Christmas 2009

We had a very busy Christmas this year. We hosted Christmas for Jer's family the week before Christmas. We had a great meal and enjoyed each other's company. Jer arranged for Santa to stop at our house that night. Did you know Santa is very tactile friendly? Well, sure. He's got white gloves, a shiny & smooth belt, a RED soft suit, with lots of fur on the cuffs. AJ did very well with Santa. There were a few moments where I swear I was inside a picture book. AJ reached out to Santa with such wonder and imagination, just like little kids are supposed to. Seeing Christmas through a child's eyes is nothing short of awesome.














We are so very glad Santa was able to stop at our house a few days early. The week of Christmas AJ missed his last days of school...which included Breakfast with Santa. AJ got sick with the flu on Monday just before his teacher came for our home visit. I felt sick that morning, but thought it was just stress/anxiety. Nope, it was the flu. AJ recovered the fastest. I was sick until Wednesday. Thank Goodness for my Mom and Jer as I was not moving anywhere other than my bed!

On Christmas Eve we traveled to Caledonia to celebrate with my extended family. Each year, the kids (there are now 11) get older, taller... and I end up feeling ancient. AJ ate a full meal of pierogis and grapes. Yum. The weather was warm (30's) and it was raining. Odd weather for Christmas Eve. The whole way home I was praying the temperature would stay up and that the country roads would not freeze. We made it home just in time to put out cookies & milk for Santa and change into our Christmas PJs. I have a thing for cute Christmas PJs. Safe to say this will be a tradition in the Schmidt House.





I was the first to wake up on Christmas Morning...to find my husband passed out on the couch. Guess who got the flu? We like to share in this family, you know? AJ woke up and found Santa's trail of sparkles right away. He opened up his presents rather well. You could see the wheels turning as he contemplated how to open the packages. He even ripped and tore the paper! He was also thrilled to play with the red sparkles Santa left. Santa could have left that and that alone and I'm sure AJ still would've had fun. He was actually interested in the gifts this year, which was very exciting.













We welcomed my family that afternoon. Again, we enjoyed a great meal and enjoyed each others company. Despite being very tired, my Grandma was here for Christmas, which was very special to me. The joy AJ gives her brings me such joy. Did I happen to mention she totally drank me under the table?!!













This was the second holiday (Thanksgiving was the first) I/We did not think about AJ's hearing loss. Which was amazing and scary at the same time. When Santa was here I did not think about jingle bells or the sound of his "Ho Ho Ho". I didn't worry about any toys being "useless" because they made sound. I.just.didn't.think.about.it. Imagine.That.

I do wish I had put two and two together though as to why he had some rough moments during our celebrations. On Christmas Eve he woke up from sleeping on Daddy's shoulder. Someone put his coil on right away in the middle of kids screaming and opening gifts. I cringed when I saw his little face and wished I had been more attentive. He had a few other moments of being overwhelmed, along with some pain from teething. Overall, he did very well. It was just "odd" that his hearing loss did not dominate the holiday. It was a welcomed change of pace.

We hope all of you enjoyed your Holidays!

AJ's 1st Snow Day

AJ had his first snow day in the beginning of December. It was also the first time he's been out to play in the snow. He's finally to the point where he can move his body successfully and has the trunk control to sit and get up from the snow. He really enjoyed being pulled on the snow disc. Talk about great trunk control! He didn't fall off once and was at a 45 degree angle (at the least) the whole time! He did decide that snow does not belong on his mittens. He was a bit offended when he stuck his hands in the snow and they came out white! We had a blast!









(Apparently there was paparazzi around for this last shot and I didn't know it-AJ didn't want them to see his face)

A Whole Lotta Lotta

PT/OT: Two weeks ago we began using constraint therapy with AJ. He basically wears an aircast on his right arm (his good arm) to immobilize it so that he's forced to use his left hand.
It works really well and I have to say he tolerates it much better than expected. The clinic needs the device back, so we are looking into purchasing one of our own.

We also borrowed these walking/balancing wedges. I love them and so want to order these as well. It's all about the balance.

AJ attempted to kick a ball and roll a ball toward me during a therapy session a few weeks ago, his PT was thrilled. He has increased his "proper" use of a paintbrush...its no longer going straight to the mouth when he gets it in his hands. His fine motor skills are definitely improving, including the isolated use of his pointer finger. He can push the button on this book he has which has a car horn on the front. At first he would isolate his middle finger, but after a few times of redirection to the correct finger, he's got it.

