So, Eve has had a couple more Dr. appointments. Two weeks ago, we went back to the pediatric surgeon to followup on the VCUG. Unfortunately, she totally got sick in the car. It was a mess. We thought it might have been car sickness, but I think it was a stomach bug. Which I have to say is a relief. I was not looking forward to another issue that we had to deal with. Especially since 90% of her dr. appts are at least 1.5 hours away. Anyhow, the pediatric surgeon said she does NOT have kidney reflux. He did say that if she gets another UTI and they determine it is caused by e.coli, there is a blood test he wants her to have. Something about some people having a predisposition for UTI's caused by e.coli. It would require a prophylactic dose of antibiotics. So, that's good. We don't need to follow up with him.
Then on this past Thursday, we drove back out to Springfield to go to the Shriner's Hospital for Children for an orthopedic evaluation. Her pediatrician referred us after we saw her about Eve's legs cramping up. What a nice hospital. Very chill. It was amazing to see all the other children in wheelchairs. Eve fit right in for once. It made me a little misty. Anyhow, they talked to us and moved her legs around. They also took xrays of her pelvis. I forget the terminology, but her hips are partially out of their sockets. They said they don't think her muscle cramps are related to the hips, and that this is to be expected of a child who is in a wheelchair and doesn't stand, etc. They said it may also be why she isn't tolerating her stander. She doesn't really seem to be in pain because of her hips otherwise (e.g., diaper changes don't seem to cause discomfort). One option would be to fix it with surgery, but there is no guarantee they wouldn't pop out again. We discussed our philosophy that Eve's happiness is most important. We are not interested in forcing a kid to have surgery if there is no hope she will ever walk or move independently. The doctor agreed and said we should just monitor it for now. We don't need to follow up with them (yay!) unless there is a problem. And if it turns out that she is in pain from her hips we can always manage it with medication.
Speaking of medication, about a week ago, Eve started waking up again in the middle of the night. I called the neurologist on Thursday and he increased her dosage of the Baclofen. Eve woke up just once that night, but about 6 times last night. It's very hard to be patient in the middle of the night when you need to get out of bed so many times. She is clearly uncomfortable, and her legs are almost locked, making it too hard for her to shift position. I don't know what to do. I guess we see how it goes for another week and then call the neuro back. We do have an appointment with a physiatrist in Boston in June.
All else is well. I'm feeling great and the baby is kicking up a storm. Jim is doing well and Josie is, well, Josie. A lovable pain in the butt.
Saturday, April 9, 2011
Friday, March 18, 2011
Baystate visit
Yesterday we took Eve to Baystate for some testing/appointments. First stop was her neuro checkup. A quick visit. We mentioned how her leg has been acting up. He asked us if we thought she was in pain. The answer to that is definitely sometimes. There are times she will wake in the middle of the night crying fast and hard. It's like her little leg is having a spasm. He recommended either Valium or Baclofen at night. He ended up prescribing the Baclofen because it lasts longer and is less sedating. So we gave it to her before bed and - miracle of miracles - she slept through the entire night!!! So, I truly hope it gave her relief and was not a fluke. So, we'll see how tonight goes. We also told him that she has an appointment at the Shriner's hospital to look at her leg and muscles. (**update: She slept through the night again!**)
Eve also had a VCUG at the main hospital. I was dreading this, since Eve has had it done twice before and it was not pleasant to say the least. Fortunately, this time was different. Rather than placing her on a regular Xray table and filling her bladder all the way and watching her scream until she finally pees on the table, it was much better. They had her on a table that looked like it was connected to a CT scanner. They catheterized her and slowly dripped into her bladder a liquid with a small amount of radioactive material. They put her diaper back on and she just had to lay on her back. She was scared and cried, but wasn't in pain (after the initial cath process). She wasn't hysterical like in the past. I was able to tell her that if she just peed, we could get out of there. It wasn't much longer before she did. The staff was great, and it was a much better experience than I was expecting. So now we wait for about a week until we have our followup with the surgeon.
Eve also had a VCUG at the main hospital. I was dreading this, since Eve has had it done twice before and it was not pleasant to say the least. Fortunately, this time was different. Rather than placing her on a regular Xray table and filling her bladder all the way and watching her scream until she finally pees on the table, it was much better. They had her on a table that looked like it was connected to a CT scanner. They catheterized her and slowly dripped into her bladder a liquid with a small amount of radioactive material. They put her diaper back on and she just had to lay on her back. She was scared and cried, but wasn't in pain (after the initial cath process). She wasn't hysterical like in the past. I was able to tell her that if she just peed, we could get out of there. It wasn't much longer before she did. The staff was great, and it was a much better experience than I was expecting. So now we wait for about a week until we have our followup with the surgeon.
