Tuesday, April 28, 2009

P4 and more

Yesterday, AJ decided to be "2" when he woke up from his nap. He screamed for about an hour. Nothing, I mean nothing would make him happy. He heard his own crying and yelling...and didn't like it. AT ALL. Towards the end of his tantrum he took his coil off for the first time ever. He realized that 1) HE WAS THE ONE MAKING THE NOISE 2) THIS THING IS WHAT MAKES ME HEAR. We placed it back on and watched for reaction. Again, he got mad as his crying got louder. We think he was crying more because he didn't like the sound of himself crying. We gave him a break from his CI for a few minutes. When we placed the coil back on Daddy took him outside to walk around on his shoulders (his favorite thing to do). The boys went for ice cream shortly after their walk. Mommy had the whole house to herself for a whole half-hour. I typed AJ's IEP Parent Report-fun fun. We didn't switch programs yesterday and nothing outside the usual happened. So what brought this on? Hm.

Today, AJ had another speech appointment. He did remarkably well, this time turning to the "light boxes" in his SLP's room. We also use these in the sound booth as rewards for turning to a sound/noise. AJ needs to practice/learn how to turn. He was good at it in the booth before with his HA's, but that was over 7 months ago. He turned to the cymbals, clacker, drum, SLP's voice, clapping, and possible response to the tamborine. We were actually able to get him to turn to the light boxes. (He did not do this in the chair during activation-I think half of his issue was the height of the boxes vs. his chair) Jeremy and I had decided that I would turn AJ up to P4 while we were at speech today. He had no negative responses. Yay!

He had great eye contact with his SLP today, full of intent. He also grabbed her hands multiple times to push her hands together for "more". His SLP and I discussed what we've been seeing at home, including longer vocalizations and AJ talking back and forth with us (ooooooo, OOOOOOOOOO, ooooooooooo, OOOOOOO). When I turned around in the car yesterday to give him more of his snack, I said "more" (his coil was off-darn carseat) and he signed "More". SO.....we are thinking he definitely recognizes my facial expressions and what they mean, and he may also be reading my lips. We've been doing "physical nudging" to encourage him to consistently sign "more". We nudge his elbow and he brings his hands together. AJ is turning to our voices more often. He is standing up on his own again and walking instead of crawling.

When he got up from his nap today, he started screaming when I put his CI on again. What the? We tried to sooth and keep background noises to a minimum. When that did not seem to help, we again took it off, gave him a break, and put it back on. He was fine. So maybe he just needs a bit of time to adjust/wake up before we put it back on. He does not do this in the morning.

Tonight I played the piano for my son, which was an experience I will never forget. He enjoyed it and loved being up on the bench with me to pound the keys! He also did very well with signing "more" during his multiple courses of dinner tonight. He is doing so well...even though the crying post-nap freaked us out.

We're anxious for his audiogram on Friday to see where AJ's hearing with his CI. This may be the first sound booth experience where I won't have to wear earplugs :)

Sunday, April 26, 2009

Long Weekend

What is it about a cold and rainy day that makes you want to do absolutely nothing? Nothing but curl up with a cup of hot cocoa, a good book, and a blanket that is entirely too big for you. Times that type of day by two and you've got our weekend.

We had absolutely gorgeous weather on Friday. So gorgeous we debated on turning on the air conditioning. It cooled down a bit and a beautiful breeze came in during the early evening. We grilled out and sat outside with AJ, enjoying the warm breeze. AJ has always loved the wind in his face, but his reaction this time was a bit different. He could hear it. It was a strong enough breeze that he was definitely hearing something.

The weather was supposed to be nice again on Saturday. Not so much. Saturday morning was nice enough we had AJ outside in his PJs and ate breakfast on the bench swing. AJ thought it was pretty cool. It was also a great language experience. Truth be told we don't know "exactly" what he's hearing, or at what level he's hearing, but it doesn't hurt to practice or to help him to continue to detect sound. Mid-morning the weather took a sudden turn to cold, damp, and rainy. Rain turned into what seemed like a monsoon. Grrr. It rained all night and throughout today. It was our first experience with AJ in the rain with his CI. A little nerve racking. Granted we only had to run from my Grandma's house to the car, but still.

Jumping back to Friday, AJ's TOD came for our weekly session. She was thrilled to hear/see how AJ was doing with his CI. I also gave her the log of daily activity related to AJ hearing; we've been keeping this log since Monday. He responded to the wooden block & wooden mallet, the jingle bells, and the cymbals that his TOD brought. YAY! I was especially excited that he responded to the jingle bells, as they were softer than the sleigh bells we have. I also turned him up to P3 while his TOD was here. No "sudden" reaction. Sort of like "ho-hum" nothing happened. Hm. He heard the bath water for the first time on Friday. It dawned on me to take him in the bathroom and let him listen to the water fill the tub while he stood and watched. His face was priceless. After I took his CI off and put him in the tub, he went straight for the water, starring and giggling at it. :)

He continued to do well yesterday with his CI. Nothing too exciting happened yesterday.

