Good News

Ben had his cochlear implant checked and no new electrodes need turned off. GREAT NEWS! His audiologist spent an hour checking every electrode via the computer and then manually while we watched how Ben responded. Based on those responses, we made some minor tweaks - mostly having to do with bringing down the high frequency threshold. And since the appointment, Ben has been wearing his implant while turned on during all waking hours. The timing is perfect too because Ben's last day of school is tomorrow and they have a choir assembly put on by the high school students to attend. Now he will be able to hear it and enjoy it!

Cochlear Implant Confusion... again

Ben had his follow-up today with the surgeon who gave him his cochlear implant. I was very interested in his thoughts on why Ben isn't wearing his implant when it is turned on. We have ruled out behavior reasons because he wears it while turned off about 4-5 hours a day (we want to keep him in the habit of feeling it on his head even when off). He said Ben might not be wearing his implant for three reasons:

1.
He has an ear infection – he checked and he does NOT have one.
2.
He just needs his implant re-mapped/re-programmed monthly based on the different way his brain processes information and how it is always changing. Kids with CHARGE and kids who have had strokes don't process information through the same brain channels as you or I would. They have to find a different way around the damaged areas and he suspects the auditory channels work the same way.
3.
He is having a soft failure of the implant, which happens less than 1% of the time and we are HOPING this isn’t it. A soft failure is harder to detect than a hard failure, which is just the implant processor giving you an error. A soft failure is when over time, an electrode here and there stops working and needs to be turned off. Eventually, so many give out that the implant isn't functioning. During our last mapping, two electrodes were not functioning and had to be turned off. On Monday, we go back to Audiology to check into this further. If any addition electrodes need to be turned off, he suspects this might be happening. A catscan under sedation would then need to be done. If it is a soft failure, then ALL internal hardware (which has been placed right by his brain) needs to be removed and new hardware needs to be implanted. Because Ben was such a difficult implantation, the doctor is worried about having to perform the surgery again.

We are praying it isn't option #3. Will keep you posted after our appointment on Monday with Audiology.

Blood Work Results are IN!

Ben's blood work results came in and I'm pretty excited with the news. His Vitamin D is very low. May seem odd that I'm excited over a low reading, but that just means we don't have to put him through further, more invasive testing of his growth hormone for now. Instead, he needs to add a Vit D supplement to his diet and retest his blood again in 6 weeks to see if his number has raised (the future blood work is the only down side). If it has, our hope is in time his bone density will also increase - but that is a slow process.

An Apple a Day Keeps the Doctor Away

If the old saying is true - "An Apple a Day Keeps the Doctor Away" - then Ben should be in good shape! Ben has this love for my bowl of fake display apples. He LOVES to play with them... and not in the way you would think. Since the apples are so motivating, I figured this was the perfect time to work on having Ben use his sign language (Ben has shown us through picture cards that he recognizes the sign for about 60 nouns/verbs, but was only signing two things himself - "more" and "shoes"). So I started working on "sit" and "apples". Both requests he needs to do for apple play. "Sit" is because he needs us to sit him in his highchair first. It is amazing what a little motivation can do. It only took a day or two of hand over hand every time he wanted the apples for Ben to realize that when he signed these two things, he got EXACTLY that. I didn't start taking the video until after he signed "sit" but did get him doing "apple" and "more" and EVEN using them together to request more apples!

Pillow Talk

Ben recently started using a pillow. Even though Ben still needs to be in a crib for safety reasons, dad still thought he would be more comfortable with a little pillow under his head (and I figured typical kids would have a pillow at this age, so why not). I found the perfect one online and Ben took right to it. And I do think he is sleeping better on it - doesn't toss and turn as much. Here is Ben enjoying a nap on his new pillow (yes, he is sleeping in the photos but does so with open eyes because of his facial palsy).

School Photos

Ben’s fall school pictures came back today… he wasn’t cooperating with them this year and they took him down on three different occasions to try and get a good photo. The picture place sent home two packets for me to pick my favorite. I liked both for different reasons – one he is angry and getting ready to pull off his trach nose, which will always remind me of what Ben was doing at this age… a lot of trach pulling. The other he is wearing his implant and showing off his cute cowlick at the back of his head, which I also like. I called to see how much extra I would have to pay to keep both and was thrilled when I was told nothing. So here are both shots.

All good things come to an end...

Ben's soccer season is officially over and he had his last Hippo-Therapy session for the fall. We've grown accustomed to having all these activities to take Ben to, I don't know what we are going to do with ourselves now. It's going to be a LOOONNNNG winter for Ben :)

Trick-or-Treat

Ben was a giraffe this Halloween. I under-estimated his size, so his costume didn't fit. After a few modifications, we made it work.

Or so I though... the hood wouldn't stay on. So Ben went as the headless giraffe and his car became part of the costume.

