Jodi Speaks Her Mind

 

Sick kid 2/27/2008

Filed under: Adelina — jodi @ 12:48 pm

Poor Adelina has been sick since she woke up on Saturday (or more likely, Friday night).  I thought she was getting better since yesterday she was free of fever the entire day without taking any pain reliever/fever reducer.  And Monday she was mostly fever free towards the second half of the day.  In any case, her fever is back today at 103 and I’m not happy about it.  I held off taking her to the Dr. because she started to improve, but her mood, energy, and eating had not yet returned to normal yet.  It looks like seeing the doctor is now a must.

Please keep Addy in your prayers.  She is typically very healthy with a strong immune system, so it is hard to see her so sick.

 
 

Sophie had her surgery 2/23/2008

Filed under: CI Journey, Sophie — jodi @ 11:42 am

Sophie’s surgery was Thursday and she came through it like a trooper.  They successfully implanted both sides with full insertion, which is the goal.  She was recovering from a cold, so the anesthesiologist was ready to call it off if she showed any signs of respiratory distress, but fortunately, she did not.  Because her surgery was so long - 4 hours - her recovery has been a bit longer and slower than Adelina’s but last night she was running about and playing.  Her face is pretty swollen, but she is up and about and frankly making everyone crazy because she wants to do everything she normally does.  But her incision is still so fresh, we have to watch her quite closely!

Her activation is scheduled for March 21, so she will not have any access to sounds until that time.  Hopefully it will arrive quickly, as we are excited for her to begin taking advantage of her implants.

We were really pleased and impressed with the care she (and we) received at the hospital by the doctors, nurses, and all the support staff.  Our only glitch in the whole thing was that we had to wait in post-op for nearly 7 hours for a room to open up.  This was a tad inconvenient for Steve and I but not really so bad for Sophie.  Actually, we had a nurse at our disposal the entire time, so that was certainly a benefit.

Thanks to everyone for your prayers and thoughts during this major event in little Sophie’s life.  We are all very grateful to God for her safe and successful surgery.

 
 

If ever I had a reason to be irate, this is it 2/15/2008

Filed under: Adelina — jodi @ 6:59 pm

I’m so angry and …. well, I don’t know the word!  Adelina - who is still 6 for a few more days - is not yet home from school.  It’s a Friday night and my computer time is 6:43 pm!  Her school dismisses at 3 pm and she is typically home by 4.  When it hit 4:20 and she still wasn’t home (I hadn’t panicked yet b/c it is a rainy Friday and she is coming from Phoenix) I called to find out an ETA.  I was told she had a substitute driver and they also had a couple of extra kids routed with her today.  I was informed that they were still a ways out, but at least I knew she was safe, picked up, and on her way home.

Then, it hit 5:25 and I was starting to get rather perturbed.  That is way too much time for a kid to be in traffic.  Kids are supposed to be playing and having fun.  I called the van company again, but this time it went to voice mail.  No doubt because the dispatchers and coordinators were done with their workday and had gone home!  I left a message with my usual contact explaining that this was NOT acceptable and that she was still not home.  I wasn’t super mad yet, though, because I still naively thought she might arrive home at any moment.  After all, it only takes so long to get from point A to point B even in bad traffic.  Boy, how wrong I was.  Evidently, when CrazyDriver is driving, you can drive around in circles for almost 3 hours and still not find your way.

So, here is how it played out.  It hits 5:50 and I’m starting to get panicky.  Someone has my child in a van and I don’t know where they are and all I know is they aren’t here, so where are they!?  I call again and this time push a different extension and get a general dispatcher.  This time I get abundant apologies and am told that the driver got lost.  Okay, so where is she now?  I’m told she is at an intersection about 8 miles from our house, but in the neighboring town and nowhere along the route from school to home.  At this point, I tell them to please have her stop driving.  We will come pick up our daughter.  I’m so ready for these people to not have her any more in their care.  They are so incompetent!!  In order to get that to happen, I had to insist that they find me a supervisor.  I was told the supervisors were in an important meeting.  Who has important meetings at 6 pm on Friday evening!?  In any case, I wait a good while, but somebody does eventually come to the phone, and once he understands the situation, he is appalled at what has happened and determined to rectify it.  He instructed the driver to STOP (which I had been trying to have them do for quite some time).  She had now driven an additional 6 miles the opposite direction from our house and into the next town and even crossed a major highway in the process - (how on earth do people with such poor directional skills become a driver for a transportation company!?).  Steve, thankfully, was en route and in another 15 minutes arrived at her location to claim Adelina.  She was hungry and a bit shaken, but otherwise okay.  I spent some more time on the phone with the van company, but they are not through dealing with us regarding this nightmare.

It is just around 7:00 pm and I expect them to arrive home in the next 5-10 minutes.  So let’s see, that’s 4 hours from door to door.  Can you imagine!?  I think there might be steam coming out of my ears.

Ok, thanks for listening to my rant.  I had to get that out.  You may return to the more pleasant things in life now.

 
 

No news is good news 2/9/2008

Filed under: Sophie — jodi @ 5:05 pm

I had been keeping quiet about this, but I’m ready to post about it and explain what we know.  We had an appointment today for Sophie to see a retinal specialist because the pediatric opthalmalogist she saw a few weeks ago had observed some abnormal cells in the pigments of her retina.  When he said this we feared she might have retinitis pigmentosa, and we hoped the specialist today could confirm or deny the likelihood of this.  For those who don’t know, retinitis pigmentosa is a degenerative vision disorder that leads eventually to blindness though, fortunately, rather slowly.  Retinitis Pigmentosa when partnered with deafness is called Usher Syndrome and includes poor balance as a primary symptom.  Since Sophie has terrible problems with balance and has profound deafness in both ears, RP would have sealed the deal and made Usher Syndrome a frighteningly appropriate label for our sweet child. Usher Syndrome is the disease responsible for a majority of cases of deaf-blindness.

It is still possible she could develop RP or that she does have Ushers’ but the retinal specialist said the abnormalities did not appear to be a clear case of RP at this time.  He said we’ll need to monitor her for any changes, but for now, he felt we should not assume she has it.  Fine by me! Thank you God for “no news” at the doctor’s office today.