Kahlia is a mess - we just keep finding out more things - it's hard to keep track of everything!!! Her Endochronologist from Doernbecher called me this afternoon with some not so great news from the test she took last week at Bay Area Hospital. Back when she had her Cardiac Cath - the Endochronologist had some blood work done. Not surprisingly but disappointingly, she has a growth hormone deficiency. As she stated today, that is nothing that we should be concerned with at this time - we need to get her heart working before dealing with "everything else". But, what that told her is that often times that could be an indication of other problems. Sure enough - her cortisol level was not near what it should be. That is the hormone that reacts to stress in the body. Things could not go well with out that being elevated before her surgery. Sadly, this could and probably will be an ongoing issue - possibly forever. What happens though once she starts taking medication to bring her numbers up, is that her body actually stops creating that hormone herself. So, if she gets a fever, we have to double her dose. If she has diahrrea or vomits - we have to triple the dose. I've gone from absolutely no meds in our home to what seems to be an endless list of medications that I am trying so hard not to forget!!! Her baseline cordisol level was 4.9 when stimulated at the hospital for the test, it went up to 9 - her doctor is not comfortable with levels below 18. She wasn't even close. So - if anyone is interested in a little medical lesson for the day - there you have it!! I am so grateful that at this point, she does have a normal white blood cell count so that she is able to fight off infections - often kids with DiGeorge Syndrome are not able to do that well. Her thrush looks a bit better - but it is still visible. I'm tired, and ready for the comfort of my bed! :-)

We are learning very well to never ever take anything for granted, and that there are no certainties ever at any point....we are still hoping for our July 22nd date, but we are now dealing with Kahlia having "thrush". Not surprising with all the antibiotics she was on. I noticed her white tongue last week, but didn't make the connection that it was thrush until over the weekend while at Brendon's State swimming meet. So, we have her on Nystatin to hopefully clear it up before next Thursday - if it doesn't clear - we will have to reschedule her surgery - again...please no Lord!!! So we are praying really hard that she clears up quickly from this.
As the date gets closer and closer, it becomes harder and harder to think about her going through such a rough surgery - and yet I know that she will feel so much better afterward. I just feel so bad for her for what she's going to have to go through. :-( I wish I could do it for her. But, I know that God is the ultimate Physician, and her life and health is solely in His hands - I am so grateful for that reassurance as I struggle with all that she is up against.
This weekend we had a GREAT time at Brendon's State meet. He did so good - we are really proud of him. His best event was the 100 meter Butterfly - an event he didn't even qualify for at the State meet in February. He took 19 seconds off his time, and placed 8th over all. His time was a 1:41. It was SO hot in Albany where the meet was, and the pool was indoors... :-( Thankfully, we had our motorhome that had a working air conditioner thanks to our generator, and we were the "place to be" for the swimmers and their siblings. Scott's mom and sister also came to support Brendon - a fun time by all!! Kahlia did absolutely wonderful...as usual... :-)

We found out yesterday that Kahlia did not have an ear infection after all. It was just normal skin bacteria that was oozing out of her ear??! Not sure how normal that is, but then again - has anything been normal with Kahlia? I think not! So - that was a blessing and answer to prayer. But, because they already cancelled her her normal surgery date, we are still planning on the new date - Thursday, July 22. Found out yesterday when I called Doernbecher to see about uping the date, that Kahlia's Cardiologist was a in car accident Monday night, and will be out the rest of this week. Luckily it wasn't too serious since she'll be back next week - thank goodness!
Today I took Kahlia into Bay Area Hospital for her ACTH Stimulation test. They draw some blood to get a baseline cortisol level, inject "something", wait approximately 30 minutes, then draw more blood to see what her cortisol level was then. The purpose of the test is to see how her body will respond to stress, and if she has the correct "stress" hormone level to withstand her upcoming surgery. If she does not, then they have to give her a hormone supplement to elevate the hormone level so she can handle the stress of the surgery. I am learning so much through this process, but I still don't really know exactly what all they are doing! She didn't like being poked too much - neither did I - I can barely stand the sight of blood - I had to leave the room...Anyway, she made it through - and so did I - one step closer - yea! :-)
Brendon has his State meet this weekend in Albany. Looking forward to our family camping in the pool parking lot with our motorhome and praying that Brendon swims real fast! :-)

