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"! :-)

Family Harvest party put on by our local churches! :-)

Kahlia seems to always be happy. :-)

Our four beautiful children getting ready for their Veteran's Day program at school - all three of them did a great job!

Kahlia is getting closer and closer to walking every day. She's getting stronger, and working hard toward taking her first step "all by herself"! Right now though, she is practicing with her little toy "dinosaur" that helps her walk all the way across the living room! :-)

Yesterday was our pre-op appointment at OHSU. Our family drove up to my parents house after AWANAS on Wednesday night. We got there around midnight - ugh... The next day we met with her surgeon - Dr. Milczuk - where he explained everything that he would be doing during the surgery. He told us she may even just spend one night in the hospital - 2 at the most. She will be in a lot of pain for the first 12 hours, but the healing begins immediately, so it should be a fairly uneventful recovery. Easy for me to say since I'm not the one with a bunch of stitches in the top of my mouth! :-( There may be some setbacks and possible complications due to her DiGeorge Syndrome that has caused her to have low muscle tone. We never even thought about the possibility that even the muscles on the inside of her mouth could be "weak" and therefore cause other "problems". We won't know if this will be a problem until after the surgery - there is even a chance of her having to have another surgery in her mouth if the muscles do not "take" like they should. Now we just need to keep her really healthy for the next 2 weeks - we do NOT give her permission to get sick!!

After her appts. at OHSU, we met with our social worker through International Family Services for our second post adoption report. She has done our first 2 (one at 3 months, and now at 6 months) post adoption. From now on, we will do these post adoption reports ourselves, including pictures, and detailed progress on how she is doing. It is very important for us to do these reports for the first 3-4 years after adoption for the Indian gov't to continue to allow further adoptions from the United States. We were finally out the door leaving for home a little after 6pm. Another late night!! Because of us travelling both ways in the dark - thankfully - Kahlia slept most of the drive. She is usually a little stinker on long car rides, and she still had her moments, but for the most part she did great. Looking forward to having all this "stuff" behind us!!!!

Now that Kahlia's heart has been repaired - and she is doing better then ever - we are on to the next "item on the agenda" as it pertains to her health. As I have mentioned before, Kahlia's health has been kind of like peeling an onion - as we uncover one layer, we keep finding more and more "layers" to have to deal with - one level at a time. In addition to preparing for her Cleft palate surgery coming up on Dec. 1, yesterday we had an appointment with Kahlia's new Endocrinologist - she is from OHSU, but comes down to North Bend 3 times a year - fall, spring, and summer. Her name is Dr. Hanna. In addition to her heart defect, cleft palate, chronic ear infections, and DiGeorge syndrome, we are also dealing with Endocrine issues - issues that have to do with her Pituitary Gland. This gland deals with 4 areas - but we're not sure she has problems in all of the areas - only time will tell now that she is completely healthy with her heart repair. We know for sure that her adrenal stimulating hormone is only at about 50%. That is otherwise known as her "stress hormone". Without a functioning stress hormone, she would not be able to withstand major "stress" to her body i.e. sickness, surgery, etc. It could even result in death because it would be too much of an overload for her body to take. So, luckily they tested her for this BEFORE her heart surgery, and she has been on hydrocordisol (the "steroid" that our bodies normally produce naturally) to bring her up to the level that we are. She will have to take this for the rest of her life. :-( The other functions of the pituitary gland is the thyroid stimulating hormone (growth metabolism) and her growth hormone - in which we are unsure if her lack of growth is caused from malnourishment and low oxygen/blood flow, or if it is truly a growth hormone difficiency. We will measure her in March - and at that time we will be able to determine whether she will have to take growth hormones or not. I sure hope not - we would have to give her daily shots for all of her growing up years - yuck! The final function of the P.G. is puberty - which we do not know at this time if she will be effected. She could be fine, or she could lag behind in pubery, or puberty could come prematurely - luckily if either of these happen, they have medication to start or stop her bodies natural course. So - here we are - learning more then we ever wanted to know about how our bodies work or do not work. All I can say is she is lucky to be alive. She survived through so much with such little medical care - I really believe with all of my heart that she is a little miracle.
Today she started walking along furniture - first on the benches at our kids' swim team practice, then at home on our couch. She is getting stronger and stronger by the day, and has just as much or more energy and appetite then our other kids at her age. She is doing remarkably well - I am so very proud of her - she is my hero - at the age of 2! :-)
A week from tomorrow is our appt. at OHSU - for Kahlia's pre -op appt. for her cleft palate.
If we're not dealing with one thing, we're dealing with another. Brendon had a doctor's appt. today, and he will be having minor surgery coming up next month as well. This has been quite the medical year. 3 of our 4 kids will have had surgery. Luckily - Makenna, Scott, and I have had no medical issues what-so-ever - hope it stays that way! :-)
As always, we cherish all of your prayers. Scott did not win his bid for House of Representatives for District 9. He put up a big fight - and only lost by 4% - with only spending 20% of what his opponent Arnie Roblan spent. I say he did an amazing job - I am so very proud of his efforts and his willingness to stand up for what he believes in. When it is all said and done, he can walk away from this campaign with his integrity still intact. He was a GREAT example to our children on how to run an honest and "clean" campaign - and if anything good came out of this experience - I know one thing is for sure. Our kids now know more about politics then probably any other children in our area. They were completely submerged with what was going on. Arnie Roblan, Art Robinson, and Chris Dudley were household names. I am proud of Scott and our family for standing up for what we believe in. We'll see where this leads Scott in the future. Our motto for this year has been in all areas of our life: GOD IS IN CONTROL! 2010 has been quite the year - and it's still not done. Whew!!! I'm holding on to the reigns for dear life, wondering what is around the next corner - it seems to be a bumpy and adventurous ride - I'm looking longingly into the future - hoping and praying for calmer times. Through it all though, I know that God only gives us what we can handle - and apparently he has entrusted us with a cup quite full this year - Lord? Could we have a smaller cup next year? :-)