Today he was not in the best of moods. I have noticed more consistent naps since he's been activated, which is a blessing as he still needs a good nap in the afternoon. I can only imagine how hard his brain is working to process all of this new information and this new sense. Even though he was crabby, he still managed to make some great gains today. He has this baseball toy (thanks Bubba & JimBob!) that we've brought out from time to time and he's hasn't shown interest in in the past. He found the bat in his closet during naptime one day...as I walked in the room and found him standing on his bed with it in hand like Bam-Bam. Anyhow, he didn't have much interest in using the bat to make the ball go around and make the lights turn on...but he figured out rather quickly that if he moved the ball, the lights would turn on. He also heard his cookie jar "singing" at least three times. I purposely blocked the "nose" on the jar (it lights up) and made sure it was not in his line of sight. I then moved it in his line of sight and while he was busy with another toy I turned it on, and he heard it. He did not hear the cookie jar on his two previous programs. His communication methods have changed. He's now more vocal and is starting to "show" us what he wants. Its hard to explain, but its a step in the right direction....

We called his pediatrician regarding the skin breakdown between his thumb and index finger on his right hand. It was getting better, but stopped when AJ got under a few of the dressings and added more moisture to it. We are watching it closely, changing the bandage everyday and keeping an eagle eye on him to stop him from sucking his thumb and offering him a substitute "chewing option". We are trying to avoid infection. Those foam bath letter really work well. Poor kiddo. His teeth are really bothering him.

So all in all, we are well. Anxious for better weather and more hearing days ahead.

Friday, April 24, 2009

P2 Review

AJ's been on P2 (program 2 of 4) now for a few days. We saw his eyes widening as soon as I lifted my finger off the remote button to bump him up. After that initial reaction, we have not seen anything negative or showing us that the level of sound is bothering him.

He went to toddler group (for the first time in THREE WEEKS) this past Wednesday. While I could tell our absence had decreased his tolerance for sitting during circle time, I did not see any initial reactions to the general sounds in the room (kids talking, teacher talking, singing, etc.)

When it was his turn to put his picture on the board he clearly "heard" his teacher say "Quack Quack" as she helped him put his picture above the duck (he whipped his head around). Wow.

I noticed him looking around a whole lot more at the table during watercoloring. Then it was music time. And I PANICKED. When we first observed the toddler group, we happened to be there on a day when they had music. They have this ginormous drum, I mean the thing takes up half the room. It's awesome, and when we first saw it, of course AJ wanted to play with it in the hallway.

I had told AJ's teacher that I would observe him closely that entire day, just incase the noise level began to bother him, I would adjust his program. When I saw the music teacher go in, I whipped out the remote for AJ's CI and my camera (what an oxy-moron hey?) and watched.

She started with the guitar, which he loved. He cried when she put it away. Then the moved on to wooden blocks and triangles. He wasn't overly thrilled, but he participated and had no negative reaction. Then the big guns came in. All the kids crowded around the drum (which is big enough for them all to sit around). AJ LOVED IT! Now this kid loves drums anyhow, but I thought the sound would just be an overload for him. Nope, not my kid. The teacher and SLP's were all watching him to see if he had crazy eye blinking or flinching going while playing with the drum. He did not. AMAZING. He cried when the drum left the room. That is a reaction I'll take any day. Here is a picture of him at the drum. (I tried opened the classroom door and tried to sneak some pictures without the kids noticing-haha)



He seemed to do better at snack time, again paying more attention. He turned and looked when one of the teachers knocked on the playhouse door. One of the other kids in the group went on the outside of the playhouse and called AJ's name...AJ turned, saw him, and came to the window where he was standing. I cried. I cried a lot that day. Is it really possible in just three days time that he is doing so well?

Following group, we took a gamble and trecked over to Children's for AJ's first Speech Therapy appointment. We didn't know whether he'd participate, but we thought we'd try to make sure he got at least one session in this week.

He did AWESOME! I had already spoken to his SLP and shared all that AJ was doing. She had shared the news with AJ's audi-they are both amazed, as are we. He is "supposed" to be ripping his coil off every three seconds. He still hasn't touched it. Ask any CI parent, that is the biggest battle at this stage of the game-KEEPING IT ON. He responded to a domroo drum, the "Parents" brand drum, and the xylophone. It was AMAZING. I could seriously watch him all day. We've been in this room a million times and he's never responded to anything. Wow. Oh, and an FYI, I found myself asking the cat "DO YOU HEAR THAT?" after the dog barked yesterday. Yes I need sleep, but most of all, asking AJ that question is already routine in this house!!!

