Happy Cranio-versary to our little Leah!
Who could tell, looking at this picture, that she had surgery one year ago today!
Tuesday, October 21, 2014
Wednesday, June 25, 2014
Our helmet graduate!
We are just back from an appointment with Ramona at the Hanger Clinic in Syracuse. She confirmed what Dr. Taylor said last week: Leah is done with the helmet! She hasn't been wearing it much over the last week, so we are very happy to hear that we don't have to put her back in it.
Ramona took a scan of Leah's head again today, and showed me the before and after in her office of the scans. She's working on a final report of Leah's progress and will give it to us in about a month, so I don't have photos to show at this point of her head shape, but these that we took at home capture the change in Leah's skull shape and face since the surgery and after helmet therapy:
Ramona took a scan of Leah's head again today, and showed me the before and after in her office of the scans. She's working on a final report of Leah's progress and will give it to us in about a month, so I don't have photos to show at this point of her head shape, but these that we took at home capture the change in Leah's skull shape and face since the surgery and after helmet therapy:
Ramona was really pleased with Leah's outcome, and I did say that we were VERY careful to follow the helmet directions to the letter. She wore that thing for almost exactly 23 hours per day for EVERY day that we were doing the helmet therapy. We missed that one 24 hour period where she had the terrible rash on her forehead, but otherwise we adhered to the plan exactly as they asked us to. Leah never really minded it, though we can tell that she's happy to have it off. She is still having some trouble navigating the world with a head that hurts when it is bumped, but that should only last a few more days! Of course, we are starting to realize, every time she bumps her head, that there are definite advantages to having a helmet on your child when she is learning to walk!
P.S. It turns out that those helmets are like greenhouses on the inside. All that heat and humidity did wonders for Leah's hair, as evidenced by the photos above!
Wednesday, June 18, 2014
A Thumbs Up from the Surgeon
We're back from a long day at CHOP to see Dr. Taylor (over nine hours in the car for a 19 minute appointment, but who is counting?) for one last post-op check. He seems very impressed with the progress she has made, and says that her results are remarkable. He seems especially happy with the way the surgeries addresses the asymmetry of her face, and says that her eyes are pretty much perfectly even. Of course, he uses different language to say that but I get the gist.
Going into the appointment, I had two things I wanted him to address, aside from the overall success of the surgery. Though the sutures were supposed to be dissolvable, it seems that Leah still has one large stitch at the very top of her head, possibly at the end of the thread where the knot was tied. I asked him if it was possible and he said very unlikely, but then I showed him and he seemed surprised. He and two of his residents examined it, and decided to remove it with tweezers and forceps. They all gathered around Leah and started to tug on the incision, and I assumed she would really lose it and that would be the end of her cooperation for this appointment. In reality, she took it all in stride, and just sat there looking moderately surprised that everyone was focused on the top of her head. She's actually quite good with pain management at this point (she shrugs off shots at the doctor's office with barely a raised eyebrow, as if to say, "I've had major skull surgery, so you don't really think that little needle is going to phase me, do you?"). After a moment of tugging, the stitch was out.
The other issue was that she seems to have a pocket of fluid on the right side of her head, just under the skin, in exactly the spot where the distractor sat against her skull. I have had a few folks look at it who have some kind of medical training, and they have guessed a variety of things, but most agreed it was just fluid that would go away. So, I was expecting Dr. Taylor to confirm that, and when he said it was actually a defect in the skull, I was quite surprised. I managed to get over the shock of hearing that there was a large hole in her skull enough to ask, "So, what am I feeling under her skin then?" He matter-of-factly replied, "Her brain." David and I exchanged glances, but he quickly reminded us that there's a hard covering over her brain, and that in all the cases in which kids have had these skull defects, there have been no cases of associated traumas. He also said that we shouldn't let it affect her activity in the least, and that we should treat her just like any other kid. We had removed her helmet for the appointment, and I was holding it in my hand, and as he said this I admit to thinking, "Well, she will just have to wear this helmet then for the rest of her life!"
