anniversary!
-A while ago AJ's pediatrician suggested we see a dermatologist to check out the scarring on the back of his head. As AJ grows, we've become concerned as to whether it will "stretch" with his head growth or who knows what else might happen to it. So, we added a dermatologist to AJ's repertoire of providers. I've always been mighty curious as to what the little bumps are on his legs. Something only a mom would notice, but still. He did have scabies when he was at the orphanage (I know, ewww) so I thought it was slight scarring from that. The dermatologist could not determine what caused the scar on his head. She was however concerned about whether or not a foreign matter was under the skin as the scar is very thick. She took a photo to consult with her colleagues and then requested an MRI. Here we go with the "He can't have an MRI because he has cochlear implants" speech. She was very understanding and requested that we have the results of his original MRI and CT scans sent to her. No one knows what the scar is. His MRI showed no foreign matter under the scar. All good news right? She referred us to the skin surgeon for a consult.
When she looked at his legs, she told me it was not from scabies. AJ was diagnosed with keratosis pilaris. The little bumps are due to clogged hair follicles. You can read more on the condition by clicking above. While this is common, AJ seemed rather irritated with his skin and scratched at times. His skin gets dry very quickly. He has it mostly on his upper arms, his thighs, and his legs. We switched to FREE products, meaning nothing with fragrance or dyes, etc. Laundry detergent, dryer sheets, lotion, etc. WHAT A DIFFERENCE it has made. It has made a huge difference for our little guy. I'm so relieved.
-AJ's ESY (summer school) staff was trained on his iPad and did a fantastic job during his 6 weeks of summer school. AJ really did well. Not only do I attribute that to his rock star staff, but also to the quiet, distraction-free environment he was learning in.
-My mom moved closer to us in June. Oh how we love having her closer! She's truly been a blessing to our family. I love that can just pop over and not drive a half hour. It's great!
-AJ turned 6 at the end of June. SIX. SEIS. OLD. We had a Route 66 themed party for him. I usually try to think of something AJ enjoys. Since he can't tell me what he'd like and doesn't understand the concept of birthdays yet, I think about what he loves to do, what he likes to play with, etc. He loves car rides, so Route 66 seemed perfect! In place of gifts for AJ, we asked guests to bring a baby item as a donation for layettes that a local non-profit puts together for expectant mothers. We were so excited and grateful for every one's generosity! Lots and lots of new moms and their babies will be well-stocked!!
-We put up a small (just less than 3 foot) pool in our yard. Oh what a good idea! No, I'm serious. AJ absolutely loves it. In fact, he learned to hold his breath under water. He can hold it for 10 seconds. This kid is going to be in the Special Olympics for swimming. I am so not kidding. The local Y where we hold a membership is quite a drive from here. It also makes me uncomfortable that they've had several cases of pertussis and whooping cough there in recent months. We're looking at other options for AJ to continue swimming in the colder months. Water does wonders for him!
-Jeremy was accepted in the University of Cinncinati's Family Nurse Practioner program! He'll be starting in January and is super excited! He's been out of school for 17 months so he's chompin' at the bit get back into the groove. By the way, its an online program with clinicals locally. We are not moving to Ohio. Nuh uh.
July
-Jeremy had a chance to sneak away to Oshkosh, Wisconsin for Lifest 2012. It was an incredible experience. Lifest is a Christian music festival. They had a grandstand and other smaller stages in the biggest park I've ever seen. We took out our folding chairs and sat and listened to music at the grandstand most of the days. At night we made a habit of going to one of the tents for the late acts. We had a fabulous time. Hearing the first few notes of "I Will Be Here" by Steven Curtis Chapman was amazing. Two friends of mine sang that song at our wedding. Jeremy and I danced in the middle of the aisle. Forget that there were 10,000 people sitting around us. I bawled. Uncontrollably. Therefore, confusing my husband-to him crying means you are sad. I was not sad, not in the least. My mind became a Rolodex of memories of our life together. We've been together 15 years. That is a lonnnng time. I was so proud of what we've become and how we have not only survived, but thrived. We'll definitely be going again next year.
August
-We took a trip to Iowa to visit Jeremy's parents. AJ experienced cotton candy for the first time, and went on his first real ride. Let me tell you, the Berry Go Round is nothing like the Tilt o' Whirl we had growing up! AJ was neutral about the ride, which really surprised me. We were just excited that he was tall enough this year to ride a ride.
-AJ was finally granted speech (feeding) therapy visits as well as occupational therapy. We have 12 sessions to squeeze into the remaining of August. Ufta! Feeding wise AJ has regressed a bit. He wants to claw everything and chooses not to use his spoon or fork. Because his cerebral palsy affects his left side, you would think the left side of his mouth would be weak also. Not so. The right side of his mouth is weak, where the left is his strong side. The body is a mysterious thing. He chooses to place things with his fingers and move them from side to side with his fingers vs. actually using his tongue to manipulate the foods. He's craving oral stimulation constantly. We've introduced harder items to him, such as the P chew, harder versions of thera-tubing, and theraband. His z-vibe broke and I'm anxious to get his new one. So much of his organization comes from oral awareness.
-AJ's been having gihugic (I love cooky words) growth spurts throughout the summer. I felt the need to schedule a "check-in" with his physical therapist. She said he looks really good, is fully mobile, and is self-correcting. Music to my ears. His left foot is turning in considerably, but not from his hip like it usually does. He's turning in from his tibia down. We're taping his foot with Kinescio tape. All the years we've used Kinescio, we've never taped his foot with it, so I wasn't sure how to do it. What a difference it makes. I also fixed his left shoe, which has Velcro that doesn't get along with his AFO orthotic. It constantly kept coming loose. I attached some extra Velcro, one sticky and one soft strip, to the existing Velcro strap on the shoe and presto! It worked like a charm. Because he wears orthotics, he looses out on the natural sensory input your foot has when you walk. Ok, to keep his foot straight and maintain balance, we take away some sensory. Such is life. Back to his PT's thoughts, she literally looked at me and said, "Why are you here? He's doing fantastic. And I am not taking him back on my service." Ok then. She calmed my fears, as always. In order to keep avoiding surgery, which is always our goal, we are doing soft tissue massage on his calf muscles and his foot especially. His plantar fascia is very active. We also do the foot wiggle, which consists of holding the sides of his foot and, wiggling rapidly.
-We had a playset built in our yard for the big boy himself. The look on his face when he saw it was PRICELESS. We added a rock climbing ramp to provide nature physical therapy. We are sneaky parents like that. He's going down the slide himself, which gets quite a bit of speed! He climbs up and down the ladder on his own and balances himself on the swings like a pro. He's an amazing little man. Having the set in our yard also helps keep him occupied. Since he's not the kid who will watch a tv show or sit and read and pretend play, this gives him something to focus on AND enjoy. We love it!