He continues to respond to sounds at home and continues to vocalize-a lot. I had heard of some kiddos decrease they're vocalizations...AJ's has increased. YAHOO! Yesterday he responded to the jingle bells I got him for Christmas and giggled again when the dog barked. He did well during PT yesterday, although I will say that his coil is not PT friendly-especially when he's on the ball. Which was actually good, since the PT student that is with our PT was working with him...and I had her place the coil on each time. Now she can say she's treated a child with a cochlear implant.

I also gave one of our sitters a crash course on AJ's CI yesterday. She hadn't seen AJ in a while, so she was amazed at how well he is doing. She was kind of "creeped out" by the way the coil just "goes" to the magnet on his head, but after a few times she got used to it. I think I gave her a pretty good review, for being a novice myself. :)

Today we plan to turn him up to P3. I just cannot believe he is doing so well. AJ, what a great surprise, keep it up buddy!

Thursday, April 23, 2009

Blessings on Paper

While I don't consider myself a "packrat", I do tend to save a lot of things for AJ. I put them aside, knowing I will come back to it later and go through it.

This afternoon I caught a glimpse of "the box" in his closet.

"The box" is something I started after my baby shower. I saved each card from my shower, his Welcome Home Fiesta, his Baptism, his 2nd Birthday, and everything inbetween. I have been shuffling this box in his room for quite some time.

Since his Lifebook is still stuck on our first visit in Guatemala (yep, STILL), I thought it was time to pick out what to keep and include in his book vs. what to part with.

What a trip down memory lane. I seriously think I have the memory of an elephant, since I remember what each person gave as a gift for AJ. (Knowing who and saying thank you are very important things to me) Our little boy has been and continues to be so very blessed. I found my shower invitation, our favorite "adoption themed" card from Pat & Mike, and a hand-drawn picture of AJ & his Guatabuddy, drawn by his Guatabuddy's sisters, and a card with my Dad's signature...just to name a few.

Blessings on paper are such a sweet reminder of the blessings in life.


Wednesday, April 22, 2009

Tuesday, April 21, 2009

Our P1 Superstar

Here is an awesome moment we captured on video last night.

video

Weighing in at a very exciting 21 POUNDS...


AJ had another weight check at the GI Clinic today. We were hoping for at least 20 pounds, that has been our goal for a very long time. On surgery day he was 19lbs 15oz, only 1oz away from 20 pounds.

Today, he weighed in at a whopping 21 POUNDS even!! WHOO HOO!!!!!!

Monday, April 20, 2009

Subtle and Sweet

Well, we have a hearing boy in our house tonight. And it is truly amazing. We honestly did not want him to go to sleep, we've been having so much fun.

AJ's responses at the clinic were subtle, yet sweet. He responded by blinking, smiling, and most of all calming and stopping whatever he was doing when he heard sound. It took quite a while to get a response out of him. Throw in a squishy lizard and a bunch of therapy balls that soothed his teething...that made it a bit more difficult. We were programming for at least a good hour. He sat in his booster chair (which was funny because its the chair we use for feeding therapy so I swear he thought his SLP should be feeding him between the beeps)and did better than we could have hoped he would do.

AJ's audi put the coil on his head to "locate" the magnet and "schhhwooop", it attracted right to the magnet in the internal device. It was weird but cool at the same time. We think we have a good magnet strength for him, not too strong or weak, but time will tell. She asked us to practice putting on the coil. He did not mind the cord/testing equipment being clipped to his shirt. AND, he most certainly did not mind the coil on his head. Hm. Interesting, we thought. Once or twice the coil came off with his movements against the back of the booster chair. Each time we placed it back on, he didn't even seem to notice. Hm. He is a little territorial of his processor/battery pack on his shoulder though. Geez. Go near that and he stakes his claim on it right away. LOL

He didn't have too much response to the beeps/buzzing that she initially ran to test/set each electrode. He had a much clearer response to the live microphone AKA AJ hearing all sounds in the room including our speech (at whatever level he's set at). It was sort of surreal, because we didn't know what to say. They literally had to tell us, "You can talk to him." The whole experience is surreal. We were so busy watching his reactions we forgot to talk. We got over that quickly and called his name, asked what he was doing, DO YOU HEAR THAT?, etc..

