The kids are getting ready and happy to open presents on Christmas morning

our little Kahlia being held by Kahlia - whom we named our little girl! :-) This was the first time that Kahlia got to meet Kahlia - what fun! :-) I met Kahlia when she was going into the 4th grade when she was a camper in my group at Camp Tilikum. She has always held a special place in my heart, and has grown up to be a beautiful, smart, wonderful young lady. God has some amazing things in store for this young lady!!! :-)

All the kids at grandma and grandpa Brown's house before Christmas

The Christmas season - a time to remember what Christ has done for us - the blessings that we have received, and a time to give to those that we care about most...ahh - family time is the best! :-) We had a GREAT Christmas vacation - and the kids are still enjoying theirs. We spent 5 1/2 days at my parents house before Christmas, it was fun to spend time with my side of the family - and we took in 2 appts. for Kahlia at OHSU. The first was on Wednesday - Scott took Kahlia to a sedated hearing test. I stayed back with mom and the kids - it was Scott's first time to go by himself - and yes - he did just fine. :-) The results of Kahlia's hearing test - she has mild hearing loss - but the inner ear is just fine...she has large holes in her ears which is what has caused the loss of hearing, but they can't close the holes until she is much older for fear that her ears would "burst" with out the holes there for drainage. So - though the hearing loss is not serious - it's enough that they recommend hearing aids during her language formative years. It is important to give her every opportunity to learn speech correctly - she needs all the help she can get! Then, after she has learned to talk well, they will probably not be needed any more. She will be able to live "normal" with out the hearing aids. It's a bummer - but we're willing to do what ever it takes to give her every opportunity she needs to catch up!!! :-)

The next day, I took her to OHSU for a physical therapy evaluation. She will be having a full CDRC evaluation in March or April (Child Development Resource Center), but I wanted to get the ball rolling with Physical Therapy since she still is not walking! It went well, and they recommended both swimming lessons and tot gymnastic classes - excited to get started on these! :-) By looking at her - they know she will be walking - it's just a matter of when. She has A LOT of initiative - she REALLY wants to walk - she just can't. Often at home, she stands up on me and wants me to walk so she can walk holding on to me - she walks any chance she gets if someone will hold on to her. Time, Time, Time...It's hard to be patient when we all want her to walk so bad!! I have to admit though - when she starts walking - my life is going to be turned upside down. She has SO much energy!!

We had a wonderful Christmas with our family here at home. Scott's sister Trisha, her 3 kids Charlie, Samantha, and Alexandria, plus Scott's mom were here - everyone had a great time. Kahlia now knows how to open presents - she's learned a lot since her birthday in September! She had a wonderful 1st Christmas - even though age wise it would have been her third! She loves the lights, the tree, and tried opening ALL the presents! ;-)

It is now the end of December, and the kids STILL love and adore Kahlia as if she came last week. I love having the kids a little older then her - they all treat her like she's their little princess - I love them all SO much! :-) I am so grateful for each one of them. Brendon - the oldest, can do no wrong in the eyes of Kahlia. She adores her big brother SO much! I saw Brendon play football with her today - I'll let your imagination figure that one out, but he really was! Makenna is such a little mom. She takes care of Kahlia the most, and does such a good job. She is very responsible - making sure she stays out of trouble, and being careful that she doesn't put anything bad in her mouth - she really is a HUGE help to me. If I ask her to do something for her, she rarely complains - what a blessing! David is the little "big" brother. His favorite thing to do is literally scream in her face just to get a reaction. I think he enjoys finally having a younger sibling to completely annoy - grateful it's not him! In all seriousness though - he loves his little sister - constantly hugging her (often a little too hard I might add!).

So grateful for the family God has given Scott and me. God has an amazing way of giving us exactly what we need, even though we don't even know we do! :-)

Looking forward to 2011 - a year with hopefully a few less medical issues, and a little more dull moments. :-) It's been a tough year trying to keep my family intact, but as we enter into a new year, I am mindful of God's promise to us in Colossians 1:17 - "He is before all things, and in Him all things hold together." Wow! That should be my theme verse!! :-) Thank you Jesus that YOU are in control - I wish all a Happy New Year!!!! :-)

6 days ago - we had Kahlia's post op appt., and we found out that her surgery did not take. The muscle tissue on the top of her mouth pulled back apart - almost making it worse then it was before. Monday ( the day we found out) was a tough day for me. After going through all that, knowing we have to go through it all again is SO discouraging! The surgeon said we will have to wait 6 months to a year before he will do the surgery again - probably closer to a year. Not only does she have to endure the pain of another surgery, but her speech will also be delayed now as well - even more then it already is! So, we are checking out more "Signing Times" DVD's and we are going to be more diligent about teaching her more sign language. What we have taught her, she has picked up quickly, so we all need to learn more so we can teach her more too! It's nice for little one's to be able to communicate before they are able to verbalize what they want to say! Some of the words she can already say in sign language are: drink, eat, please, more, thank you, ball, shoe, dog, and cat - that's about all we know - so we need to start learning ourselves!!

Putting it in perspective, her heart surgery went well - her Cardiologist is VERY pleased with her progress, and she has absolutely no restrictions from a Cardiac stand point! Between the two surgeries, I'm grateful tht her heart surgery went well - and her cleft palate is not life threatening...

