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.
Tuesday, June 30, 2009
Sunday, June 21, 2009
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! 
Tuesday, June 16, 2009
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).
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).
Wednesday, June 10, 2009
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.
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.
Monday, June 8, 2009
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.
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.
Sunday, June 7, 2009
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.
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.
Thursday, June 4, 2009
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)
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)
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