Tuesday, December 21, 2010
Monday, December 20, 2010
SO Thankful!
When I dropped Ben off for school this morning, the wagon he gets put in to go inside was FILLED with toys, books, puzzles and so much more (picture below of everything he got)! His wonderful interpreter got them for him from the Deaf Institute. She picked out stuff she thought he would like and I must say, she hit the nail on the head because I think he is going to LOVE everything! I couldn't believe it... it was like Christmas morning. I am so thankful for everything he got, his interpreter for getting them for him and the Deaf Institute for having this service available. THANK YOU!
Friday, December 10, 2010
Monday, December 6, 2010
Loving the Tree
Ben has become quite fond of the Christmas tree and ornaments this year! It just warms my heart to see him gazing into the lights and reaching for the ornaments (and yes, I've been giving them to him even though I shouldn't). I just can't help myself! 
Thursday, November 4, 2010
Upper GI Results
Heard back from Ben's GI doctor and he said Ben's Upper GI shows no signs of a paraesophageal hernia. Was hoping that was the root of his feeding issues and with a pretty easy surgical fix, everything would be better. No such luck, so we are back to the drawing board. Ben is doing pretty well lately with his feeds though. Had 3 vomiting episodes in October and can't say for sure what the cause of each one was. One might have been a stomach bug because it was going around, but the symptoms of a stomach bug are exactly the same as the symptoms Ben has when he doesn't tolerate his feeds.
Now that we know the Upper GI is as normal as it can be for Ben, we have to start the supplement to help him gain weight. Dreading it though because I have a feeling Ben won't tolerate it.
Now that we know the Upper GI is as normal as it can be for Ben, we have to start the supplement to help him gain weight. Dreading it though because I have a feeling Ben won't tolerate it.
Sunday, October 31, 2010
Friday, October 29, 2010
Upper GI
Ben FINALLY had his Upper GI yesterday. Still waiting on the results from GI although there has been some confusion with the test. Praying it doesn't have to be redone because of a misinformed radiologist.
School Photos
At school Ben is learning to take turns and play with other kids his age... the kids are great with him.
While strolling around the room in his walker, Ben decided to make a pit stop to do a little painting.
Working on kneeling while playing with chalk. Ben appears to be hanging on for dear life!
Making a pumpkin during the Harvest Party
Ben and his class showing off their pumpkins!
Sharing His Signs
Since Ben's primary language is Sign Language, we thought we would share some Halloween signs with his blog friends. And if you see Ben out and about this weekend, be sure to wish him a "Happy Halloween"!
Wednesday, October 20, 2010
Growing Up
Ben just got his school pictures back and I must say, these are the best ones he has ever gotten! And I just can't get over how grown up he looks in this photo. (As an added bonus, he is wearing his implant which is a huge surprise considering he doesn't want to wear it much at home)
Ben in his new glasses. After a lot of holding down his hands and struggling, we got him to wear them for the 2 seconds it took to take this picture. That has been the longest he has worn them since. Hoping in time he will realize the benefit of them and start wearing them more. But Ben will only do so on his own terms in his own time.
Ben in his new glasses. After a lot of holding down his hands and struggling, we got him to wear them for the 2 seconds it took to take this picture. That has been the longest he has worn them since. Hoping in time he will realize the benefit of them and start wearing them more. But Ben will only do so on his own terms in his own time.
Friday, October 15, 2010
Misc Others
Ben's Upper GI was suppose to be yesterday, but was canceled due to his illness. He needs to be in optimal health for this procedure.
And Ben's glasses are IN! We will be picking them up tomorrow morning. If he is willing to wear them for more than 5 seconds, I will take a picture and post it.
And Ben's glasses are IN! We will be picking them up tomorrow morning. If he is willing to wear them for more than 5 seconds, I will take a picture and post it.
Rough Week
Ben caught some sort of bug last week and over the weekend, his condition worsened. Whatever he had moved into his chest and made it very difficult for him to breathe. He was requiring a lot of oxygen at night, needing constant suctioning and was having these really hard, raspy, wheezy coughing fits. We were told from his Special Needs Pediatrician to take him to the ER at Childrens. After an exam and chest Xray, they diagnosed him with pneumonia/partially collapsed lung. We were then told he must be admitted to the hospital... which resulted in a horrendous experience at Children's.