We made the executive decision that we need to give AJ sensory experiences with non-edible items. He's at the age now where he shouldn't be playing with his food, and he doesn't quite understand that you should eat a cup of pudding at snack time, when yesterday he painted with it. Make sense? He has a habit of trying to eat paint too, so we have decided its time to establish a distinct difference between edible and non-edibles for AJ. ie = Instead of pudding, well stick with shaving cream or even lotion.

He's also been walking on the treadmill during therapy, which cracks me up. He loves it. Each time we go he walks a little longer and they increase his speed a bit. We are working up towards running.

We are beginning to set funds aside for AJ to participate in the intensive therapy sessions offered by Partners for Progress in the summer/fall of 2010. He has already been treated by one of the therapists who founded this organization. She's well-known and it gives me chills to think she'll be working with him again (she's treated him twice already). The sessions are about $3,000 and not covered by insurance.

GI: We survived his most recent GI appointment. The good news is that he gained weight, 6 ounces in just two months. He is now 22 lbs 7oz with a lenth of 2'8" (height did not change). He's gaining an average of 20g/day and taking in an estimated 1400-1500 calories per day. He is 95% of his ideal weight/height, which is astounding as last time we were there he was 86% and still considered malnutritioned (92% and above is ok). The GREAT news is that his Gastroenterologist was THRILLED. He asked what has changed that he is doing so well, I didn't have a clue. We are keep doing what we're doing and don't have to go back for 4 months.

Development: In early December AJ had a follow-up at the Child Development Center at CHW. They have moved to a new off-campus location, which is really very nice. AJ's development specialist has not seen him since April 2008. Our visit began with me explaining basically what AJ can do and what he's not doing. Both myself and AJ's teacher filled out similiar evaluations of AJ, which were scored during our appointment. We both answered very similiarily. AJ tested at a normal level for socio-emotional for a 3 1/2 year old. I found this hard to believe, but there it was, in black and white in front of my face. A cute little chart. He was above the norm for the "Withdrawn" catagory, on both of our evaluations. This is no surprise. He told us to keep an eye on it.

We then moved onto the physical exam, which was rather interesting. He did the reflex test and I was able to see the difference in how AJ's legs/feet reacted. One foot curled down, one foot curled up. And then he said IT. "I think something else is going on here, but I don't know what. You son is moving on a slow train. He's not making gains as fast as he should. Hemiplegia is not common with prematurity. Kids with hemiplegia usually do well mentally. He might of had something in the womb, a stroke, something vascular. Let me look at his MRI results (from 2008). Ah yes, the just the standard periventricular white matter statement. I want to do the chromosomal testing. Lets see if there is something else causing his delay."

I think I was literally numb as these words came spewing out of his mouth. I quickly reminded him of AJ's adoption, stating the testing can only go as far as AJ. Its not like his birth parents are around the corner and we can just call and ask them to come in for testing. When I brought up the fact AJ had 13 months of nothing in Guatemala and the fact that his hearing loss was identified late, he literally, blew it off. And then said, I don't mean to be stereotypical, but deaf kids are typically smarter than you think.

At that point, I should have rubbed that grain of salt in my hand and left. He requested we see AJ's psychologist again. We saw Dr. Bob as part of AJ's cochlear implant evaluation process. Since AJ will be 1 year post-implant in April, I asked if we could see him them, and kill two birds with one stone. He agreed. The chromo tests are ridiculously expensive. He did submit to insurance for them to be done last year, but it was denied. Hopefully, this time it will be approved. They cost thousands of dollars, so its not like we'll be paying out of pocket for them. We left, with me feeling sort of dazed and confused. It was a bit of a blurry ride home, if you know what I mean.

I put a call in to AJ's teacher, as I knew she was anxious to hear what the development specialist had said. We had a long conversation that calmed my heart. Jer and I talked about it. A few days later I had another conversation with AJ's PT. And the jist is this. Specialists don't know everything. We know AJ's delay has continued. Its not like we didn't notice that he plateaued quite a bit after his first year home. We're not oblivious here, buddy. This guy has seen AJ three times since we brought him home. He's doing his job, but honestly, it sounded like he was having a conversation in his head and just happened to verbalize it. AJ doesn't fit into a box or mold. If there is a disorder or syndrome, it really won't change anything, in our eyes at least. That doesn't mean his words didn't sting like hell, because trust me, they did. File that one into moments in my life when I've been sucker-punched. We're taking what he said with a grain of salt, ok more like a mound of salt, and moving forward.