Something about the padded belly gave Ben super strength and he kept on getting on his stomach and pushing up really high... higher than ever before! I've saved the costume for future therapy sessions.

Pumpkin Patch

I wanted to go to a real pumpkin patch this year with Ben where you could actually go in the fields and pick pumpkins (we recently purchased a van and now we can fit his wagon in the back). The patch I choose was close to home, but was a real working farm so it ended up being inaccessible for Ben's wagon - I don't know why I thought it would be, but I did. And as it turns out, Ben isn't a fan of pumpkins. It could have something to do with the fact that he wanted to go for a long, quick moving wagon ride, not a stop-and-look/take pictures ride. We grabbed three pumpkins by the checkout, snapped a few quick pictures, picked up Ben's thrown sunglasses and hat about 10 times (he does this when he is angry), paid and left. This all happened in about 5 minutes. Don't think we will be doing this again next year because it ended up being better in theory than reality. But nonetheless, here are our photos...

Even Dad couldn't convince Ben that stopping to take a photo was ok.

If you click on this photo to enlarge it, you can see the field of pumpkins. So neat!

I tried to get Ben to pose with a little pumpkin... he tried to push it out of the wagon.

Charge It For CHARGE

I know times are tight for everyone, but if you give a holiday donation to an organization, please consider the CHARGE Foundation. And no amount of money is too small. The CHARGE Foundation can use every penny donated.

Right now we are participating in the "Charge It for CHARGE" campaign - we would really LOVE to reach our goal! This is the first year we have participated.

We were fortunate enough to receive a first-time attendee scholarship from the Foundation to attend the biennial CHARGE Conference this past June. The conference was life-changing for us and we learned so much. Without the scholarship, we may not have been able to go. The Foundation relies on donations from this current annual campaign to fund publications, research programs and the biennial international conferences. They do so much for individuals and families affected by CHARGE.

To support our Family team, visit:
https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=324400&supId=273901083

School, Trach Pulling, Parade and more...

It's been a while, so I thought an overall update was in order:

School - Going really well for the most part with only about 1-2 major meltdowns a day. Ben seems to be picking up where he left off last year with his sign language recognition. Another great team working with Ben this year. Later this week will be school pictures and a visit

from our local fire truck/department.

Trach Pulling - I'm not sure if Ben has gotten better at not trying to pull out his trach or we have gotten better stopping him before it happens. Maybe a combination of both. Ben still goes for the trach every time he gets angry, but doesn't seem he is getting as angry as often. And, when he goes for it I don't think he is really trying to pull out the trach. I think he is trying to take out the gauze underneath the trach and the artificial nose that sits on it. But, we don't take a chance and try to stop him before he can do anything.

Follow-up of Urology Surgery - Ben had his follow-up from his testicle procedure. The doctor was happy with his healing and said he doesn't need to see us for a year!! What great news! I look forward to the day when all 18 doctors only need to see Ben once a year, but until then this is still a nice treat! They will still follow him with yearly ultrasounds to make sure his urinary track reflux hasn't returned.

Hippo Therapy - Ben will start Hippo Therapy (horse back riding with an Occupational Therapist) in October. It's been a while, but I'm hoping he jumps right back in the saddle (literally) and enjoys it again.

Mum Parade- We took Ben to the Mum Parade this past Saturday. My mom and dad set up chairs early to ensure we got a good spot. When it was time to start, we walked Ben down in his wagon. Last year, Ben only had the patience to sit about 15 minutes. This year, he sat in a little chair the entire hour! I was shocked and so proud of him. And, every time someone handed him candy, he collected it all in a little pile on his left. He was so particular with where every piece went. It cracked me up.

He Shoots, He Scores!

We signed Ben up for Wheelchair Soccer this fall through TopSoccer. We are very fortunate that the location they play at is only a few miles from our house. Last Wednesday evening was his first practice and today was his first game. His team name is "The Rollers" and on game day they play each other. They even have cute little uniforms (we went out and bought some soccer-like shoes to complete the ensemble). Some kids ride in power chairs and other have buddies (or their parents) push them. Ben is the youngest and isn't too interested in the game yet. He does enjoy just being out there hanging around - as long as you keep him moving.

The TopSoccer organization is truly wonderful and everyone involved is so nice. I would recommend it to anyone with a special needs child. They have teams for all different abilities and ages. All the kids get to score and it is just so nice having an activity especially made to accommodate them and their needs.

Ben and his dad all geared up to play - boy was it a hot one today on the black-top.

Ben got the pleasure of kicking off to start the game -- and he did just that!

Ben guarding the goal... at least he was until he decided to kick off his shoes and distract dad allowing the other team to slip on by and score. (Ben ended up holding his shoes the rest of the game and occassionally would throw one when he got angry - I like to think he was trying to create a diversion.)

Sitting there holding the rope that marks the field was Ben's favorite part of the game.