An hour after being there, Mike and I insisted he be realized ASAP. The pulmonary floor was full as was the trach floor, so we were admitted on a general floor. That floor was not able to give someone of Ben's numerous/complicated health issues the attention/care he needs in a timely manner. He was much less at risk at home. There I can 'immediately' give him oxygen, 'immediately' hook him up to his oximeter (machine that reads oxygen levels in the blood and displays the heart rate) and 'immediately' give him breathing treatments, medicine, etc. Not to mention we were having to use all our own supplies and machines to feed him, suction him, and so on. We stayed long enough for him to get one antibiotic shot, an oral antibiotic started and a trial on a cough assist machine.
Ben, with the help of two kinds of breathing treatments and two antibiotics is doing much, much better (hasn't required oxygen throughout the night the past three nights) and unless something should change over the weekend, he'll be heading to school Monday morning. I am so thankful to have had the help of my mom and husband during this very difficult time. It so happened that our night nurse has been on vacation for 8 days. It made all the difference in the world having my mom there to help with Ben in the mornings and Mike in the evenings because Ben's care was really a two person job during this illness (he was fighting the treatments and wearing the Oxygen).
An hour after being there, Mike and I insisted he be realized ASAP. The pulmonary floor was full as was the trach floor, so we were admitted on a general floor. That floor was not able to give someone of Ben's numerous/complicated health issues the attention/care he needs in a timely manner. He was much less at risk at home. There I can 'immediately' give him oxygen, 'immediately' hook him up to his oximeter (machine that reads oxygen levels in the blood and displays the heart rate) and 'immediately' give him breathing treatments, medicine, etc. Not to mention we were having to use all our own supplies and machines to feed him, suction him, and so on. We stayed long enough for him to get one antibiotic shot, an oral antibiotic started and a trial on a cough assist machine.
Ben, with the help of two kinds of breathing treatments and two antibiotics is doing much, much better (hasn't required oxygen throughout the night the past three nights) and unless something should change over the weekend, he'll be heading to school Monday morning. I am so thankful to have had the help of my mom and husband during this very difficult time. It so happened that our night nurse has been on vacation for 8 days. It made all the difference in the world having my mom there to help with Ben in the mornings and Mike in the evenings because Ben's care was really a two person job during this illness (he was fighting the treatments and wearing the Oxygen).
Tuesday, September 21, 2010
Overdue Update
Ben's world has been keeping us busy and out of trouble.
MEDICAL UPDATE:
I'm happy to report that his vomiting issues has subsided with the switch to the new formula "EleCare". However, he still hasn't regained the weight he lost during those months of vomiting and has actually lost even more since the vomiting has stopped... which is puzzling. His GI doc now wants to add a high calorie, protein-free nutritional supplement called "Duocal" to his diet. This can be mixed in with his current formula and will add additional calories. We will start this next month.
Ben will also need a test called an "Upper GI " to make sure that he doesn't have a slipped hernia above his Nissen (the surgery he had at 4 months that wrapped the upper part of the stomach around the esophagus and stitched in place to prevent reflux). This could have been the cause of his past vomiting and the reason why Ben still has so much air in his stomach that needs vented during his feeds.
Ben had an eye exam which showed that his vision has worsened and we can't hold off on glasses any longer. One eye is near sighted and the other is far sighted. Seeing how Ben does with glasses should be interesting. We are only going to have him wear them during school hours since he sits up most of the time and when sitting in his high chair at home. Trying to get him to wear glasses when scooting around on his side will just be too difficult and the eye doc agreed that it wasn't worth fighting him and having them broken. Wearing them outside won't work either because he needs a double layer of darkness (we put sunglass clip-ons on his sunglasses) and can't obtain that without getting prescription sunglasses too and insurance only covers one pair. Will definitely post a pic of Ben in his new glasses when they come in.
SCHOOL UPDATE:
School is going really well. Ben is in morning preschool again this year, has the same teacher, the same one-on-one aid and our two day nurses are the same. This made the transition very painless. The only addition to the team has been the interpreter... and she is wonderful too. At first, Ben seemed really interested in all she was doing and was trying to mimic her. Most recently, he has become stubborn with his signing and is refusing to do any. I think he is just trying to be difficult to see what he can get away with.
RECREATION:
Ben is still loving his car rides, playing on the mats in our garage, going for walks and swinging.
His wheelchair soccer season has started up again and he has been enjoying that. This year he is able to give "high fives" and that has been a big hit! Personally, I love being around so many families/kids that understand and get Ben and his needs. It seems to be the place "he fits in" the most. They are also a great resource for any questions regarding making adaptions to house, bath and car too. Since Ben is the youngest, they have already done what we are in the beginning stages of planning.
Horseback riding starts in October.