I have yet to hear back if insurance approved the chromo testing. This is one of those situations where I wish we were AJ's biological parents. We'd have the testing done too, in a heartbeat, if we could. It angers me that I can't give AJ the answers he deserves.

CI: AJ has decreased the "ripping-off" of the implant", which is nothing short of exciting. We switched to the rechargable batteries a few weeks ago and are LOVING them. His replacement coil came in, so I'm relieved to have a back-up once again. I'm also thrilled to report that I have found wig/toupee tape at Sally's Beauty Supply. It really sucks when you run out of that stuff and you run to 4 different stores to find it. We've also noticed a different "whine" come from AJ and him knocking his ear when his CI battery goes dead. Interesting, hey? I think he's trying to tell us its not working anymore. He definitely knows the difference between it being "off" his head completely, and when its on, and not working. Hm...

School/Communication/Speech: AJ is continuing to do well in school. I can't believe first semester is already over. His teacher came for our monthly home visit last week. AJ is making gains in every area, EXCEPT communication. He is making gains auditorily, like crazy. But not in communication. This is no mystery to any of us. But we are really focusing in on how to give him ways to increase his communication skills. His teacher has found a specifis curriculum she would like to try with AJ. We are all for it. It begins with a video assessment, so I am super excited to see what this is all about. We also determined that AJ is a highly-structured learner. There are natural, structured, and highly-structured learners. Again, this is not news, it just helps to establish this fact and move forward.

It is very scary that AJ is not communicating well. He's 8 months-post-activation. He should be communicating better than he is. This is FACT. I keep thinking about the 1 year mark of post-activation and how its supposed to be "magic". I'm not feeling anywhere close to magic and I break down in tears while reading other CI kiddos blogs. Its only natural to compare your kids to other kids. I stopped comparing AJ to normal kiddos, but though there was some commoradory with CI parents and kiddos. The fact remains, AJ is still different. His history, his past, his other disabilites sort of exclude him from this world too. At first I was frustrated with our CI team in saying AJ's not making enough progress for a 2nd CI, but perhaps there is some truth in the fact that he's not making the progress we thought he would. I'm not saying I agree totally, I'm just saying that I need to take off my Mom glasses for a moment and put on the reality glasses. I do not agree that it is a reason to hold AJ back from getting another CI. I refuse to wallow in it, but I am human and need moments in life to grieve, process, and move forward. I can't skip any of those steps any longer.

I'm considering having AJ in speech therapy, maybe even AV therapy outside of school. We need to give him every opportunity we can. In the mean time, we are doing our best to remember to give him choices throughout his day to help encourage communication.

I am proud to report that AJ had a GOLD STAR day at school the week before last. It was amazing to hear his teacher come out and say that. Of course, it was a Thursday. His last day of school for the week. He's paying more attention to his peers, his eye contact continues to improve, and he understood the concept of pulling his peer in a laundry basket AKA Santa's sleigh the other day. What thrills me the most, is that AJ's progress has now given him the opportunity to spend more time with his peers. This thrills us to no end.

Feeding: We received the report from AJ's swallow study in November, but have yet to 1) hear back from insurance for approval of feeding therapy sessions 2) have feeding therapy sessions. I'm a bit frustrated. Also, it looks like he'll be working with someone new, not his former SLP we had for almost two years. Fantastic.

AJ is no longer drinking out of a sippy cup. He drinks from an open cup, and can sip out of two different sized straws. He's also able to hold a juice box and sip without squeezing it.

Keeping it All Straight: I've decided to get a gimundo white erase board for our hallway. I'm thinking one of these which is 4x8.I've been writing AJ's goals/things we are working on in each "category" (much like a write these mass updates) on a small 18x24 white erase board. Its just not cutting it anymore. My mind is filled with ideas, strategies, and so much more when it related to AJ's needs. I need a place to put it all...in one place and out of my head. I did consider using that fun chalkboard paint on the wall, but then decided against it seeing as 1) I just painted the hallway this summer, complete with a textured primer that would not make for a smooth surface to write in chalk on, and 2) it would be really messy. I'm sure when we go to sell the house, the new buyers will be thrilled with a white board in the hallway. Too bad, so sad. They won't have to look at it for long, as it will be going with us.