Back in School

Ben's first day of school is today. He seemed really excited this year. I'm looking forward to picking him up so I can hear all about his morning (we have decided to drive him to school instead of riding the bus because he is still pulling out his trach when he gets angry -- yes, he did again over the weekend)! He has the same one-on-one aid, but a different teacher and different classroom/students.

UPDATE: Ben had a GREAT morning at school. He seemed like he jumped back in where he left off. Only a few upset moments and he wore his implant the ENTIRE time! He also used his new pony walker to walk to and from recess and the muscle room. I'm so proud of him!

Driving Ben and his nurse to school

Look, I'm actually wearing my cochlear implant!

And off we go... my trusty wagon and aid were waiting for me.

School, Nursing and Much More...

Ben's first official day of Preschool is next Wednesday, September 9. I'm excited for him and anxious to see how he adjusts to a schedule again. We had our home visit with his new teacher. She seems great and was really receptive to working with Ben's little "quirks". His WONDERFUL aid from last year will be with him again this year. Having that consistency is going to help him hit the ground running this year. He will be attending morning sessions again this year and will be going Monday through Thursday. We are also hoping he successfully rides the bus again this year (the buses this year will pick up Preschool, Kindergarten and 1st grade instead of just Preschool on one bus). I can't believe how fast this summer went.

We have had Ben's new Monday/Tuesday day Nurse work twice and she has done great with him. I feel confident that she will be all set to go to school with him next week. What a huge relief! Our other day nurse has been with us for years and she is excited to start another school year with Ben. She will go to school with him on Wednesday/Thursday.

We received the fall sign-up for Hippo Therapy in the mail and I'm really hoping we get a spot. Ben is fully recovered from his testicle surgery and able to ride again. I hope he hasn't forgotten his love of horses! Fall session is on Saturday mornings, so that will be a really nice family event for us to do together 3 Saturdays in October. I just LOVE Hippo Therapy!

I also wanted to give a quick update on some of Ben's labs/tests that I previously mentioned. We have decided not to do any further testing regarding his thyroid. After talking to his Endocrinologist, we've decided to wait for now and retest in another year. His Endocrine Doc wasn't as concerned with the numbers as Ben's Pediatrician and since thyroid falls under the speciality of endocrinology, I decided to go with his advice. Ben also had a bone age test and a bone density test (two different tests). Ben's bone age was normal, YAY! However, Ben's bone density was low. We are going to start Osteoporosis meds for his low bone density and he will be retested in a year (since the meds take a long time to really make a difference). Because he doesn't walk or weight bear, his bones are more brittle. We really need to work with him more in the Stander and/or Pony Walker. Now that he is all healed up from surgery, there's no excuse. We went back in to Audiology for another mapping of Ben's Cochlear Implant. We went even lower this time and checked the integrity of all of Ben's internal electrodes. Everything tested fine. I am able to get Ben to wear his implant for 15 minutes a day now as long as I sit next to him and hold my hand on his head over the implant (Ben insists on this, and the only reason I can figure out why is that it's comforting). He isn't getting much sensory input from the current mapping, but definitely a start!

And last but not least, Ben pulled his trach out on Sunday (the second time in 4 years this has happened). Ben can not breath at all with his trach out and it really gave him a scare (us too). He somehow flicked it out with his ties still on. He is doing fine... both Mike and I were home, thank goodness! We got it back in, started a little Oxygen and he was back to himself in no time. I was hoping this would scare him from any future trach pulling, but no such luck. Later that night, Ben was back to throwing the nose that sits on his trach. I just took this incident as a reminder of how fast something like this can happen and how I always need to be in the room with him. If I have to leave the room, I need to make sure to check every few minutes (literally, because that is all it takes). I know I have been getting more lax leaving Ben in a room by himself to throw in a load of laundry or check email. This reminded me of why I need to have an eye on him at all times. He sure keeps us on our toes!!

Cochlear Implant Confusion

Our CHARGE kiddos sure keep us guessing, don't they?! Ben hasn't been wearing his cochlear implant AT ALL since he was sick this during the winter. For the past month, we have been working on Ben wearing his implant while it is turned off to get him use to having it on so it could at least be programmed. On Monday, we had our first appointment to remap his implant since he stopped wearing it. It also happened to be with the new CI Audiologist. He was wonderful and had a lot of background information because he use to work with both adults (who can tell him what the implant is doing and feels like) and kids (who can't always tell you).