Looking forward to a wonderful Christmas with our family - I'm very grateful for the blessings that we have, and we continue to take one day at a time. :-)

Family photo by the newly decorated Christmas tree! :-)

Scott and the kids along with cousin Samantha caught a 10 lb. salmon off our bridge today - they were SO SO excited!!! :-)

Kahlia is doing amazing - she truely is a role model for us all. Her ability to adapt to whatever comes her way really is inspiring. Though we medicated her quite heavily until today, she never seemed to be in pain, and she began crawling immediately with her "no-no's" on. Crawling with straight arms really is a sight to see! :-) She doesn't seem to really mind them except when she is in bed at night - she isn't able to move around freely, so she wakes up crying a few times at night until I go in and get her comfortably settled back down and she goes right back to sleep. She participated in her first ever decorating of the Christmas tree last night. She didn't actually put any ornaments on the tree, but she enjoyed taking the ornament boxes out of the bins, and seems to enjoy all the decorations and lights. :-)

Today, we finally saw that smile that we all love on Kahlia's face. It was brief in the hospital (when her medication was in full force), but I quickly got a few pictures before her fussiness once again resumed...The drive home was tough. She slept for the first part, but cried much of the second half - not fun for her or me!!

Despite her no no's, she is managing to still crawl around the house - amazing how kids adjust!!

Before we put her to bed, she came in to see her big brother in the dining room doing homework. Look at those eyes - Brendon can do no wrong!! He is PERFECT in her eyes! :-)

She says, "Look at me! I'm still cute, and I'm in a good mood! I'm full of heavy medications so life isn't so bad right now! I'm home, with my family, and I'm out of the hospital - yippee!! :-)

This picture of Kahlia was taken when we first saw her in the recovery room yesterday. She let us know right away that she was not happy with her current situation.

She was hurting and VERY fussy all evening. However, when I put the kids and Scott on speaker phone and they talked to her, she calmed down instantly and listened very intently at their voices. What a blessing to see how much she loves her family - and that they bring her such happiness and contentment. It brings joy to my heart. :-)

You can see her no no's on her arms - that's the official name of them at OHSU. She was definitely not a fan of them, or the string that was attached to her tongue.

It's 11:15pm, and I think Kahlia is FINALLY asleep for the night (well except for the nightly rounds of checking vitals, taking medications, etc). It's been another surgery day that has come and gone - glad we're on the gone end of things rather then the coming. It's been one tough day for me! Scott and I arrived this morning at 8:15 - 15 min. late thanks to Portland rush hour traffic. She was scheduled to go back at 9:50, but the case before her was running behind, so she didn't go back until 11:00. We met with the surgeon at around 2:00. She had an Echocardiogram first requested by the Cardiology team since she was being sedated anyway. He was not able to place the tubes in because both ears were severely infected. She has had a cold that has been progressively getting worse over the past several days, so there was a chance that the anesthesiologist would not feel comfortable putting her to sleep. She had a runny nose and a pretty bad cough. Thankfully, they proceeded and we've gotten it done. He did note that she had underdeveloped muscle in her mouth, but he was still able to correct her cleft palate - thank goodness! From the moment they brought her from the operating room - she has pretty much cried every waking moment. She is in a lot of pain, and is not liking her current situation. She had a stitch attaching the bottom of her mouth to the bottom of her tongue to keep her tongue in place and allow for better air flow. If you could ask her, she would say it was only good for choking on and being a frustration when she tried to eat. She didn't eat a thing until early evening where she had a little jello and a little pudding. A little after 8:00 I put my phone on speaker, and all the kids talked to me and Kahlia - as each kid talked, she perked up, moved her arm as if to wave, and said "i" for "hi" to each of them. It was SO precious ! It was one of the few times she was awake and not crying. She loves her brothers and sister SO SO much - what a blessing to see that!! :) Around 10:00 she was inconsolable so we figured she must be hungry and we fed her a little mashed potatoes and yogurt. In the midst of her eating, her string from her tongue got loose - and we thought she swallowed the whole thing. Thankfully, the string did come loose, but it was hiding over on the side of her mouth, and the ENT resident said they could clip it out for good - thank goodness!

The only time she didn't cry this entire evening was when I was holding her in my arms. She would immediately fall asleep, but when I tried putting her in bed, she would cry once again. I thought I was going to have to sleep with her on top of me which may fair well with her, but mom wouldn't be getting a wink of sleep! I know I'm not first priority, but I do have to drive home, so I figured I need to get at least a little sleep. So, just after 11:00 tonight, I finally asked if she could sleep on her tummy instead of on her back on an elevated bed - that did the trick - YES! The nurse wanted her elevated since her lungs are congested, but for the sake of all involved, she relented and let her sleep on her tummy - just like she wanted. I am a happy mommy and she is sleeping comfortably. :-) She's also having a tough time because she has her "no no's" on her arms - that keeps her from bending at the elbow. The purpose is to keep her hands out of her mouth to pull the stitches out. Sadly - she has 2 fingers that are near and dear to her heart, so she has not been happy about the fact that she can't put them in her mouth. It is late, I am tired, and I really hope she sleeps through out the night. Thanks for your prayers. The doctor said it will take 2 weeks for her mouth to completely heal, but the first 12 hours are the worst for pain. Hoping for a better day tomorrow. If all goes well, she will be discharged tomorrow afternoon - I hope so!!! I'm so grateful that by Christmas, she should be "as good as new"! :-)