On the helmet, he did say that he thinks it has done its work and that we should take it off. Since it's summer (and it was over 95 degrees in Philly that day!) it's hard for a kid to wear a full foam helmet, so he said to take it off. I asked about the flat spot over her right eye, and he said he didn't think the helmet would address that anyway. We still have an appointment set with Ramona, the Hanger technician, next week, so I will get confirmation from her before I make it official, but at least we will take it off during the day for now.
So, in the end, Dr. Taylor said we should come back in a year to check in, but that otherwise things are looking great!
Going into the appointment, I had two things I wanted him to address, aside from the overall success of the surgery. Though the sutures were supposed to be dissolvable, it seems that Leah still has one large stitch at the very top of her head, possibly at the end of the thread where the knot was tied. I asked him if it was possible and he said very unlikely, but then I showed him and he seemed surprised. He and two of his residents examined it, and decided to remove it with tweezers and forceps. They all gathered around Leah and started to tug on the incision, and I assumed she would really lose it and that would be the end of her cooperation for this appointment. In reality, she took it all in stride, and just sat there looking moderately surprised that everyone was focused on the top of her head. She's actually quite good with pain management at this point (she shrugs off shots at the doctor's office with barely a raised eyebrow, as if to say, "I've had major skull surgery, so you don't really think that little needle is going to phase me, do you?"). After a moment of tugging, the stitch was out.
The other issue was that she seems to have a pocket of fluid on the right side of her head, just under the skin, in exactly the spot where the distractor sat against her skull. I have had a few folks look at it who have some kind of medical training, and they have guessed a variety of things, but most agreed it was just fluid that would go away. So, I was expecting Dr. Taylor to confirm that, and when he said it was actually a defect in the skull, I was quite surprised. I managed to get over the shock of hearing that there was a large hole in her skull enough to ask, "So, what am I feeling under her skin then?" He matter-of-factly replied, "Her brain." David and I exchanged glances, but he quickly reminded us that there's a hard covering over her brain, and that in all the cases in which kids have had these skull defects, there have been no cases of associated traumas. He also said that we shouldn't let it affect her activity in the least, and that we should treat her just like any other kid. We had removed her helmet for the appointment, and I was holding it in my hand, and as he said this I admit to thinking, "Well, she will just have to wear this helmet then for the rest of her life!"
On the helmet, he did say that he thinks it has done its work and that we should take it off. Since it's summer (and it was over 95 degrees in Philly that day!) it's hard for a kid to wear a full foam helmet, so he said to take it off. I asked about the flat spot over her right eye, and he said he didn't think the helmet would address that anyway. We still have an appointment set with Ramona, the Hanger technician, next week, so I will get confirmation from her before I make it official, but at least we will take it off during the day for now.
So, in the end, Dr. Taylor said we should come back in a year to check in, but that otherwise things are looking great!
Friday, June 6, 2014
24 hour helmet vacation
Well, we hit a small snag in the helmet process. Leah has a horrible rash on her forehead that we can't cure with OTC creams. We have been working on it for a few days, but it's right in the area of her forehead that is being held back by the helmet. Since the weather has warmed up and she's getting a little sweaty during the days, the sweat mixes with the rash and creates a whole lot of ugly! Our pediatrician gave us some prescription cream to try, and our orthotic tech said to try taking the helmet off for 24 hours to give the rash some time to breathe. We'll see if that works, and if Leah can sleep without the helmet for the first time in over three months!
Sunday, June 1, 2014
Wednesday, May 14, 2014
More time with the helmet
We visited Leah's orthotic technician today in Syracuse, and she said that while Leah is making lots of progress, we have a bit more to do. We hoped that she would be done with the helmet by the end of May, but it looks like it may be a few more weeks. The good news is that it is making a big difference, and aside from a flat spot above her right eyebrow, she's looking pretty round overall. So, we'll keep going...
Monday, April 21, 2014
Fun with the Helmet!
We're getting lots of mileage out of the blank canvas that is the Hanger helmet! She usually sports some kind of flower, but we couldn't pass up the opportunity to make some Easter bunny ears!
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