-I'm still taking courses to earn my BA in English. I'm 15 classes into my program. My original date of graduation was September 2013, but now it is December 2013. I had to add two classes to my schedule to fulfill the program requirements. I had to get to a certain point of the program to choose the classes I wanted to take. Summer has proved to be quite difficult trying to balance having AJ home and doing course work. Steady wins the race, right?
-AJ had a petit mal seizure last week after waking up from school. While my intial "in the moment" reactions to them are improving (which-I'm not sure if that is a good or bad thing) the after effect is what drains me. We went to a concert that night and I was just drained. Having fun? Sure. But if you looked at me I looked bored out my gourd. All in all, he's been doing well. He does have clusters of absent seizures, and I think he knows when they are coming on. Sometimes he's upset about it, other times he just comes back like flipping a switch. His little sad face is so heartbreaking. Buddy, if I could make them go away, I would. Believe me.
-AJ qualified for Family Support Program funds again this year. I made our home study visit appointment this week and am preparing everything we'll need to submit. We always seem to qualify when changes are about to be made. I'm not sure how we do that. Our plan is to have sidewalk in front of the house redone and widened a bit. New regulations regarding what the program will pay for are coming down from the state level. Our coordinator advised us to gather as much information as possible to "prove" that AJ needs this walkway. Despite this, we are ever grateful that he qualified for funding again.
-AJ continues to use his iPad for communication. Two weeks ago we had his iPad in church and he kept hitting the home button to exit from the menu or app that was up and clearly he didn't care for. Jeremy and I were thrilled! He shocked me when we were in Iowa by turning it on with the home button all by himself!! Wahoo! We have specific goals in his IEP related to his iPad and he just aced one of them! During summer school AJ was asked to listen to a musical instrument and then choose from three images of the instruments on his iPad. This little boy amazes me.
The SLP that evaluated him at the development center suggested using ABA flash card apps. AJ learns best by rote practice and let me tell you, these apps are awesome. There are different categories, such as emotions, foods, sports, actions, vehicles, animals, etc. She also gave me a mega list of apps that she a colleague put together, as well as a list the center hands out. One of these days I will dedicate a post to the 'ol iPad and all its awesomeness.
-A friend told me about the COOLEST APP EVER. Ok, maybe not the coolest, but it sure is informative for Jeremy and I as non-cochlear implant users. There are several apps that have a dB meter. Yes, I know this is awesome. The app is Decibel 10. I am seriously disturbed by how loud our world is. Despite this, I find this app amazingly helpful. AJ has been having a seriously hard time with his cochlear implants. This app is helping immensely as I can identify what range of sound bothers him and what he can tolerate. I'm anxious to take it to school and use the app in the school environment.
-Jeremy and I participated in our church's Believer's Baptism in the lake. What.An.Incredible.Experience. I really don't have words other than it was an amazing experience and I am so grateful we made the decision to be baptized.
-I've been participating in a women's bible study. The study is appropriately called "Stuck". The ladies in my group are all amazing women. Next week is our last week and I am incredibly sad that we won't be meeting anymore. We've followed this study and I've become a new woman because of it. Truly. As much as I am looking forward to meeting other peeps with the fall groups form, I am sad. Each week we've done a "Chica of the Week". Each of us writes a prayer request and we pick cards from a basket. You are to encourage and pray for your chica that week. I absolutely love this idea. I love sending encouragement and well wishes to my chica, and love receiving prayers and encouragement from whomever has me as their chica that week. Sigh. What I learned? I am not alone in my place of stuck.
-AJ is scheduled for a follow-up with his physical medicine doctor, a cochlear implant mapping, and an appt with his neurolgist within the next two weeks. He is also scheduled for a genetics consult and a consult with the skin surgeon regarding his head scar.
Is that it? I think so. All in all, AJ is doing great. Thanks for checking in here on the 'ol blog. She won't be neglected anymore. Promise. Ok, I promise I'll try.
Thursday, March 8, 2012
Cooking for 1
Or should I say cooking for 1, the 1 army-sized eating machine that is my son?
Jeremy and I joke a lot about how much AJ eats, but in all honesty we are tremendously grateful that he is such a great eater.
Tonight's featured dish?
Spinach and ricotta tortellini with homemade marinara sauce.
I'm no Martha or Food Network guru, but lately I've been challenging myself to go a bit healthier with AJ's diet. While the kid has an all-you-can-eat pass to whatever he wants because he's so little, that doesn't change the ingredients of those golden arch chicken nuggets that are now ingrained in my brain. Ew.
AJ eats anything and everything. The amount he eats literally astonishes people. If he doesn't like something, it is probably due to an oral issue or texture he is unsure about. But it makes me happy to see him eat mini trees of broccoli and kidney beans. If he doesn't want broccoli in that form, he'll eat it in soup the next day. And not wanting it doesn't mean he won't eat it ever. It means just not today or for this meal. I was not surprised when school reported that he loved red beans and rice with hot sauce for lunch a few weeks ago.
I'm on the hunt to find more healthy fats, different proteins, and creative ways to get calcium into his body. He's still taking those gummy vitamins, but they still haven't magically include calcium or anything else that should be in them-in them.
After a long appointment today, I ran through Starbucks to grab him a cookie and water. He ate the whole cookie. I thought to myself, who is that little man chompin' away back there? It's the same little dude who didn't know what a spoon was.
How far we've come.
I think the cookie thing will be a tradition for appointments at the hospital. And maybe, just maybe, Mom will get herself a delicious coffee concoction too. Way to go AJ, Mommy is proud of you!
Jeremy and I joke a lot about how much AJ eats, but in all honesty we are tremendously grateful that he is such a great eater.
Tonight's featured dish?
Spinach and ricotta tortellini with homemade marinara sauce.
I'm no Martha or Food Network guru, but lately I've been challenging myself to go a bit healthier with AJ's diet. While the kid has an all-you-can-eat pass to whatever he wants because he's so little, that doesn't change the ingredients of those golden arch chicken nuggets that are now ingrained in my brain. Ew.
AJ eats anything and everything. The amount he eats literally astonishes people. If he doesn't like something, it is probably due to an oral issue or texture he is unsure about. But it makes me happy to see him eat mini trees of broccoli and kidney beans. If he doesn't want broccoli in that form, he'll eat it in soup the next day. And not wanting it doesn't mean he won't eat it ever. It means just not today or for this meal. I was not surprised when school reported that he loved red beans and rice with hot sauce for lunch a few weeks ago.
I'm on the hunt to find more healthy fats, different proteins, and creative ways to get calcium into his body. He's still taking those gummy vitamins, but they still haven't magically include calcium or anything else that should be in them-in them.
After a long appointment today, I ran through Starbucks to grab him a cookie and water. He ate the whole cookie. I thought to myself, who is that little man chompin' away back there? It's the same little dude who didn't know what a spoon was.
How far we've come.
I think the cookie thing will be a tradition for appointments at the hospital. And maybe, just maybe, Mom will get herself a delicious coffee concoction too. Way to go AJ, Mommy is proud of you!