I'm also in the process of reorganizing AJ's binders. I currently have a binder for each of the following: AJ Medica, Center for the Deaf & HOH, Medicaid/T19, United Cerebral Palsy, CI Training/Listening & Speech, Birth to 3 (now an archive), and IEP/School, and Preschool. They are each a different color, with color-coordinating labels. That was the best idea I think I've ever had. I know exactly where things are this way.

Now that Santa has made his annual visit, multiple times, the need for a therapy/play room for AJ has never been more obvious. I've decided that I don't care what type of house we find in Waukesha, as long as it has a large family room, living room, or finished basement that can be used as AJ's space. I never imagined with one child that we would outgrow this house. His needs have outgrown this house. If Muskego had a program like Lowell, we'd finish part of our basement and it wouldn't be an issue. But they don't.

I don't care if this room in our new house has dark wood paneling and bring orange shag carpet. We've already decided we are looking for something that needs some TLC. Molding and doors are paintable, windows are replacable, paint color and wallpaper is not an issue. We know where the Habitat for Humanity store, Menards, and Home Depot are.

We're still working on getting things done around here. Keep staring at that to-do list. The recent events with AJ and the holidays sort of put another kink in our plans. But I guess thats what happens, right? Life is what happens when your busy making other plans...

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.

Belated Thanks

We hosted Thanksgiving Dinner twice this year. Once on Thursday for my family-then-again on Saturday for Jer's family. No, I am not insane. I actually enjoy hosting Holidays. Both dinners went fabulously well, even though I once again proved that mashed potatoes and I don't do well on Turkey Day. Don't ask me why. Any other time of the year, SURE.

I don't know what it is about the modern world.

(Do you sense a soapbox comment coming?)

What is it that makes us think we never have enough? That whole premise has been getting under my skin lately. I actually like that Allstate commercial, where they talk about how we've all realized whats really important. Well, I'm one of those people (and its not due to their genius marketing).

I am thankful for our home, the space for our mammoth dogs to run, and the challenge of homeownership.

I am thankful for my son's incredible team. You know that saying "It takes a village to raise a child"? In our case, it does. These ladies have been instrumental to AJ's success. Not only have they helped AJ, they've helped us by giving us the tools to add to AJ's success.

I am thankful for maturity. With maturity comes a boost in self-confidence and knowledge of one's self. Appreciation for things handed down and other cherished momentos. The understanding of sacrifice. Realizing you truly do have enough that if a sacrifice is needed, you can survive it, comfortably. Maturity brings solid ground.

I am thankful for my loving husband. Who loves me for me despite my recent bad mood spells, lack of interest in cooking during the week, and my new obsession with Twilight. Who makes me laugh every day. Who's passion for his work inspires his patients, co-workers, colleagues in his profession, and his wife. Who works tirelessly to provide for the three of us. I love you.

I am thankful for the laughter in my life. The "laugh so hard I almost pee'd my pants" moments. The laughter that makes my tummy sore. My son's infectious giggle can make me laugh on the worst of days.

I am thankful for the incredible smile and giggle my son gives me when I walk into his room in the morning. As if my heart wasn't mush already when it comes to my sweet boy.

I am thankful I am able to witness my own son bring joy to others. His spirit illuminates those around him. It is truly incredible. I am beyond thankful I am his Mom.
I am thankful for friendships, old and new. For coffee chats, calls/texts I get making sure I'm "ok", and one too many 'ritas.

I am thankful for the invention of the cochlear implant. I am thankful my son heard his Daddy carving the turkey on Thanksgiving. I am thankful my son calms to my voice. I am thankful my son lit up like the Christmas tree when he heard his Dad's voice last night when he came home from a business trip. I am thankful my son said his first vowel sound this week. I am thankful for all that my son's CI has given him.
I am thankful for my own Mom, who is the strongest person I know. She always listens and is always there to tell me things will be "OK" when my fear or doubts kick in. Thanks, Mom. Love you!

I am thankful I have the skills to host a Holiday. That over the years I watched, listened, asked questions, and wrote down recipes that meant something to both our families. I am thankful for traditions, both old and new. I am thankful for memories.