And last but not least, I think we have adjusted well to not having night nursing every night and I enjoy being with Ben when he wakes up with the roosters (5am is his standard wake-up time). But we have been lucky with only having a night or two a week open. Come October, I will have a 9 night stretch of no nursing when our main night nurse is on vacation so I may sing a different tune then. :)
MEDICAL UPDATE:
I'm happy to report that his vomiting issues has subsided with the switch to the new formula "EleCare". However, he still hasn't regained the weight he lost during those months of vomiting and has actually lost even more since the vomiting has stopped... which is puzzling. His GI doc now wants to add a high calorie, protein-free nutritional supplement called "Duocal" to his diet. This can be mixed in with his current formula and will add additional calories. We will start this next month.
Ben will also need a test called an "Upper GI " to make sure that he doesn't have a slipped hernia above his Nissen (the surgery he had at 4 months that wrapped the upper part of the stomach around the esophagus and stitched in place to prevent reflux). This could have been the cause of his past vomiting and the reason why Ben still has so much air in his stomach that needs vented during his feeds.
Ben had an eye exam which showed that his vision has worsened and we can't hold off on glasses any longer. One eye is near sighted and the other is far sighted. Seeing how Ben does with glasses should be interesting. We are only going to have him wear them during school hours since he sits up most of the time and when sitting in his high chair at home. Trying to get him to wear glasses when scooting around on his side will just be too difficult and the eye doc agreed that it wasn't worth fighting him and having them broken. Wearing them outside won't work either because he needs a double layer of darkness (we put sunglass clip-ons on his sunglasses) and can't obtain that without getting prescription sunglasses too and insurance only covers one pair. Will definitely post a pic of Ben in his new glasses when they come in.
SCHOOL UPDATE:
School is going really well. Ben is in morning preschool again this year, has the same teacher, the same one-on-one aid and our two day nurses are the same. This made the transition very painless. The only addition to the team has been the interpreter... and she is wonderful too. At first, Ben seemed really interested in all she was doing and was trying to mimic her. Most recently, he has become stubborn with his signing and is refusing to do any. I think he is just trying to be difficult to see what he can get away with.
RECREATION:
Ben is still loving his car rides, playing on the mats in our garage, going for walks and swinging.
His wheelchair soccer season has started up again and he has been enjoying that. This year he is able to give "high fives" and that has been a big hit! Personally, I love being around so many families/kids that understand and get Ben and his needs. It seems to be the place "he fits in" the most. They are also a great resource for any questions regarding making adaptions to house, bath and car too. Since Ben is the youngest, they have already done what we are in the beginning stages of planning.
Horseback riding starts in October.
And last but not least, I think we have adjusted well to not having night nursing every night and I enjoy being with Ben when he wakes up with the roosters (5am is his standard wake-up time). But we have been lucky with only having a night or two a week open. Come October, I will have a 9 night stretch of no nursing when our main night nurse is on vacation so I may sing a different tune then. :)
Tuesday, August 10, 2010
Bike Trailer
Riding in the bike trailer has become one of Ben's FAVORITE past times.
Some of his other favorites are car rides, going on walks (he doesn't care what you push him in), swinging, playing in the garage sensory table and shopping (YAY for me!). Ben pretty much enjoys anything that requires him to be outside. He is definitely all boy!
Ben's Fifth Birthday!
Because of Ben's recent vomiting problems (yes, up until last week we have still been dealing with them) and the cancellation of night nursing (now only on certain nights), we decided to cancel Ben's family birthday party. We celebrated at home with some gift/card opening (a favorite of Ben's) and cupcakes. Since Ben doesn't eat by mouth, we gave him free reign to play in his food. He LOVED it! Can't believe my amazing little guy is FIVE now!! 
Thursday, July 22, 2010
What's Going On?
Ben has been having trouble tolerating his feeds when he wakes for the day. It has been a struggle on and off (more on than off) for the past three weeks. He starts gagging, has tons of secretions, starts sweating and vomits a few times. After the episode, he is lethargic for a few hours and then springs right back to his old self. I have tried everything I can think of to help and am often asking myself "What is going on?". We can't have him vomiting like this every morning for many reasons. First, he can't afford to lose the weight. Second, his nasal passages are open for the first time ever after too many surgeries. When Ben vomits it comes out his nose and ears too and I'm so worried the vomit is going to cause scaring in his nasal passages and close them off again. Thirdly, Ben's cochlear implant was implanted differently than a usual implant and is exposed in his ear. Because of this, we have to be very careful about any ear infections in fear it will infect the implant that leads right to his brain. And last but not least, it is just heartbreaking to watch him struggle every morning and feel so awful. Nobody should have to go through that.
