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!
Tuesday, May 26, 2009
Saturday, May 23, 2009
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!
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!
Friday, May 22, 2009
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.
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.
Wednesday, May 20, 2009
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).
Tuesday, May 19, 2009
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!
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!
Monday, May 4, 2009
Spring School Pictures
Ben got his spring school pictures back (yes, they take them two times a year). I couldn't resist buying some since they turned out so cute!! And I love that his hands are up in the picture like he is going to sign something. They also had a really cute class picture taken, but I avoided posting that since I don't know all the families and some may not be comfortable having their child's photo on the Internet.
Note to all relatives: If you would like one of these pictures, just send me an email with the size you want. Since it is the second school picture of the same school year, I wasn't going to do a mass mailing.
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