Hello One Years Old!!

Peanut Butter Pie since she can't cake. :) BTW, she loved it!!

She Loves being a toddler!

A year in pictures.

Merry CHRISTmas!!!!

Spina Bifida Clinic

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

Run with Faith

Thank you every one who participated in the run with Faith. As you can see in the video below it was truly a success. A special thanks goes out to Faith's aunt Allison for organizing the event. Her dedication to Faith has been truly humbling.

Thank you everyone!

Much Love,

Team Pfeifer

Follow up to Kidneys

We received a phone call from CMH letting us know that it would be best if Faith would be cathed every four hours.  This would help the pressure off her bladder and it would also help all that urine going back into her kidneys.  However, they did say that her kidneys look healthy and this will hopefully keep them in good condition.  On Monday, a week ago we went to CMH to learn how to cath Faith.  It is a VERY EASY thing to do.  The whole process takes about two minutes.  She will be doing this her whole life.  Faith holds so much urine in her bladder, I'm sure she has been in pain with it.  She just doesn't have that control to be able to release it when she needs to go.  Since it's been a week we really feel like it has been helping her moods.  Yes she is still passing out, but we feel like it has been because she isn't getting her way or she is mad for some other reason. Side Note: I often think about how I want to ask Mr. & Mrs. Ezzo, the author of Baby Wise and Growing Kids God Way, What is your advice about letting your 10 month old baby have their way, if the consequents is they pass out if they don't win.-please no answers, she will be getting her way until she stops passing out or she is old enough to know what's really going on.

Kidneys

We made our way to CMH for three clinic visits all about Faith's Kidney's yesterday.  In January 2011 Faith had all three of these tests done and we found out that one of her kidney's has a slight reflux, grade 2 out of 5.  They told us not to really worry about it, that sometimes they will fix themselves.  So we did what they said and didn't even think twice about the reflux.  As I said yesterday we went and did the same three tests.  We did not speak with our kidney doctor, he is suppose to be calling us on Friday with more information.  The first study that was done was a Urodynamic/Uroflow study.  This shows how much urine Faith holds before letting it release into her diaper.  They also test her urine to see if there in any infection.  The second study was a Renal Ultrasound.  They took pictures of Faith's kidneys and bladder.  The third was a Coiding Cystogram.  This is where they take x-rays of her kidneys and bladder with urine in them, while the urine is coming out, and while the bladder is empty.  We were told yesterday that when you have a reflux in your kidney your bladder in never really empty.  Right after the last study with the x-rays that Doctor was able to tell us what he saw in the x-rays he took.  I WAS NOT NOT NOT EXPECTING WHAT HE SAID NEXT... The reflux in her right side was a 2 and is now a 5 (the worst grade) and the left side (which before had no reflux) is now a 4.  He went on to tell us a few options on what the kidney doctor might say but he also said before you repeat these options I would speak with him first.  We were about to leave the x-ray room when the first nurse who did the Urodynamic/Uroflow came back into the room holding a basket with a needle in it.  She then explained that Faith's urine had come back positive for bacteria.  Since she had so many different things done to her kidneys today that this shot of some short of antibiotic would help her.

Definition: By Mayo Clinic Staff....

Vesicoureteral (ves-ih-koe-yoo-REE-ter-ul) reflux is the abnormal flow of urine from your bladder back up the tubes (ureters) that connect your kidneys to your bladder. Normally, urine flows only down from your kidneys to your bladder.
Vesicoureteral reflux is usually diagnosed in infants and children. The disorder increases the risk of urinary tract infections, which, if left untreated, can lead to kidney damage.
Vesicoureteral reflux can be primary or secondary. Children with primary vesicoureteral reflux are born with a defect in the valve that normally prevents urine from flowing backward from the bladder into the ureters. Secondary vesicoureteral reflux is due to a urinary tract malfunction, often caused by infection.
Children may outgrow primary vesicoureteral reflux. Treatment, which includes medication or surgery, aims at preventing kidney damage.

Neuro/Pulmonary Update

Neurosurgery

We called Faiths Neurosurgeon to request an interpretation of Faith's MRI. The conversation was brief and all good news. The MRI revieled no new developments or concerns PTL! Infact, the only change they saw from the scans was that the pocket of fluid in the middle of her spine has decreased in width and increased in length. This is not a concern as long as we have not seen any loss in motor skills (which we have not). Neurosurgery said that everything looked great and they would like to see her in clinic in 6 months. They will continue to watch her as she grows.

Pulmonology

Last week we had a pulminology appointment to see if they would adjust Faith's bi-pap settings. Faith sleeps with a bi-pap at night to help her maintain good oxygen and CO2 levels while she sleeps, she has some difficulty with this. While she seemed to do well on it when we first came home, she seems to have grown out of the settings, her sleep has become wrestless and her oxygen levels keep dipping.

Durring Faith's appointment, the Pulmonologist informed us that bi-paps are not designed for infants. And in faith's case the settings are not precise enough for Faiths needs. He told us that Faith should be on a ventilator at night. Ashley and I didn't like hearing this. From the beginning we have been praying that Faith dosen't have to be on a "life support" machine. But the doctor went on to explain that in Faith's case the ventilators function would not be much diffrent than the bi-pap. It would just help her sleep more comfortably and safer. Hearing this made the idea much easier for Ashley and I to swallow.

In order to be trained to use the new piece of equipment Faith will have to be admitted to the ICU for up to two days. We are still waiting to hear back on when this appointment will be scheduled.

Fun Stuff

Tonight we attended the annual church event at Gary's Berries. We had a great time. ALL OF US! I took Faith down the slide twice. This is something I did with both of the other kids in the years past and wanted to do with Faith too. I was tenative at first, but after some coaxing from my wife and a few friends, I decided Faith had it in her. She loved it! And it was good for me too.

Enjoy