Friday, January 30, 2009

"Don't Make It So Complicated"

Mommy is spent. I have a million things to do, that yes all can wait for another day, but they are still things I need to get done. I used to be so organized, so well put together. I'm not feeling like that at all these days. We are soooo tired of waiting for AJ's implant. There is nothing we can do, and I am sooooo frustrated with that. I have mastered scheduling appointments, organizing all of AJ's paperwork neatly into color coded binders, and talking to idiots at the insurance company or provider offices. I know everything happens for a reason, but why is this happening? It is Day 57 of waiting on state insurance. With today being Friday, Days 58 through 60 won't be until Mon-Wed of next week. Our surgeon has not been successful in gaining more OR time. As of last week, he was out to March 11th already. If anyone knows where to find that "easy" button that I see on the Staples store commercial, please let me know. HAHA

I'm bawling, wishing my son could pointed to his ear and have signed "hurt" or "ear" or even "ear hurt" to me today. I'm bawling even harder wishing he could say "Mommy my ear hurts"...wishing he could say anything at all. I wish I knew whether AJ had hearing when he was born, and it was a progressive loss or whether he was born deaf. I wish I knew why he was deaf. I don't know either of those things and there is no way to find out. €I'm tired of the lack of communication between us and AJ. I'm low on patience. I am praying for strength. I am praying for a reprieve from this rollercoaster. I'm thankful for the modern world of medicine. I'm praying for guidance as I grieve for my child. When he was diagnosed, we jumped in. What do we need to do? Let's get him whatever he needs. Somehow, the grief took a backseat.

We spend so much time "down-playing" (by nature) AJ's issues. People may think that we are "negative", but we really aren't. This is what we live, every day. It isn't hell, but some days its not so fun. We don't compartmentalize it, or put it on a shelf like it doesn't exist. We don't ignore it. We deal and make sure we do what's best for our son. We worry with every plateau and celebrate every gain. People say, "See the positive, he's come so far." We hear that A LOT. He IS a totally different kiddo than the one we carried off the plane. But, we also know what's next on his agenda, what our next goal is, and what he should be doing. Truth: this is the hardest thing we have ever done. There are days I can't breathe I am so overwhelmed...there are days when I'm so proud of AJ that I feel like nothing can tear me down.

My Mom married the man I call "Dad" when I was 22. He lost his long battle with cancer the day AJ was diagnosed with CP in December 2007. We got that call a half hour after we got home from AJ's neurologist. I miss him terribly. When I have days like today, when I fall apart, I can feel him near me. When he met me, I was a young lady (his words not mine!) who needed to stand on her own two feet. There was one situation in particular where he firmly told me, "Don't make it so complicated, Heidi, make it simple." Growing up with a single parent (Mommy-I love you!), I didn't really have a constant male influence. This was never a problem, nor did I ever feel different than my peers, just in case you were wondering :) Naturally I thought, who does this guy think he is giving me advice?

It was THE best advice he ever gave me. At a party we attended with my Mom & Dad, Dad and I shared a dance. I remember him saying he knew how much I missed Doug (Jeremy's Dad) and how much of a special person he was to me. And then he said, "This is our time" and squeezed me closer to him. With my head on his shoulder, tears welled in my eyes. We never spoke of that moment again, but we both just "knew" how we felt about each other.

He went into the hospital a day or two before AJ's ABR test. I called him and my Mom at his hospital shortly after they had wheeled AJ's down the hall to begin his ABR. I told my Mom where I was, etc. and she asked if I wanted to speak to my Dad. He got on the phone, and sounded positive. I remember him saying he thought he'd be home or maybe in rehab in a day or two. I told him where I was and what was going on and he said, "Everything's going to be fine." Comfort when I needed it.

The next day I took AJ with me to the hospital to see him. His daughter and son were there, so I shared the news about AJ's deafness. Dad was in and out of it, but I remember him getting excited when my Mom tacked a "Winnie the Pooh" marshmallow treat on a stick on his bulletin board. When I got ready to leave, I walked to the side of his bed and he woke...looking me straight in my eyes and then into AJ's. He was looking at us...he knew. He knew it was the last time he would see our faces.

