Last week Faith had her semi-annual Spina Biffida Clinical appointment. During this visit Faith's entourage of Doctors & Therapists come to the clinic and check up on Faith to see how she is progressing. It is a great appointment for the Doctors to regroup and adjust the plan for continued growth and therapy and discuss any issues that we are encountering along the way. All of Faith's Doctor's love seeing her and they are encouraged to see how well she is doing. During this visit we received tons of great news.
New Doctor
During this visit we were privileged to meet Faith's new primary doctor at Children's Mercy, Dr. Gratny. Dr. Gratney is on a special team dedicated to kids on ventilators. This team will be on call for Faith 24/7, a nice perk for Vent kids... Faith somehow knows how to get all the perks :) Dr. Gratney spent some time with Faith and got to know her pretty well (Faith let her see one of her blue spells). Dr Gratney seems very nice and is definitely going to be a great advocate for Faith's health and development.
Lungs
Dr. Escabar (the Pulmonologist) was very encouraged by Faith's improvements over the last few weeks. After about a week of being on the ventilator at night Faith has been able to support herself throughout most of the day without the use of oxygen! PTL!!!! Dr. Escabar's plan is that Faith will continue to be on the ventilator at night to help expand her lungs and prevent apnic events. His hope is that after couple of weeks with a good track record, Faith can go without oxygen or a monitor all day! Come on cordless baby!!!
While Ashley and I do share Dr. Escabar's enthusiasm, we are very nervous about taking Faith off of the monitor. We do not want to risk Faith's health just to get rid of a piece of equipment and she has a tendency throw us curve balls from time to time. Please pray for continued improvement on her part and wisdom on ours as we prepare to make this transition.
Urology
People have been asking how Faith's kidneys are doing. To hear that Faith's reflux had gotten so much worse was very concerning, even for us, but during this appointment Dr. Murphy (the Urologist) informed us that her kidney's are just fine. We are now cathing Faith every four hour's during the day as a preventative measure against kidney damage and infection. This sounds like a lot of work, but it really is a very simple procedure and is just a quick step during her diaper change. It was great to here that no harm had been done to Faith's kidneys. PTL!
Occupational Therapy
We have been working very close with the occupational therapist in the last few months and Faith is taking more and more food by mouth all of the time. We have continued to push back Faith's swallow study until there is sure to be some information to be gained from it. Taking on baby foods is definitely getting easier for her. Over time we are to start watering them down to help her learn how to manage liquids without aspirating them into her lungs. It has been a slow process that has been very interesting to watch. Sometimes she just doesn't seem interested in eating by mouth. Who would have thought... a Pfeifer/Grindal who doesn't love to eat :)
Speech Therapy
That's right... you heard me... we got to hear Faith talk!!! Dr. Gratney gave us a Passy-muir valve. Now that Faith is old enough and breathing without the help of oxygen we can place this device on the end of her trach. The valve allows air in through her trach but not out. The air that she breaths out is then force up through her normal airway and through her vocal cords, enabling her to make sound. And what a sweet sound it is.
As expected she didn't like it at first, as you can see for yourself on the movie below, but as we continue to use it breathing out her nose and mouth won't be so strange.
We have been trying to make her laugh with the valve on, but it dosent seem to work to well. I think she laugh's so hard it makes her uncomfortable. Still fun to watch though.
Thanks for your continued prayers.
Love,
The Pfeifers