No news is good news! :-) I haven't posted in a while, because things have been going exceptionally well! :-) Kahlia is essentially completely healed!! She continues to have never ending energy - which has been such a blessing to see! On Wednesday, we had a follow up appt. with Kahlia's Cardiologist, and she is doing great. Her oxygen saturation was at 96%. She is 19.1 lbs - exactly 3 lbs more then she was the day we flew home on May 14. She has grown 3/4 of an inch - not tons - but some! :-) On the examination table - she was literally crawling back and forth at full speed - her doctor said - "Wow, she really does have a lot of energy! You have your hands full!" Music to my ears...
Yesterday, her speech therapist came out to give me some info. on working with her until her Cleft palate surgery is done. She can't officially begin speech therapy until the repair is complete. She told me that the only consonant sounds she can say is M and N. All other sounds are literally impossible to say with out her repair because she cannot close off her airway in order for the sounds to come out correctly. Having her palate surgery scheduled for Dec. 1 is hard to think about, but looking forward to having it behind us. I just feel so bad she has to go back to the hospital - so grateful she will never remember these times.
Today, her physical therapist who will be helping her learn to walk came out to see if the orthotics they fit her for last week fit her. They do - they are hard plastic that come up almost to her ankles on the sides to provide maximum stability as she learns to walk. Yesterday, while the speech therapist was here, she pulled herself up to a standing position with her legs for the first time. This summer, she pulled herself up in her play pen - but it was all her arm muscles doing the work. Yesterday, her legs pulled her up - I have a feeling walking is just around the corner - I hope so!! :-)
Kahlia continues to be a blessing in all of our lives. We all love her to pieces, the kids still fight over who gets individual time with her, and she is just as cute as a bug. We thank the Lord every day for bringing her into our lives. We only hope that we can be a blessing to her as much as she has been a blessing to us. We love her so so much!

After the pumpkin patch, we went to a Chris Dudley rally at NB Lanes. The kids and cousins got a picture of who "could" be the next Oregon Governor!! :-)

At the pumpkin patch having a good time. :-) Makenna, David, Kahlia, Brendon, Samantha, and Alexandria.

Family photo on the hay ride...Kahlia was 2 hours past her nap - so no smile for her!!

Brendon has the ball - he so LOVES football! :-)

Kahlia at Brendon's football game. I LOVE this picture! :-)

We had a GREAT weekend! Brendon had his last football game - and he scored 2 out of the 4 touchdowns for his team - what a way to end the year! Plus - they won the game - can't get much better then that. After that - we were off to the pumpkin patch with Scott's sister Trisha and her two girls - Samantha and Alexandria - everyone had a good time!