I had ordered a CI shirt for AJ, but of course, after I ordered I realized it wouldn't arrive in time. So I used my creative talents, bought a pack of onesies, iron-on transfers, and went to town. When we arrived at the clinic he wore the "Got Sound?" shirt. After he was activated and had his snack, we changed him into the "I Hear" shirt. After he massacred his lunch, we changed him into the "CI Dude" shirt. By the way, the shirt I ordered came this afternoon. Figures!

We left the clinic with, I swear, two boxes the size of suitcases full of equipment, etc.. AJ's audi showed us how everything works, and gave us some homework to complete before his 2-week follow-up on 5/1. AJ was busy chowing down two boxes of raisins while we were learning how to insert/remove pins, change batteries, connect the dots-sung to the tune of the leg bones connected to the...(the coil is connected to the...cord, the cord is connected to the...processor, the processor's connected to the...battery pack, oh how I love CIs!)

While on the way home, AJ turned his head to Daddy's voice and clapping. Hm.

When we arrived home, we thought we might as well do this purposefully before it happens incidentally and scares the crap out of him. So we let the dogs out and had our yellow lab, Sunny, bark on cue. AJ GIGGLED HYSTERICALLY! We cannot tell you how awesome that was to witness. We ate lunch to the tune of AJ vocalizing like crazy! Wow. He turned his head to shaking the dogs food in a metal bowl (behind him) and crumpling a paper bag. We put him down for a much needed nap. When he woke, it was time for OT. No sirree, this kiddo doesn't get a break! :) Truth be told, we would not have forced him to participate in therapy if he was not up to it. He giggled right after we put his "ear" on and reached out for his OT. He did well in therapy.

After OT, we played, and played and played. He happened to pick most of his toys that make sound. A few he didn't respond any differently too than he normally does, but a few he definitely had a different response too. We have been thinking all day...we aren't supposed to over do it. Let him ease into this. Don't put him on overload. But, he's doing so WELL! We even turned on the music channels and he heard and paid attention to music for the first time. Our biggest moment of the night I happened to catch on video. Just wait till you see it! It is truly awesome to see him react to sound and to be able to say, YES, YOU HEARD THAT!

We finished our evening with enchilada's (one of AJ's favorites) and his very own ice cream cake. He is now in bed. And here sits this small piece of equipment next to me. Equipment we have been waiting for what seems like forever for. Equipment that gave my son his first day of hearing today. An awesome day!! He did not touch his coil or processor at all today. He did not react negatively to sound. He may not be hearing things "clearly", but he sure is hearing. We could not ask for more. Nope. Not possible.

He is currently on P1 for his program. We will move to P2 in 2-3 days, then on to P3and P4 in the following days. We'll see if this positive reaction to sound continues. It's Day 1 and he heard 7.5 hours of today. Amazing. We are so proud, and so blessed. We've had fun reviewing all of our pictures/videos from today (Mommy was a little paparazzi-ish).

Tonight's playlist is very special as it the first song AJ has ever heard. The lyrics "Lost in this moment with you, I am completely consumed"...truly fitting for such an awesome day full of such moments.


Get a playlist! Standalone player Get Ringtones



Here are a few videos and pictures of AJ's activation. Remember to stop the playlist above before you view the videos.

Video 1: AJ's reaction to "beeps" from computer (0:03) and our cheers(right in beginning of video), followed by a super cute half-smile to his SLP (0:15)

video

Video 2: AJ's reaction to his audi clapping (0:03-0:05-ish)--(eye batting/blinking a few seconds into beginning of video)


video















Sunday, April 19, 2009

Sounds of Today...

This morning Jeremy and I both woke up with an odd sensitivity to sounds. All different sounds. We suddenly realized that AJ is going to HEAR these sounds. Sounds he has NEVER heard before. Many sounds that are white noise to you and I. This continued ALL day today. We agreed to make mental notes of specific sounds that we heard that made us say "WOW" throughout the day.

Sounds like:
Daddy saying "Good Morning Smiley" when going into AJ's room this morning
Water running in the sink
Chair sliding across the floor
Dogs "clip-clopping" down the hallway
Dogs barking
Us saying "AJ"
Soft rain hitting the windshield of the car
Hard rain hitting the windshield of the car
The sound of a car passing you on the wet road
Windshield wipers
Keys jingling
Cat meowing
Basketball game on TV
Mommy saying "AJ, do you want more?"
Ball popper toy
Footsteps
Sound of the cart at the grocery store
Car Radio
Drawers opening and closing
Door closing
Knocking on the door
Juice being poured into a cup
AJ's giggle/laugh
Us saying "Goodnight. We love you."