It just so happens that two other little CHARGE kiddos we know are admitted in the hospital for the same feeding issues right now - just more severe than Ben's episodes because theirs continue all day and ours subside after the morning (although yesterday he had trouble in the afternoon too, but I'm hoping that was a one time thing). And they haven't found anything to help or gotten any answers either.
I've been trying to manage it at home and with a few phone suggestions from Ben's doctors, but am now at the point that it isn't improving (actually yesterday after following some suggestions from the GI Nurse Practitioner Ben started doing worse). I have no choice but to start scheduling Ben for the visits with his docs and have him endure the tests that I'm sure they are going to want to run. I'm dreading it because Ben is terrified of the hospital (can't say I blame him). Last time this happened, Ben ended up spending two weeks admitted and a dozen tests run and nothing provided any answers. There is nothing worse than putting your child through all that to not find out anything.
If anyone has any input or suggestions, please let me know. I'm starting to wonder if over a certain period of time, a child can develop an allergy/sensitivity to their food. Has anyone experienced that or checked into that?
It just so happens that two other little CHARGE kiddos we know are admitted in the hospital for the same feeding issues right now - just more severe than Ben's episodes because theirs continue all day and ours subside after the morning (although yesterday he had trouble in the afternoon too, but I'm hoping that was a one time thing). And they haven't found anything to help or gotten any answers either.
I've been trying to manage it at home and with a few phone suggestions from Ben's doctors, but am now at the point that it isn't improving (actually yesterday after following some suggestions from the GI Nurse Practitioner Ben started doing worse). I have no choice but to start scheduling Ben for the visits with his docs and have him endure the tests that I'm sure they are going to want to run. I'm dreading it because Ben is terrified of the hospital (can't say I blame him). Last time this happened, Ben ended up spending two weeks admitted and a dozen tests run and nothing provided any answers. There is nothing worse than putting your child through all that to not find out anything.
If anyone has any input or suggestions, please let me know. I'm starting to wonder if over a certain period of time, a child can develop an allergy/sensitivity to their food. Has anyone experienced that or checked into that?
Wednesday, July 14, 2010
It must be in the genes!
Shortly after my last post, I recieved an email from Mike's mom with two pictures. One was of Mike in a metal tub just like Ben and the other was of his mom in the same tub. I couldn't belive it! I've never seen these pictures before so what are the odds that my mom would have a tub just like theirs and we put Ben in it!
Maureen (Mike's Mom) - Youngstown, Ohio
Mike - Youngstown, Ohio
Ben - Tipp City, Ohio
Maureen (Mike's Mom) - Youngstown, Ohio
Mike - Youngstown, Ohio
Ben - Tipp City, Ohio
Sunday, June 20, 2010
Our Life... Captured By Pictures
For Memorial Day, Ben participated in the "decorate your ride" parade in Tipp City, Ohio. Grandma Deb really tricked out his wagon!
Ben using his pony walker to leave preschool and walk to my car. He really came a LONG way this school year with his walker! (And I hope he continues in the fall considering he refuses to go anywhere in it at home.)
Who needs a pool when you have a metal tub?!? Seeing him in this just cracked us up and reminded me of something you would see in the "Little Rascals".
There is an all-inclusive handicap-accessible park about 15 minutes from our house. We drove there to check it out and Ben really loved the swings. Actually, it was the taste of the swing piece by his face that he really seemed to love... he licked it clean and then some! 
I couldn't resist myself. For Father's Day, I had a "Bigger Cheese" shirt made for Mike to match Ben's "Big Cheese" shirt. I know it is cheesy (he he), but I thought they looked super cute!
Wednesday, June 16, 2010
Wheelchair & accessories has been APPROVED!
GREAT NEWS! We just learned that Ben's wheelchair and all the necessary accessories have been approved by our private insurance. The chair is being ordered as we speak and once it arrives, we will have an appointment with the supply company and Phystical Therapist at Children's Hospital to make all the adjustments so it fits Ben perfectly.
Sunday, June 13, 2010
Saturday, June 12, 2010
Schools out... Summer is here!