Tomorrow morning - the physical therapists are coming over to fit Kahlia for a custom orthotic - she just needs more support in those little ankles of hers. With low muscle tone - she needs a little help to speed her walking along. Though I know it will be so much more work - I cannot wait for her to start walking just so I have the relief that she really can. Thursday morning the developmental/speech therapist will be coming out to the house for her twice a month "therapy". It's nice to finally get the ball moving!

I OFFICIALLY HAVE A 2 YEAR OLD!! It really is a good thing - but A LOT more work!! With Kahlia's new found heart that actually works correctly and gives her 22% more oxygen then she was getting before, we have an entirely new child. For one, and quite sad, she doesn't cuddle near as much. I knew this would happen, but it's very sad. I used to get her out of bed in the morning, go into the living room, sit down and "cuddle" for a while. That is no more. She is up looking at everything she can't wait to rip, destroy, play with, pull out, touch, you name it! Life is way too exciting for her to just lay in her mommy's lap and cuddle - how boring mom! What was I thinking??!? The most noticable difference is her ability to actually cry for more then just a moment. She really cries for as long as needed if she doesn't get what she wants. Though crying is never fun to hear, it is actually a sign of a healthy child - remember that all you moms - it really is a good thing to hear your child cry! Before, she would cry briefly, then realize it so wasn't worth the effort. Now, everything is worth the effort - and that's good - I guess! Also, when ever she would get tired after crawling, she would lie her little head down where ever it was convenient - whether it be cement, wood, carpet - she was down the moment she felt too tired. I haven't seen her do that once yet. Over all, she is doing amazing. We are standing her up often to help strengthen her little legs. She stands for several minutes before she sits herself down. She doesn't pull herself up yet (she's done it a couple of times pre surgery), but I'm sure that will be coming soon. The kids are working really hard at being careful with her. They can't pick her up yet in the traditional way (from the armpits), so it's up to mostly mom and dad to pick her up. We have to "scoop" her for a few weeks just to make sure her rib cage is completely healed. She doesn't seem to be in any pain whatsoever - but she does notice her scar, and touches it often. I've been waiting to hear from ESD all week to get her started with her early childhood intervention for both developmental and physical therapies. Speech will likely start in January after her cleft palate is repaired. Fun and exciting times...we are gearing up for Brendon's final football game tomorrow, then we can focus on just swimming with all 3 kids for a while! :-) Can't wait to get Kahlia in the water for lessons. She LOVES the water for her bath - we'll see how it goes! I probably won't start that either until she is completely healed from her cleft palate - water through the nose and mouth would NOT be a good thing!

Brendon went right to Kahlia after the game and gave her a big kiss and hug - he didn't get to really talk with her before the game since I got there after his warm up began - I love to see how much her loves her!! :-)

My two favorite girls - love them! :-)

The family united - a fun surprise - glad to be home! :-)

What a whirlwind the past few days have been. I feel blessed to just be home, and back to our normal routine. We left the hospital early afternoon on Friday. My one agenda was to find a good solid pair of shoes for Kahlia to help with her stability for standing and eventually walking. She's got a ways to go, but it is fun watching her get stronger by the day. She is doing GREAT! I found a pair of shoes at Stride Rite (expensive, but hopefully worth it!), then spent the evening at my parents house in Sherwood. They were celebrating their 60th birthdays with a weekend away that us four girls put together for them, so I had the house to myself. I was worried how Kahlia would do sleeping. After the past several nights of crying OFTEN through out the night for no apparent reason (except the constant beeps and unannounced visits from nurses and "blood suckers"), I was worried that she would be dependent on me even after leaving the hospital. Though I stayed at the Ronald McDonald house after her first 2 nights in the PICU, once she moved upstairs where it was quieter and darker, I stayed in the room with her. Sure enough, first night out of the hospital, she slept wonderfully. She woke up twice with 3 sec. cries, then right back to sleep she would go. Now, at home in her own bed, she doesn't wake up at all - AWESOME!