Sunday, January 15, 2012
"You Do It" Chart
AJ has fallen in love with these frozen sorbet bars.
Huh. The picture didn't turn out as clear as it looked on the camera.
Anyhow, I've posted the chart on the kitchen cabinet as to remind us what he can do on his own, and to facilitate helping him learn new independent skills. I laughed when I saw the dog dish and the word "feed" on the chart. Something so simple that I hadn't thought of. He loves to give Rocky treats, so why not practice scooping and pouring by feeding him too? Genius.
I first found them around Memorial Day last year and thought we'd give them a try. Of course with intentions of increasing his oral awareness, biting, and fine motors skills. Not because they are fun. Heavens no. My brain works in strange ways, people. He didn't understand the concept and didn't want the tube anywhere near his mouth, so I chopped them up into pieces and put them in a bowl. He ate them with a spoon.
Fast forward to two weeks ago when he was eating everything and anything in site and I gave one to him out of sheer desperation. Guess who's eating them all by himself? Tube and all? Yep. I'm so proud of him! And, the fact that they are natural sorbet bars makes me feel less guilty about giving him more than one.
We are working on teaching him how to push the frozen goodness up through the tube. Sometimes he attempts it on his own, or bites the tube itself which pushes the goodness up. Other times, he's quick to just hand it to me. I don't think so, dude. "You Do It" is a very common phrase around here.
And then I stumbled upon this handy chart the other day.
Anyhow, I've posted the chart on the kitchen cabinet as to remind us what he can do on his own, and to facilitate helping him learn new independent skills. I laughed when I saw the dog dish and the word "feed" on the chart. Something so simple that I hadn't thought of. He loves to give Rocky treats, so why not practice scooping and pouring by feeding him too? Genius.
We're all about fostering AJ's independence around here. Sometimes, yes, we do things out of habit, in a time crunch, or even subconsciously. But he's proving more and more than he can do more and more so, we're going to do our best to encourage him.
Even if it means he gets to eat 4 sorbet bars at one sitting. Practice, right?
Sunday, December 6, 2009
An Intense Blur
PT: For the last few PT sessions, AJ's left leg has been considerably tight. His PT is concerned about this, as are we. She was instantly able to tell we had a lot of family things going on over Thanksgiving weekend and didn't get as much massage in as usual. Unreal. AJ has been growing, as he is all legs right now. Even so, he's due for a HUGE growth spurt. We are not thrilled, to say the least. AJ has and will continue to have severe growing pains. It is possible he will lose the ability to walk. We knew this was a possibility, but have a different outlook on it now that its staring us directly in the face. He continually amazes his PT by his ease with standing back up when he falls down even when his tone is kicking in.
We have a plan of action. We are....oh, whats the word. Avoiding? Maybe. I guess we'll go with that. We are avoiding intervention at this point. Meaning, we are doing what we can before turning to botox or surgery. We have increased the width of his kinescio tape, which is working more "magic". We are massaging him, as much as possible. Even when I carry him facing forward, I'm massaging his hammies. We are also continuing the regular exercises, such as the "foot wiggle" and "runner's stretch". We have created bolsters (for him to climb over) out of round oatmeal containers and duct tape. We have made balance beams out of cardboard. We are tossing a preferred item (as bait) and having him crawl over us to get to it. WE MUST KEEP HIM MOBILE AND AMBULATORY. Don't get me wrong, it is terrifying to hear someone say "Your son may stop walking." But I am thankful that we have asked the right questions and kept ourselves in the loop regarding AJ treatment. That makes it a team effort, and a bit less scary.
AJ's CP is a tricky thing. Because his CP is mild, it can often seem non-existent to an onlooker. People often forget AJ is 3.5 years old. He doesn't move around like a typical 3.5 year old. Just because he is walking, doesn't automatically mean he will continue to walk. Will Jeremy and I do everything we can to keep him mobile, absolutely. Are we confident we can do so? With the help of his PT and physical medicine doctor, absolutely. As AJ grows, this will be a constant battle. For some reason the magic age seems to be 15, so maybe that will be his last growth spurt. PT/OT sessions are on Mondays, so I'm anxious to see what they have to say tomorrow. I think his tone has improved over the week, we shall see.
On a positive note: AJ is getting out of bed with ease and much faster. He can climb off the couch at the speed of lightening. I also witnessed him doing the "Captain Morgan" stance, with his right foot on a box and his left straight on the floor holding his body weight.
OT: AJ has been posturing A LOT lately. What is posturing? When he sits on the floor with his legs out in front of him, the left leg is slightly bent upwards, so it is not relaxed (think upside-down "V"). His left arm also seems to pull in to what I call "typical CP hand placement". I've found us using his Benek hand splint a lot more and catching his thumb resting under his fingers. Not good. We're keeping an eye on it, stretching and massaging his arms as much as possible and doing lots of fine motor (finger friendly) activities. Currently, OT's focus has been dressing. Which is going, eh, so-so. He can definitely take things off, like hats, mittens, shirt (if you bring it up to his shoulders), pants, and socks. He tries to help with his AFOs and shoes. He's getting better at "ripping" the velco straps back on his AFOs when its time to take them off. A lot of hand over hand at this point, but he gets the concept. He's struggling with jacket skills. We've added rings or small key chains to his jackets so he can learn to pull up the zipper himself. I'm thinking about making him a felt board with snaps/velcro/zippers on it, just to practice. He still hasn't got quite enough balance to be able to pull his pull-up or pants down himself in standing position. He can get his pants off sitting down, fancy that.
AJ learned (after just 2 hand-over-hand experiences) to give his Daddy HIGH FIVE! YAY!! Bonus-he can do it with both hands. Bummer-he only does it for Daddy.
He showed he could reach his left arm (solo) above his head, straight, without his body being in a funky posture. I was amazed. He picked up corn from his corn bin and sprinkled it down on himself. With his left arm/hand! He can do it with the right too, but whatever. :) He's also starting to put puzzles pieces in (not in the right spots, but its effort) after he's taken them out. He also stacked 5 blocks on top of a tower of blocks already 8 blocks tall. And it did not fall. His reach and placement was that controlled.
Speech/CI: We have our first non-cooing sounds! AJ said "AH" and "OW" (as in ow, I cut my finger) on Wednesday during his speech session at school. Since, we've heard both sounds A LOT. He was definitely playing with his voice today-just to hear himself "talk". He's also starting to move his mouth to imitate-or try imitating-your mouth movements. Its hard to explain. Its different, but at least we know its a good different!
We spend Black Friday afternoon at Urgent Care with AJ. Diagnosis: Double ear infections. He's been ripping his implant off, so this may have played a factor. Well, we know it did for a short time. Certain tones of voice, loud noises, or the dogs barking were really bothering him. Then he displayed the classic signs and we knew it was an ear infection.
