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 :)

A note from Hope's mom & dad

Hello All,

We thank you all sincerely for your thoughts and prayers - it has been a long 30 days for the 3 of us, and your support has helped us get through some difficult times.

Today has been one of the rougher days we have faced. Hope's cranial ultrasound this morning indicted that she has areas of PVL - periventicular leukomalacia. These are basically areas of damaged brain tissue and will not be able to heal. The ultimate result of this for Hope is most likely Cerebral Palsy. The doctor claims that he does not feel that this will be severe enough to leave her in a vegetative state, as she continues to exhibit great activity. He also has indicated, however, that it is not likely one of the more mild cases of CP either.

Cerebral Palsy can affect people in two ways - by affecting motor skills and by affecting cognitive skills. While it is possible to have CP manifest in only one way, the doctor believes it likely that Hope will be affected in both areas. This will not be immediately evident in her behaviour - we will most likely not be able to determine the severity until she goes through the developmental process.

While this has been difficult news, we are still thankful for the fact that we still have Hope with us. Had we been given the choice of having Hope (even with significant challenges) or having a normal life without her, we would have picked having Hope without a thought. We have been so blessed to have been entrusted with the parenting of such a precious little girl, and we know all of you will join us in loving and supporting her through her challenges.

Again, thank you all for your continued prayers, thoughts, and support. Our lives are in a stage of profound transition, and knowing we have all of your support gives us great comfort in this time of need.

With Love,

Andrew, Sarah, & Hope