The reunion with Scott and the kids was great. I wasn't able to get home before they had to leave for Brendon's football game, so I met them there before the game. I saw Scott first, then we found Makenna and David, and then we took Brendon out of warm ups briefly so he could see her. He didn't really spend time with her until after the game - he was too focused on his game to show a lot of emotion ahead of time. The kids were so excited to see us - what a wonderful feeling - to be missed, and so grateful to be home! :-)

She has her follow up appt. with her PCP tomorrow, and a follow up with her Cardiologist at OHSU toward the end of the month. We are now in contact with Cranio Facial team at OHSU which will be doing Kahlia's cleft palate surgery hopefully in December. We will be having a pre-op appt. sometime near Thanksgiving. I will be glad when we have all this medical "stuff" behind us! :-)

This is Dr. Carlson - Kahlia's Cardiologist - the entire Cardiology team at OHSU is amazing - but Dr. Misty Carlson was the first doctor we met just 2 hours after flying in from India back in May. She has been following and caring for Kahlia preparing for this surgery ever since. We like her A LOT! :-)

Kahlia and I right before heading out the door - she is ready to go - as was I...

This picture was taken on my bed in her room right before we left. We were waiting for our discharge papers and for Dr. Carlson to come by and say good bye! She got a cookie from someone out at the nurses station.

Tomorrow I will surprise the kids when I show up at Brendon's football game - can't wait to see the look on their faces - pictures to come! :-)

Yesterday was a fantastic day! As of 5:00 last night, they took Kahlia off of oxygen, and her sats stayed in the 90's for the first time!! Before that, they kept dipping back into the 80's every time we tried to take the oxygen away. So - we get to get released today - oxygen free!!! Truly amazing - after just 10 days - that Kahlia is not only going home - but hasn't even been on any kind of medication for 3 days - she doesn't seem to be bothered in the least with the big incision running down her chest. She didn't apreciate the stitches being removed today where the chest tubes had been, but other then that, she has been excellent!

At the moment, we are waiting for our discharge papers, and for the Cardiologists to come by and "evaluate" her one last time. Then we are OUT OF HERE! I am so grateful for God's amazing healing powers, and his love for us. He literally carried us through this time. We had our scary moments, but even in the midst of them, I felt a peace beyond description. Thank you to all of you who have been faithful prayer warriors through out this ordeal - I will never know all of those warriors - but our God does, and that's all that really matters - He heard a great wave of prayers for our little girl - and He listened to those prayers. Kahlia is a special little girl, and I can't wait to see what God has in store for this little girl. We have one more surgery hopefully to be done in December to correct her cleft palate - then she will be pain and surgery free! We can get on with Speech and Physical therapy (we need to get her walking and talking now!) and get back to a "normal" routine with life. :-)

Can't wait to surprise the kids tomorrow when Kahlia and I just "show up" at home - it's going to be a good day. :-)

Kahlia starting to stand up on her knees - she is ready to get out of that crib!!!Ken and Rachel VandenHoek coming to visit - what a blessing! :-)

Rachelle Staley also came to visit Kahlia! :-)

Kahlia beginning to crawl around for the first time - she did great!

It is so good to write these happy, amazing reports of God's faithfulness - we serve an amazing God who loves, takes care of us, and blesses us beyond what we ever deserve! :-) Kahlia made 3 trips in the wagon and to the play room today - she was active, fun, and full of life. She actually started crawling around, and never once seemed like she was in pain - amazing...it was hilarious seeing her TRY to crawl, but with all of her "accessories" (wires, tubes, and a great big oxygen tank) - she had a hard time going very fast - she sure tried though! :-)

Kahlia ate great today too. There are 2 reasons why she is still in the hospital. They want to observe and document what she has eaten - to make sure she is getting nutrition before being sent home, and they want to make sure her oxygen level stays up when they take her off. She's been on 1/2 liter of oxygen for 2 days now, but they are having a hard time taking her completely off - she is still dipping into the 80's with out that small amount of oxygen flow. We are really hoping that by Friday her sats go up so we don't have to go home with oxygen tanks in tow!! Friday is a TENTATIVE date that we MAY be able to leave. Don't say anything to the kids though, I want to surprise them Saturday!! :-) If we get discharged on Friday, I will be on a mission here in the Portland area to find little Kahlia a pair of sturdy, high top shoes with good support in a size 1 - pretty much an impossible task in our town! Usually, kids wearing size 1 aren't walking, so they are all "pretty", but no support. We'll see if I'm successful....