We found out today that Kahlia has another ear infection in her right ear...so discouraging - but you would never know looking at her - she is as happy as ever. There was a brownish discharge coming out of her ear - yuck! Dr. McKelvey took a culture of her ear drainage, but we won't find out until Saturday whether it is an infection treatable with regular antibiotics, or if we are going to have to go back up to OHSU to put in another pic line for another round of IV antibiotics...I hope not!!! Her oxygen saturation was at 55% at her doctor's appt. this morning. They said normally that would be a complete emergency - calling 911. It's amazing how her body has adjusted to living with such little oxygen. I can't wait to see her blossom and grow when they finally get her first surgery done. Praying for quick healing - and God's perfect timing for her surgery.
She met Scott's sister Trisha and her kids tonight for the first time - and loved them all. I just wish I could get inside her thought process - she is learning and meeting so many new things, people, surroundings, it must be such a huge information over load!! I love her SO SO much!! The kids continue to love on her CONSTANTLY. She is not lacking in the love department. I don't think she could be loved more by the kids (or us for that matter!) - they are absolutely amazing with her. What a blessing - God knew best having a 4 year gap between the 2 youngest kids - having them older brings a whole new dynamic to their relationship - not to mention I have 3 GREAT mommy's helpers. I feel blessed beyond words - adoption has been such an amazing experience for us - ups and downs for sure - but so amazing to see how God works in truly mysterious ways that we could never begin to understand. Simply amazing.

We heard from Kahlia's Cardiologist today. The Cardiac team met yesterday and discussed her diagnosis and treatment at length. They decided that it was not in her best interest to do her entire surgery right now in the condition she is in. They are going to put in a shunt between the aorta and the pulmonary artery - to allow more blood flow to her lungs. It is still a major surgery, just not the full repair that she will eventually need. She needs to get stronger, begin to grow, continue with good nutrition, and get her oxygen saturation levels up before they feel she can handle the even greater surgery. She said that if they did the entire repair now, her lungs would have a hard time handling the amount of blood flow that is "normal" to us, but certainly not to her... her recovery would be intense and long, and all the ground we've covered with growth and nutrition would be compromised with the amount of stress put on her system. I'm bummed that we have two surgeries coming up instead of one, but I trust the doctors and what they think is best for Kahlia. It doesn't look like the surgery will be until the week after next. Bummer for her, but good for me so I don't have to miss Brendon's State swim meet! We will find out in the next couple of days the exact date of her surgery. Since her hospital stay last week, she seems to be even more tired, and her breathing is faster. It could be that they increased the dose of her heart medicine, and that makes her more drowsy. Anyway, the bigger surgery will probably be 6 months to a year down the road. Our journey continues as we continue to trust the Lord.
We are gearing up for a fun weekend with a childhood friend of mine and her family that are coming down for a visit from the Portand area. Looking forward to some good family time out at the lake, and making memories with our kids. Happy 4th of July everyone! :-)

So here are a few pictures from Kahlia's hospital stay the last couple of days...one with Scott, me, and Aunt "Christi". She is the cutest littlest thing - I can hardly stand it... :-) A mother's biased heart...just sayin'

We are home again. Nice to be in my own bed tonight. Note to self... next time bring your own pillow and towels because they do not provide them for the parents!!! It was a long night of lots of "beeping". The machines Kahlia was hooked up to are set up to beep when her oxygen saturation level goes below a certain level. Because hers is ALWAYS going below their "red zone" level, it was beeping constantly...all...night...long...I woke up at 6:30 this morning and saw among all the other wires hooked to her an oxygen mask next to her face - not on her just beside her - I guess they were hoping that she would get more oxygen just having it next to her? Seemed odd, but oh well. Dr. Carlson (her Cardiologist) seemed more concerned today then previous appts. In looking at the results of the Cath, she was amazed that she has not had tet spells with us. I guess kids who have those start crying, getting more and more worked up, to the point of turning blue and even passing out. With her pulmonary artery almost nonexistent, she assumed there were other smaller veins that she "grew" to help bring blood to the heart. That ended up not being the case, so she is frankly amazed at how well she is doing...We were sent home with oxygen tanks "just in case" we encounter one of those spells between now and her surgery. (Someone is coming out tomorrow morning to show us how to use the oxygen tanks!) The biggest thing is to keep her calm and not allow her to get to worked up. Thankfully we haven't really had to deal with "fits" with her - she seems very good natured. That could be one of two reasons. One, she is just easy going (I can always hope, right? :-) ), or two, she has had previous tet spells, knows what they feel like, and chooses to not go there again. It's really hard to say. We find out Tuesday when her surgery will be. Though it is not an immediate emergency - they are treating her as a very urgent case, and want to get her in as soon as possible. I just want her to keep her ears infection free, and we will most likely go in the week after 4th of July. My love for Kahlia grows with each passing day. She has an amazing spirit about her - she has gone through so much - I KNOW God has amazing plans for this little girl...Our other kids are doing great with her. They all love her so much, still fight about who gets to hold her or play with her - frustrating, but glad to see that they love her, and all think she's the best little girl in the whole world.
David is a ring bearer in Tori Seviers wedding tomorrow - she's been one of our babysitters since Brendon was itty bitty! He is going to be SO CUTE in his little tux. Busy times, busy times, but God is faithful, I know that full well. Again...tired...so tired...zzzzzzzzzzzzzzzzzzzz ;-)