He tested the electrodes on the implant and they showed signs of not being stimulated (no surprise there, he hasn't been wearing it). He then went through five different electrodes and got some high/low thresholds. From that, he remapped/reprogrammed Ben's implant. We are basically starting all over at a very low volume to get him use to it again. What he hears will be a very soft whisper and we will gradually step up. Ben was happily wearing his implant in the office after the new programming. I was thrilled! When we got home and after Ben's nap, I tried the implant again. Ben was fine when I put it on UNTIL I actually turned it on. He then pulled it off and started crying. He acted like he was in major pain. He wouldn't let me even get close to him after that with the implant in my hand. So confusing! It was like he got a shock when it was turned on. We talked to the Audiologist and we are stumped. We are going back in next Monday to try again. Could the implant sound different when hooked up through the computer (which is how it was in the office) vs how it sounds running on battery at home?

Family Photos

Thank you Jen for taking these! We love them and you did a great job.
(Below are some of my favorites)

(My brother was using a stick to get Ben's attention. It did, but then Ben started throwing a fit until he got the stick. The stick then became a photo prop)

(This picture makes me laugh because Ben pulled off his trach valve and stuck it on his finger for the photo and was quite impressed with himself.)

High Thyroid Function

I got the results back this morning from Ben's blood work. His thyroid function test came back high. It said he was 3.3 and the normal range is 1-2. Additional blood tests are now being ordered, but I'm hoping one of our blog readers can offer some insight. Do any of your kiddo's with CHARGE have high Free T4? Did you have to start treatment? Is this "normal" for CHARGE kids? Anything you can offer is appreciated!!!

On a side note: took bandages off (boy did it hurt and oh my goodness are those things sticky) and the incisions look good.

Time to Remove the Bandages

Today is the day we are suppose to take off Ben's bandages. They haven't budged a bit, so I'm not sure how to tackle their removal. I'll do my best to make it as painless as possible though.
And other than needing some Tylenol during sleep time, Ben is acting like his old self. What a tough cookie he is!

School starts on September 8 and I'm excited to get him back into the swing of things. We have found a day nurse for Monday/Tuesday and I think she is going to be a perfect fit. Ben warmed right up to her, so that's a good sign. He wanted her to tickle him :)

What a Difference a Day Makes

Ben has been recovering wonderfully. Friday morning seemed to be the worst of it and he has continued to improve since then. What a difference a day makes! Thank you everyone for all your prayers and well wishes.

Home for the Hospital

Ben's surgery today was a success. They were able to do everything in one procedure. It took about an hour longer than expected, but Ben did great while under anesthesia. We are home from the hospital now (my mom is here to help us take care of Ben since we opted not to have a night nurse tonight). We really pushed to go home since we knew Ben would be more comfortable. His pain level right now is pretty bad though. They ended up doing an open procedure instead of laproscopic after inserting the scope so he has 6 different incisions. Since Ben doesn't tolerate Tylenol with Codeine, we are only left with the option of giving him regular Tylenol and Advil combined since we are home and anything stronger could hinder his breathing. I hope I made the right decision bringing him home so soon.

All of Ben's Favorites

We had a very low key birthday for Ben this year. We opted not to have a party for him since he has surgery this coming Thursday and we didn't want him catching any bugs that would cause surgery to be canceled. Instead we decided to do everything that Ben enjoys on his special day (actually, it was the day before AND the day of).

My mom was down on Saturday to keep me company since Mike had to work that morning. We started the day with a little TV time (Handy Manny).

We then took Ben to the grocery store to ride around in the cart (as always, the completely wiped down and sanitized cart - not taking any chances). A big favorite of Ben's though!

He then got a ride on his 3-wheeler. He hasn't ridden this since last year and I still have to walk beside him to make sure he doesn't fall over, but he is so much stronger this year. He sits up so big and tall now!

Then, we took him for a LOOONNNNGGG walk in his wagon and got to enjoy rubbing some cars on his way (also a favorite). We happened to walk by a great garage sale too and got Ben some clothes, a Halloween costume and toys at a really good price.

When Dad got home, Ben was treated to some "tickle time". Dad gives the best tickles and gets Ben howling with laughter. I have to remind Dad to give Ben breaks to catch his breath.

We then had some cake and ice cream, opened gifts and put him down for a nap. For a kid who doesn't eat anything by mouth, Ben sure grabbed up the spoon and stuck it in his mouth. I couldn't believe it!

Today we did a lot of the same. Ben really seemed to enjoy his day(s). Thank you everyone for all your birthday wishes!!

Too Many Appointments = Too Much To Handle

Ben has had WAY too many doctor's appointments since last week and I've learned that we just can't do so many so close together in the future. Not only is it too emotionally difficult for Ben to go through so many different tests/exams/etc., it's too emotionally difficult for me.

I'm stressed for him and on edge because he keeps on getting so upset, which in turns causes him to try and pull out his trach (yes, the joys of the trach). Then when I'm given the results from the doc, the news seems to take a bigger tole on me (if it isn't good news, which it hasn't been). I think I can only handle one or two negative results a month and those results CAN'T be communicated on back to back days or in the same day. So I'm now trying to do a juggling act of what appointments to schedule and what ones to put off for a little longer. And trying to avoid as many hospital visits as possible during the cold/flu season. It is just so hard when you have 18 different specialists wanting to see him so often!