Happy Belated Thanksgiving!

Trusting the Blind Side

Jeremy and I went to see the movie The Blind Side, starring Sandra Bullock and Tim McGraw, this afternoon.

GO.SEE.IT.

It is truly an amazing story of adoption. I did just fine until the end where they show photos and a video of the boy/man/family the movie is based on. Then I bawled. I knew the movie was based on a true story, but to see the "real family" who took this lost boy in...brought on emotionals that ripped through me like a tidal wave.

On the ride home both of us were fairly quiet, except to say that the movie was outstanding. A few moments later we began a conversation in which I asked him this question, "If someone were to ask you what exactly was wrong with our situation, what would you say...in simple terms."

His answer, "We were LIED to."

My thoughts exactly.

Hindsight is said to be 20/20, right? I'm not so sure it is. I don't know what ratio I'd make hindsight at this point in my life. One of the hardest things about our adoption has been our grieving. We are still grieving the life we were "prepared for" with an adopted child. I think this comes from being surrounded by so much "normal". Does that make sense? Our story is so different. There is no 1-800-ADOPTED-CP-DEAF-DIDN'T KNOW hotline. Sometimes, we crave normalcy. We were"prepared" by all of the information we were given about AJ by both our agency and the orphange. "Prepared" to bring home a 13-month-old who need a little therapy and lots of love who would be just fine.

Adoption is different from a pregnancy in that you are given, I'm sorry, supposed to be given all information on your child's history. Of course in some situations this is not applicable, but in AJ's, it most certainly WAS. Professionals lied to us. Licensed facilities thought our simple worries were "silly and normal for "new parents". When another professional agency tells you that this was NOT RIGHT, it sinks in.

We are leary of trusting the world of adoption again. And for that matter, would another agency even take us on with fear of us accusing them of the same thing even before we got started. You just never know what they'll think of us. And at this point, I would say rightfully so. Our trust has been broken. We are angry for the loss of time we could of had petitioning for an expedited VISA to get him home sooner on medical necessity, for the early intervention he might have received earlier, researching, establishing physicians and other resources, and beginning to grieve that life we had prepared for. We packed for Italy, and crashed in Holland. This was not supposed to happen. We were at least supposed to know. He was in your care for 13 months and you didn't know?! We are smart enough to answer that question with the correct answer.

What happened to us is RARE. What happened to us was WRONG. What happened to us will never go AWAY.

But out of that wrong, came something so beautiful I have no words to describe it. We have a son, whom we love, no matter what. I am thankful every day he is here with us. I remember what it was like to walk into his room and cry for hours with the blanket we last held him in on a visit to Guatemala. Now he's here. His path is bumpy. Scary. Unpredictable. Tiring. Amazing. But he's here defying the odds.

I think we did a good job (I'll use that term loosely) moving forward when everything happened. We made a choice. We could either drown in it, or move forward and do whatever we could for our son. We chose to move forward. But that doesn't mean we've forgotten. When someone new learns of AJ's story, we are reminded of what happened by the simple words we always end up saying "We didn't know." Unless someone has walked in our shoes in this very situation, it is not understood.

We will be very slow to trust another agency. I won't lie. But, this movie reminded us of how powerful love can be and the positive things that come from such love. We know where AJ would be right now if he wasn't here with us, which horrifies me to no end. I'm turning my blind side to that thought and enjoying my son's giggle as he and Daddy play a game of chase around the house.

The Blind Side is Good.

Woah!

Woah! I just came to the blog and noticed AJ is 7 months post-activation.

While I think it is safe to say things have been certifiably insane around here, I thought I should at least check in and let everyone know we're still here. Here's a tiny peek at whats been going on:

PT/OT: AJ started turning in his left foot again last weekend. It has progressively gotten worse. Along with our his PT, we've decided to continue taping him with Kinesio Tex Gold Tape on a regular basis. He wears the tape wrapped under his foot, up the side of his calf on both feet. He's also wearing the tape in an "upside down V" configuration just above his tush (not pictured). It can be worn for 3-4 days and is water resistant. We've been having him wear his de-rotation straps at home. They are a pain. Let me rephrase...a royal pain in the rumpus. We much prefer the tape. His straps do keep him in great alignment though. We've also seen a whole lot less of AJ standing with out putting pressure on his left foot/leg, which often happens when he's super tight. I have a rough-draft started to the company who makes these straps. Just a few suggestions on how to help them work better, AKA stay on an active child.

