What Joshua's "Saying" Now

Hi, again! I can't believe I've been able to get to the computer so much today! The boys are behaving very well, and I'm able to catch up on a few things.

I thought I'd share a little about Josh's progress. When Matt was implanted, he had a little more hearing and speech history, he did very well with his CI right away. Well, Josh is doing very well, too, just taking a little longer to reach some milestones. I'm always amazed at how unique each child is, even in the same family! Josh is doing VERY well with his hearing/receptive skills. He is identifying words by pointing to pictures, and is picking up new words much more quickly now. He is following directions, "Put the apple on the table." "Sit down on the chair." "Come inside, close the door.", etc. much better now, too. Oral, without me signing at all. We play with doll house toys, good language builders, too. "Put the Mommy on the chair." "Put the dog in the boat." So while his receptive language is progressing, I've had to put some extra effort into his expressive language.

"The Boys" did some "therapy" with me this morning. I'm not going to lie, I use mini-M&M's to bribe them sometimes. I'll say, "Matt, the cow says, 'Moooooo'." Matt says, "Mooooo". Then I do that with Chris, then Josh. And he does it! He does much better, tries things he wouldn't otherwise, because he wants to be just like his brothers! That's good now, hope it doesn't get him in trouble later. :) After they each do it well, they get a mini-M&M sometimes. I might not win any Good Mommy awards, but candy is a very good motivator in this case. And someone pointed out that brushing teeth is a good oral motor "therapy", too, ha ha!

Back to Josh. He is vocalizing in his therapy so well now it surprises me! Maybe not as great as some kids may do, but he's made some very big personal strides lately. He's doing mostly vowel sounds right now, but it's the right vowel sound, right pattern, etc. I think it's harder for him to say some sounds, though, like "ooooo", because of his lower muscle tone. It takes some good oral motor skills and muscles for the mouth to make the right shape. But it's amazing to watch as he gets stronger in his arms and legs, even walking up and down stairs, I watch him get stronger in his oral motor skills, too! I would have never imagined how those would go hand in hand for Josh w/o all of his prior therapies.

Here's an example of some Josh's vocalizations: Daddy = "ah-ee", I love you. = "I-uh-ouh.", up up up = "ub ub ub", ow="ow", down = ooooww, apple="ab-oh", water="wa-uh", candy="ah-ee", please="eeeee", milk="muh", go="mbo", stop="mah" or "ahp", bye bye=half of the time "muh muh"& half of the time "buh bye".

He does a few of these spontaneous, w/o any prompting, but he does need prompting for some of it, too. I'm very excited to be writing about this, though, because sometimes I work so hard with him I forget how far he's actually come. I think these skills were just emerging when we were leaving WA for PA, I can't remember exactly. But they're very consistent now. Some days better than others. I get very frustrated sometimes, I want to see more with him, but when I remember how far he's come, that only by the grace of God and his CI (grin) he can hear, I am amazed. Matt's speech success seemed much quicker, I can't remember. Josh's had more vestibular problems/issues, but he is really doing well. Such a good trooper!

It's also kind of funny how hard I've worked to help them talk, and then I just want them to be quiet! Maybe that's just me, maybe it's a mommy thing. :) Seriously, Matt talks ALL the time. Never stops asking questions now. He's reading chapter books now, thank goodness! A little more quiet. Seriously, I didn't mind signing with him, but I'm also thrilled with how well he's done with his CI and speech. That's what motivates me to keep working with Josh most days, seeing Matt and how well he's doing.

Well, I'm on the second floor and can hear them fighting in the basement now. Over legos. The funniest thing right now is that Matt is VERY CLEARLY telling Chris how things are, and Chris, my very well spoken little boy is prone to just screaming back at Matt. I am constantly reminding Chris, "Use your words!" Ugh, never stops... :)

Wow! It's been a busy summer!

Well, I just re-read my last post and realized how long it's been since I wrote about the boys! I was writing about Josh having been identified with a hearing loss at birth. Thank goodness for newborn screening, we didn't have that luxury with Matt.

