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"!
Friday, October 29, 2010
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!! 
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