I feel so blessed to have had Dad in my life. I am angry at cancer for destroying his body, breaking his lively spirit, and taking him from us all. But I know he would be suffering if he were still here. I love ya Dad, but you-in pain-was not you. I find comfort in knowing he is no longer in pain. I am eternally grateful to him for loving my Mom and making her so happy. I am happy that he met his grandson and his grandson's cheeks (Dad had an obsession with AJ's cheeks) before he left us. I hope he knows how much he meant to so many and that even my best friend misses being called a "brat". (That was his thing)

I miss his tapioca pudding and his cheeseburgers. Rarely do I pronounce the word "casino" correctly. I still call Pepsi "P.P". Sales of Skippy, Spaghettios, ketchup, and New York Vanilla ice cream are suffering tremendously without him here. I miss the fly-swatter battles between Dad and Mom (hilarious!) and his silly tattling. I miss his "Guido" shirts. I miss his smooches...and him sticking his tongue out at me whenever I was "sassy" or was on my way out. I miss him insisting that AJ's 3 month picture from the orphange being the one that way displayed at all times. I miss his awesome friendship.

So, Dad, it IS complicated. But I am trying, like hell, to make it simple. And I know your right. Everything's going be fine. We'll get there...someday.

I Love You and Miss You,
The Lil' Brat

25 Minutes

Grrrrrrrrrrrrrrrrrrrrrrr.

Yesterday, I woke from my nap to the phone ringing. Our phone "talks"...meaning it says who's calling and then rattles off the number. I heard "Chills Hosssp" (you should hear how this thing pronounced certain words-hilarious!) and jumped out of bed. Translation: Children's Hospital. It was only a recorded reminder of an appt we have with his CP doctor next week. I think my heart jumped out of my chest when I heard who was calling. Dear God, I am asking you (kindly) for the "call" with a surgery date to come soon.

The night was rather uneventful, except for me loosing my voice completely. I had called AJ's TOD earlier in the day and told her we would not be at the Betty Brinn/CDHH Family Night. The museum was open in the evening for CDHH families. By attending (and taking the official tour) we received a free one-year membership. I was disappointed we couldn't go, but I didn't want to "infect" others, or have AJ spread germs on other kiddos while playing. We did send Daddy though. He said the tour was nice and that they gave a great explanation as to why they offer this to families of children with special needs. We don't even have to worry about paying for parking. We are excited to take AJ there whenever we can.

This morning I woke up with a wicked cough and found it very painful to swallow. AJ ate but refused to drink anything. I had cancelled his TOD for this morning, thinking he would be sicker today. Thank goodness I did. After giving him a bath and blow drying his hair, I decided to take the two of us to urgent care.

AJ: Double Ear Infections.
Mommy: Bronchitis

Great. This explains (at least part of) why he's not drinking. He used to do that with his bottle-the sucking hurt too much so he wouldn't drink. Since he still has a slight sucking pattern with his sippy cup, this makes total sense. I feel like a bad Mommy. Either I take him in and they look at me crazy "He's fine you hypochondriac mother," or I feel like I waited too long. It is super hard to figure out when he has an infection. Since he bangs his head with whatever his choice of small toy he choses for the day, we can't tell if he's doing it to "hear" or if he's in pain. His irritability, etc. over the last few days, along with the banging, and lack of drinking, all make sense.

AJ was given an Rx for Amoxicillin (his usual). I was given a Z-Pak, Cough Syrup with Codeine, and Nasonex. In an effort to get AJ's antibiotic into him ASAP, I drove straight from the clinic to the pharmacy. On the way, I passed McDonald's and noticed the line that stretched all the way out to the street and then some. Anyhow, I made a mental note that if I need to wait for our Rx's, I'd cruise back to McDonald's and pick up lunch for AJ. I KNEW he'd eat that.

I got to the drive-thru and was told it would take 25 minutes. Alrighty. I drove back towards McDonalds...the line was even longer. Ugh. I don't trust people cruising behind me to realize I'm in the far right hand turn lane-waiting to get into McD's. So, I went to plan B. I drove to Taco Bell and picked up his lunch, dropped off some mail in the drive-by mailbox at the PO, got gas, and then drove EXACTLY the speed limit back to the pharmacy. After sitting in the drive-thru for 15 minutes (grr) and feeding AJ raisins (thank God for small boxes to fit in Mommy's purse), I was told our Rx's were not ready. You've got to be kidding me?! "25 minutes more," she said, "We're backed up." Frankly, I didn't really care.

I drove home and watched AJ inhale two containers of pintos n'cheese (340 cal!) After eating and cleaning up and changing the bean monster, I called the pharmacy to make sure the Rx's were ready. I was not about to bundle AJ up, drive down there, and then find out they weren't ready again. Sure enough, she said they still weren't ready. What THE? I did a few dishes and started to feel myself getting really tired out. I waited an extra 15 minutes and drove down to the pharmacy. I sat in the drive-thru for another 10 minutes. Grrrrrrrrrrrr. I finally had our 3 big bags of meds in my passenger seat and drove home with a very tired little boy.