We were only in our new town home for six months or so after Joshua was born. In that time he was identified with a severe to profound hearing loss in both ears, immediately fit with hearing aids.

There was a "salesman" attempting to sell a new piece of equipment to test newborn hearing, so the clinic called me and asked if I wouldn't mind having it tried out on Josh. He was about a month and a half old and I kept him awake for most of a day so he would sleep through the testing. He did a great job! The man put two earmuff things on his ears to pump sound in, and attached electrodes to measure response. Apparently the machine was designed to test both ears at once, at different frequencies. Pretty cool! We were able to show a severe to profound hearing loss in both ears, and very little if any response in the high frequency range. We suspected at that time, later confirmed by CT and MRI, that Josh had malformed cochleas like his brother. Because of this we ordered hearing aids for Josh that could transpose the high frequency input to lower frequency that he may better understand.

Josh did very well with hearing aids for a while. He was a large baby with a large head and ears. We had no problems keeping his hearing aids on, until he was about 8 months old and he started tearing them off on his own. I'm stubborn though, and made sure they stayed in/on his ears. Once we moved to the next home (due to Daddy's job), we immediately started the pre-CI process, to see if he'd be a good candidate.

Josh's ears complicated things a bit, though, as he had massive, horrible ear infections. These greatly affected his balance. He finally had tubes put in both ears at 14 months old, and was finally implanted at 17 months old. He recovered from his CI surgery much better than we ever would have expected and was crawling around the home the next day!

Josh's had his CI for 15 months now, and has been through aural/oral therapy, communication therapy, PT and motor skills therapy. He was a late walker, not moving around on his own much until 22.5 months old. That was 10 months ago, and now he's running around like a little maniac, and climbing everything in site. You think I'd be loosing more weight chasing the three boys around town! I have found it very interesting to watch how his communication skills progress almost parallel to his motor skills abilities.

We have now settled in yet a new home, and I'm very excited that school is starting soon. Matt will be attending mainstream classes, and an an oral deaf/hoh group. He was fully mainstreamed in first grade last year, with a Phonak FM system, and did very well. He will be mainstreamed in the parish school, second grade this year. I think he'd like to be around other CI peers more, though, and I've asked if we could work that into his schedule, too. I absolutely love everything I've heard and learned about the school, can't wait for him to start there.

Chris will be in the pre-K program, same school as Matt, and may possibly be a "hearing peer", too. We've talked about this, and I'm very excited about that possibility for all of us. Chris is already constantly with his two CI brothers, I think he'd learn from the class, as well as be an excellent hearing peer for the oral students. Matt had "normal speech pattern" peers in some of his classes, and I think they were very beneficial additions to the groups.

I've been doing therapy with Josh at home pretty much every day, throughout the day. There are a TON of everyday activities to incorporate into speech/listening/communication "therapy". In our case I believe Early Intervention has been more to teach ME how to teach Josh at home, rather than pure therapy for Josh. We had WONDERFUL teachers and therapists back at our old place, and have been filling the time during the move with good practice for Josh. Just in the last few weeks Josh's skills have exploded, too! I've ordered "Listening for Littles", a great program we used back at our old locale, and can't wait to get it now. Once school starts Josh will also be involved in an Early Intervention program, and will be able to see their speech pathologist, too.

Well, it's been an interesting summer. Matt is already making friends in his new neighborhood. Most of the kids just ask about that thing on his head (headpiece), and then it never comes up again. I think most of us just forget he's deaf at times, a lot of the time, actually. Josh's vocalization is getting better every day, too. His last EEG was clear. It's my mommy hunch that he's had some vestibular problems, similar to what Matt went through at the same age. Josh's a trouper, though, and we're very blessed that he keeps progressing in his communication. Matt and Chris will sit with Josh and me when we do our daily "speech therapy"! I try to do them early because that really seems to give Josh a boost for the rest of the day. Josh really LOVES to sit and do therapy when his big brothers are participating, too. Matt is a pro after going through all of this himslef, and Chris is already a pro having been through most of Josh's therapy with me, too.