That's not even half of what we suddenly tuned into today. We don't know how he'll react tomorrow, or over the next few days. There is no "post-op" sheet with this adventure. Just the hope that your child will enjoy the hearing world as much as we all do. Hope that he will respond well to sound. Hope that in a few years he will be like every other 15-year-old young man...sick of his mom nagging and talking so much. Hope that he will be able to call his Dad to say he'll be home a smidge past curfew. Technology is giving our son the ability to hear. THAT, is a miracle. Our miracle gets his own miracle "turned on" tomorrow. We're as ready as I guess you can be. How do you prepare for your deaf child to hear? I don't know. Sometimes its not so bad not having all the answers.

Sounds of Today...AJ Will Hear Tomorrow.

Thursday, April 16, 2009

The Future

Yesterday, I had the priviledge of meeting another CI/CP Mom and her twin 9-year old boys boys. AJ's SLP had given me her information months ago and we have been communicating through phone calls and email ever since.

Having a child with two disabilities (plus other issues) is a whole different ball of wax. There is so much going on at one time. From the moment we brought AJ home and knew there was "an issue", we felt as though we didn't belong. We really didn't fit into the adoption community because we had a child that had issues while everyone else's child was happy, healthy and progressing. We instantly became a special needs family, with a child that had not one, but two disabilities. No one knew what we were talking about or understood what we were going through. I will admit is has been a struggle trying to "fit in" with other D/HOH children/families as well. Again, we have other factors that come into play. There were no support groups for parents like us. We were constantly looking for the right "fit".

And we found it. I walked in the door and two young gentlemen greeted AJ and myself. I must have been rather quiet (which seems to be happening a lot these days) as I felt like she was pulling questions out of me. I was just in awe of her sons. This family have been through everything that we have in one way or another. Her son was implanted at the same age AJ was (odd to say WAS) and received his 2nd implant more recently. He had normal speech, an amazing smile, and quite the sense of humor. The boys wrestled on the floor and I laughed as I saw two brothers doing what typical 9-year-olds brothers do-they pick on each other.

Ironically, this family moved from Muskego to Waukesha to enable their son to attend Lowell Elementary. This mom is the essence of inspiration to me. I laughed when she took AJ out of his "W" sitting position and knocked on the wood floor as he was laying asking, "Do you hear that?" When I told her that AJ's trip to the ER was what broke me, she understood what I meant and reassured me that these days will pass. We are in a stressful, anxious time of AJ's life, where we don't know what to expect or what we should expect. She completely understands why I am not working. Not having to defend or explain myself? Awesome. She always knows what to say and keeps assuring me that once AJ has sound, things will progress and a whole new world will be open for him. From one CI/CP Mom to another, that sounds like heaven.

Seeing her son yesterday helped me to look past the present and think a bit about AJ's future. This is not something we do often, for obvious reasons. It gave me hope. Hope that some day AJ will be wrestling on the floor with his own sibling or friends with target speech and enjoying life to the fullest. Hope that there will come a day where we are not swamped with paperwork or have to think about his disabilities with such intensity. Hope that a sense of normal can be achieved.

I bawled all the way home. This is such an emotional journey that often we don't have time to feel. I better stop driving as that seems to be where/when the tears flow lately. AJ's future is going to be bright. I just know it. The journey there is the hard part.

Tuesday, April 14, 2009

Frequent Flyers

As I pulled up to the valet at Children's Hospital for AJ's therapy, the valet greeted me with a "Heeeeeeeeeeeeyyyyyyyyyyy!! We haven't seen you in a while." Note: a while is two weeks.

Dear God. The valets know me. That's just wrong. :)

As we were waiting for our appointment, a confused Dad was walking in circles with his son. He finally came our way again and asked for the ENT clinic. I told him it was right through those doors. He thanked me and said it was confusing because the door only says Speech and Hearing Clinic. I made sure to tell him to check in at the right end of the desk, third receptionist.

They don't even give me the paperwork anymore. I could probably recite it by memory. How did you arrive today? Car. How did your child arrive today? Carseat. Does your child have weight issues? Yes. Is someone helping you with these issues? Yes. See what I mean? Once is a while, when we have a 6 month follow-up or something I get the paperwork. But I can fill it out, one handed, with lightening speed, and follow with whipping out my 5-page packet of information on AJ. That way I just write "see attached."

Frequent Flyers? Yeah. I guess so. I wonder where they keep the peanuts and warm chocolate chip cookies???

Spotlight

Yesterday's Journal Sentinel ran an awesome article on Lowell Elementary School in Waukesha. That's AJ's future school! I am certain that this article will bring more awareness of the choices associated with deafness and bring awareness to cochlear implants.

You can read the article here:
http://www.jsonline.com/news/education/42885142.html

Please be sure to view the photo gallery. Deb Schrader will be AJ's teacher. I know I've said it before, but I've never seen anyone so organized and know all her kids. I mean KNOW her kids...even when they've gone on from her classroom, she still remembers and knows their past and present goals. We met many of the children pictured when we toured Lowell earlier in the year. In fact, one of the boy's in the photos blew us away with his language.