We are all convinced he is growing again, and has been since last weekend. He's TIGHT and has no idea where his body is. His eating patterns have changed and his sleeping patterns are varied. His habit and need for oral stimulation has increased dramatically. He's been "biting" or rather pushing his jaw into your shoulder and biting the fabric of your clothes. I've put a new battery in his z-vibe. His PT did craniosacral therapy on him on Monday which helped a bit, but he wasn't really into it as much as he usually is. Something just isn't right. I'm calling it a "system malfunction". So we're going with growing at the moment. His PT reassured me by saying he's still doing fantastically well and that its amazing he can keep walking while he's growing. A lot of CP kiddos get so tight they can't.

He stacked blocks during OT this week, just on a whim. Multiple times. Who is this kid?! He also picked up a block and a shoelace (it was a beading set of blocks & a shoelace to string the block beads) and looked at us as if to say "Now what do I do with them?" School reported that he played with Duplo blocks and nested cups inside each other. His left hand use has been a bit less with this his whole "system malfunction", so I'm finding myself putting his hand brace on more often. It certainly does the job. Someday I'll get a picture of him in it.

Nothing, I mean NOTHING is working to keep this kid from sucking his thumb. It had decreased, quite a bit, until this past week. We've tried EVERYTHING. He's ridiculously smart, knowing he takes 3 licks and the deterent we've put on his thumb is off (ie nail polish remover). I stuck my finger in his mouth and figured out his bottom right gums are swollen. More teething. Fantastic. Perhaps thats another reason he's Super Thumb Sucker these days.

CI: AJ is consistently turning to his name. NEVER THOUGHT I'D SAY THAT. He heard Christmas music at Great-Grandma's house the other day for the first time. That was the first of amazing CI Holiday Moments. He's also ripping his CI off every chance he gets. Its his way of protesting an activity, if he wants something, and its really annoying. He's been doing it at school as well. Yesterday they had to take off the toupee tape I put on in the AM before school and replace it-it had losts its "stick" since he had ripped it off so many times. I have found that the faster I get it back on him and continue talking/redirect his attention, its better. If he's crying and won't stop, I just ignore him until he settles, then he gets my attention. He's responding to novel and environmental sounds much quicker. He heard the dogs back the other day and turned to the door, so he's making that connection. Dogs bark = Doorbell. Guess the dogs are good for something :) We lost our first coil a few weeks ago. A replacement coil request was submitted to insurance, but it takes 30-60 days. Needless to say, I've become a hawk in watching where his implant is when he has it on, since he's wearing the "back-up" coil as his primary now.

Speech/Language: AJ's vocalizations are changing. He's yelling and squealing more, which is a good thing. We've got all kinds of new activities to help him increase his vocalizations. We think he's doing the sign for "eat" and beginning to raise his arms for "Bye-Bye" and "All Done". Its hard to tell. I know that sounds crazy, but with AJ, it is. I need to hit up the dollar store for more small flashlights. We use them for turn-taking vocal play.

School: We've had a busy week with school. We had our monthly "3rd Monday of the Month" home visit from AJ's teacher, AJ's IEP 1st Quarter Review Meeting, and Parent Teacher Conferences. I will cover these meetings in detail in another post.

Feeding/GI: AJ's swallow study was done last week. Talk about cool. We were done in 2 minutes, I swear. The rest of the time was spent reviewing and watching the study. He is NOT aspirating. YAY! We do need to keep certain textures of food small to prevent choking. We will also be rounding out his meals a bit more: A solid, a softer texture, and his liquid. He drinks really fast, which I guess is a trait for kids that have oral motor issues. Its easier to chug. He did do his "head back" thing when he eats, but then he also showed us a few awesome chin tucks while drinking. So we know he can do it. The SLP who conducted the swallow study mentioned that her report would support continued feeding therapy for safety issues. Apparently, when insurance co's look at the report and see safety, its not a problem. So, we should be hearing soon if our PA (Prior-Authorization) came through and then pick back up with feeding therapy.

He's been trying new foods and loving them. He's never liked bread, but suddenly likes to eat PB&J and Ham & Cheese sandwiches. And, obviously, from our previous post, he's drinking out of a straw. :) Oh, and I forgot to mention that she suggested I get trained to do the heimlich maneuver. So, two more things on my to do list, get CPR and heimlich maneuver training.