I need to catch up on my photos and post some from our long trip. My family has been bugging me to update the blog with recent happenings, and photos, too. I'll try doing that later today. Hope you're having a good end-of-summer day, too! :)

Back to the beginning with Joshua.

I need to get back to our "story". I think I left off with us in having moved to the Town Home. Matt was doing well at his schools, and then Josh was born. He was tested at birth for hearing loss, something we didn't have for Matt. We actually had a feeling he was deaf, so were expecting him to fail is hearing test. I requested to observe the testing, but the nurse who did the testing didn't get the word. The next morning she came in to give me the results and before she said anything I could read it on her face. He failed the test. For some reason she was immediately apologetic, told me of course he'd be retested, could probably hear. Maybe there was fluid in his ears, who knew? I tried to reassure HER that this was okay, we fully expected he was deaf, one of our other sons was already deaf with an implant. I thought it was so strange she was more shaken than I was at the moment. There were a ton deaf folks in the area, surely they had more babies fail the test? She said maybe one a month at their facility.

When she walked out I finally broke down and cried. Bawled. I was wiped out from the delivery, and finally heard what I was expecting to hear. My husband just sat there not knowing what to do, what to say. My best friend there walked in literally seconds later. Her son was in Matt's class, a HA user. I couldn't talk for a few minutes, just sat there and cried. When I could finally talk, I told my husband and friend that I wasn't crying so much for my son and his deafness, as I was crying for myself. Matt was doing so well with his deafness and implant, and here we were all over again. We had to start from square one with Josh. All of the doctor visits, all of the tests, all of the therapies. Sure those were selfish thoughts, but I'm trying to be as honest as I can about what we were going through. At least I can blame it on the hormones after delivery? :)

Well, there we were, a second test confirmed enough to us that two of our three sons were deaf. Of course the test after birth isn't a true diagnosis, but it was good enough for us. We had an official ABR done, and Josh had hearing aids by the time he was a month old. Good thing he had such a bucket head and big ears! They stayed on with no problems.

Oh! Boys are acting up right now, I'll try to catch up more later. As an update on our travels, we're doing okay. Matt had a birthday party last weekend with family we haven't seen in three years. They were all shocked that he could speak so well! It was really cool to hear comments from people who hadn't seen him in such a long time. I forget sometimes how far he has come. Josh did better too, initiating conversation and more approximations than he even used a week ago. Slowly but surely, we move on...

More on Joshua.

I just got Josh dressed and his CI on, and I wanted to share some more thoughts I've had this morning. The CI has been more of a blessing that few could fully understand. When we were at our last location/home, we were very fortunate to have great therapies for Josh. Four different therapies a week, two in home, and two at other locations. For both physical and CI habilitation. Sometimes that therapy was really hard to go through. For all of us. My hubby was in Iraq for a year, too, leaving me at home to deal with this and the three boys. We are stronger for it, but I'm glad at least that is over.

But I really believe that Josh's access to sound through his CI has been a major help in his development. He is much better able to express himself now, and we are finally seeing how much he can understand. His physical development is coming along now, too. Gross motor and fine motor skills. His biggest problem, through my own observations, has been physically telling his body to do something. Once he figures out how to do something, it seems to come much easier. Now we are understanding the seizures may have been getting in the way of his motor processing.

But now that he has his CI on this morning, his input is more clear, I am able to get his attention better, and he is calming down more. I need to get a picture uploaded sometime, though. He just looks like a little angel. I mean he really looks like a cherub! Such a cutie. He even approximated "I love you" after I said it to him. A stranger may not have understood it, but it meant the world to me.

Update on Joshua

Hi! Sorry for the spotty updates. We've been on the road for almost three weeks now, and won't get our new home for over a week from now.

Just before we moved, Josh was diagnosed with a "seizure disorder". He had an EEG and there were some observed spikes. The whole experience was awful, as the techs ignored his CI site (I even made them feel it in the beginning!) and roughed up the site quite a bit. Then wondered why he didn't get a reading on the electrode in that area. DUH! The electrodes were just put on with the goopy stuff, no damage to the kiddo. Other than he screamed, sweated like a pig, the electrodes kept falling off, and it took them 1.5 hours to get hooked up for the test. Half way through they had to wash his head and start over, putting him on a body board and fully velcro wrapping him in. But they did find some possible seizure activity.