Today Kahlia had some special visitors beyond our family. First, Rachelle Staley came to visit. She is the person who first called us about Kahlia (Shakti at the time) wanting to know if we would be interested in her. She told us all about her - that she had a cleft palate, and a "slight heart problem". Obviously the heart situation was a little more serious then she was led to believe, but God brought this special little girl into our hearts and home using Rachelle as a vessel to get her to us - we are VERY VERY grateful to her. :-) We also had our dear friends and past pastor and wife Ken and Rachel VandenHoek visit us this evening - a very special treat for sure! :-) We are overwhelmed with love, support, encouragement, and prayers by so many people out there. We love and thank you all!!!!!!!!!!!!

The first picture was Kahlia brushing her hair right after she got a little bath. The second was the elevator ride from the ICU to the 9th floor south where she will finish her recovery before going home. The next is the wagon ride we took today - the first time she had left her room since she was brought there one week ago today. The next is a HUGE smile as she plays with the wipes that she knows she's not supposed to - yep - her spunk is back! :-)

Kahlia had another great day at the hospital. She was able to leave the PICU tonight. She could have gone earlier, but they didn't have a room upstairs until tonight - we didn't go up until almost 9:00pm. I helped give her a little sponge bath this morning to get her cleaned up - she was a complete mess - her hair was completely out of control in the back ( whose wouldn't after laying for almost a week!).

Her central line was pulled out this afternoon - the final IV that was in her neck. She is now eating a normal diet, though her appetite is not completely back to normal yet. She's getting her spunk back which has been SO good to see! She is still on a low amount of oxygen. With out, her sats drop into the 80's. I'm hoping as her lungs continue to clear up, and she's moving around more that her sats go up. They say it may take a while though for them to come completely up since her pulmonary arteries were so small, it may take some time for them to grow as they are now getting a much higher volume of blood going through them. She sat up by herself today for the first time since her surgery. Until today, she has not had the strength to do that on her own. She is making HUGE strides each day, and we are so proud of her. She still must be miserable though. She has several wires still coming out of her chest that go to her heart serving as a "stand by as needed" pace maker. They haven't needed them, but those are the last to come out before she goes home. She still has the O2 coming in through her nose, she still has the O2 sat machine attached to her toe, and they still monitor her blood pressure. That's NOTHING compared to the amount of attachments and tubes that they have gradually taken her off of the last 2 days. It must be so hard to sleep as she has wires and tubes everywhere. I can't wait to take her home to her own bed, her own room, where it's dark, quiet, and no one will poke her!!! She's a trooper though, and we are getting a lot of smiles these days. Hang in there Kahlia - we love you! :-) Scott and I did skype on our computers, and Kahlia totally lit up when she saw her daddy and brothers and sister. She waved and even tried to give them a high five. SO CUTE! :-) I'm checking out of the Ronald McDonald house tomorrow so I can stay with Kahlia in her room. I should be able to get sleep over there now that she's not in the ICU. They don't come in and out so much, and there aren't beeps going off at all hours of the night. I felt bad leaving her tonight, but I needed to give notice, and "move out" of my home away from home.

I am so amazed at the support and prayers by so many of you. We are so grateful to so many people who have walked along side us during this amazing journey. It's been a tough road, but we never felt alone. I believe with all my heart that the amount of prayers covering our little Kahlia through this time has made such a difference in her little life and in her recovery. We were told to prepare to be here at least a month - and 7 days later she has moved out of PICU, and we have "regular" clothes on her!! We have smiles, we have spunk, and we have our little girl back - with a heart that works! :-)

Sadly, we will be here in a few months as she undergoes yet another surgery to correct her cleft palate - the poor thing! Enough is enough already! But, after that - she will be "all better" - and we can focus on getting on with our lives - YES! :-)

Yesterday was a GREAT day! After Kahlia initially gave me the sign for drink, she continued to respond and communicate through out the day. She played and hit balloons, she gave high fives to her family, she drank, ate a couple of bites of apple sauce, and we even saw a half smile. She is doing very well. Her lungs are getting clearer, though she still sounds horrible when she coughs. The chest tubes were removed yesterday, which means that her fluid is minimal, and everything is functioning correctly. We were able to hold her more, and snuggle - what a blessing. Though we have a ways to go, we are beginning to see glimpses of our Kahlia pre surgery. She is beginning to get some of her spunk back, though she is still in some pain. She is off the morphine now, and just receiving Tylenol. I began feeding her this morning - Cream of Wheat, vanilla yogurt, and a few bites of chicken noodle soup. She doesn't appear to be very hungry, it may be because she is tired and not feeling well. Her oxygen flow is almost off, and her sats are continuing to stay high. :-) The only thing right now is her calcium level, but as of an hour ago, those numbers have come up too. I don't have as much time to "post" now because she is awake, aware, and wanting me to hold her more - that is a good thing!! I just snuck away for a bit so I could grab some lunch and post something here!!!