Ben's school ended the beginning of June and he was definitely ready for summer break to start. The last week of school, Ben was getting very upset when we turned down the street school was on. Although he got over it pretty quickly, he refused to do much actual "work" while in school. Sounds just like a typical kiddo, huh? Both Mike and I went to school with Ben on his last day for the end of the year party. And all I can say is Ben went out with a bang... and not in a good way. He decided to pull a stunt that hasn't been done in a while, let alone EVER done outside of the house! He pulled his trash out at school! In Ben's defense, his intention was to only pull off his artificial nose that sits on his trach but it was stuck on pretty tight and Ben got more than he bargained for when he gave it a strong tug. He really scared us and getting the trach back in wasn't easy because Ben was panicking himself. We all learned a lot from that incident and god was definitely looking out for him that day by having it happen on the only day both Mike and I were there in addition to his nurse.
On a more positive note, we learned that Ben will be getting an Interpreter in addition to his nurse and one-on-one aid next year. His speech therapist really thought his sign language was taking off so much that he would benefit greatly from an Interpreter. The therapist and teacher didn't want to say anything to us about getting one until they got approval from the Special Ed Director and actually hired one. They were worried it wouldn't be approved because no child in Preschool in our school district has ever had an Interpreter. Well it was approved and someone was hired. I'm so excited and can't wait to see how much Ben learns next year.
We are also still waiting on complete insurance approval on Ben's wheelchair. The chair itself was approved, but they need more documentation for the accessories... and those are just as important as the chair (like getting a shelf for his medical equipment, an IV pole for his tube feeds, etc). I'm hoping the fact that they approved the chair is a good sign for the rest of the stuff. Just ready for the chair now and tired of waiting.
Ben is in week 5 of his 6 week Hippo Therapy (which is 30 minutes once a week) and he is having his best session ever. Not crying at all, even the first session and actually riding the whole 30 minutes - with the help of dad holding on one side and the therapist on the other, of course. And he gets so excited when we pull into the parking lot. He is just totally loving it and it warms my heart to see it. He really has come so far.
And last but not least, Ben is supporting a new summer do... a MOHAWK! And the mohawk has given Ben a new feisty attitude. Guess I have no one to blame but myself. Picture to follow in the next few days.
Well that about sums everything up. Sorry it has been so long since I've posted. Life just gets in the way :)
On a more positive note, we learned that Ben will be getting an Interpreter in addition to his nurse and one-on-one aid next year. His speech therapist really thought his sign language was taking off so much that he would benefit greatly from an Interpreter. The therapist and teacher didn't want to say anything to us about getting one until they got approval from the Special Ed Director and actually hired one. They were worried it wouldn't be approved because no child in Preschool in our school district has ever had an Interpreter. Well it was approved and someone was hired. I'm so excited and can't wait to see how much Ben learns next year.
We are also still waiting on complete insurance approval on Ben's wheelchair. The chair itself was approved, but they need more documentation for the accessories... and those are just as important as the chair (like getting a shelf for his medical equipment, an IV pole for his tube feeds, etc). I'm hoping the fact that they approved the chair is a good sign for the rest of the stuff. Just ready for the chair now and tired of waiting.
Ben is in week 5 of his 6 week Hippo Therapy (which is 30 minutes once a week) and he is having his best session ever. Not crying at all, even the first session and actually riding the whole 30 minutes - with the help of dad holding on one side and the therapist on the other, of course. And he gets so excited when we pull into the parking lot. He is just totally loving it and it warms my heart to see it. He really has come so far.
And last but not least, Ben is supporting a new summer do... a MOHAWK! And the mohawk has given Ben a new feisty attitude. Guess I have no one to blame but myself. Picture to follow in the next few days.
Well that about sums everything up. Sorry it has been so long since I've posted. Life just gets in the way :)
Wednesday, April 28, 2010
Things Have Been Going Well...
I'm happy to report that things have been going well with Ben. He just saw GI and Endocrine this week and both were happy with his growth. Ben's really had a growth spurt lately and he's finally GROWN OUT of his 18-24 month pants. He's now moved up to a big old 2T! And wearing a 3T in tops... and we don't have to roll the pant legs or sleeves anymore. What a big guy! He's following his own curve on the growth chart too, so that's good news. Even though he is only the third percentile for height and 10th for weight, as long as he doesn't fall off his curve they don't plan on doing anything. Ben is also going to get one huge dose of Vit D (50,000 IU) every three months to help him maintain his Vit D since he has had trouble in the past with it and it may be causing his low bone density.
