February 21, 2010

Hope Admiring Herself in the Mirror

Hope has had a very good couple of weeks. She went to the nephrologist (kidney doctor) and many of the concerns that they had previously, we are no longer too worried about. Her blood pressure had been a little high but the doctor thinks it might just have been the inaccuracy of the blood pressure cuffs, so we aren't going to take her blood pressures regularly any more. Also, her latest blood work came back normal which is fantastic. When Hope was hospitalized back in September she had a lot of blood work done then and in the weeks following. Based on that blood work the doctors assumed Hope's kidneys were only working about about 50%. With this latest batch of blood work coming back normal they think that the spike we saw last fall was mostly if not all tied to the infection that hospitalized her and that her kidney function is far closer to normal than we thought.

Hope will be venturing back to Ann Arbor this week to begin her weekly pre-op visits for cochlear implant evaluations. She has to go 3 or 4 times in the next few weeks for evaluations and then once in March to meet the surgeon who will do the implants. Hope is not officially a candidate for the implant yet - she will have to have hearing tests done by the audiologist, with and without her hearing aids. If there is some evidence that she can hear but not well (even with the hearing aids) then she should be a candidate for the implants without further testing. If we don't see evidence of hearing then an MRI might be needed to confirm that her auditory nerve is present and at least some what developed. Hopefully these visits all go well; they make for long hard days for Hope.

Other great progress that Hope is making is that she seems to be reaching for some of her toys. She has grabbed on to a toy and picked it up once and she grabs for the toys in her crib. The is wonderful progress as one of her physical therapy goals is to develop an "active grasp", or taking the initiative to grasp an object instead of just holding on to it because it was placed in her hand.

Daily Dose: Wednesday, February 3, 2010

Hope's beautiful smile

Hope laughing it up

If she isn't the most beautiful girl in the world, I don't know who is!!! Seeing these pictures of Hope smiling and laughing has given me a little more motivation in my life and reminded me to pick my chin up and keep pushing through.

Now, back to Hope....

Hope is doing well. Things went quite well last Tuesday the long drive to Ann Arbor and the appointment. The appointment itself was rather uneventful as Hope's mommy & daddy really did not leave with any more information than they went with. It seemed to be the necessary introductory meeting for everyone: they had planned to tell us Hope would need a CT scan, hearing aids, etc. Hope has had these for months now, so there was really no new news. We have been told that we will need at least 4 more pre-op appointments with the cochlear implant team before surgery.

Other appointments last week have had more of an impact. Hope's appointment with the pulmonologist on Wednesday went extremely well. The pulmonologist was so impressed with Hope's status that they have begun weaning Hope of most of her respiratory medications, and if things continue to go well they will try to wean Hope's vent settings at our next appointment.

The somewhat less positive appointment was with the developmental pediatrics clinic. Hope was officially diagnosed with cerebral palsy (CP). Although we knew CP would be a likely outcome of Hope's brain injury, we were under the impression that it is rarely diagnosed before 2 years of age and no one was completely prepared for the news yesterday. Evidently, CP is a rather obvious diagnosis for Hope and the doctor felt no need to wait. While no one knows the form or severity of the disease yet, the news did hit everyone pretty hard.

Hope got her RSV vaccination Monday and had to be weighed beforehand. She weighed in at 24 pounds 5 ounces.... just slightly bigger than she was one year ago - 2 pounds 8 ounces!!!! Who would have thought she'd have come so far!!

As you can see from the picture, Hope has been smiling more and more and has even started laughing! It's a silent laugh because of the trach but it is still the most beautiful thing in the world right now :)