farms and the 'Luce' Tooth

Eve went on a class trip to a local farm.  Here are some shots of the animals she saw:

When flossing Eve's teeth nearly two weeks ago, we noticed that she's getting a big girl tooth. Unfortunately, it's coming in *behind* her baby tooth. Since then, it has come up more and there is a second tooth coming up next to it. The baby teeth in front of them are a little bit wiggly. Eve has a dentist appointment in 2 weeks, so we'll find out then if this is a big deal or not. Until then, she's my shark baby.

overdue pictures

Here are some pictures I promised:

Reverse Dog bite

Kate and Eve making cookies

My birthday in April

Grammie, Eve, PaPa, and Josie

UTI...again

Tonight I plan on posting some cute pictures/video, but for right now I just want to get out some details.

Two weeks ago, Grammie and PaPa came for a visit during Eve's spring break.  Eve had a blast.  A whole week of the world revolving around her - what could be better?  She really enjoyed their visit and so did we. 

The day they arrived, she developed a cold.  Stuffy and sick sounding, she got through the week with nightly decongestant, motrin, and a humidifier (incidentally, she had been off the mito cocktail for 2 weeks at that point because of a switch in formula and subsequent insurance denial of coverage...not sure if that is related).  We kept an eye on her.  Fortunately, after about 10 or 11 days, it started to improve on its own.  Usually these things end up needing some medical intervention because she can't seem to shake it.  It's now a full 2 weeks and she's just left with a cough at night.  However, I still needed to take her to the doctor last week.  She has stinky pee again.  I waited for about 2 weeks and then reluctantly took her in. Because of the two times that we asked for a urinalysis and it was negative, we're a bit gun shy.  What if we're wrong?  After a thorough airing of the pros and cons of getting a urine sample to test for a UTI (which needs to be done via catheter), we decided to do it.  And guess what....positive for e. coli.  So, Eve is now on an antibiotic and the doctor is ordering the blood test that the pediatric surgeon suggested (which will test for some enzyme or something that makes people susceptible to e.coli UTI's).  If the blood test is positive, Eve will go back on a prophylactic dose of antibiotics (like she was in GA when she had kidney reflux).  Also, she's back on the mito cocktail because the neuro and his staff worked very hard to get it covered. 

follow-ups

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. 

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.

Happy Birthday, Josie!

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?