I didn't see the doc except for a few seconds when they pulled him in at the end, still confused as to why they couldn't get a good reading on one electrode. THEY NEVER LISTENED TO ME! The doctor barely spoke with me for a few seconds and that was it, he was gone. Then when the results came in I was only able to speak with the referring doc, who didn't fully understand the results, either. He is very experienced with special needs kids, that's what he specializes in. So he talked to me for a while about what he knows about seizures, medications, etc.

After almost three weeks of constant time with Josh, I'm fully convinced he does have some type of seizure disorder. I've had time to reflect on the past, too, and I'm pretty sure he's had this since birth. We just didn't understand the signs, were more focused on his hearing loss and inner ear malformations, thinking those are what caused his imbalance. I've finally gathered up the courage to do some research online, and feel much better after reading stories, "blogs", online journals of other parents who have gone through similar things. We are working hard to get us enrolled in the new insurance region, and will put the pedal to the metal to get Josh reevaluated by a doctor I feel more comfortable with, and then probably start him on medication.

I type this journal online to not only to get my story down for us, but to share with others. I can't tell you how comforting it was to read other stories of families going through similar things. The main purpose of this blog is to document the boys' CI stories, but it now emphasizes even more how very different the journey is for each child.

My heart is breaking right now for Josh. He's having a "fit" of sorts right now that I can't seem to snap him out of. When he gets tired, and he's tired now because he had some shake of sorts that woke him up early, but when he gets tired it's like his brain can't focus too well. I don't know if it's getting worse or if we're just seeing i more because we've been with him so closely lately.

His CI experience has actually been the blessing in our days. H is really understanding more, and is expressing better what he wants and feels. Kind of cool! :)

Well, I'll try to type more later. I'm a bit tired now, and the day has only begun...

Still on the road. :)

We're still on the road, closer to our new home now. I'm working on someone else's' computer, so I will try to continue the "story". I'll have to figure out where I left off, though!

The boys have done very well. We've had no problems with the CIs. The rechargeable batteries have been great! We brought along the packs for their BWPs, to use regular batteries if needed, but haven't had to use them. Their BWP batteries have been lasting all day, then into the next day. We've been turning them off for naps and sleep. Matt doesn't nap much, and he wears his when he goes to sleep. We turn his off after he's out for the night. But both boys start up with the same batteries the next day, we only replace them with charged ones when we have to. We have found that to be very easy.

We've had MANY opportunities to share with people about the boys' cochlear implants. I should have kept a log listing all the conversations we've had with people, it would have been very LONG. Matt went with his Grandma today to pick up his little cousin at school. One of the other kids waiting to be picked up asked what the thing on his head is. Grandma had him explain it to the other children, and they all found it "cool". Matt has never been shy to explain that his ears are "broken" and the CI helps him to hear. He's a cool kid.

Chris is overcoming his fear of water at a furious pace. He's been a cutie through most of the trip. :)

Josh has had a lot of physical exercise, certainly more than he even had with therapy in the past. We were recently at Yellowstone for four days. In the beginning he couldn't run down the gravel hill too well in our campsite. By the end he was whipping down it in no time flat. Up and down, with me chasing him. He walked so much visiting his Grandma and seeing the sites there that he would collapse by the end of the day. He is also into "jumping" just for fun now, too. His balance had problems in the past, and he has lower muscle tone, so this progress has been fun to watch. His word approximations are getting a little better, too. It's amazing how I forget about the muscle tone in his mouth, and how he needs to keep working on it, too.

Well, I need to get going. I'll try to continue the story later.

The Story Continues at the Town Home...

Yeah! The movers didn't take my computer away this weekend! They have to finish the packout by Monday, so it will eventually be packed. IF the house closes in time we may get a laptop. We'll see...

