There is a poem called Welcome to Holland that is shared amongst many who have children with disabilities. The basis of it is that there are people going a trip to what they think is Italy, they want to go to Italy, are prepared and excited for Italy, but somehow end up in Holland. Holland's not bad, just different that what they expected. Most people who want to go to Italy, go. Many of us who ended up in Holland, never expected to go there. Again, not bad, just different. It is a metaphor symbolizing that we don't always get perfection in life. But having a child with a disability doesn't necessarily change life's perfection.
Last weekend, I had the realization that I really was in Holland, but not alone. I had the pleasure of having dinner with 4 other moms of children with Spina Bifida. We discussed the kids differences, their similarities, their challenges and the successes. We have all had very different experiences with Spina Bifida, but then again every child is different, even ones with out a disability. At one point during dinner I had a brief moment of sadness that I was amongst these women because of our common bond, only to be over shadowed by the thought that I was incredibly luck to be a part of this group. I have the support of other mothers. When I am feeling overwhelmed or frustrated, I have someone there, who truly does understand what I am going through. I have encouragement on my hard days and cheers on my good days. I know there are people who aren't in touch locally with other Spinase Bifida families and they struggle. I know that babies were born with Spina Bifida 20 years ago, before the Internet and weren't lucky enough to have the connections I have today.
Evan brought us to Holland, and I am a glad to be here.
Thursday, April 21, 2011
Tuesday, April 12, 2011
Freedom
Evan has found his freedom. He has had his wheelchair for one week now and is loving his new found freedom. It took him about 5 minutes to realize that he could move around as he wanted. His favorite place to be is in the kitchen. The kitchen has a tile floor so he doesn't have to exert as much effort to get himself around, but also because there are treasures to be found. He has no greater joy right now than opening the cabinets and drawers and taking out their contents. As always, there is a price for freedom. We now have to baby proof the house, I couldn't be more thrilled to do it.
It brings a smile to my face each time turn around and he is not right there. He is instead off exploring, on his own terms. I am still holding on to the hope that one day he will walk and not have to rely on his wheelchair as his only means of mobility, but I know we have some work to do before that day comes.
For today though, I am so proud of him and all the progress he has made.
It brings a smile to my face each time turn around and he is not right there. He is instead off exploring, on his own terms. I am still holding on to the hope that one day he will walk and not have to rely on his wheelchair as his only means of mobility, but I know we have some work to do before that day comes.
For today though, I am so proud of him and all the progress he has made.
Tuesday, April 5, 2011
Differing Opinions
As a parent of a child with special needs, I spend a lot of time taking Evan to the doctor. I put a lot of trust in these doctors and respect their opinions. But at times, I must admit, I don't agree with their opinions. These last few days this has happened A LOT!
Evan started running high fevers on Thursday night. It didn't seem anything in particular was bothering him, so we just kept him loaded up with Ibuprofen and Tylenol. His fever continued and on Saturday, it finally occurred to me that he might have a Urinary Tract Infection. We took him to the ER at Children's, was seen, they agreed it was a UTI and sent us home with some antibiotics. Sunday morning when we got up I went to change Evans diaper. His butt looked as though it had been scalded with hot water and his skin was peeling off in big layers and there were several blisters as well. So back to the ER we headed.
Anytime we are at the hospital we deal with a multitude of people. The first line of visits always come from residents. I don't have a problem with this as I know they have to learn somehow. At times, I even find they are a little more detailed with their exams as they are learning and taking everything in. The problem within lies when the resident says one thing and the attendings say another, and at times, my thoughts differ from either of theirs. That was my thoughts during both of these ER visits.
On top of all of this, we are still struggling with Evan's chronic ear infections. One of the residents felt his ear looked infected, but the attending disagreed. I felt sure his ears were still infected as he continues to pull on his ears constantly. So, after 2 ER visits, it was still unclear what was causing his fevers and even more unclear what was happening with the issue on his butt.
Monday morning I called Evans regular pediatrician who I have great faith in and we went to see her Monday afternoon. She too, was uncertain what was going on with his skin, but was sure his ears still looked infected. Several weeks back she had wanted me to set up an appointment with the ENT and cancel it if his ears got better. I never cancelled it, despite multiple other doctors saying his ears looked clear (mothers instinct).
This morning was our visit with the ENT and he agreed Evan's ears still look quite infected. A hearing test was done and his hearing is being affected by all the fluid build up behind his ears. The doctor feels tubes are the appropriate next step. I agree. He had time to do the surgery this coming Thursday, but that's just a bit too quick for me, so we are headed for surgery number 10 next Thursday.