He's still ripping off his implant. Its a behavior thing. He's getting a power trip from knowing if he pulls it off he gets something from it. Grrrrrr. It has decreased, so thats good. I think he only did it a few times today. Add this to the list of things we are keeping an eye on.
School: I never did write a separate post detailing AJ's IEP review meeting and parent/teacher conferences. Our IEP review meeting went well. One change was made to his IEP: AJ needs 1:1 instruction at all times. Best of all: His IEP allows him to attend Lowell until June of 2010. Ironically, Jeremy and I were thrilled with this news. We were a bit concerned we'd have to meet every quarter and have the same anxiety three more times. Other's didn't seem so excited. There is no "pass" that will just allow AJ to continue attending Lowell. Actually, there is. It's called MOVE TO WAUKESHA. At least four other kiddos and their families in the TC and AO programs at Lowell have moved to Waukesha from other school districts to make sure their child can attend this program. IT IS WELL WORTH IT.
Our parent teacher conference was helpful. AJ's school SLP, PT, and OT were kind enough to attend our conference with AJ's teacher. We left with many strategies/ideas/activities to help bridge AJ's learning at school to home. I had to pinch myself that night though. Am I really a Mom, going to my son's first parent teacher conference? I guess so.
AJ seems to be paying more attention to his peers. He's doing something new every day. Transitions from activity to activity have once again become difficult. We are working on strategies with the school team to make these transitions smoother again. I am so thankful his team at school is patient, kind, and understanding. Although it is hard to hear he had a bad day, it is reassuring to know that he is with a team that will wipe the slate clean and start anew the following day.
Feeding/Speech Therapy: We have another follow-up appointment next week at the GI Clinic. My stomach is already in knots. Not only just because its another weight check, but because he had ear infections, which caused a lack of regular appetite and liquid intake for a few days. I'm not going to lie, I am genuinely freaked out this time. We are waiting on the report to be written regarding the results and recommendations per his swallow study in early November. Once we receive an OK from insurance, we'll beginning feeding therapy again. Currently, I'm considering buying stock in Z-Vibe batteries.
Social/Emotional/Cognitive/Language: As I mentioned above, AJ is paying more attention to his peers. He knows what walking down the hall means at school-time to go to the doors and go outside to find Mommy. He made the connection between a soft-plush vibrating turtle and Daddy's XBOX-they both have a vibration so he put the turtle on top of the XBOX. He knows the auditory cue for "sit down". He has signed "eat", "please", and "bath" (approximation sign). He is playing with his voice. His memory skills improve daily. He knows both how to wash his hands at the sink and how to wipe his hands off on a wet towel. He holds his hands up for a dry towel when you tell him "all done" with washing hands. AJ's emotional responses have become different, with more variety. He understands the auditory cue "ah ah ahhhh^hhhh" (You know, when you reach for the hot stove and your Mom would say "ah ah ahhhh^hhhh"?? That.) That amazes me, as its not even a true "word" cue.
I'm sure there is more that I am missing. Let's face it, these days, my brain is a fuzzy blur. But I think thas enough paragraphs to supply the jist.
This time of year is always hard. It sort of hit me unexpectedly this time around though. AJ was diagnosed with bilateral profound hearing loss on 11/28/07 and cerebral palsy on 12/5/07. Two years ago, my Dad passed away shortly after that neurology appointment when we received the CP diagnosis. I found myself crying over cheeseburgers while driving AJ to school last week. You'd have to know my Dad to understand that last sentence. I wish my Dad was here to giggle at my perfectionism, tell me to keep things simple, and reassure me that everything was going to be OK. He was so good at that. That whole period in our lives is so vivid yet so out of focus. An intense blur. We all made it through, somehow, as I'm sure we'll make it through these anniversaries. Not much to celebrate per se, but certainly memorable moments in our lives.
We have a plan of action. We are....oh, whats the word. Avoiding? Maybe. I guess we'll go with that. We are avoiding intervention at this point. Meaning, we are doing what we can before turning to botox or surgery. We have increased the width of his kinescio tape, which is working more "magic". We are massaging him, as much as possible. Even when I carry him facing forward, I'm massaging his hammies. We are also continuing the regular exercises, such as the "foot wiggle" and "runner's stretch". We have created bolsters (for him to climb over) out of round oatmeal containers and duct tape. We have made balance beams out of cardboard. We are tossing a preferred item (as bait) and having him crawl over us to get to it. WE MUST KEEP HIM MOBILE AND AMBULATORY. Don't get me wrong, it is terrifying to hear someone say "Your son may stop walking." But I am thankful that we have asked the right questions and kept ourselves in the loop regarding AJ treatment. That makes it a team effort, and a bit less scary.
AJ's CP is a tricky thing. Because his CP is mild, it can often seem non-existent to an onlooker. People often forget AJ is 3.5 years old. He doesn't move around like a typical 3.5 year old. Just because he is walking, doesn't automatically mean he will continue to walk. Will Jeremy and I do everything we can to keep him mobile, absolutely. Are we confident we can do so? With the help of his PT and physical medicine doctor, absolutely. As AJ grows, this will be a constant battle. For some reason the magic age seems to be 15, so maybe that will be his last growth spurt. PT/OT sessions are on Mondays, so I'm anxious to see what they have to say tomorrow. I think his tone has improved over the week, we shall see.
On a positive note: AJ is getting out of bed with ease and much faster. He can climb off the couch at the speed of lightening. I also witnessed him doing the "Captain Morgan" stance, with his right foot on a box and his left straight on the floor holding his body weight.
OT: AJ has been posturing A LOT lately. What is posturing? When he sits on the floor with his legs out in front of him, the left leg is slightly bent upwards, so it is not relaxed (think upside-down "V"). His left arm also seems to pull in to what I call "typical CP hand placement". I've found us using his Benek hand splint a lot more and catching his thumb resting under his fingers. Not good. We're keeping an eye on it, stretching and massaging his arms as much as possible and doing lots of fine motor (finger friendly) activities. Currently, OT's focus has been dressing. Which is going, eh, so-so. He can definitely take things off, like hats, mittens, shirt (if you bring it up to his shoulders), pants, and socks. He tries to help with his AFOs and shoes. He's getting better at "ripping" the velco straps back on his AFOs when its time to take them off. A lot of hand over hand at this point, but he gets the concept. He's struggling with jacket skills. We've added rings or small key chains to his jackets so he can learn to pull up the zipper himself. I'm thinking about making him a felt board with snaps/velcro/zippers on it, just to practice. He still hasn't got quite enough balance to be able to pull his pull-up or pants down himself in standing position. He can get his pants off sitting down, fancy that.
AJ learned (after just 2 hand-over-hand experiences) to give his Daddy HIGH FIVE! YAY!! Bonus-he can do it with both hands. Bummer-he only does it for Daddy.