The Cardiologists this morning said that she has exceeded all of their expectations, and that she may be able to go home by the end of the week!!! :-) SHHH I may want to surprise the kids! :-) We should be able to leave the PICU by the end of today, or tomorrow. I am so grateful for all the prayers and support we have had through this difficult time. I feel like we can breathe a sigh of relief, and know that Kahlia is a survivor, a fighter, and a beautiful little girl. Only a few more days (hopefully) and we get to come home. YEA!!! :-)

I didn't get a chance to post last night because Scott and the kids surprised me by showing up at the hospital around 7:30 last night. What a blessing!! :-) It brought tears to my eyes to see my whole family together again - when I wasn't expecting it! I thought I was going to not see them until next weekend.

Yesterday was a fairly uneventful day - in fact so much so that Scott and I began to get worried about Kahlia. She was completely unresponsive, though her eyes were open. She was tracking us, her eyes dialating, and yet she did absolutely nothing. We are hoping that when her blood pressure got really really low a few nights ago, it didn't cause damage to her brain. I didn't sleep well last night just thinking about the possibility of something being wrong with her cogitively - it's not a fun thing to think about. So this morning, I woke up early not able to sleep, and snuck out of the room while everyone else was sleeping, and walked over to Kahlia at 6:45 this morning. I just looked at her, held her as best I could, and really really prayed over her - I wanted to see something that let me know that she's ok inside her little head. Within just a few minutes of my prayers, she looked at me and did the sign for drink. She didn't do that once yesterday, in fact she hadn't done that since her first two completely crazy days. I was so grateful to see her do that - I just started crying and thanking the Lord that yes, I THINK she's going to be ok. We believe those first 2 days of craziness was linked to medication. We now know that Versed is not a good drug for Kahlia - it mad her completely go out of control.

The doctors seemed please with her progress today at rounds. We gave her a few sips of drink and she even grabbed the cup herself. :-) Also, we fed her a few bites of applesauce - and she was able to swallow well. I will be feeling really good about the progress she is making when she starts to show more signs of being alert and aware. She is still being pretty drugged with morphine - which could cause her to be more withdrawn. Also they say that when little ones are in pain, they tend to stay withdrawn to help with the pain. As long as that is true, I'm ok. As far as the actual healing and recovering of her heart and systems, the doctors are very pleased. They said she may be moved out of the PICU sooner then later. WOW!!! She is making good progress. I am so grateful- I want to go home! :-)

Today Kahlia has been the complete opposite of what she has been the last couple of days. She was completely docile, no expression even when her eyes were open. We have hardly heard a word out of her, she just looks through you - not at you. They took her off the Versed which they think may have been the medication that made her go completely crazy. They have increased the drug Dexmedetomidine which is a sedative - that's why she has been completely "out of it". During the first half of the day, she had wet diapers, but since 2:00 this afternoon, she has been completely dry. Not good as they have A LOT of fluid going into her, and now there is no outflow. I'm worried that her kidneys are not working again... Her oxygen sats are also lower then I thought they would be. They have been mostly in the low to high 80's all day. I was hoping they would be higher by now. Kahlia still needs our prayers. We think she's doing better, then she takes a step back. We know she's in good hands, it's just a long process getting her through this!!

I slept at the Ronald McDonald house last night for the first time since we've been here. I was so exhausted - it felt really good to finally get some quiet undisturbed sleep after so many days of being sleep deprived!!! We're praying her kidneys kick into gear, she gives us some wet diapers, and that the fluid will continue to decrease in her lungs. She has had labored breathing all day - you can hear her breathe sometimes as she struggles. The poor thing.

Earlier today a harpist came and played for Kahlia for about 20 minutes. She seemed to like it, though she just stared and listened. It was fun listening to him play.

