March 2013

March was a fairly uneventful month and we are thankful for that! :)  Faith will not be having her reconstructive surgery anytime soon.  They will not do the reconstruction until the cyst on her brain stem is resolved.  She has an MRI the end of May to reevaluate the cyst.  She is having no symptoms that suggest the cyst is causing any issues. 

Faith is busy working on her skills.  She can now get from flat on her back to sitting.  She can also get on her knees.  Her newest 'trick' is pulling herself up to standing by her tub of toys.  She will rock back and forth on her knees but isn't interested in crawing.  She would rather hold your hands and 'walk'. 

Faith is also busy getting in teeth.  She is working on #4.  I can't wait till they are in father so I can get an adorable toothy grin!

Here are a few pictures from March:

Happy 8th Birthday to our Jewels!  You are the best four legged family member ever.  We all love you! 3/21/13



Happy Girl playing with Mommy! 3/16/13

February 2013

Faith turned 15 months old today!  It is amazing how time flies.  February was a busy and tough month.  December to March is a notoriously busy time for me at work so that just adds to an already busy schedule.  Faith is doing well and making good progress with Occupation Therapy (OT) , Physical Therapy (PT), Vision Therapy, and Feeding Therapy.  She has OT, PT and Feeding Therapy each once a week.  She had Vision Therapy once a month and a visit from her Early On Infant Teacher twice a month.  They will be introducing Speech Therapy soon too.  Those visits along with the specialist that she sees, makes for a very busy little girl.  Most weeks she has 4-5 appointments. 

We are very disappointed that after 2 tries, her cyst is still pressing on her brain stem.  We are very thankful that she is doing well and isn't exhibiting any symptoms.  Her Neurosurgeon ordered a follow up MRI in late June.  In the meantime, we just need to watch her close for any symptoms like trouble breathing or swallowing.

On Friday, we have an appointment with her Urologist to talk about her reconstructive surgery.  He will work with her General Pediatric Surgeon.  Her Urologist will reconstruct her Vesicostomy (urine) and Vaginostomy (vaginal opening).  Her General Pediatric Surgeon will reconstruct her Colostomy (stool).  There is no rush for this surgery, however, the older she gets to harder it will be because she is more aware of everything going on. 

Here are a few more pictures taken in February 2013:


Playing with my Kitties

Green Beans are Yummy!

Dani Grace (my cousin Jill's daughter) & Faith having a play date with their Grandma's 

Riding on the tractor with Daddy!

Happy Valentine's Day

Happy Valentine's Day Everyone!  I love to wave hello and goodbye.

All dressed up in Daddy's snowsuit to go for a tractor ride with him and plow the snow!

Update for January

Well by now you have all figured out that I am terrible at being a consistent blogger and I apologize for that.  I do my best but it is so easy to update Facebook and time is so limited.  Here is what has happened in January:

January 14, 2013
MRI day... again. A 3 month follow on brain and one of her abdomen to prepare for up coming reconstructive surgery.


January 24, 2013
Surgery #11 tomorrow at Noon for Faith. The cyst on her brain stem is significantly larger. Her neurosurgeon will place another catheter off her current shunt into the cyst. Your thoughts and / or prayers are much appreciated. ♥

January 25, 2013
My Pre-Surgery Curls


Waiting For Surgery



Faith went into surgery at 1pm and total it will be 5-6 hours. His includes an hour to run antibiotics, getting her set, actual surgery, and post op.

Neurosurgeon was unable to complete the surgery because she started bleeding when they tried to do the 3rd/final incision. He tried it twice and bleeding both times so they are closing. Please pray there is no bleeding in her brain. That would be very bad news bears! :(. She is in recovery now and I am anxiously waiting to see her. Even harder that Daddy is sick at home! :(

Post Surgery


January 26, 2013
Faith had an okay night and is doing okay today. Working to keep the pain under control so she stays comfortable. She needs to be on IV antibiotics till Monday because of the high risk of infection. We are missing Daddy! He has to stay home because he has a double ear infection and bronchitis. :( Visitors are being limited in the hospital because of the flu epidemic. The Children's Hospital ...is overflowing to Butterworth! Please practice good hygiene and stay out of public if you are sick. It is awful for anyone to be sick and horrible to have a sick child. You may expose a child or person who has compromised immune system or other issues. We never know when Faith might need an urgent surgery and her being ill could cause serious complications.

Faith had a good day. Since surgery she has had 2 CTs and they were both clear. We are so thankful for that. She is acting like her happy self and is doing well with pain management. She needs to stay on IV antibiotics till Monday because of the high infection risk. If it wasn't for that, we could go home now. She is getting restless because she feels to good and wants to play and roll around...d but that doesn't work well when you are hooked up to so may things.

The big question is: what are they going to do now about the cyst pressing on her brain stem? The answer is: they don't know yet. For now, it is okay because it is not causing extreme symptoms (I.e. unable to breathe or swallow). She does have a horrible gag reflex so that is a symptom of concern. We will let everyone know the plan when we do. But for now... We don't know and only time will tell. In the meantime, keep our little miracle in your thoughts and prayers. Thank you! ♥

January 27, 2013
Faith had a good night and is having a good day. She is bored and so are we! She is eating well and just getting Tylenol for pain. Her last does of IV antibiotic is at 8 am tomorrow morning. Hopefully we can blow this Popsicle stand at a decent time tomorrow. We are so anxious to get home. Unfortunately Daddy is still home sick. :(

Playing on the floor. So glad they let me out of my 'jail' crib


Trying to Escape


January 28, 2013
Faith's last dose of Vanco (antibiotic) just finished. Now we are just 'patiently' waiting for Neurosurgery to round on her....

We are home from the hospital. Faith is doing well. Just have to keep from scratching her 3 incisions so she is wearing socks taped to her hands to bed and she is not real impressed with that. It is critical that she doesn't scratch her sutures open or she will probably leak CSF (cerebral spinal fluid) and have to be admitted again. The plan is for an MRI in 3 months and monitor her closely for signs of cyst pressing on brain stem (unable to breathe, swallow) and shunt malfunction (fever, loss of skills, and many others). For now, we are all so glad to be home and sleep in our own beds tonight!

January 29, 2013
Faith had a good night last night and a good day today. She isn't thrilled to have socks on her hands for napping and sleeping but is doing better than we expected. :)

ShannyBear loves toothpaste

Photo Taken By Amy Carroll Photography

Christams 2012

Aunt Melissa spoiled me rotten with a lot of adorable clothes and toys too!

One Year Pictures!

Once again my bestie, Amy Carroll, has done a perfect job of capturing our adorable miracle.  Her words and images brought me to tears.  Here is a link to her blog post of Faith's One Year Pictures: http://www.acarrollphotography.net/2012/12/baby-faith-one-year/

Birthday Celebration #1 of ? 11/18/12

Faith will be turing 1 on December 5th.  This picture is from the first party that we had for her.

Lovin my new train 11/27/12