Ben recently got fitted for a wheelchair and we are excited to get it. I was shocked to hear that the wheelchair fitting team at Children's Hospital thought he was mentally ready for either a manual wheelchair that he pushes or a power chair. But since the manual wheelchair doesn't have storage for his medical equipment and he's never been in one to see how he does, we weren't ready to go with that option yet. And the power chair requires ramps in the house, van, etc, we weren't ready for that either. We decided to go with something we push for now and in about 3 years get him one of the above. In the meantime we can work on both options with a therapist so he'll be ready for one or the other when the time comes. Not only will his wheelchair make him a star at wheelchair soccer and the envy of all his friends b/c of the highlighter green color and glow in the dark feature, it will also make life much easier for us. We are praying insurance covers 100% of the cost of the chair because if it has to go to Waiver for approval, they are running on a 336 day turnaround... which is crazy to me. It would take about three months if insurance pays for all of it. The chair Ben is getting is called a Zippy (which makes it sound motorized, but isn't). Below is a pic.
Hippo Therapy is starting up again in May and we are looking forward to another good 6-week session.
I have also started selling my handmade greeting cards/stationary/invitations/birth announcements. If you ever need anything, keep me in mind. My website is http://www.mylittlescrapstore.com/
Ben recently got fitted for a wheelchair and we are excited to get it. I was shocked to hear that the wheelchair fitting team at Children's Hospital thought he was mentally ready for either a manual wheelchair that he pushes or a power chair. But since the manual wheelchair doesn't have storage for his medical equipment and he's never been in one to see how he does, we weren't ready to go with that option yet. And the power chair requires ramps in the house, van, etc, we weren't ready for that either. We decided to go with something we push for now and in about 3 years get him one of the above. In the meantime we can work on both options with a therapist so he'll be ready for one or the other when the time comes. Not only will his wheelchair make him a star at wheelchair soccer and the envy of all his friends b/c of the highlighter green color and glow in the dark feature, it will also make life much easier for us. We are praying insurance covers 100% of the cost of the chair because if it has to go to Waiver for approval, they are running on a 336 day turnaround... which is crazy to me. It would take about three months if insurance pays for all of it. The chair Ben is getting is called a Zippy (which makes it sound motorized, but isn't). Below is a pic.
Hippo Therapy is starting up again in May and we are looking forward to another good 6-week session.
I have also started selling my handmade greeting cards/stationary/invitations/birth announcements. If you ever need anything, keep me in mind. My website is http://www.mylittlescrapstore.com/
This has been a great thing for me because I'm able to make a little something while still being home with Ben. And I find creating cards a great way to express creativity and escape from the stresses of life.
Wednesday, March 31, 2010
Pics From Hippo Therapy
These pictures were from Ben's last winter Hippo Therapy session in the new indoor ring. His Occupational Therapist is on one side, Dad is on the other and a Volunteer is leading Dixie the pony (and I was waiting in the wings to suction Ben when needed). It takes an army of people to get Ben riding a horse, but definitely worth it!
Ben at School
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Working on drawing lines (Ben's day nurse Troi is behind him)
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Having fun with bubbles! (Ben's other day nurse Heather is on the left)
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Playing some Priory Woods games on the computer.
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The sensory table activity gets changed out on a regular basis - and it is always something super cool and clever. One of Ben's favorites is the flour/baking. He stands in a stander they have for him at school to play in it.
Adapted books are something Ben can choose to do during his free time. Often they have a student take turns with Ben doing while doing a book to learn to sharing and turn taking.
Tuesday, March 2, 2010
We have an EATER!
After Ben's recent ENT appointment and some encouragement from his doc, we started working on tastes again. Ben's ENT doctor really wants Ben to learn how to eat before trach reconstruction. The goal is for him to be better at swallowing and protecting his airway from aspirating his own secretions. The doc said a lot of people work on teaching these things AFTER the hours are put into recreating the airway and all the work ends up getting damaged - not to mention the child spends a lot of time being sick/hospitalized because they don't have the safety net of a trach. The trach allows you to suction food and secretions out of the airway before entering the lungs and causing pneumonia.
We started doing daily tastes of vanilla pudding in the evenings and Ben is responding better than EVER! He is interested, he is enjoying it and even requesting it. It is like something just clicked and he is ready to give it a shot and wants to learn! He amazes me. For someone who had so much horrible oral stimulation in his life (a vent and feeding tube in his mouth for almost four months), it is so heartwarming to see him enjoying food.
We started doing daily tastes of vanilla pudding in the evenings and Ben is responding better than EVER! He is interested, he is enjoying it and even requesting it. It is like something just clicked and he is ready to give it a shot and wants to learn! He amazes me. For someone who had so much horrible oral stimulation in his life (a vent and feeding tube in his mouth for almost four months), it is so heartwarming to see him enjoying food.