Thursday, March 17, 2011
Wednesday, March 9, 2011
decisions...
We have happy news to share - we are having a baby this summer (end of July)! I had my ultrasound yesterday and all looks well. We don't know if it's a boy or a girl (by choice), but are relieved that for now the baby appears healthy. I'll post pictures soon, but there are no cute profile shots - just Skeletor frontal face shots.
So, we need to make a decision about the future of this blog site. Do I keep it about Eve and create a separate blog, or do I shift the focus to include the new baby and have the blog center around our family?
So, we need to make a decision about the future of this blog site. Do I keep it about Eve and create a separate blog, or do I shift the focus to include the new baby and have the blog center around our family?
Monday, February 28, 2011
details
This is one of those posts that is more for me than you, but it will keep you up to speed on what's going on.
Eve is well. She's been relatively healthy. She had a UTI recently, so we have a VCUG scheduled at Baystate later in the month. It will definitely not be pleasant for her, but we will be able to see if her kidney reflux is not resolved as previously thought. That same day we have an appt with the neuro. Jim will be with me for both appointments, which is a huge help. The following week we will have a followup with the pediatric surgeon (who really functions as a pediatric urologist) to discuss the results of the VCUG. I was also able to schedule an appointment with a physiatrist in Boston for the same day we are headed there this summer for Eve's mito doc appointment. I am hoping this is a better fit than the last physiatrist that we saw a year ago. Eve's functioning has changed, so we also may need this appointment more than we did last December.
Eve seems to be having more trouble adjusting herself throughout the night. She always sleeps on her stomach and until now has had no problem shifting her head from one direction to the other. Lately she often wakes up crying with her arms flailing up and behind her. She seems to be struggling to get a purchase on the mattress to adjust her body. She just doesn't seem comfortable. Some nights are good (0-2 wakeups) and some nights are bad (approx 15 wakeups). It's been tough. We'll mention this to the neuro and to the mito doc and physiatrist.
I am also concerned that doesn't seem to be tolerating her stander. This has been an issue for a while at school, but not at home. Over the last 2 weeks it has happened at home as well. We are not sure if she just doesn't have the strength anymore or if it is just no longer comfortable.
Oma and Pop came for a visit this past week (and I can't believe I didn't take a single picture!!). Eve had a blast. So much so that when they left she was a pain in the butt. But, after a week of their undivided attention, it was an adjustment back to Mom and Dad who need to actually do stuff. Today was back to school and I sang a song about it (literally) this morning. Yay! All else is well.
Eve is well. She's been relatively healthy. She had a UTI recently, so we have a VCUG scheduled at Baystate later in the month. It will definitely not be pleasant for her, but we will be able to see if her kidney reflux is not resolved as previously thought. That same day we have an appt with the neuro. Jim will be with me for both appointments, which is a huge help. The following week we will have a followup with the pediatric surgeon (who really functions as a pediatric urologist) to discuss the results of the VCUG. I was also able to schedule an appointment with a physiatrist in Boston for the same day we are headed there this summer for Eve's mito doc appointment. I am hoping this is a better fit than the last physiatrist that we saw a year ago. Eve's functioning has changed, so we also may need this appointment more than we did last December.
Eve seems to be having more trouble adjusting herself throughout the night. She always sleeps on her stomach and until now has had no problem shifting her head from one direction to the other. Lately she often wakes up crying with her arms flailing up and behind her. She seems to be struggling to get a purchase on the mattress to adjust her body. She just doesn't seem comfortable. Some nights are good (0-2 wakeups) and some nights are bad (approx 15 wakeups). It's been tough. We'll mention this to the neuro and to the mito doc and physiatrist.
I am also concerned that doesn't seem to be tolerating her stander. This has been an issue for a while at school, but not at home. Over the last 2 weeks it has happened at home as well. We are not sure if she just doesn't have the strength anymore or if it is just no longer comfortable.
Oma and Pop came for a visit this past week (and I can't believe I didn't take a single picture!!). Eve had a blast. So much so that when they left she was a pain in the butt. But, after a week of their undivided attention, it was an adjustment back to Mom and Dad who need to actually do stuff. Today was back to school and I sang a song about it (literally) this morning. Yay! All else is well.
Saturday, February 5, 2011
snow dog
We've gotten lots of snow up here. I was shoveling off the back deck today and I let Josie out. She jumped off the deck and belly flopped into snow that is over her head. I grabbed the flip when she couldn't get back up on the deck.
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