Photos: I'm taking the external hard drive to Milwaukee PC today. The disc that is retrieving files from the desktop, well its working, just a little too well. its hard to explain. The first scan I did it pulled up over 33,000 files. When am I going to have time to go through 33,000 files? So, I'm still working on it. But hopefully Milwaukee PC can recover them off the external hard drive.

Jeremy: Daddy is busy with work and school. He's excited about his upcoming math course (apparently the class he's taking now is annoying) and his trip to Philly next week. He was on a local radio station last week doing an interview about diabetes. I video'ed some of it off of the laptop, someday I'll get around to posting it. He did an awesome job though!

Heidi: Mommy is busy with AJ. A few other CI Mom's and myself formed a CI Mom Group. Our first meeting/gathering is tonight and I am super excited. I've discovered yoga. Which has discovered many unused muscles in my body but also done wonders for how I'm feeling day to day. I've also become obsessed with Twilight. Yes, I finally joined the bandwagon. So when I'm not thinking of strategies and appointments for AJ, I'm dreaming of beautiful vampires. Its an even trade I think.

Sunny: Our sweet goofy yellow lab/great dane mix. He's busy eating, sleeping, and parading around with his beloved Handy Manny doll that he stole from AJ's toy bin. I've never seen him covet anything like his Handy Manny. He's such a bird dog. Always something in his mouth. He's also been busy reminding me of why I want a 1) smaller yard 2) a fenced in yard. Last night he came in covered in mud up to his chest-15 minutes before I had to leave the house. I guess he wanted to take a bath and that was his way of telling me.

Rocky: Our loyal german shepherd. He's busy jonesin' to play frisbee outside and jump around like a jackalope. He also enjoys his daily naps, upside-down, spooning the bottom of the chaise. Yep, killer dog. NOT. He thinks pretzels are the best snack ever and if you have some, he should have some too. AJ is his kiddo. He's always checking on him and greeting him with a smooch when we come home. He's also quite attached to my Mom lately. Last night he was seranading her when she walked in the door. Oiy.

Sugar & Marvin: Are cats. They sleep. All the time. End of story.

OH-And the new song? Yeah. The "na na na...its like my ipods stuck on replay" has been in my head for days so I thought I's share it here. Its catchy! Here's a thought, maybe AJ will like it. The na na's could be good for him to hear...

Take that Cerebral Palsy!

On a whim, I decided to have AJ drink his apple juice out of the juicebox today. Meaning, for the first time EVER we were going to attempt a straw. He's played with regular size straws before, including chewing and them and folding them up, etc, but he's never drank out of one.

I was told that drinking from a straw would be extremely difficult for AJ due to his poor oral motor skills. This thanks to his cerebral palsy. I was also told that drinking from a straw is NOT A NEEDED SKILL. I don't care that its not a needed skill. Kids drink from juice boxes. Its just a fact. My kid will drink from a juicebox that has a straw. He will learn to drink from an open cup-successfully. He will learn to drink from bigger straws. When he's in college maybe he'll share one of those mondo margaritas that come with multiple straws with his roomies. He will learn the skill of drinking from a straw. He just will.

AND TODAY, HE DID. At first I let him figure out that I was sticking the straw into his mouth. Then I squeezed the juicebox a bit so he would learn that 1) liquid comes from this thing in my mouth 2) that liquid is my apple juice. After he gave me the cue for "I like this Mom"-which is a cheesy grin-I let it sit in his mouth and waited for him to do something. He sat for a while, thinking it would magically squirt juice into his mouth again. When it did not, he started using his tongue to roll the straw from side to side in his mouth. Then he figured out how to close his lips around the straw. Then he figured out how to suck out the liquid! It was amazing. I'm shocked and uber proud that he was able to do it so well.

By the time I ran to get the camera, he was pretty much done with it. I did manage to snap the picture above, despite that fact that holding a juicebox, camera, and trying to make one eyeball watch your child while the other focus' the camera is rather difficult. While this picture isn't the greatest, (as he's leaning to the left and looks like he's sipping alcohol rather than juice),it is proof that our little man is once again beating the odds before him.

Now if I could just get him to learn not to squeeze the juice box....