Thursday, February 25, 2010
Please Don't Be Closed - UPDATE
Ben had his follow-up ENT appointment today and his doc ran a flexible scope down both nasal passages (doing this while Ben was awake wasn't an easy task nor was it comfortable for Ben)... and it is completely open!!! I was so thrilled when I saw the red light in his mouth coming from the scope in his nose I actually said "I SEE A LIGHT, I SEE A LIGHT". His doctor said at this point, he doesn't want me dilating any longer. What a relief for both Ben and I. What great news!
Sunday, February 21, 2010
Grrr... why do all good things get discontinued?
Isn't it just the worst when you find something you really LOVE and it gets discontinued? I just found out that our beloved portable suction machine is no longer being made and you can't buy parts for it any longer either! How frustrating! This perfect machine is less than 3 lbs and super quiet - which draws less attention (and comments) to us in public when we need to use it and also makes us less distracting in the classroom. I was so in love with it when I saw it that we even saved up Ben's Christmas and birthday money to buy it outright since insurance wouldn't. I can't express how upset I am over this!
Anyone else have experience with portable suction machines? If so, what do you recommend? Quiet is my first priority and weight is my second. Quality and suction power tie for 3rd.
Anyone else have experience with portable suction machines? If so, what do you recommend? Quiet is my first priority and weight is my second. Quality and suction power tie for 3rd.
Wednesday, February 17, 2010
Please Don't Be Closed
Ben's coanal atresia (nasal passage blockage) has been an ongoing issue since his birth. He's had over five surgeries to keep his nasal passage open and the last surgery has been his only successful one. After that surgery (which was last year I believe), I've been doing home dilations to keep it open (per the doctor). Ben hates it and I hate doing it, but it is better than the surgery. I started out dilating daily, then moved to every two days, then once a week and just a few months ago I went to every two weeks. His doc actually thought I was safe to stop completely but I was just too worried about it closing to do that so I was hoping to get to just dilating once a month.
Anyway, I've been doing it every two weeks with no problems until this past Sunday. I couldn't get through - even after three tries. I was wondering if it could have closed and scarred over from his bad cold (mucus causes irritation which can cause scarring). But to do so in two weeks seemed too fast, even for him. His ENT started him on some really strong steroid drops put into his nostrils. Our hope is that it is just swelling from being sick. I'm praying the drops will do the trick. Thinking of the possibility of him having to get that surgery a 6th time makes me sick to my stomach.
We will follow-up with an ENT office visit in the next week and the odds are his doc will then run a scope down his nasal passage to see if it is open. Please pray for him and some open sinuses!
Anyway, I've been doing it every two weeks with no problems until this past Sunday. I couldn't get through - even after three tries. I was wondering if it could have closed and scarred over from his bad cold (mucus causes irritation which can cause scarring). But to do so in two weeks seemed too fast, even for him. His ENT started him on some really strong steroid drops put into his nostrils. Our hope is that it is just swelling from being sick. I'm praying the drops will do the trick. Thinking of the possibility of him having to get that surgery a 6th time makes me sick to my stomach.
We will follow-up with an ENT office visit in the next week and the odds are his doc will then run a scope down his nasal passage to see if it is open. Please pray for him and some open sinuses!
Tuesday, February 16, 2010
Signing Progress - WOW!
Ben's signing has REALLY taken off recently. It has clicked that what he signs he gets... and in turn is learning very quickly what the sign is for the things he wants. And then uses it at a later time to request it! We are so thrilled and proud of him. He is now consistently signing 19 signs without prompting. Those signs are (and from this list you can tell what motivates him):
1. TV
2. Up
3. More
4. Shoes
5. Open
6. Close
7. Sit
8. Tickle
9. Bath
10. Apples
11. Glue
12. Scissors
13. Finished
14. Color
15. Bubbles
16. Flower
17. Roll
18. Jump
19. Book
1. TV
2. Up
3. More
4. Shoes
5. Open
6. Close
7. Sit
8. Tickle
9. Bath
10. Apples
11. Glue
12. Scissors
13. Finished
14. Color
15. Bubbles
16. Flower
17. Roll
18. Jump
19. Book
We MISS School!
Between illnesses and school closings (due to the weather), it has been 12 days since Ben has been at school. And he misses it terribly!
Ben has picture cards of just about everything in his life plus a lot of basic vocabulary words. Last night he went through ALL his cards until he found the picture of school. He has been holding it since then and just looking at it like he thinks he will magically get to go if he stares at it long enough. Now that he is feeling better, he doesn't understand the weather is the reason we can't go to school or do much of anything outside the house.