Today's first appointment was with Opthamology and Ben's vision has gone from no nearsightedness to pretty significant nearsightedness in one year. We also got a bone density Xray. Haven't heard those results yet.

Ben is still scheduled for Urology surgery on August 13. I'm dreading it and the date seems to be creeping up on me. Our original surgeon has gotten really ill and we now have someone else doing the procedure. We met with him yesterday and he gave us a detailed case by case scenario of what could happen based on what he sees (this surgery is to bring down his testicles which are more than likely in his stomach). I didn't realize that this procedure might have to be a two-step surgery based on how things look. I have full faith in the new surgeon and I'm praying for a straight forward one-step surgery. Please keep Ben in your prayers on the 13th.

We are also looking for a new day nurse to go to school with Ben on Monday and Tuesday morning. School is only 3 weeks away and we don't have any candidates yet. I just need to take a deep breath and regroup!

On a positive note, Ben will be turning 4 this Sunday!! I can't believe it was already 4 years ago that we started this journey with Ben. Ben enjoys opening gifts so I'm looking forward to watching him tear some paper. I also ordered him a Handy Manny cake and he will get some tastes of that (I hope he tries a lot of cake because I ordered a pretty big one for just Mike, Ben and I). The one gift I can't give him that he needs the most though is to stay healthy before his surgery!

Back from Conference

Mike and I are back from the CHARGE Conference and the whole experience was amazing! We learned so much, met some of the families we follow via the listserv/blogs, met some new families and met parents whose CHARGE child is now in heaven. We also had the opportunity to have breakfast with the founding father of CHARGE Syndrome. For the first time ever, we felt like we were surrounded by people who just "got it" and words can not describe how great that feels.

I'm glad we waited to go to the conference until Ben was past a lot of his major medical surgeries. Two years ago I think it would have been too overwhelming and emotional for us. Life with CHARGE is so complex and involves so much - and the conference is a reminder of that. Families have to manage so many major medical issues that doctors don't see very often, let alone all combined in one person: muscular and skeletor issues, neurological problems, feeding issues, deaf/blind obstacles, balance problems, airway issues, behavioral problems, autistic tendencies, sleeping problems and more.

The conference armed me with new information and research from experts in our field to take to our doctors/teachers to help with all the above issues. Some of what we learned contradicted what we've been told from doctors. One major thing we've learned is that Ben IS probably considered deaf/blind even though his vision issues aren't severe. But the issues he has combined with his hearing loss are enough to qualify us for services. Also, we were told not to give up on Ben walking one day (despite what the Ortho doc said). At the least, give him until 10 years of age before starting to equip our house wheelchair accessible. And at 10, if he is still showing the desire to walk, continue to give him more time. That was worth the trip in itself!

We are very grateful to the CHARGE Foundation for the scholarship they give first time attendees to cover the conference fee. That was a huge help! In 2011, the conference will be in Orlando, Florida. We are going to start saving now! The next trip we would like to bring Ben.

Exploring the House

Ben has been doing great lately. He made the switch to full feeds with ease and we have been keeping very busy with lots of guests and picnics.

Today, Ben started doing something he hasn't done since he leg break in December of 06. He started expoloring the house! He has been scooting EVERYWHERE and this time, he is doing it with much more curiosity. He really studies everything and notices things he hasn't noticed before. It is so great to see him wondering (by wondering I mean on the floor and on his back of course) and really getting into things the way a little boy should.

His favorite activity today (and there were a lot to chose from) was unrolling the toilet paper. He made his way into the bathroom and was reaching really hard for the roll. The tippy top of his fingers were the only thing that could touch the roll. I let him keep on reaching because his arms are so tight and it was a really good stretch. After enough touches with the tips of his fingers, his dream came true! A square of toilet paper flung over and he snatched it up and gave a big pull. Needless to say, he unraveled the whole roll and had a great time. We will be keeping the door closed to the bathroom in the future but I had to let him have his fun this one time :)

This Thursday through Sunday, Mike and I will be heading to Chicago for the CHARGE Syndrome Conference. I am SO looking forward to it but also very nervous. This will be the first trip Mike and I have taken in 4 years. My mom will be here watching Ben - thanks mom, what would we do without you!

Still in the process... and still going well

Yes, good news! We are still in the process of switching Ben's formula. He is going to jump up to full strength tomorrow and it is going well so far. Some minor bowel issues but nothing a little decrease of his daily laxitive can't help - we hope. It has been a pain free transition!!

So far, so good...

I hate to even write anything in fear of jinxing myself, but so far Ben has tolerated the first step in switching his formula for two days. Today I plan on trying a 50/50 mixture and sticking with that through Sunday. Thank you to everyone for your kind words of support! I'll keep you posted...