He showed he could reach his left arm (solo) above his head, straight, without his body being in a funky posture. I was amazed. He picked up corn from his corn bin and sprinkled it down on himself. With his left arm/hand! He can do it with the right too, but whatever. :) He's also starting to put puzzles pieces in (not in the right spots, but its effort) after he's taken them out. He also stacked 5 blocks on top of a tower of blocks already 8 blocks tall. And it did not fall. His reach and placement was that controlled.
Speech/CI: We have our first non-cooing sounds! AJ said "AH" and "OW" (as in ow, I cut my finger) on Wednesday during his speech session at school. Since, we've heard both sounds A LOT. He was definitely playing with his voice today-just to hear himself "talk". He's also starting to move his mouth to imitate-or try imitating-your mouth movements. Its hard to explain. Its different, but at least we know its a good different!
We spend Black Friday afternoon at Urgent Care with AJ. Diagnosis: Double ear infections. He's been ripping his implant off, so this may have played a factor. Well, we know it did for a short time. Certain tones of voice, loud noises, or the dogs barking were really bothering him. Then he displayed the classic signs and we knew it was an ear infection.
He's still ripping off his implant. Its a behavior thing. He's getting a power trip from knowing if he pulls it off he gets something from it. Grrrrrr. It has decreased, so thats good. I think he only did it a few times today. Add this to the list of things we are keeping an eye on.
School: I never did write a separate post detailing AJ's IEP review meeting and parent/teacher conferences. Our IEP review meeting went well. One change was made to his IEP: AJ needs 1:1 instruction at all times. Best of all: His IEP allows him to attend Lowell until June of 2010. Ironically, Jeremy and I were thrilled with this news. We were a bit concerned we'd have to meet every quarter and have the same anxiety three more times. Other's didn't seem so excited. There is no "pass" that will just allow AJ to continue attending Lowell. Actually, there is. It's called MOVE TO WAUKESHA. At least four other kiddos and their families in the TC and AO programs at Lowell have moved to Waukesha from other school districts to make sure their child can attend this program. IT IS WELL WORTH IT.
Our parent teacher conference was helpful. AJ's school SLP, PT, and OT were kind enough to attend our conference with AJ's teacher. We left with many strategies/ideas/activities to help bridge AJ's learning at school to home. I had to pinch myself that night though. Am I really a Mom, going to my son's first parent teacher conference? I guess so.
AJ seems to be paying more attention to his peers. He's doing something new every day. Transitions from activity to activity have once again become difficult. We are working on strategies with the school team to make these transitions smoother again. I am so thankful his team at school is patient, kind, and understanding. Although it is hard to hear he had a bad day, it is reassuring to know that he is with a team that will wipe the slate clean and start anew the following day.
Feeding/Speech Therapy: We have another follow-up appointment next week at the GI Clinic. My stomach is already in knots. Not only just because its another weight check, but because he had ear infections, which caused a lack of regular appetite and liquid intake for a few days. I'm not going to lie, I am genuinely freaked out this time. We are waiting on the report to be written regarding the results and recommendations per his swallow study in early November. Once we receive an OK from insurance, we'll beginning feeding therapy again. Currently, I'm considering buying stock in Z-Vibe batteries.
Social/Emotional/Cognitive/Language: As I mentioned above, AJ is paying more attention to his peers. He knows what walking down the hall means at school-time to go to the doors and go outside to find Mommy. He made the connection between a soft-plush vibrating turtle and Daddy's XBOX-they both have a vibration so he put the turtle on top of the XBOX. He knows the auditory cue for "sit down". He has signed "eat", "please", and "bath" (approximation sign). He is playing with his voice. His memory skills improve daily. He knows both how to wash his hands at the sink and how to wipe his hands off on a wet towel. He holds his hands up for a dry towel when you tell him "all done" with washing hands. AJ's emotional responses have become different, with more variety. He understands the auditory cue "ah ah ahhhh^hhhh" (You know, when you reach for the hot stove and your Mom would say "ah ah ahhhh^hhhh"?? That.) That amazes me, as its not even a true "word" cue.
I'm sure there is more that I am missing. Let's face it, these days, my brain is a fuzzy blur. But I think thas enough paragraphs to supply the jist.
This time of year is always hard. It sort of hit me unexpectedly this time around though. AJ was diagnosed with bilateral profound hearing loss on 11/28/07 and cerebral palsy on 12/5/07. Two years ago, my Dad passed away shortly after that neurology appointment when we received the CP diagnosis. I found myself crying over cheeseburgers while driving AJ to school last week. You'd have to know my Dad to understand that last sentence. I wish my Dad was here to giggle at my perfectionism, tell me to keep things simple, and reassure me that everything was going to be OK. He was so good at that. That whole period in our lives is so vivid yet so out of focus. An intense blur. We all made it through, somehow, as I'm sure we'll make it through these anniversaries. Not much to celebrate per se, but certainly memorable moments in our lives.
Sunday, October 11, 2009
Relief
Well...we are officially a no-nap household. I'm not sure I expected it to happen this fast. Then again, AJ is almost 3 1/2. While it has made our days seem very, very long, it is a relief to put AJ to be at 7pm and know that he is going to sleep. No more busy-body activity in our bedroom before we go to sleep. We've had a few days here and there where he's fallen asleep in the early afternoon. On those days, we watch the length of time he naps very closely.
AJ going to bed early has given us a chance to unwind and can you believe this: talk. HA! Talking one-on-one without a 3 year old trying to spoon an entire bowl of pudding into his mouth is much more productive. It also helps that I'm not trying to stay awake late at night with toothpicks holding up my eyelids.
Here's a run down on the latest:
PT: After a big mix-up, we finally have 2 AFOs, not 1! They came in the mail (weird) and insert panic when I put them on...and they did not fit into his shoes. One phone call to his PT later, panic mode ceased. Bottom line, I need to put him in bigger shoes. They should actually help his balance even more (I was imagining him walking around in clown shoes). We'll try them for a few weeks and if it really isn't working, I'll have to take him back to his orthotist to have them trimmed. We don't want to trim too much, as they are molded a bit longer to allow for growth. We don't need to be getting him new AFOs every 6 months due to growth. This is the age where he "should" have a growth spurt, so we'll see. He also received his de-rotation straps. Ugh. They are going to be quite the challenge and I don't like them-AT ALL. That's all I'm going to say for now.
His PT hasn't seen him in a few weeks, (even though we've had PT with other staff at the clinic) so I was very pleased when she was so impressed with him last week. His left leg has been MEGA tight the last few weeks, and he was nice and loose for her. She complimented me on working it out. That felt good. I did mention his left foot is really tight, and she agreed. We are to continue our foot exercises and she added a new one that makes him giggle. Thank God he's ok with exercises, it would really suck if he wasn't. We need to watch his foot so that he does not become a toe walker. While we were just watching AJ walk around the other day, another Mom told me that all she sees is AJ-perhaps a bit unbalanced-but just AJ-and I see the foot turning in, the this, the that. It is true. While I'm not obsessive about it, I keep on top of it. AJ's team has trained us well. I knew God gave me the memory of an elephant for something....