Not long after we arrived, we figured out that the Town Home State was exactly what The Doctor ordered for our family. I was told that there was a large deaf population in the immediate area. Folks everywhere seemed to know sign language. Instead of staring at that weird thing on my kiddo's head, they would come right out and ask, "When did your son get a cochlear implant?" WHAT? They knew what it was? I'm not kidding, that was really cool. They loved to ask Matt questions orally and see how he was doing, too.

I met one great lady at church, and her CI son. I also met another lady at the library, and she has since become one of my all time best friends! We were looking at some of the same books, and got to talking. And I don't know if I was surprised or not by then, but her son was also going to be in Matt's class, too! Never in a million years would I have thought we'd settle into "Hicksville" so smoothly. :)

Once the school year started, we finally sat everyone down for Matt's first IEP. And when I say everyone, there had to be at least 12 folks in that small meeting room! A very involved team, with every possible resource represented. I'll never forget their first question, "Mom, what are your long term goals for Matt?" I smiled and answered, "I want him to grow up happy and healthy, become independent and move out someday." Brief silence and then they all broke out laughing. I have a sense of humor, but this wasn't exactly meant as a joke. They explained that they wanted to know what my long term EDUCATIONAL goals were for Matt and how they could help him achieve those. My response, "I want you to help educate him so he can be happy, healthy, independent and move out someday." BIG GRIN! This time I meant it as a joke, but I still didn't have a clue what they were really wanted. They were very open, explained things well. After hearing so many scary IEP stories, I was pleasantly surprised at how well this one went.

Matt had to be tested by them, a new school system with good, thorough testing. I told them that the numbers on all these tests didn't really bother me as long as his progress kept moving forward. We did identify his strengths and weaknesses, and developed a plan of action.

But something stuck in the back of my mind. At that initial meeting there was a representative from the School for the Deaf. It was explained to me before the meeting that she would be there, even though I had already decided to not send Matt to that school. Professional courtesy, and they worked hard to make sure ALL options for Matt were presented at the meeting. Boy, am I ever glad they did that! At the very end of the meeting, the SFD rep mentioned a hearing peer program they were working on at the school, and the excellent speech therapist that would be on staff. HEARING PEER program at the School for the Deaf? Matt's old School for the Deaf was doing that, too, I think! How cool! Not what I expected from that school. I decided it couldn't hurt to check out the program.

Once Matt was settling in in his public school program, I took him to visit the SFD. Within seconds of entering the building, jut by watching Matt, I knew he had to go to that school. It reminded me of his old school, but had resources they could only dream about. It was so perfect inside, I had to hold back the tears. Matt was checking out the classroom and seemed as if he had found his "home". What an eye opening experience, I was SO GLAD I had opened my mind to all the options that available for Matt.

So we were at the Town Home, and life couldn't have been better! Matt was bused to the SFD in the morning. He was usually in a small group that was stronger in oral skills. His speech therapist ended up being a specialist of sorts in oral motor skills, helped him "find" his k, hard g and c sounds. The classes went on so many field trips it was amazing! After lunch Matt was bused to the public school half-day program for deaf/hoh kids. I chose to keep him here, too, as he had to get used to public school classes. Who knew where we'd end up next? AND I loved the speech pathologist there. She's the one who had over 10 years of experience with CI kids. As a matter of fact, we lived in the same town home building as her first CI student! That boy became sort of a hero for us, he was a perfect example of what we wanted for our son.

I became really good friends with yet another mom from Matt's class. Her daughter is hard of hearing, but has other medical issues as well. I grew to really respect and like this mom, too, because of her strength and coping skills with multiple kids. In reality, I liked her most because she made me feel like it was okay to feel bonkers when the kids drove you nuts. :)

Oh, I hated the thought of leaving the Town Home. But before we were to leave, I had another son, Joshua, my "little angel". Considering at one time we were thought to be infertile, we felt especially blessed to have yet another son. As you already know, Josh is deaf, too. I'll start his story with the next post. My boys are a perfect example of how each child is so unique, even in the same family.