I have never seen a child take medication as well as my AJ. He's hilarious. I've also never seen a kid start to feel better after antibiotics as fast as AJ does. It's like he KNOWS. He opens his mouth and takes it like a champ. I know I could have waited and just brought him home and napped him. But I wanted to get the antibiotics into him as soon as possible. I'm a bit anal about things like that. And he cannot have his CI surgery with an ear infection!

He's sleeping soundly now, with a belly full of beans and medicine. Oh, and I forgot to mention that he surprised me by drinking a full cup of milk after he had his medicine. That warmed my heart :)

Thursday, January 29, 2009

Power Out-Time Out

It's Thursday night and I'm snuggled up on the couch with a blanket and the laptop. Sick. With an icky cold. AJ has one too, but at least its not as bad as mine.

Over the last few days the electric company has been on our road swapping out the old poles for new ones. Early this afternoon they shut our power off for about an hour. After the tech came to the door, I scurried to heat our lunch in the microwave and run the humidifier in AJ's room to make it moist and warm for naptime.

While eating lunch I started doing what I normally do...thinking about what I needed to accomplish while AJ was napping. Laundry? Nope, no hot water. Dishes, nope. Phone calls? Nope. Prep a meal? Nope, electric stove or microwave. Update the blog? Nope, no modem for internet access.

I finally gave in. I put AJ in bed and went to bed myself. Mommy needed a time out from being a Mommy....

Wednesday, January 28, 2009

AJ's TOD in Milwaukee Journal Sentinel

AJ's TOD Chris, was interviewed for an article on the Center for Deaf and Hard of Hearing in our Milwaukee Area. Yeah! We love our Chris!! I've pasted the article below-if you want to read the article on the newspaper's website, click HERE.

The news was unclear at first.

Soon after the birth of their son, Wade, Chad and Christina Lindmark were told the boy had failed a hearing screening, but doctors thought it could be inaccurate because of fluid buildup in his ears.

The couple hoped for the best and tried not to worry, but once home, they conducted their own testing.

"We banged on pots and pans when he wasn't looking, to see if he would respond," recalls Christina Lindmark. When Wade didn't react, she said, "we both knew that something wasn't quite right."

A more in-depth test confirmed their fears. Wade, who had severe hearing loss in one ear and profound hearing impairment in the other, was legally deaf.

"It's such a scary place to be to think that you can't communicate with your child," Lindmark said.

She and her husband turned to the Center for the Deaf and Hard of Hearing in West Allis for help.

The center focuses on early intervention, giving families the tools, resources and strategies needed to nurture their child's language, speech, intellectual abilities and social and emotional growth.

In its 80-year history, the center has amassed a number of success stories, including Robbin Scott, former Miss Wisconsin National Preteen, who was born without a left eardrum and 40% hearing in her right ear.

Scott and her mother, Lynne, credit the center for keeping her on track with her hearing peers early in life.

"I'm very grateful for the life I have," said Robbin Scott, of Menomonee Falls, now a student at the University of Arizona.

Christine Kometer, program director of the center's Kellogg Child and Family Program, said it has been within just recent years that advances in hearing screening technology have made it possible to identify hearing-impaired infants at birth, greatly enhancing the opportunity for early intervention.

"We start with children as early as 2 months," Kometer said. "Many children now are getting to the age of 3 years old and are entering school with very close to age-appropriate language."

She said children with hearing loss who do not receive early intervention services have a higher risk of developing learning disabilities, poor social skills and behavioral problems that can last a lifetime.

The center is a welcome site for the families it serves because 90% of infants born deaf are born to hearing parents. The program uses a family-centered approach to early intervention, recognizing that the most important learning environment for a child, particularly in the younger years, is the home.

The center, which also serves adults, offers a wide range of communication approaches, from lip reading to American Sign Language, and also a number of therapy options.

The Lindmarks selected the center's auditory-verbal therapy, which teaches parents how to develop their child's ability to learn through listening.

Christine Lindmark recalls that during early therapy sessions, she would cover her mouth and ask Wade, who wears hearing aids, to repeat sounds she made in an effort to exercise the tiny muscles in his ear to help build stronger multisensory pathways.

Wade, now 4, reads on a second-grade level.

"His speech is on target, if not advanced," she said. "It's pretty amazing."

Funny Boy

Who needs a cup when you have a Tupperware snack container to drink out of?

Tuesday, January 27, 2009

New Design & GI Plan

So, do we like the new look of the blog?!

Not too much new to report. FYI, we did find banana milk. Of course, 2 days later, he refused to drink it. :)

Although he had a decent day today, AJ's still isn't eating/drinking well. Yesterday (after a morning of tears trying to get him to eat breakfast), I broke down and called his nutritionist at the GI clinic.