OT: AJ received his left hand split two weeks ago. He tolerates it just fine. He'a already swirled it around the toilet water, so its nice and broken in. And washable, by the way. The splint is soft and keeps his thumb out. It also has a metal stint that keeps his left wrist from curving down. He's really at a point where we hemmed and hawed with his OT has to whether he'd need it by the time he got it, but it is helping. His wrist plays games with us. Some days it acts up, others it doesn't.
AJ continues to make gains in fine motor skills. He's been introduced to a swinging bolster at his therapy clinic. He's holding on to the rope and providing himself stability very well. He also painted with pudding with both his hands and feet last week.
GI: Jeremy and I want to rule out a tapeworm. Somehow, and don't ask me how, AJ was never tested for parasites by the GI Clinic. We know he was tested by our pediatrician when he came home (results: negative), but why the #($%*% didn't the GI Clinic test him? Anyhow, Jer's had his feelers out at work (sometimes it pays to work with lots and lots of doctors) which has revealed that not only should he have been tested, the test should have been repeated 3 times. Fantastic.
Needless to say, we have the collection kit and will get it to the lab this week. This kid is eating like a horse. Now, he may just be a super-burn-lots-of-calories-CP-kid. But we won't stop until we get a freakin' answer. My favorite part of this is when I called to inquire about testing for a tapeworm and was informed we didn't test for parasites period, I asked why, and received the response. "He doesn't have the symptoms." Well, my kid didn't seem to "display" symptoms of a child with CP or DEAF when he came home, now did he?! Don't give me the symptoms crap.
On the bright side, we went in for another terrifying weigh-in last week, AJ gained a full pound. This is great news! His height is the same 2'9". I haven't heard from his GI doctor yet as to when he wants to see him again. For now, we're safe.
Eyes: AJ had a follow-up appointment last week, with full dilation. He had a fantastic day. He was comfortable in the doctors office, in the room he walked around and explored. I've never seen him do that. He sat on my lap, responded to her "clicking" sounds she made with her mouth to direct his attention to her light. That activity just astounds me. I don't know why.
He did great in the waiting room while we were waiting for his eyes to dilate. He noticed the other kids. I observed sisters with their two kids while waiting, they were nice, but were starring at AJ like no tomorrow. Just ask me, I don't care. Ask me, I'll tell you. They left and another mom came in, with a son who had Down Syndrome...and had hearing aids. He was adorable. She was filling a large syringe with water and was administering it (g-tube) while he was on the rocking horse. We smiled at each other, encouraged our boys to say hello, and I just felt, at home. She didn't even see AJ's CI. But there was a comfort there that I wish I felt with those other parents. Hm.
AJ has never wanted to go into the toy corner. He always stays by the patio doors (condo building made into offices). I guided him toward the toys and he found the puzzles right away. We sat on the floor and played with the puzzles and then with the rocking horse...on which he discovered he could rock himself back and forth. When he was done, it was our turn, and he again was a champ for his eye doctor.
He needs glasses. Its only a small perscription due to his astigmatism, but its mostly to help him focus. Hopefully this week I'll get over to Jer's work to order those. AJ's been picking up the most tiny things off the floor. How that's not focusing, I don't know.
CI: We had AJ's 6-month post activation audiogram last week. He tested at 25db. Which totally floored me. My deaf son, who heard at 110db+, can now hear ABOVE the speech banana. Amazing. AJ sat like a big boy in my lap (which he's never done) and tested really well. We've had AJ wearing the BTE (behind-the-ear) set-up for about two weeks, thanks to Peas' Mom encouraging me to take that leap. We love it and AJ's audiologist was also very excited with this change. He's making continued progress and even had 6-8 more gains on this checklist we complete at each visit. The next step is to get AJ vocalizing more. More and differently. Let's see some consonant and vowel sounds, lets do some ma-ma-ma, let's use our voice when we want something, let's respond physically to music. Those sorts of things.
AJ's eye contact/eye gaze continues to improve as well. This is a major gain. While at his appointment, we also had the pleasure of meeting the new audiologist that joined our CI program. She was very pleased with AJ's gains in just 6 months. She also told us that Lowell's program is one of the best in the country. For Tammy and Tina, she compared it to River School. YAY!!!
On a very sad note, we found out AJ's ENT/CI Surgeon is leaving. I can't even tell you how this upsets me. He will be missed, but we are in good hands from here on out. Portland, Oregon: You better appreciate this great man!
Feeding: AJ's struggling with his head position during eating. Per suggestion of his SLP at CHW, we are doing a swallow study to "rule things out." We all think his action is a compensatory strategy AJ's uses to help gravity aid his food going down. But, we want to be sure. Basically, he gets to eat in the x-ray room in a special box-like chair. We need to put barium (unflavored) on his food and they will take pictures while he eats. The swallow study may help us gain more PA (prior-authorizations) from insurance to allow more feeding therapy. Even if we only check in once a month, I think it will make the whole team (us, CHW, and his school) feel more comfortable. He has made great strides with chewing his food though!
CP: After his eye exam, I took AJ to have his baseline x-rays done. The CP doctor (filling in for his regular doctor) we saw in July ordered them. Kids with CP are are risk for scoliosis, as well as many other things. Now that AJ is 3, they wanted to take baseline x-rays of his back and pelvis to have a starting point to refer back to as his grows. I was very leary as to how he would do. He did FANTASTIC. Seriously, fantastic. Another example of how he's really tuning into his world. He did have his CI off, which amazed me even more. I have no worries about the swallow study being done. He did so well with the baseline, and for the next one he gets to eat? Easy. We have not received the results of the baseline x-rays yet.
School: The representative from our home school district did come and observe AJ and the program as a whole last Thursday. I guess it went well, as she stayed over an hour and I received a message later in the day saying what a great program Lowell has and that we'll meet again in November. A bit of relief there.
AJ continues to do incredibly well in school. He did have one rough day last week where he came out screaming bloody murder (and none of us know what that was about). Overall, he is just amazing us. It is THE COOLEST thing on the planet to have him come home and JUST DO A SKILL. Like, hey, no problem. And he does it with this look, like "Whats next Mom/Dad." Too funny. AJ's teacher and I do a lot of emailing back and forth. We are so grateful that she takes the time to care about all of AJ's needs.
House: Jeremy and I have never been good at asking for help. When AJ came...and then his issues were surfaced...we got even worse. To be honest, I think a lot of that came from people's reactions to AJ's special needs and the "let me know if you need anything" generic comment that never turns into anything because their own lives continue, they forget, or don't have time. While we certainly didn't expect, we were let down. I think too that we ended up building a wall, since we got so used to not being able to depend on others. I may sound judgemental, and for right now, I'm ok with that. There was a time I had no sympathy for the normal/typical/average Mom who complained about everything that had to do with their normal child. I had no sympathy for someone who wasn't running their child around town to doctors appointments and therapists. I've gotten much better, although there is always room for improvement. Bottomline: We learned to deal. Just the facts jack.
