Tuesday, January 17, 2012

Katie and her almost two update

Katie is doing amazingly, wonderfully perfect with patching!! She goes on with life with no complaint! We are thankful for multiple reasons because this means her vision is comparably equal in both eyes and we don't have to struggle with Katie!! Your prayers worked wonders!! We are still waiting for her leg brace, but she is walking more stable and her left leg is not out so wide. Katie is making strides in strength and development!! Her communication is great!! Her vocabulary improves daily!! She is putting two words together often and formed her first sentence, "Mommy peepee in pots." :) Embarrassing first sentences for Mommy, but way to go Katie!! She is very interested in potty training, so pray, as that will come very soon!!
So, keep praying I can see them working!! Pray for continued success with patching, pray for eyes and vision. Pray for walking and adjusting to brace when it comes!! Pray for potty training and for Mommy and Daddy's patience!!! Thank you!
Thank you!
Thank you God!!!

Monday, January 9, 2012

Two Years Old

Two Years Old!!!! What?!? My baby girl!!! I can't really say where has the time gone because this has been the longest two years!! Wow!!! Life changed so much two years ago! A great pregnancy, my water broke, a twice as longer labor than Johnny with weaker drugs and awful pitocin, and a serious threat of cesarean section, but natural and wonderful overall!! 7 family members with us at the hospital until at least 2am. I love my family!!! I could not have survived the last two years without my family and friends!! Over 40 Dr visits in 2010 and around 75 therapies, 20 Dr visits in 2011 with nearly 200 therapy appointments. Life has changed!!!
But I AM THANKFUL!!!!!!! So thankful!!!! Thank you God for the miracle in and through Katie!!!
My daughter had a stroke with significant brain damage and is walking, communicating, understanding and beautifully full of God's great JOY!!!! Katie's future is so big and bright!!!
I am not saying I don't have prayer requests for complete healing, but it could have been much, much, much worse.
I have grown immensely in these last two years! My heart reaches farther, my prayers are constant, I am confident in my God and my Faith!! There is no scientific reason for Katie's stroke or amazing, awesome recovery, but God performed a miracle all around with Katie's birth!!
The 16 days in the NICU were the most difficult, gut wrenching, tear filled, stress filled, emotional roller coaster ever. Seeing your two week old after surgery rips your heart out as it takes your breath and leaves you without words! But Katie is Katie- strong, joyful, adventurous, independent, amazing!!

Thank you God for our big problems because we will have a big future!! Thank you God!!


Today we went to eye dr to follow up on Katie's eye crossing. He immediately noticed the eye crossing had increased and said he'd dialate her eyes then we'd talk about what to do after. He looked at her eyes and reconfirmed that she has no prescription and does not need glasses. Katie's vision delays are related to her brain damage not her eyes. He said Katie will more than likely need eye surgery to correct her eye crossing. In the meantime we have to patch her right eye for an hour a day for 8 weeks!! This will be an immensely long 8 weeks. The Dr is wanting to get a better idea of both eyes and their muscles during these 8 weeks. He doesn't want to correct only the left eye to have the right start to cross after the surgery and need more surgery. Please pray! Pray Katie accepts and adapts to wearing the patch well and quickly! Pray for our patience, endurance and strength during these 8 weeks and through the surgery. The surgery is most cosmetic and is a routine, simple procedure. I will try to think as little about it until the day it happens! But I'd be lying if I said I'm not nervous or apprehensive. It is my baby girl! I still can not get the first look at her after her shunt surgery out of my mind! I greatly, hugely, enormously appreciate your prayers!!! Also, pray as we also introduce her brace in the next week or two!!!

Sunday, January 1, 2012

A look back at 2011

2011 has been a year of great strides for Katie. Last new year Katie was just starting to army crawl and she could sit up. Her vision was at a 3-6 month level. Katie had a few words in her vocabulary. Her left shoulder and arm were very tight and postured tense and tucked in a lot.
Katie went from army crawling to scooting, some froggy hopping here and there and in November Katie started to walk! She loves to walk and climb. She loves to walk up and down steps, and is constantly on the move!! Katie is a very, very busy body. She can pick up the stool and walk with it to get into drawers in the kitchen or to the sink. Katie got fitted for a brace this week. It should be ready in two weeks. She should be showing it off at her birthday party. It will be worn when she is awake throughout the day. They are trying to correct her left foot and ankle, her Achilles tendon is tight and she turns her foot out, and hyper extends her knee. She bears most of her weight on her right leg. She still attends physical therapy and occupational therapy twice a week at CCS.
Katie's vision was measured on May 31, 2011 at a 3-6 month level. Her vision therapy was thankfully increased to twice a week. Her vision and brain connections for vision are still changing. Her vision has improved, but I do not know how much. She goes to the eye doctor next week, Jan 9. I am interested in what he will have to say. I am still concerned about her vision. Her eyes are crossing very often. I am praying for complete healing of her vision, but I am accepting that she may truly be vision impaired. That is difficult to process. But Katie won't let anything stop her from thriving and enjoying her beautiful life.
Katie's vocabulary has grown a lot! She doesn't talk a whole lot, but she can communicate very, very well. She loves to say hi to everyone and bye. Her favorite word is PLEASE!! She can say it loud or sweet and she will hold it out to a 'pleeeeasssse'. And Katie assumes that she will get whatever she wants when she says please. Katie is very independent, very opinionated, very stubborn. She has her own individual joyful personality. She understands much more than we give her credit for. She amazes me daily with something. Her neurologist said he is very happy with her progress. He terms it as Katie will have her own definition of normal. She is doing great. Please keep praying that she continues to progress and that she doesn't have any seizures.
Infant massage made the world of difference in her left shoulder and arm. She still has clear weakness in left arm, but she uses in regularly. She has only a little increased tone in left arm.
Prayer requests to start the new year~
*Katie's eyes and vision, wisdom for opthamologist, that eye crossing corrects and she doesn't need surgery
*Katie's left leg, adjust to brace well, strengthen and correct left leg issues (Long term goal to hopefully no longer need the brace)
*Katie's overall progress continues
*Katie's mom and dad strength for life, patience for Katie's personality, endurance for the draining schedule and doctor's appointments, peace with Katie's normal
Thank you!
Katie's mom, Jessica