She called me back in the evening and we discussed AJ's sudden aversions to eating and drinking. We came to the conclusion that maybe he's not doing as bad as we think he is. Here are a few more things that we chatted about:

* I will keep a detailed, calorie specific input/output log of what AJ is eating, drinking, etc. for the next week. (I created a chart for each day -I'll post a picture soon). Next Monday, I will fax the log to her and call to discuss. I was actually thankful for taking math in school today-calculating calorie intake can be tricky. I am also thankful for Jer's Calorie King Book for foods that aren't packaged with nutrition facts.


* We have reduced his calorie intake from 1500/day to 1100-1500/day. Little more breathing room. Whew. When I told her he had eating 560 calories for breakfast the day before (by a miracle), she said he's probably getting full on those big meals. Well, what's a gal to do besides try and get 500 calories per meal in her kid? He's not too much of a snacker.

* 1/2 of any amount of applesauce, jello, ice cream, custard, & ramen noodles counts towards his liquid intake for the day. Example: 4oz of cinnamon applesauce = 2 oz liquid

* I shared several people's suggestions on what else he may like to drink. He loves bold flavors, so....The only drink she agreed with was the V8 Splashers.

* Minimum liquid intake per day: 24 oz Target liquid intake per day: 30 oz

AJ has a follow-up appointment at the GI Clinic in mid-February...I am praying we won't have to go in before that.

Today was a good day for AJ. He only had minor typical-two-year-old tantrums and ate decent. He even drank a substantial amount of liquids. My giggly boy returned and boy-was I glad to see him. We are crossing our fingers that this continues.

Thursday, January 22, 2009

Ninja with a Pink Cup

Part of the fun of having this blog is to come up with some INSANE post titles....

We have lots of updates so I thought it would be easier to smush everything in one post, than several separate posts.

Cochlear Implant Process Update
The case worker sent the letter of approval to the insurance company and to our surgeon's office. She also emailed me a copy, per my request, which I received a few minutes ago. We need BOTH primary and secondary insurance approvals or denials (in our case-approvals-just waiting on the state) before they will schedule AJ's surgery. We are on day 51 of waiting for the state's approval.

In the meantime, we are packed and ready to go for his overnight stay at the hospital. Everything except the things we use on a daily basis, like his cuddle Tigger, pillow, my contacts, etc. Daddy went out and found button up shirts for him and all of his zip-up/2-piece button up "Hef" pajamas were set aside for the hospital stay and post-surgery.

In preparation for our super-sensory kid wearing a bandage on his head for a few days, we have been wrapping his head with an ace bandage. He looks like a little ninja :)

Physical Therapy
AJ is definitely growing again. He's backed off on the walking...again. His hamstrings are wicked tight. I mean tight. It has been a while since I've seen him take a few steps and fall backwards-almost tipping. This would be his hamstrings tightening and actually pulling his body backwards-making him fall. Back to the infant massage several times per day.

His PT has been amazed with his fast progress recently. Both the stairs and the stepstool were goals on our last IFSP. We are now walking him up and down the stairs. We are still to encourage him to crawl up and down, but need to faciliate the walking. We have also moved on to getting into his car seat on his own and the beginning of potty training. We were lucky to have his PT here twice this week :) Today, being that it was a warm 34 degrees out (haha) we had him make his first attempt to climb into his carseat on his own. He did better than his PT expected.


Occupational Therapy
We continue to work on dressing. We dress him in standing, which some people find odd, but it helps improve his balance. He can pull his shirt up and down, take off his socks, and put his arms in his shirt in like a pro. Workin' on the whole pants thing.

We are also working on marking paper (coloring), ripping paper, and dare I say it, cutting. His OT brought a special scissors last week that we've been trying with him. AJ's midline (bringing hands together to middle of body) has been improving, so we hope this will help with stacking blocks and putting objects "in" a container.

Language/Early Education
Due to the holidays, we didn't see AJ's TOD for a few weeks. She was extremely impressed with his progress when she saw him last week. He turned to the drum upon first presentation...same with the cowbell. I get such a kick out of watching AJ watch his TOD sign. :) We still have yet to make a decision on which communication option we desire for AJ...but his TOD is patient and answers any/all questions we have. We are sort of in limbo at this point. But by the time he has surgery, we need to make a decision-at least a path to start on.

AJ's TOD and I discussed, at length, our tour of Lowell. A few days after our tour we had a bit of scare. We were unsure if our district would contract with Lowell. Certain school districts do not want to do so and claim they can provide the kids with services in their own district. This may be true for some kiddos, but in our opinion, not our AJ. Not yet anyway. Thankfully, after several phone calls, we're in the clear. We will have our transition meeting, with our Birth to 3 coordinator and the School District Rep, in about a month. A few weeks after that will be his first IEP meeting which will include those two people as well as AJ's new teacher at Lowell, and his current therapy team.