Very kind friends of ours have offered their help with helping us get the house ready. I cried when I read their email. It was the answer to a prayer I had been repeating for a long time. Relief. I've started on all those to-do lists, and hopefully, we'll start to see some progress. To our friends, you know who you are...thank you.
So, tonight, I'm feeling a bit of relief. It's a nice change of pace.
AJ going to bed early has given us a chance to unwind and can you believe this: talk. HA! Talking one-on-one without a 3 year old trying to spoon an entire bowl of pudding into his mouth is much more productive. It also helps that I'm not trying to stay awake late at night with toothpicks holding up my eyelids.
Here's a run down on the latest:
PT: After a big mix-up, we finally have 2 AFOs, not 1! They came in the mail (weird) and insert panic when I put them on...and they did not fit into his shoes. One phone call to his PT later, panic mode ceased. Bottom line, I need to put him in bigger shoes. They should actually help his balance even more (I was imagining him walking around in clown shoes). We'll try them for a few weeks and if it really isn't working, I'll have to take him back to his orthotist to have them trimmed. We don't want to trim too much, as they are molded a bit longer to allow for growth. We don't need to be getting him new AFOs every 6 months due to growth. This is the age where he "should" have a growth spurt, so we'll see. He also received his de-rotation straps. Ugh. They are going to be quite the challenge and I don't like them-AT ALL. That's all I'm going to say for now.
His PT hasn't seen him in a few weeks, (even though we've had PT with other staff at the clinic) so I was very pleased when she was so impressed with him last week. His left leg has been MEGA tight the last few weeks, and he was nice and loose for her. She complimented me on working it out. That felt good. I did mention his left foot is really tight, and she agreed. We are to continue our foot exercises and she added a new one that makes him giggle. Thank God he's ok with exercises, it would really suck if he wasn't. We need to watch his foot so that he does not become a toe walker. While we were just watching AJ walk around the other day, another Mom told me that all she sees is AJ-perhaps a bit unbalanced-but just AJ-and I see the foot turning in, the this, the that. It is true. While I'm not obsessive about it, I keep on top of it. AJ's team has trained us well. I knew God gave me the memory of an elephant for something....
OT: AJ received his left hand split two weeks ago. He tolerates it just fine. He'a already swirled it around the toilet water, so its nice and broken in. And washable, by the way. The splint is soft and keeps his thumb out. It also has a metal stint that keeps his left wrist from curving down. He's really at a point where we hemmed and hawed with his OT has to whether he'd need it by the time he got it, but it is helping. His wrist plays games with us. Some days it acts up, others it doesn't.
AJ continues to make gains in fine motor skills. He's been introduced to a swinging bolster at his therapy clinic. He's holding on to the rope and providing himself stability very well. He also painted with pudding with both his hands and feet last week.
GI: Jeremy and I want to rule out a tapeworm. Somehow, and don't ask me how, AJ was never tested for parasites by the GI Clinic. We know he was tested by our pediatrician when he came home (results: negative), but why the #($%*% didn't the GI Clinic test him? Anyhow, Jer's had his feelers out at work (sometimes it pays to work with lots and lots of doctors) which has revealed that not only should he have been tested, the test should have been repeated 3 times. Fantastic.
Needless to say, we have the collection kit and will get it to the lab this week. This kid is eating like a horse. Now, he may just be a super-burn-lots-of-calories-CP-kid. But we won't stop until we get a freakin' answer. My favorite part of this is when I called to inquire about testing for a tapeworm and was informed we didn't test for parasites period, I asked why, and received the response. "He doesn't have the symptoms." Well, my kid didn't seem to "display" symptoms of a child with CP or DEAF when he came home, now did he?! Don't give me the symptoms crap.
On the bright side, we went in for another terrifying weigh-in last week, AJ gained a full pound. This is great news! His height is the same 2'9". I haven't heard from his GI doctor yet as to when he wants to see him again. For now, we're safe.
Eyes: AJ had a follow-up appointment last week, with full dilation. He had a fantastic day. He was comfortable in the doctors office, in the room he walked around and explored. I've never seen him do that. He sat on my lap, responded to her "clicking" sounds she made with her mouth to direct his attention to her light. That activity just astounds me. I don't know why.
He did great in the waiting room while we were waiting for his eyes to dilate. He noticed the other kids. I observed sisters with their two kids while waiting, they were nice, but were starring at AJ like no tomorrow. Just ask me, I don't care. Ask me, I'll tell you. They left and another mom came in, with a son who had Down Syndrome...and had hearing aids. He was adorable. She was filling a large syringe with water and was administering it (g-tube) while he was on the rocking horse. We smiled at each other, encouraged our boys to say hello, and I just felt, at home. She didn't even see AJ's CI. But there was a comfort there that I wish I felt with those other parents. Hm.
AJ has never wanted to go into the toy corner. He always stays by the patio doors (condo building made into offices). I guided him toward the toys and he found the puzzles right away. We sat on the floor and played with the puzzles and then with the rocking horse...on which he discovered he could rock himself back and forth. When he was done, it was our turn, and he again was a champ for his eye doctor.
He needs glasses. Its only a small perscription due to his astigmatism, but its mostly to help him focus. Hopefully this week I'll get over to Jer's work to order those. AJ's been picking up the most tiny things off the floor. How that's not focusing, I don't know.
CI: We had AJ's 6-month post activation audiogram last week. He tested at 25db. Which totally floored me. My deaf son, who heard at 110db+, can now hear ABOVE the speech banana. Amazing. AJ sat like a big boy in my lap (which he's never done) and tested really well. We've had AJ wearing the BTE (behind-the-ear) set-up for about two weeks, thanks to Peas' Mom encouraging me to take that leap. We love it and AJ's audiologist was also very excited with this change. He's making continued progress and even had 6-8 more gains on this checklist we complete at each visit. The next step is to get AJ vocalizing more. More and differently. Let's see some consonant and vowel sounds, lets do some ma-ma-ma, let's use our voice when we want something, let's respond physically to music. Those sorts of things.
AJ's eye contact/eye gaze continues to improve as well. This is a major gain. While at his appointment, we also had the pleasure of meeting the new audiologist that joined our CI program. She was very pleased with AJ's gains in just 6 months. She also told us that Lowell's program is one of the best in the country. For Tammy and Tina, she compared it to River School. YAY!!!
On a very sad note, we found out AJ's ENT/CI Surgeon is leaving. I can't even tell you how this upsets me. He will be missed, but we are in good hands from here on out. Portland, Oregon: You better appreciate this great man!
Feeding: AJ's struggling with his head position during eating. Per suggestion of his SLP at CHW, we are doing a swallow study to "rule things out." We all think his action is a compensatory strategy AJ's uses to help gravity aid his food going down. But, we want to be sure. Basically, he gets to eat in the x-ray room in a special box-like chair. We need to put barium (unflavored) on his food and they will take pictures while he eats. The swallow study may help us gain more PA (prior-authorizations) from insurance to allow more feeding therapy. Even if we only check in once a month, I think it will make the whole team (us, CHW, and his school) feel more comfortable. He has made great strides with chewing his food though!