Kahlia has had another rough 24 hours. Last night, she began retaining A LOT of water - her kidneys were not functioning, and all the fluid from the IV was going to her lungs, stomach, and everywhere else except where it was supposed to go. Her blood pressure was DANGEROUSLY low, and because of that - her body decides that the most important organs to deliver blood to is the heart, brain, and lungs - not the kidneys. It was really scary last night seeing her numbers so low and knowing that her kidneys were not working. Also, I woke up at one point to her crying, and one of the nurses was pounding a mask all over her back, trying to break up the fluid that was building up in her lungs. Not a fun place to be for her or me! This morning, we had a an outflow of prayer chains from many many people, and immediately after those prayers began, she had her first wet diaper. In a matter of 6 hours, she had more urine outflow then the previous 2 days. Praise the Lord! I don't believe that was a coincidence. She has been more stable today with her over all numbers, but she has been waking up constantly crying, and flailing her arms and legs. She has been administered morphine almost every hour - along with an entire list of other pain meds - she is completely drugged at this point trying to manage her pain. They have concluded that somehow she has been exposed to these drugs before because her resistence to them has been so high. What she was given last night would have made ME flat on my back - amazing. She requires WAY more then any of the doctors or nurses would have ever anticipated. One Respiratory Therapist said she had never seen a child react so constant and fiesty as Kahlia. It's good to see her fighting, it makes her stronger, but she's a little over the top for their liking.

Mid day they decided to take off her respirator mask and tube in her mouth that went to her stomach. She was so irritated by it, they took it out probably sooner then they normally would. The Cardiologist was very surprised, but she's holding her own - like I keep saying - she's a fighter !!! :-) We gave her a few sips from a sippy cup, and she grabbed and drank like there was no tomorrow.

This evening has gone better then it was through the day. She is sleeping a little more soundly, though even now she wakes up briefly every 10-15 min. to let out a scream and let us all know she doesn't like her current situation, then she goes right back to sleep. The poor girl - they say this is the hardest age to do the heart surgery - babies are babies and they don't do much. Older children are old enough to be told what is going on and actually understand. She has no idea what is happening to her and why. Over all - she has improved. For that I am very grateful.

Today has been a rough day for our little Kahlia. It started out very uneventful this morning as the doctors and crew came by for their rounds and talked about Kahlia. She seemed to have done very well - as they would have expected - through the night. She seems to be out of the "danger" zone, though as the day progressed, she became more and more agitated every time she woke up. They were not able to keep her comfortable, and she cried and squirmed and signed for drink all day. She was absolutely miserable. They said all kids respond differently, but she is on the more difficult end of the spectrum. She did not respond with the amount of drug dosage they normally give her size little girl, they had to give well above what they thought they would have needed. It has been exhausting for all of us. We feel so bad, so helpless as we hold her hand, try to comfort her, but really there is nothing we can do for her. They did take the breathing tube out of her today, so that is good - she is breathing normally on her own. Her heart went in and out of a normal pattern, but as the day has gone on, she has been fairly consistent on her own. We are praying for comfort, that she can stay asleep as that is the only time she is comfortable, and that her body will continue to heal quickly. I was able to hold her for a little while this afternoon, but with all the wires, tubes, IV's, etc. it was really hard to keep her relaxed enough and not get all tangled up in my arms. I got to hold her for probably 45 minutes or so. A blessing, but even then it was hard to have her look in my eyes and plead for a drink that I couldn't give her. :-( She tries to cry, but hardly anything is able to come out. She is probably in horrible pain. The poor thing. She is a fighter that's for sure - they are all saying that here. I think this may be a long night for her - she was fairly quiet last night. The only thing that kept me up last night was her her monitor that beeped every time her heart pumped. It was beeping around 110 times a minute which translated into 6600 beeps an hour which translated to us hearing approximately 59,000 beeps while trying to sleep - needless to say we didn't sleep much on a small single bed for both of us. Scott is going to stay at the Ronald McDonald house tonight so he can get a good night sleep before driving home tomorrow. I will stay here one more night with her before staying at the Ronald McDonald house starting tomorrow. I am looking forward to getting a quiet night sleep.

The picture of Scott is in the room we are staying at the Ronald McDonald House. The picture of Kahlia in bed is how she looked much of the day - struggle, struggle, struggle. The other 2 are of me holding her for a short time. Hang in there Kahlia!!!