Yesterday, he was all about signing "more", when I wasn't looking. While he was feasting on my Mom's awesome BBQ pork, he decided to sign more while I was flipping through a magazine. Great-Grandma was watching him, as was I out of the corner of my eye. Sure enough, he'd sign when I'd go back to the mag. Stinker. It may come as no surprise that I haven't been able to get his signing on video yet....

Since we wrap his hands individually with coban, so I decided to try wrapping his hands together on Tuesday. He sat for 15 minutes and watched his light toy and didn't fuss at all. The next day he was coming to midline and signing more like a champ. I think I'm on to something.

Explanation: Coban is a self-adherent wrap that sticks to itself, but does not stick to other materials or skin. You can find it by the bandaids at the drugstore. But I will warn you its $5 for a tiny little roll. AJ's PT and OT introduced us to Vetrap. It is most commonly used on horses and comes in a variety of colors. Vetrap is made by the same company as coban, and is virtually the same thing-it just costs a whole lot less! I get AJ's HERE.

Feeding Therapy/Oral Motor Therapy
Bah Humbug. Over the last two weeks, AJ has gone from drinking his milk and water like a champ, to not drinking anything at all. We have tried everything to get this kid to drink. Then he started doing the same thing with food. Talk about a food & drink aversion. This...is NOT good for a child who is supposed to be getting 1500 calories per day and is walking around all over the place. AJ's eating/weight issues are one of my biggest stressers. Most of you know that, and know that it really bothers me when we have a setback or issue in this department.

At feeding therapy yesterday, his SLP gave him banana milk in a special pink cup. The cup is called a Flexi Cut Cup and can be found HERE. We have the middle sized blue cup, but the pink one is a smidge smaller and works well for him. He had great lip closure, NO leakage, and loved the milk. Whew. His SLP thinks that he probably gulped too much liquid while drinking recently and that sent him backwards. He did drink some of the milk in his sippy, and went back and forth between the two cups and his scrambled eggs. He drank 16oz of banana milk yesterday. We have to slow him down and teach him how to control the cup, taking breaks between sips.

His SLP was very impressed with his use a fork, his ability to turn it around and know when he wasn't the correct way. She was excited to see him go after some eggs that had slipped out of the bowl and onto the tray. What's so big about that? He went after them with his fork, not his paws. He's using his fingers to push foods (raisins, fruit loops, etc) to the sides of his mouth. We have to watch him with the raisins as she thinks he's not chewing them properly and swallowing them when they become "slippery" and flat. We also need to help with his bite & tear skills...meaning when he eats soemthing like chicken nuggets offer him a nugget to bite and tear while he's still got smaller chunks on his plate. We will continue with using the Nuk Brush , Probe, Small Textured Spoon, and Z-vibe tools to encourage lateral tongue movement, chewing, and biting.

Last night, AJ's Dad brought home chicken nuggets for AJ. As always, AJ crawled up on Dad's lap when he sat down on the couch. I come into the room, and there are my boys, chompin' on chicken nuggets and watching the Bucks game. It was just too cute for words. For a few moments, I just sat and watched the two of them and was in bliss that my 2 1/2 year old was actually eating and happy about it.

Banana milk is hard to find around here, but after naptime, we'll be stopping and getting it wherever we find it. (I already checked, they don't make banana powder for flavoring regular milk). We and his team have all agreed that his highchair is still not benefiting him. He's just too small, among other reasons. This morning I brought his other chair back up (without the tray) and it worked like a charm. I managed to get him to drink strawberry flavored milk (whole milk w/strawberry syrup) this morning...along with cheesy potatoes, fruit loops, and Captain Crunch's Crunch Berries. Whatever WORKS.

Monday, January 19, 2009

Primary Approval

Today, I spoke with our primary insurance company. AJ's 1st cochlear implant surgery has received approval (pre-authorization). They will be sending the approval letter to our CI Program soon...and we should have a surgery date soon after.

If you are thinking that this post is much to straight-forward to be a "Heidi" post...you are right. Today has been an emotional day. Who am I kidding, the last few weeks have been. Right now, I'm stickin' to the facts.

Sunday, January 18, 2009

AJ's First Sign 1/18/09

Ladies & Gents,

Our son signed his first word tonight.