Thursday, January 28, 2010
Sick House
Ben has been much healthier this winter than last and up until last weekend he hasn't been sick once. But he did catch a cold and is currently still trying to get over the hump of it. Round the clock nebulizer treatments of Xopenix and Atrovent seem to be helping some, but I wish there was something more I could do (seems like because he doesn't walk he has trouble breaking up the mucus in his chest). Ben got the Pneumonia Vaccine this year so I'm hoping that helps prevent this from moving into his lungs. I too caught what Ben has and Mike has been the healthy one caring for us sicklings.
Not feeling 100% has been causing Ben not to sleep as well and have a short fuse (can't say as I blame him). But I'm concerned because he is starting to take his anger out on himself by scratching his face all up (and I'm keeping his nails trimmed really short but that doesn't seem to be helping). I don't know if he is doing that because he feels the pressure from the congestion in his head, he has a headache or is just developing a new bad behavior in place of the trach pulling that he has stopped.
I've heard parent's of CHARGE kids say that behavior is the hardest part of CHARGE, even harder than all the medical issues and I can see why. Because so many kids with CHARGE have hearing and vision impairments, communication is very difficult with them. Most understand a lot of sign language but actually using it comes harder for them. Basically they are dealing with the same frustration kids deal with at the "Terrible Two Stage" their entire life. They know what they want, but have trouble getting it out. And because Ben can't walk or get into sitting on his own, he has to rely on us for almost everything he wants. And the older they get, the more wants they have and the more frustrated they get. I'm surprised most kids with CHARGE aren't upset all the time... I probably would be :)
I'm hopeful that Ben will continue to increase the amount of signs he actually does and in turn that will decrease his frustration level. And in the meantime, we are trying to make our house as accessible as possible for him. We adapted a light switch so he can turn it on himself (he enjoys this) and we ordered a floor level toy storage shelf to make more of his stuff accessible so he doesn't have to rely on us to pick out his toys (which he doesn't like).
Not feeling 100% has been causing Ben not to sleep as well and have a short fuse (can't say as I blame him). But I'm concerned because he is starting to take his anger out on himself by scratching his face all up (and I'm keeping his nails trimmed really short but that doesn't seem to be helping). I don't know if he is doing that because he feels the pressure from the congestion in his head, he has a headache or is just developing a new bad behavior in place of the trach pulling that he has stopped.
I've heard parent's of CHARGE kids say that behavior is the hardest part of CHARGE, even harder than all the medical issues and I can see why. Because so many kids with CHARGE have hearing and vision impairments, communication is very difficult with them. Most understand a lot of sign language but actually using it comes harder for them. Basically they are dealing with the same frustration kids deal with at the "Terrible Two Stage" their entire life. They know what they want, but have trouble getting it out. And because Ben can't walk or get into sitting on his own, he has to rely on us for almost everything he wants. And the older they get, the more wants they have and the more frustrated they get. I'm surprised most kids with CHARGE aren't upset all the time... I probably would be :)
I'm hopeful that Ben will continue to increase the amount of signs he actually does and in turn that will decrease his frustration level. And in the meantime, we are trying to make our house as accessible as possible for him. We adapted a light switch so he can turn it on himself (he enjoys this) and we ordered a floor level toy storage shelf to make more of his stuff accessible so he doesn't have to rely on us to pick out his toys (which he doesn't like).
Sunday, January 10, 2010
Ben's Body Is His Canvas
Ben has added coloring with "washable" markers to his daily repertoire. We know when he wants to color because once he is in his high chair, he pushes his sleeves up to his elbows (this is what they do at school before starting a craft). At first, all he wanted to do was color on two somewhat blank pages of his coloring book.
Once that page was filled, he then moved on to the tray of his high chair. Since it wiped clean pretty easily, we allowed him to have his fun. That excitement wore off quickly and he decided to start coloring himself next. Now we can't get him to stop. He colors lines up his arms, in his palm and on each one of his fingers. Once we wipe him clean, he starts the coloring all over again. And when he is done, he admires his work. As much as I don't want him coloring himself,I can't help but laugh watching him.
Once that page was filled, he then moved on to the tray of his high chair. Since it wiped clean pretty easily, we allowed him to have his fun. That excitement wore off quickly and he decided to start coloring himself next. Now we can't get him to stop. He colors lines up his arms, in his palm and on each one of his fingers. Once we wipe him clean, he starts the coloring all over again. And when he is done, he admires his work. As much as I don't want him coloring himself,I can't help but laugh watching him.
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