I am printing copies of this article for AJ's Packet for the IEP meeting. Lowell IS the school for our little man.

Enjoy!

Friday, April 10, 2009

Turning a Corner

Jen, another CI Mom, left a comment on the blog today wondering how AJ was doing. Thank you for doing so, as I have been meaning to write a new post with updates on his progress.


AJ seems to be turning a corner. His spirits are up and you can just see his strength increasing each day. I mentioned in the last post that he had some awesome fine-motor skill gains earlier in the week. His OT brought some of her evaluation tools to start his testing for his IEP. He accomplished the following:

-Put IN and pulled out wooden pegs from wooden peg board
-MARKED A PAPER WITH A CRAYON multiple times
-Pulled plastic pegs apart with two hands multiple times



Needless to say, we were all stunned! The next day, Daddy witnessed him putting the balls from his ball popper into the hole where the air shoots them up. He didn't just put them in the twirly thing that winds the balls down to the beginning (sorry that's not very technical), he put the ball directly into the hole.
On Thursday his PT came (YAY!) and we discussed AJ's issues at length. AJ still has his trunk stability, which came as a surprise and relief. But he's been a noodle from the hips down. His PT noticed his toes curling when he stood up, along with his left leg in the position of when you "stand on your tippy toes". He wasn't putting much, if any, pressure on his left leg. She suggested wrapping his left calf/foot to give him input on that side as well as resuming a more regular brushing program with him. We ran out of VetWrap (coban) tape before surgery when we used the last of it to practice his head being wrapped. Since he laid on his left (weak) side for the 2 hour duration of the surgery, and had minimal time to bounce back before he landed in the ER, his body really shut down when he got sick last week. If he wasn't feeling good, we probably carried him more, taking away opportunities for him to walk, which cause weakness as well. Oiy.

I also admitted to his PT that I actually try not to have AJ walk long distances. Why? His weight. I am terrified of how many calories he's burning while walking. Seeing his regression, I am determined to get him walking again. Of course we have a weight check the day after his activation. The GI Clinic knows about his weigh-in before surgery and the nice gain we had there. They are not aware of his trip to the ER and what has transpired since. I would venture to say he's fluctated, or dare I say it, lost an ounce or two. That would only be fair after watching his body over the last week. So if they aren't happy, too bad. He needs to do all these things at the same time, something always gives. If right now thats his weight, then so be it. I understand, it shouldn't be a continuous thing, but seriously, I think he gets a "get out of jail free" pass on this one.

AJ's TOD came the same day. We discussed the plan of action for AJ post-activation. I also asked what his expressive/receptive language age equivalencies are. We never really get hung up on numbers, but I needed to know for the boatload of paperwork the state wants filled out.

AJ: 33 months/2 years 9 months
Expressive Language Level: 6-7 months
Receptive Language Level: 8-10 months

That was disappointing to hear. We knew they were low, but as hard as we've worked with him, it still stung. She also gave me the name of another family who has a deaf child (CI user) who also has CP, and who also regressed after surgery. I look forward to talking with them, as well as the other CI/CP family we know. it is just so odd that this happened after he got sick, not post-op.

While his TOD was explaining some of the initial exercises we will be doing with AJ post-activation, she said a word that has incredible power.

SAY.

"We'll say BA BA BA and give him a cue that its his turn to immitate and SAY BA BA BA." What? Come again? My kiddo is going to say something?! The excitment about AJ's activation is finally beginning, although we are still guarding ourselves. I don't know, its just something we've learned to do.



After AJ woke up for his nap this afternoon, he surprised me by schooching down his bed to the floor and walking to me holding onto his bed. More progress, he didn't just crawl. After raiding Farm & Fleet's supply of VetWrap tape, AJ became an 80's child (think legwarmers, gloves, and Flashdance). We noticed he had been sucking his thumb so much and so hard that with all his teeth now, he was beginning to wear down his skin and yeah...it wasn't pretty. So we cleaned, bandaged and taped his arm/hand to prevent him from sucking on his thumb. Of course he can still get the tip of it, but at least the skin crease can heal while we google "How to get your child to stop sucking their thumb as their comfort." We also taped his leg and "treated" him PT style throughout the day. This evening he somehow scaled a Rubbermaid bin, kneeled on it and played the piano, cruised the couch, decreased his toe curling, and took 6 steps on his own. He discovered how to play peek-a-boo with himself and the end table, figured out how to crawl in and out from under the end table, and launched a beach ball at me. I think he's feeling better.