"MORE"

Age: 31 months
Exposed to Language (sign) @ 18 months old - Total exposure to date: 1 year
Developmental Age: 15 months(ish)

Signed,
AJ's Very Proud Mommy & Daddy

Wednesday, January 14, 2009

"Step"stone

At approximately 8:09pm last night...

AJ climbed up our full flight of basement stairs.

12 steps.

A true "Step"stone.

Tuesday, January 13, 2009

Preschool Tour

Where does time go? Didn't we just bring AJ home from Guatemala?! I guess not....

AJ will be 3 in June! He will no longer receive Birth to Three services and will transition into the school system.

Today we toured a preschool classroom at a school we are considering for AJ. Thanks to Drew's Mom for posting this Preschool Placement Checklist for Children who are Deaf and Hard of Hearing. It came in handy today!

A few months ago we heard the name "Lowell" and had no idea what it was. Lowell Elementary School offers programs for children with and without hearing loss. The school houses the Wisconsin Statewide Demonstration Project Auditory-Oral Program. We've been discussing Lowell with AJ's EET, SLP, and CI Audi for quite a while. All we kept hearing was "It is THE school for him to go to." His EET set up a tour and met us there today.

First we observed the 3K (preschool) AO program class. To find out what modifications have been made to the classrooms to optimize learning, click HERE. There were HEARING peers among the children in the class. The other children all had CIs. We were able to meet and talk with the teacher, who is also the AO program coordinator. There was also a Teacher's Aide and an SLP in the classroom. They rotated activities while each child received speech in the sound booth...that is IN THE ROOM! (For all you parents of D/HOH kids, I much prefer the ones with windows, don't you!)

The teacher then took us on a tour of the rest of the school. They have a ratio of 1:3 or 4 kids has an IEP. By 3rd grade, most ( I use this term lightly) kids are mainstreamed into a regular classroom, with maybe a one-on-one with a TOD or the SLP as part of their school day. What we liked is that it is very individualized. They will look at what AJ's specific needs are. AJ will not be segregated from his hearing peers-we like that A LOT. There were also sound booths in the 1st and 2nd grade classrooms. We also observed a Total Communcation class and a 2nd grader during his one-on-one time with a TOD. Amazing!

To read about the staff, click HERE. There are multiple SLPs on staff, as well as an OT and PT. AJ could receive all of his services at school. (Note: we still anticipate the need for PT outside for school for at least the first year) There is an audiologist on staff as well. The Auditory Oral Program staff works closely with our CI Program.

Overall, we were very impressed. We were impressed with the level of attention each child in the class received. The facilities were amazing. The classes are small. The structure of the classroom appealed to us. The staff was incredible, with a program director who is really on top of her game. This would be a great place for AJ to learn!

One downside. The school isn't very close to us. This, paired with me nannying again as well as a few other things....AJ's dad and I have some serious thinking to do.

AJ's EET will be here Friday for her usual home visit and I am anxious to discuss, in detail, our visit today. We also thought of more questions on the ride home. I will be contacting the program director soon to address them. We shall see....

Monday, January 12, 2009

Caution: Toddler on the Loose

In the last 24 hours, we've had two fat lips and a bloody nose. I'd say we've definitely got a toddler on our hands :)AJ now prefers walking vs. crawling. YEAH! He's gotten stronger, walks smoother and more controlled and is ALL OVER THE PLACE!

On Monday he took a few steps backwards for his OT. On Thursday I caught him standing on the couch. Yep, I said the couch. Apparently the view of the fan is much better up there :) Except i couldn't figure out how he had gotten up there. We have a makeshift "staircase" made from a step-stool, a Huggies diaper box, and then the seat level of the couch. I took him down and he showed me exactly how he had gotten up there. He skipped the step-stool and stepped onto the diaper box. WOW! On Friday, he showed his PT his new skills-she was thrilled! Now, we can move him to the real stairs, while practicing on the couch. He also held both his hands abovce his head while holding a small board book. I don't know why kids always do PT things for the OT and vice versa. They just know!

He's also mastered eating with a fork and with a spoon. He just started holding the bowl with his left hand and then scooping/eating with the right hand. Amazing. He has also figured out how to place his sippy cup back on the table when he's done taking a drink. AMAZING! Our little man is doing things that a typical toddler is doing. When he was first evaluated, AJ was at a two month old level. Now we're working on 3 year old skills.

CAUTION: AJ on the MOVE!

Wednesday, January 7, 2009

FOUND!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Pardon my hyperventilating and tears over here....I literally received a call from the MMT rep just as I clicked "Post" earlier.

We've been FOUND!

The rep said it typically takes 5-7 business days for them, depending on if they have to do more research or contact the doctor. They will call/fax the CI office with their decision.