Switching Formula

We are finally switching the baby formula Ben gets via his feeding tube to a toddler formula. Both GI and our Pediatrician have been wanting us to switch for a year now, but the timing was never right.

I didn't want to do it during a school week because I was afraid he would miss so much school if he had trouble tolerating the new formula. The process of switching him over takes about a week if all things go well since we have to mix the two together and step up gradually. So I had intentions of switching him during Christmas break. But then he was so sick with pneumonia and the flu the whole time it was out of the question and unsafe to switch then. Plan B was Spring Break, but ENT decided a scope was in order and I didn't want his airway looking bad if he didn't tolerate the new formula. So here we are in July and Ben has his annual GI appointment on July 10 (I've already rescheduled two times because I didn't have him on the new formula yet).

I knew I HAD to have him switched over by this date and I couldn't cancel his appointment again. It gave me a deadline and I really needed a deadline because I've been putting it off as long as possible (I have major anxiety over changing his food). Last year when we tried to switch, it was awful. After just receiving 1 ounce of the new stuff mixed in the old stuff, Ben got violently ill for 24 hours (that is how long it took to get e1 ounce out of his system). I think both Ben and I are still traumatized from that day. Not to mention Ben has so much trouble with feedings and rates anyway and we are FINALLY at a point where he doesn't vomit or retch except when sick. And it took us about 2 years to get here... so why mess with a good thing, right?! Well, I guess his baby formula doesn't provide the nutritional breakdown he needs at his age... so food change here we come (we are trying a different formula this time though and it is suppose to be more hypoallergenic/broken down than the last kind).

Today through the beginning of next week was as good a time as ever to start the process because neither Ben or I had any appointments. Today from 12 pm - 3:30 pm he had a little bit of the new stuff, some water (which he has also never had before) and mostly his regular baby formula. I'm happy to say, so far - so good! Tonight will be the true test because he eats from 8 pm - 8 am. If that goes well, on Thursday we will try a 50/50 mix (including water) and so on and so forth. I'm really hoping for smooth sailing! It kind of makes me sad to think about the fact that Ben is almost 4 and has never had anything but non-dairy, hypoallergenic baby formula (Allimentum). He's had pea sized tastes of pudding, ice cream and a few stage 2 baby foods, but nothing really that his body has had to digest. He doesn't get to enjoy some of the simple pleasures of life, such as eating.

Who Needs a Pool?!?!

It has been perfect pool weather here in Cincinnati - 90's and sunny! For my enjoyment, I turned our hot tub down to 88 degrees and started using it to cool off and relax on those hot afternoons. Today Mike and I purchased Ben a pool floaty to use in the hot tub. I figured if I found it relaxing, so would Ben... and he sure did!!

We had to be very careful to watch that water didn't get close to his ear openings (to prevent infections with his cochlear implant) or his trach (because if water got in his trach it would be like drowning since it goes straight to his lungs). It was a two person job but well worth it!

Hippo Therapy - Week 2

Words cannot express how tickled I am about Ben's 2nd week of Hippo Therapy. He did AMAZING and actually enjoyed it. He wanted to get on the horse this time (he rode the pony Dixie) and rode around and around for 20 minutes without fussing once. And the lack of fussing meant he didn't have extra secretions so we didn't have to suction at ALL during the ride! I was beaming the whole time and couldn't believe my eyes. I'm sure I sounded like a broken record because I kept on saying "I just can't believe how great he is doing".

The best part is that after I decided he had enough (he could hardly keep himself upright even with myself and the OT holding him up) and we took him off, he cried and tried to reach for the helmet to put it back on. He wanted more!! Truly amazing and such a difference from the first week. I am so proud of him and he shows me time and time again that I should never doubt him.
Ben has two more sessions left - they are Monday night at 6:40 p.m. - and I hope the next two go as well as this one. We will try to get him in for the fall session (the 1st summer session is full and the 2nd session is during the time when Ben has his testicle surgery so we won't be doing that one).

Hippo Therapy

Sorry it has taken me so long to post about Hippo Therapy. It hasn't been the best week in the Russo Household.

Hippo Therapy went so much better than we expected!! With that being said, it was still a traumatic experience for Ben and he cried the entire time (poor guy, doesn't he know horse riding is suppose to be fun?). We were shocked and thrilled that Ben was willing to wear his riding helmet without a fight. Even more exciting and shocking was that Ben didn't try to throw himself off the horse and held on to the appropriate bar during most of his ride. However, the ride was only three times around and each time he got much more upset and purple from holding his breath. I think part of that was due to us having to take him off the horse and suction after every lap. Ben would think he was done and then we would plop him back on. Not to mention straddling the horse was the biggest groin stretch he has probably ever gotten and I'm sure that was pretty painful for him... but we need to stretch him out and since he won't let us do it this is our only option. Ben didn't get to ride the pony Dixie like we originally though. They were short on staff that day and had to pick two horses that everyone could ride. Ben rode horse Ben... what are the odds of that?!?! And horse Ben is NO PONY... he is a full sized horse but a very sweet one at that.