Evan started running high fevers on Thursday night. It didn't seem anything in particular was bothering him, so we just kept him loaded up with Ibuprofen and Tylenol. His fever continued and on Saturday, it finally occurred to me that he might have a Urinary Tract Infection. We took him to the ER at Children's, was seen, they agreed it was a UTI and sent us home with some antibiotics. Sunday morning when we got up I went to change Evans diaper. His butt looked as though it had been scalded with hot water and his skin was peeling off in big layers and there were several blisters as well. So back to the ER we headed.
Anytime we are at the hospital we deal with a multitude of people. The first line of visits always come from residents. I don't have a problem with this as I know they have to learn somehow. At times, I even find they are a little more detailed with their exams as they are learning and taking everything in. The problem within lies when the resident says one thing and the attendings say another, and at times, my thoughts differ from either of theirs. That was my thoughts during both of these ER visits.
On top of all of this, we are still struggling with Evan's chronic ear infections. One of the residents felt his ear looked infected, but the attending disagreed. I felt sure his ears were still infected as he continues to pull on his ears constantly. So, after 2 ER visits, it was still unclear what was causing his fevers and even more unclear what was happening with the issue on his butt.
Monday morning I called Evans regular pediatrician who I have great faith in and we went to see her Monday afternoon. She too, was uncertain what was going on with his skin, but was sure his ears still looked infected. Several weeks back she had wanted me to set up an appointment with the ENT and cancel it if his ears got better. I never cancelled it, despite multiple other doctors saying his ears looked clear (mothers instinct).
This morning was our visit with the ENT and he agreed Evan's ears still look quite infected. A hearing test was done and his hearing is being affected by all the fluid build up behind his ears. The doctor feels tubes are the appropriate next step. I agree. He had time to do the surgery this coming Thursday, but that's just a bit too quick for me, so we are headed for surgery number 10 next Thursday.
Wednesday, March 30, 2011
Seven!
I have a seven year old. SEVEN. How did that happen?
It is so amazing to watch your baby become a person. She has a personality all her own. She is defiant, curious, creative, funny, sweet,sassy and everything in between. I have seen her be an observer, a leader, an artist a dancer and an amazing big sister.
I couldn't possibly love her more!
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| Happy Birthday 3/28/2004 |
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| 1st Birthday |
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| 3rd Birthday |
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| 5th Birthday |
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| 7th Birthday |
Saturday, March 19, 2011
Growning Up
Days like today remind that beyond all the medical terms, doctors appointments, medications and worries, Evan is just a baby, our baby. He is our last baby and I am trying to cherish every moment. Every first, every last.
We started the day shopping for new clothes for Evan. He is finally putting on weight and growning out of his clothes. Until recently he was still wearing clothes I got during my baby shower. He is still so tiny he can still fit in some of the same clothes he did this time last year. At last check he was 18 pounds!
We then took him for his first "real" haircut. I have trimmed his hair a few times before at home, but nothing too much. He did so good. I held him and he just sat wondering what was going on. I sat thinking, my baby is growing up...to fast. But I must admit he looks absolutely adorable!!!!
We started the day shopping for new clothes for Evan. He is finally putting on weight and growning out of his clothes. Until recently he was still wearing clothes I got during my baby shower. He is still so tiny he can still fit in some of the same clothes he did this time last year. At last check he was 18 pounds!
We then took him for his first "real" haircut. I have trimmed his hair a few times before at home, but nothing too much. He did so good. I held him and he just sat wondering what was going on. I sat thinking, my baby is growing up...to fast. But I must admit he looks absolutely adorable!!!!
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| BEFORE... |
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| What are these people doing?? |
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| WOW! |
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| I'm a big boy! |
Tuesday, March 15, 2011
Broken Leg: Part 2
I took Evan back to the ortho today to see how his broken leg was doing. They took and x-ray through the cast that was put on last week, only to show the bone had moved back to where it was prior to the first casting. After some discussion we decided to take off his cast, reset the bone and recast him. With a kid who has feeling, they would be put under IV sedation for this procedure, but they felt Evan would be fine with nothing. He screamed the first time, he screamed this time. I truly don't think he has much feeling in his lower legs, but I wish they had been able to give him something.
After the new cast was put on they did another x-ray to see how it looked and the bone had slid again during the casting. The PA who we were seeing said that a 2 to 10 degree angle on the bone was considered acceptable, but after the second cast Evans bone was at a 14 degree angle. So, I realize it is only 4 degrees, but to me, thats too much. I have a kid, who's walking ability is already compromised and I don't want to do anything additional to add to his challenges. So the options we were given were we could take the cast off, reset it again and recast it a third time, cut part of the cast away and put spacers in the cast to push his leg into place, but because of his lack of feeling wasn't the best choice becuase they sometimes cause issues and Evan wouldn't feel it as a way to let us know or do nothing and reckeck the leg next week.