Whoooooooooooooooooooooo (that's AJ's Mom letting out a big sigh of relief)

Floating in the Air

Today, I placed my daily call to the insurance company. Did you receive our paperwork yet?

No.

Where is it?! This particular person told me to call the Medical Managment Team (MMT)and see if they had gotten it. I did so, and found out that we should have faxed it to the MMT. The MMT rep was very nice-it was a nice change of pace.
I called our CI program to make sure it was sent there-it was. It takes about a week to scan the paperwork in and get it to the proper person. I know, I know. But I was at least hoping to have someone say, WE HAVE IT.

I had a small moment of guilt, feeling bad for bothering and sticking my nose in. But honestly, that seems to be the only way we obtain the services, etc. that AJ needs. I will continue to call, every day, until we get the answer we want.

So for now, it seems we are floating in the air somewhere, when we land on an insurance rep's desk, I'll be sure to let everyone know.

Tuesday, January 6, 2009

"He's so quiet"

AJ & I made a trip to the grocery store this afternoon. Only a few other people were in the store, which is odd for this time of day. While enjoy his ride in the cart, AJ kept himself occupied with Mommy's car keys, and of course, my shopping list. He also loves to watch me open and close the glass doors, watching me sign whatever item I've picked up, and then watches as I put the item in the basket.

When we reached the checkout, I unloaded our items onto the belt. While paying, the cashier greeted AJ and then said, "He's so quiet."

Yes, he was! I didn't take the comment how I would have months ago. Instead, I stopped my dead in my tracks and saw how much his behavior has changed-for the better.

For a sensory-kiddo, the grocery store is a nightmare. We took him to the store a few times when we first brought him home with no issues. But as we started therapy and noticed he began getting scared in new places, we became concerned. I always thought I was just being "chicken" until I brought the subject up with AJ's first OT. She told me I was absolutely right.

Whoda Thunk? (That's her saying by the way too)

Think about it. He's in a moving object, moving forward, backward, and turning in all directions. Mom disppears from right to left, forward and back. People walking away from him, people walking towards him. Items on the shelves stationary but then "moving" while walking down the aisles. Overhead lights, and about a million changes in "scenery." Stop and go constantly.

This past June, I decided we were going to face the the store. His OT had suggested starting small, picking up a few items and checking out. Gradually building to a full grocery shop. I placed him the cart and to my surprise, he loved it. He loves vestibular movement, so the cart ride makes sense. We got the items I had on my list in about oh, 1 minute, and I didn't know what to do. I was so shocked and excited he was enjoying himself, I started walking up and down the aisles. The juice aisle was especially exciting-just giggled and giggled. I realized I had my new phone (with a camera) in my purse and started snapping pictures and video of my kiddo in the grocery store. I am absolutely sure several people thought I was insane.

We checkout and I praised him all the way to the car. Again, who's that insane lady taking pictures while she's pushing her kid in the parking lot? I called AJ's OT right away and shared our accomplishment. She was thrilled and we celebrated this huge milestone for AJ.

We went through a few months of him pitching a fit whenever the cart would stop. At first it was only when loading items onto the checkout belt. Then when we paid. Then anytime the cart would stop in the aisles. He still has those moments when he lets us know needs that vestibular movement, but gone are the tantrums.

Today, I took AJ on a full grocery shop. He was happy. He was occupied. He did not fuss when the cart stopped. He was "ok" when I unloaded the groceries. He was fine when I paid. And yes, "He was so quiet."

Monday, January 5, 2009

48 hours

I called our new primary insurance company this morning to ask a few questions. The most important: Did you receive the paperwork for AJ's cochlear implant surgery?

I learned that Children's Hospital WI (CHW) is considered in-network. YEAH! No more referrals for everything under the sun. I was told about our new deductible, out-of-pocket, and % of coverage. All good things. Again, I was told that the CI would be covered, as long as it was authorized. The rep offered to check and see if they had received the paperwork yet. Answer: No. BUT, that answer was followed by "Well, they do have 48 hours to give you an answer."

"Not 48 days?" I said. Wow. Could this really be? Light is beginning to glimmer...

It then occured to me that I was unaware of how exactly we were submitted (this particular time). I thanked the rep and told her I would call back tomorrow to check on our status again. I placed a call to our CI Program insurance person who told me we were faxed, not once, not twice, but three times. She stood by the fax machine to make sure it was received and she had written confirmation by the fax log. She stated she'd never had a turn-around as fast as 48 hours from our insurance company, but...she'd give them a week to get everything scanned into the system and to the appropriate person and then start calling them. I'm beginning to really like her.