Below are some pics from the session. We are going to give it another shot next Monday and see how it goes.

Ben in his rider helmet. He looks more like a motorcycle cop than a horseback rider...

Ben meeting Ben. I'm sure he thought, "this guy is HUGE - where's that pony you showed me the picture of?"

And Ben making his way around the ring... not a happy camper.

Pony Walker

We finally got Ben's Pony Walker! I am hoping Ben will take to this and it will eventually give him some Independence. It is very easy to move in which is good for Ben who doesn't have much leg strength.

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Pics from Last Day of Preschool

Ben after having a few delicious tastes of vanilla ice cream with whip cream.

Ben, his AMAZING aid Ms. Helga and his favorite friend, Ella.

Ms. Helga, Ben and his wonderful teacher Ms. Stephanie. Ms. Stephanie went on maternity leave half way through the year. We were so excited to see her (and her adorable little boy) at the party.

The end of the craft project... make a visor. Ben wouldn't look at the camera during this craft so we thought if we slid the visor away he would. Nope, he just wanted the visor back.

Who's the Boss?

Since Ben started summer break, he has been trying to rule the roast at home. To say he has been obstinate is putting it mildly. We are trying to incorporate a lot of his school activities into the home. Some of his favorite ones he refuses to participate in at our house!!

We are also trying to incorporate his schedule system for the day and the free time choices into our routine (I'll explain those at the end of the post). Ben has been using both of those successfully all year! However, at home he acts like he's never seen them before. He is covering his eyes so he doesn't have to look at the cards and he keeps his arms so tight against his chest I can't do hand over hand to make him grab a card. And when I grab one for him and set it on his chest (usually Ben's eyes are covered), he uses his fist to knock it off his chest. If I make him just lay there until he gives in, he criest and starts trying to pull out his trach. Tonight he even started yanking on his trach any time I simply signed "no".

Then we had a 15 minute standoff because Ben wouldn't pick between his Mickey Mouse card or Handy Manny card to tell me what show he wanted to watch (keep in mind he ALWAYS picks which show he wants). I was certain Ben would break first. I battled through the tears and didn't give in. I fought off the attempts at pulling out his trach (with Dad's help). I ignored his full body thrashing and pretended not to notice the eye covering... but he never picked anything!!!! GRRrrrrrrrrrr! It is making me crazy. The only thing I can think of is Ben knows that is the activity he does with his school aid... and I'm not her! AND our house is by NO means school. It is a full fledged battle of the wills now and I'm ashamed to admit he is winning. We miss our school aid!!! She needs to move in!

Schedule System:
I have picture cards of all the daily activities he may do - TV, bath, tie change, dr's appointments, nap, etc. We pick out the three cards of the next activities Ben is going to be doing. We put a card in each compartment of a three tray plate (a right one, middle and left). Ben is to take from left to right - pre-reading skill. That lets him know what he is going to be doing, and then what he has planned next.

Free Time Choices:
We have a cookie sheet with magnetic picture cards of all the fun things Ben likes to do - walk, pony walker, play in garage playroom, etc. When he pulls the card on his schedule that says "Play Time", he gets to pick from the cookie sheet of activities.

Bitter Sweet

Ben's last day of preschool was yesterday. They had a party and an ice cream social. Since Ben is now able to work on feedings, I gave him some tastes of vanilla ice cream and whip cream. YUM! What a way to end the year.

Finishing his first year of preschool was bitter sweet. I'm so impressed and overwhelmed with how much Ben learned this year. He far exceeded my expectations and I never imagined he would work so hard for his aid. They really formed a close bond and we are really going to miss her over the summer. All the wonderful memories I have from this first year will be with me forever. And, I have also learned so much from this first year in school.

But, I'm also sad. Some of the team members will not be with us next year - and some we don't know if they will yet. All the friends Ben made at school will be moving on to Kindergarten (they are all 5, where Ben is still only 3 and has another year or two of preschool). We will miss them so much and they have become so comfortable with Ben. By the end of the year, his friends were fighting over who got to pull him in his wagon, sit next to him at circle time, etc. Some of the kids even sent home their artwork/projects with Ben because they wanted him to have it. You can't ask for anything sweeter than that!

We will definitely miss everyone and they will never be forgotten! I have a feeling this first year of school will stay with me forever. And thank goodness Ben's aid will be staying with us next year. She has been a blessing!! (Pics from the last day will follow tomorrow)

We are TIRED of not feeling well!