Today was Opening Day for our Milwaukee Brewers, who won 4-3 against the Cubs. WHOO HOO! Go Brewers! Daddy found an adorable t-shirt for him that we had him wear today while we watched the game. He even chugged his apple juice as I am sure many a fan were chugging their ice cold Miller Lite. AJ ended our evening with such a sweet smile, a nice change of pace from the last few weeks.

Wednesday, April 8, 2009

We're Here

We're still here...plodding along.

AJ is feeling better and gaining his strength back. He still isn't walking on his own. He hasn't been to toddler group in a week and a half...and won't return until two weeks from today. This due to CDHH's spring break next week and his activation being the following Monday. So much for peer interaction. He'll attend group two days after he's activated. This ought to be interesting.

Each day he does something that gets him closer to where he was before last Thursday. Yesterday, he climbed up on his airplane on his own. His PT comes tomorrow and we are ever so anxious to have her work with him again. She hasn't been here in two weeks...and we all know I get crabby when I don't have his PT here. We are anxious to hear her opinion and get our homework for the week to help him along. If AJ does not improve we may need to take him to the neurologist.

Of course you know where my mind is going. "Let's do an MRI." Sorry Doc, we can't. He just got his implant two weeks ago and has a magnet in his head. That would be our luck. We are really hoping he continues to improve. Our happy boy has emerged, he was all smiles today, so that was a nice change of pace.

He did have make some awesome progress during OT on Monday. So perhaps his gains in fine-motor skills are also contributing to why he's regressed so drastically with gross motor skills. Of course, he can't tell us what's going on. I'm still looking for the manual for this kiddo. If anyone finds it, please let me know. (No jokes about "no kid comes with a manual" please. Seriously, I can't take it tonight.... We really wish there was one for AJ)

Jeremy's work was kind enough to give him off this entire week which has been an extreme blessing. We've finally had some timet together as a family, time to process the present, past, and future.

We are gearing up for activation, and trying our best not to worry about his upcoming surgery in early May. Not the surgery itself, the post-op is now frightening to both of us. He has a weight check the day after his activation-another thing we are trying our best not to stress over. I bust out at random times (usually while driving) just thinking about AJ hearing. Still numb. Still weird. Still foreign. Hmm.

We're busy preparing his information packet for the entire IEP team and just realized his paperwork for state insurance is due. Such fun. I love paper, but that packet, is just too much. Although I will say it is much easier to fill out this year, with the help of copies form last years forms and knowing all the "LINGO" and how to answer the questions. Last year I didn't have a clue. His therapists are beginning their formal testings/evaluations of AJ for the purpose of the IEP meeting.

So, we're here. More later.

Friday, April 3, 2009

Domino Effect

There are moments in life when you reach your limit and feel as though you've had the wind completely knocked out you. There are moments in life where you wish the world would stop, just for a moment, so you can close your eyes, catch your breathe, and continue on.

That day was Thursday.

Our morning began with a very sick little boy rotating between vomiting and sleeping on the living room floor. He never made it past that 1 hour post-vomit rule for giving a child liquids. After having several phone conversations with AJ's pediatrician and ENT/ CI surgeon's office, I drove him to Children's emergency room. At the very least he was severly dehydrated and we also wanted to check for meningitis (risk with CI surgery).

Symptoms of meningitis include sensitivity to light, sensitivity to loud noises (HA), and a stiff neck. With AJ having cerebral palsy, it was extremely hard for me to tell if his tone was kicking in, or if he really had a stiff neck.

I arrived at the ER to hear the sound of the Flight for Life helicopter on the roof of the building. As I was walking up to the door the rotor blades of the helicopter became a blur as it departed from the rooftop. While looking up I realized that the Day Surgery room we had been in just a week ago was directly above us. Sometimes I wish I didn't have the memory of an elephant.

We were checked in and triaged quickly. They put AJ on the list as the next child for a room. We were lucky enough to occupy a little cubby that looked like it was for bicycle injuries or overflow. Nevertheless, they pulled the curtain and we had our own little area. Thank God. I was not thrilled with the idea of my child vomiting in front of other children in the waiting room. They also put us in there because AJ had an "open" incision from his CI surgery. Yesterday, his incision was a perk.

THREE HOURS LATER we were taken back to the ER. No, we were not pleased. Yes we did speak up, multiple times. One of the nurses was constantly running in and out of the ER checking to see if they were ready for us. Three ambulances came in while we were waiting, taking first priority. AJ passed out on my shoulder. I was thankful he did so. If he hadn't, I think I may have lost it there in our little cubby.

It is amazing where you mind wanders too when you are waiting for...anything. I thought about everything from the blue fabric covering the window, to we really should get boxes for packing, to oh my God this is just like the plane ride home from Houston.