CP: After his eye exam, I took AJ to have his baseline x-rays done. The CP doctor (filling in for his regular doctor) we saw in July ordered them. Kids with CP are are risk for scoliosis, as well as many other things. Now that AJ is 3, they wanted to take baseline x-rays of his back and pelvis to have a starting point to refer back to as his grows. I was very leary as to how he would do. He did FANTASTIC. Seriously, fantastic. Another example of how he's really tuning into his world. He did have his CI off, which amazed me even more. I have no worries about the swallow study being done. He did so well with the baseline, and for the next one he gets to eat? Easy. We have not received the results of the baseline x-rays yet.
School: The representative from our home school district did come and observe AJ and the program as a whole last Thursday. I guess it went well, as she stayed over an hour and I received a message later in the day saying what a great program Lowell has and that we'll meet again in November. A bit of relief there.
AJ continues to do incredibly well in school. He did have one rough day last week where he came out screaming bloody murder (and none of us know what that was about). Overall, he is just amazing us. It is THE COOLEST thing on the planet to have him come home and JUST DO A SKILL. Like, hey, no problem. And he does it with this look, like "Whats next Mom/Dad." Too funny. AJ's teacher and I do a lot of emailing back and forth. We are so grateful that she takes the time to care about all of AJ's needs.
House: Jeremy and I have never been good at asking for help. When AJ came...and then his issues were surfaced...we got even worse. To be honest, I think a lot of that came from people's reactions to AJ's special needs and the "let me know if you need anything" generic comment that never turns into anything because their own lives continue, they forget, or don't have time. While we certainly didn't expect, we were let down. I think too that we ended up building a wall, since we got so used to not being able to depend on others. I may sound judgemental, and for right now, I'm ok with that. There was a time I had no sympathy for the normal/typical/average Mom who complained about everything that had to do with their normal child. I had no sympathy for someone who wasn't running their child around town to doctors appointments and therapists. I've gotten much better, although there is always room for improvement. Bottomline: We learned to deal. Just the facts jack.
Very kind friends of ours have offered their help with helping us get the house ready. I cried when I read their email. It was the answer to a prayer I had been repeating for a long time. Relief. I've started on all those to-do lists, and hopefully, we'll start to see some progress. To our friends, you know who you are...thank you.
So, tonight, I'm feeling a bit of relief. It's a nice change of pace.
Saturday, September 26, 2009
An Unexpected Goodbye
About 2 weeks ago we said goodbye to AJ's SLP (Speech Language Pathologist). It was a rather unexpected, as we thought we would continue seeing her until mid-October.
When AJ's CI was activated, we began focusing on auditory/speech/language, checking in on his feeding skills here and there. He seemed to be doing just fine. We knew we would not continue with speech/feeding at CHW once AJ began school, as he receives speech during his school day, and heaven forbid we commit "duplication of services". Since we had visits covered for after AJ began school, his SLP tapped into his feeding therapy a bit more. That way, we could finish our covered visits and not waste them. It sort of reminds me of that roll-over minutes commercial with the Mom and Son. Cracks me up everytime I watch it.
During our last session, I found myself doing a lot of reflection. He was happy as a lark sitting and eating his peaches while I was remembering how long it used to take him to get used to the room, how we'd have to tag-team him to do therapy on the yoga ball, how he wouldn't let her touch his mouth...the list goes on and on. There he sat giving her fantastic eye contact, asking for more by signing the word multiples times, eating with a spoon, drinking from his cup. He has come a long way from when we started therapy. From not being able to hold his own bottle, having major oral sensory issues, not being able to hear or communicate, to this smiley little boy who charms his SLP to no end, who walks rapidly down the hall to "the door" where she comes out and gets upset if the door opens and she's not there yet, letting her in his mouth, who bit into and chewed a cookie for her, to sitting at the table for the entire session and doing activities, who tapped her hand for attention or something he wanted, to turning to her when she does the Ling sounds. It has been quite the journey.
So from here, Mommy becomes his feeding therapist. We can always return if we have an issue that comes up. We will still see Dione every few months, since she assists with his CI mappings!! Below are some pictures, unfortunately a lot of my good shots were taken with my previous cell phone, which blacked out a few months ago...meaning I lost them all. So, you may see just part of Dione in some of them.
Thank you Dione for everything you've done for our little man! We'll see you soon!!
CI Candidacy Testing-September 2008
Getting ready to HEAR for the first time- CI Activation April 2009
AJ looking up at Dione during CI Activation (I love this picture!)
Koss Cochlear Implant Program Picnic-July 2009
Playing with his all-time favorite toy at his last speech session
AJ and Dione during his last speech session-September 2009
When AJ's CI was activated, we began focusing on auditory/speech/language, checking in on his feeding skills here and there. He seemed to be doing just fine. We knew we would not continue with speech/feeding at CHW once AJ began school, as he receives speech during his school day, and heaven forbid we commit "duplication of services". Since we had visits covered for after AJ began school, his SLP tapped into his feeding therapy a bit more. That way, we could finish our covered visits and not waste them. It sort of reminds me of that roll-over minutes commercial with the Mom and Son. Cracks me up everytime I watch it.
During our last session, I found myself doing a lot of reflection. He was happy as a lark sitting and eating his peaches while I was remembering how long it used to take him to get used to the room, how we'd have to tag-team him to do therapy on the yoga ball, how he wouldn't let her touch his mouth...the list goes on and on. There he sat giving her fantastic eye contact, asking for more by signing the word multiples times, eating with a spoon, drinking from his cup. He has come a long way from when we started therapy. From not being able to hold his own bottle, having major oral sensory issues, not being able to hear or communicate, to this smiley little boy who charms his SLP to no end, who walks rapidly down the hall to "the door" where she comes out and gets upset if the door opens and she's not there yet, letting her in his mouth, who bit into and chewed a cookie for her, to sitting at the table for the entire session and doing activities, who tapped her hand for attention or something he wanted, to turning to her when she does the Ling sounds. It has been quite the journey.
So from here, Mommy becomes his feeding therapist. We can always return if we have an issue that comes up. We will still see Dione every few months, since she assists with his CI mappings!! Below are some pictures, unfortunately a lot of my good shots were taken with my previous cell phone, which blacked out a few months ago...meaning I lost them all. So, you may see just part of Dione in some of them.
Thank you Dione for everything you've done for our little man! We'll see you soon!!
CI Candidacy Testing-September 2008
Getting ready to HEAR for the first time- CI Activation April 2009
AJ looking up at Dione during CI Activation (I love this picture!)
Koss Cochlear Implant Program Picnic-July 2009
Playing with his all-time favorite toy at his last speech session
AJ and Dione during his last speech session-September 2009
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