Ben hasn't been himself all weekend - fussy, not sleeping well, wanting to be held a lot, etc. At first, I just thought it was him getting over the anesthesia from Friday. But on Monday, we realized he had a BAD ear infection of some sort. Mike noticed some drainage and tried to wipe it out. Ben; who has a super high threshold for pain, cried inconsolable for 5 minutes. Right then I knew his ear was in bad shape. I placed a call to ENT this morning (I already started giving Ben Tylenol and antibiotic ear drops Monday night) to give them a post-op update and find out what they wanted to do. I was concerned about how he could have an ear infection considering his ears looked good during his Friday procedure and his ears weren't infected then -but they did suction out some wax. After talking to the doctor, he is concerned that Ben's ear drum might have been punctured during the cleaning. We have to take him to the main hospital tomorrow to follow-up with his Cochlear Implant Surgeon (since he specializes in ears).

And since things seem to happen in groupings for us, I woke up this morning with a really sore neck/throat AGAIN! I went to my doctor and looks like I have strep throat. This is the 3rd time is 6 weeks. They think I might be a carrier of strep and when I get stressed out or worn down, it comes out. That would explain why I have been getting it so much. As if stress isn't bad enough, strep throat comes as an added bonus. I am now on really strong antibiotics for 10 days and have to follow-up with another strep test after I'm better to make sure they got rid of it. If not, I will have to do another coarse of antibiotics and they will test to see what meds the strep strain I have is most sensitive too and put me on that. I can't imagine it will survive these antibiotics... they are so strong that even on a full stomach they make me nauseous and slightly dizzy.

Ugh, I am so tired of going to the doctor and taking Ben to the doctor. Please let this be the end of our illnesses!

Kind of like saying Daddy for the first time!

Today Ben did something REALLY exciting that he has never done before. He signed "dad" to me when Mike left the room after the two of them were having a tickle fight. That is HUGE! It was like saying daddy for the first time. He was asking me for his dad to come back. And as soon as he starting signing dad I picked him up and ran him upstairs to see dad so he knew I understood him.

Ben has been imitating sign really well after being shown the sign, but only signs the word "more" on his own when he wants something. He has never signed any noun in context of wanting it without prompting like that. This was a really big breakthrough for him and the next step in communicating his needs/wants to us. This was exactly what Mike and I both needed after our day yesterday. Ben really knows how to pick up spirits up!

Home from the Hospital

Ben is home and doing well. Everything ran smoothly at Children's today... surgery was on time and we had a great team working with us this visit. The IV was placed with only one stick (a first for us) and the blood work was all drawn from only one additional stick. His recovery nurse was wonderful and got us out of there really fast. Now Ben is in the comfort of his own home watching Handy Manny eating Pedialite via his Gtube.

That's the good news - the not so good news is the outcome of the scope. The irritation of his airway seems to be down, but the swelling and size of everything in his airway isn't. What this means without going into too many details (I'm too emotional drained to talk about the nitty- gritty) is that Ben won't even be considered for airway repair for at least another 10 years. And if/when the airway reconstruction does happen, it will be more involved than expected. In addition to using cartilage from his ribs to rebuild his airway, he will probably need skin grafting as well. Just a lot to wrap our minds around right now. Needless to say, our spirits are down. We just have to remind ourselves that Ben is happy and the trach is just a small price to pay for having him in our lives.

Ben's Airway Scope

This Friday at 9:00 a.m. Ben has his much anticipated airway scope. Please let it bring us some good news this time. A non-swollen airway would be the cherry on top of our week. We will be sure to post an update after we get home from the hospital. The surgery will be done as outpatient. Ben will also get a good ear cleaning and his STILL OPEN nasal passages will also be looked at (yes, I'm still dilating daily and it has worked).

AMAZING Progress!!

Ben has been making amazing progress at preschool with his sign language. He started the year only signing "more" and it wasn't the correct way of signing it (but we knew what he meant). Just recently, it clicked for Ben - thanks to his WONDERFUL aid Helga and her endless dedication teaching him!! (Helga, we can't thank you enough. You have been amazing with Ben.)


Now, Ben is now trying to sign so much! And what's even more impressive is that signing is very difficult for Ben because the stroke he had at birth damaged the part of the brain that controls small motor skills and using hands independently. I am just SO PROUD of him and his willingness to overcome so many obstacles. It is truly heartwarming to see my non-verbal child learning a form of communication. Although I must admit, since his sign language has taken off he has refused to wear his cochlear implant - which he use to enjoy. I figure it is like listening to music while studying... I could never do it because I found it too distracting. Maybe Ben finds hearing a nuisance when learning his signs! We'll cut him some slack :) You will also see in this video Ben chewing on his shirt - his favorite past time. He is chewing holes in his shirt and making them unwearable after only ONE day! And for those of you wondering where Ben is during this video... he is in the observation/quiet room. He is taken in this room twice a day so if he decides to wear his implant, it isn't as noisy.


And THANK YOU NURSE KIM for taking this video. Because of you, everyone can enjoy Ben's progress!

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