We spent five hours in an actual room. The ER at Children's is like a little city. They were very well organized (which you know this Mom loves). We had an awesome Resident, Attending, and Nurses. AJ received fluids and towards the end of our stay downed two cups of apple juice. He was also given an anti-nausea med. Which, with our experience last week, we quickly asked which medicine it was and quickly asked for the correct anti-nausea med. He was moving his head all around, so neck stiffness was ruled out, as was meningitis. Since he had an IV in his left hand just last week, the nurses put his IV in his right hand. Joy. Somehow he managed around the soft splint contraption they used and was able to suck on his right thumb and fell asleep.

We left at 10pm. I drove to the pharmacy to fill the script for the anti-nausea medicine we requested and pick-up dinner. It wasn't until we left that my hunger headache came on and I realized I had only eaten the peanut M&M's Jer fed to me while AJ was sleeping on me in the ER. The pharmacy technician was such a ray of sunshine (use of sarcasm here). Thankfully by the time I arrived home AJ had eaten well and was already sleeping.

No parent should know the main number of the hospital by heart. No parent should have to sit and wait for their child to be treated for any amount of time (I know, wishful thinking). No parent should have to watch their child suffer-AT ALL. I don't care if that means a boo-boo or watching them enter/exit a surgery.

We have been on the same rollercoaster ride since we brought our AJ home. It has never stopped. And yes, I am taking a moment to do a little complaining. When we were supposed to be jubliant about him being home, we were rushing him to the bathroom up the ramp knowing he was going to be sick again. We were saying "Don't touch him, he's really sick" and speeding to urgent care instead of watching him peacefully sleep in our arms while enjoying balloons and hugs with family and friends. We missed the honeymoon period during the first few months after his homecoming, knowing "something was wrong" and desperately trying to get him the help he needed. We've spent the last year grieving, coping, strategizing, and fighting for our son and his needs. It has never stopped. The breaks here and there that Jeremy and I have taken have worked short-term, but all in all...it never stops. We have our own live version of dominoes falling one by one as we go along.

Today I sit here, the third day of working on this particular post, wishing it would all just stop. I've found myself wondering what life would be like without therapies, doctor's appointments, and watching AJ's every move. Are these selfish statements? Perhaps. What is even harder for us as parents is watching all that AJ has gone through in his short little life. I am constantly reminded of how many scars he has on his tiny little hands from countless IV's in Guatemala. I am constantly reminded how we don't know everything about him. We were not there for the first thirteen months of his life. I wish things could stop for him. I wish he didn't have to work so damn hard at things that come so natural and easy to us. I wish that when people ask me how he's doing I could answer "He's fine." The whole question "How are you?", is a set-up if you ask me. We all want to hear "Fine. Ok. Great! How are you?!" I never have that answer, because something is always going on. I am too truthful to lie or hold it in. Plain and simple.

As hard as it is on us, I can only imagine how much AJ must dislike all of the drama he has been through. We KNOW that everything we are doing will benefit him and dramatically improve his quality of life. We can only hope that one day he will say "Thank You" and not hate us. :)

He is eating and drinking well but is struggling with his balance and has stopped walking. We knew that his day of throwing-up was violent and exhausting. But it has been a year and half since my child was a blob of jello. His regressing back to that was SCARY. We called AJ's PT and discussed a plan to help him regain his strength/balance. His CP is really kicking in while he rebounds. Today he is crawling at regular pace and can stand and take two steps before falling. As he heals and feels better his balance will improve. We have to remember that his body takes longer to rebound from an illness. We were actually lucky that he was up and mobile so quickly after the CI surgery.

I don't think we've really had a moment to savor that our son has a cochlear implant. Early last week we made our decision regarding post-activation speech therapy. We will continue with our SLP at Children's Hospital. His incision is barely even noticable now.

While holding and speaking to our "niece" today, I found myself turning her on my lap, talking and beginning to sign to her while she was staring at the lights across the room. I then though, she can hear me. Duh, Heidi. I guess signing just comes natural to me now.

I suddenly realized that my son is going to hear me. Really? I'm not so convinced. That's a bigger piece than I can chew at the moment. We're supposed to be excited about his activation and then ticker counting down the days. Eh. Ok. Sure. My mind is already ahead of that day, planning for speech therapy the next day and what we can do at home (toys/activities/etc) to help AJ listen. I can't "imagine" it, because I've never experienced it. So long I've been that parent who's child can't communicate with her. Things are about to change. And I'm not so sure I'm ready or know how to handle that.

There is such a thing as too much...but tomorrow is another day. The best part about that? It's a NEW DAY.

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