We have already decided that we will be on the cancellation list. After therapy tomorrow I will head out to find button up clothes for our little man to wear post-surgery. And maybe an ace bandage so we can practice wrapping his head. Maybe we'll start an overnight bag as well...nothing wrong with being prepared.

Saturday, January 3, 2009

**CI Process Update**

After posting on Wednesday, we received a call from AJ's audi. She stated that she received our fax, but doesn't actually submit the paperwork to the insurance companies herself, they have someone on staff that does that. She gave me this person's name and contact information. (I've called this person twice since and left two messages). Hi audi then asked how we were doing and answered my other questions. Here is a breakdown of the information exchanged and where we currently stand in this process:

+ Our surgeon currently has OR time on Wednesdays

+ Our surgeon is booked out already until late February 2009. Given this, we are hoping for surgery in February/March with activation in April. Better yet-a cancellation that we could fill.

+ There are a few other kiddos ahead of AJ who are in the same boat (waiting on State Insurance approval)

+ State Insurance implemented a new computer system three months ago. They have yet to work out the kinks. AJ's audi thinks this may be part of why we have not received approval yet. She also thinks the holidays and people's vacations may also be stalling our approval.

+ It is possible that state insurance approved AJ's surgery, but due to the holiday, it may be sitting on someone's desk...just not mailed yet. Doesn't think sound like Guatemala PGN all over again?!

+ We are on day 41 of waiting for state insurance approval (this does not include weekend days). State insurance has 30-60 days to approve. I asked what happens if they do not approve in 60 days...his audi stated their insurance person would start making phone calls.

+ The insurance person called yesterday and stated she received our new insurance information and that we were SUBMITTED TO OUR NEW PRIMARY INSURANCE YESTERDAY-1/2/09.

+ I have put two new tickers on the top of the blog...one for submission to our primary insurance and one for submission to state insurance.

+ Given this extension of waiting for a CI for AJ, we are contacting his ophthalmologist to see if we can schedule his eye surgery sooner than later. She had wanted to wait until after his implant surgery when we though it would be around Christmas. Hopefully we can give him better eye sight while we wait for his "ear".

We made it past midnight...did you?

We had our very good friends Dustin, Michelle, and their brand new baby girl Penny over for New Year's Eve. Jeremy and Dustin have been friends for 20+ years, which means lots of funny childhood stories and lots of laughs. We had a nice relaxing evening, watching New Year's Eve specials on tv and talking about how our lives have changed over the years. Even just to chat about how our lives had changed over the last year was an eye-opener. I made entirely too much food, but sent a goodie bag home with our guests so it worked out. AJ is so interested in Penny. When we visited her at the hospital he noticed her right away and walked over to her. I'll have to post the picture Dustin took-it is just too cute. This visit, he went for her eyeball. Not so great. But we redirected him to her hand, which turned out to be a cute "awww" moment. It didn't take long for him to turn his attention back on the fan.

Surprisingly, we all made it PAST midnight (with the exception of AJ and Penny). We go the champagne bottle open (without breaking anything in my kitchen!) just in time for the ball to drop. New Years Day marked another celebration in our house. Jeremy celebrated 20 years of diabetes...without complications. Here's to a New Year! (Pictures below)




Sign Me Up



The day after Thanksgiving, I randomly emailed someone at our City Hall. I knew the office was closed, but still wanted to make this particular request, so I browsed the different departments and chose what I though was most applicable. I requested information on how to have "Deaf Child" street signs placed on our road. After the weekend I received an email back, stating someone within the department must "refer" the placement of the signs. This gentleman was kind enough to do so and stated the signs would be placed as soon as their manufacturer could produce them.

Less than 2 weeks later, they were up. Our road is the "old two-lane highway". Behind our house now runs the new-four lane highway. We're out in the country, so think county road, not concrete rush-hour. Most people that FLY down our road don't bother to notice the 35 mph speed limit sign much less the Children Playing sign. We have no sidewalks, and our driveway goes right to the road. I am happy to say that I have seen a decrease in frequent flyers lately. I am hoping our signs are causing people to be a bit more aware of their speed. Although, it does make me a bit sad to think that it takes a large yellow sign with words to make a person more aware.

Why put the signs up if he's getting a cochlear implant? Because the implant does not change the fact that he is deaf. He will be ready to go out and play in the driveway and the yard this spring/summer. We want him to be as safe as possible. He can't hear Daddy say "Come Here" or the sound of truck barreling down the road. Even with a CI, if the coil slips off his head while he's playing, he won't be able to hear. In addition to the signs, I think we'll be getting some type of mesh fence/safety cones etc. to put at the end of the driveway. We saw some at ToysRUs and thought they were a great idea. Safety is a good thing....

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