I am not thrilled with any of these options. I asked him if our regular ortho, who has seen Evan since he was 5 weeks old and has done several surgeries on him knew what was going on with him and what her opinion was. She was at another office, so he called her, she said she was fine with the way the bone was and to follow up with her next week. I am frustrated. I explained my frustration to the PA. I try so hard to advocate for Evan, but at what point is it advocating versus being a bitch. I know I am not a doctor and I try not to second guess their knowledge, but this seems unacceptable to me. I want his leg straight. If that means surgery, than so be it. I want his leg fixed.
So we return again on Monday to see our regular ortho doc. I never try to sound negative, but I don't expect much improvement, what I do expect is better options.
After the new cast was put on they did another x-ray to see how it looked and the bone had slid again during the casting. The PA who we were seeing said that a 2 to 10 degree angle on the bone was considered acceptable, but after the second cast Evans bone was at a 14 degree angle. So, I realize it is only 4 degrees, but to me, thats too much. I have a kid, who's walking ability is already compromised and I don't want to do anything additional to add to his challenges. So the options we were given were we could take the cast off, reset it again and recast it a third time, cut part of the cast away and put spacers in the cast to push his leg into place, but because of his lack of feeling wasn't the best choice becuase they sometimes cause issues and Evan wouldn't feel it as a way to let us know or do nothing and reckeck the leg next week.
I am not thrilled with any of these options. I asked him if our regular ortho, who has seen Evan since he was 5 weeks old and has done several surgeries on him knew what was going on with him and what her opinion was. She was at another office, so he called her, she said she was fine with the way the bone was and to follow up with her next week. I am frustrated. I explained my frustration to the PA. I try so hard to advocate for Evan, but at what point is it advocating versus being a bitch. I know I am not a doctor and I try not to second guess their knowledge, but this seems unacceptable to me. I want his leg straight. If that means surgery, than so be it. I want his leg fixed.
So we return again on Monday to see our regular ortho doc. I never try to sound negative, but I don't expect much improvement, what I do expect is better options.
Wednesday, March 9, 2011
A Bump in the Road
The last two weeks have been great! Evan has been feeling well, happy and gaining weight! We were smooth sailing...until....
Yesterday I took Evan to his pediatrician for a recheck on the ear infection he had a few weeks back. He had already had two courses of antibiotics for it and I figured it was probably gone. I guessed wrong. His ear still looks red and inflamed and we were started on a third course of an even stronger antibiotic. Our pediatrician also gave us a referral to see an ENT to discuss the possibility of tubes. She's not convinced that he needs them, but wants us to see them regardless since this is his first ear infection and it has been so resistant. I can handle that. All kids struggle with ear infections. But then...
Last night as I was getting Evan ready for bed I noticed his lower right leg was red, hard and warm as it had the the night before. The night before I thought it was due to his AFO being on too tight. Last night I was feeling around his leg and could literally feel his bone move back and forth. I was literally sick to my stomach over it. We were just making progress with him after his surgery. Things had been quiet for a while. I wanted to scream. I took him to see his Ortho doc today and sure enough, he has a break. It is a slanted break so I was told that they would try to set and cast it, but it was similar to putting a ball on the top of a hill, that there was a good chance that the bone would move back down itself on its own. Because he can't move his lower leg, it help the situation, but if it doesn't work, we are headed to surgery.
I was so enjoying some peace and lack of doctors around here. It's just another bump in the road, but one I was not ready for.
Yesterday I took Evan to his pediatrician for a recheck on the ear infection he had a few weeks back. He had already had two courses of antibiotics for it and I figured it was probably gone. I guessed wrong. His ear still looks red and inflamed and we were started on a third course of an even stronger antibiotic. Our pediatrician also gave us a referral to see an ENT to discuss the possibility of tubes. She's not convinced that he needs them, but wants us to see them regardless since this is his first ear infection and it has been so resistant. I can handle that. All kids struggle with ear infections. But then...
Last night as I was getting Evan ready for bed I noticed his lower right leg was red, hard and warm as it had the the night before. The night before I thought it was due to his AFO being on too tight. Last night I was feeling around his leg and could literally feel his bone move back and forth. I was literally sick to my stomach over it. We were just making progress with him after his surgery. Things had been quiet for a while. I wanted to scream. I took him to see his Ortho doc today and sure enough, he has a break. It is a slanted break so I was told that they would try to set and cast it, but it was similar to putting a ball on the top of a hill, that there was a good chance that the bone would move back down itself on its own. Because he can't move his lower leg, it help the situation, but if it doesn't work, we are headed to surgery.
I was so enjoying some peace and lack of doctors around here. It's just another bump in the road, but one I was not ready for.
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