We finally have our computer back - yea! :-) Things are going REALLY well these days. Just 45 min. after I wrote my last post, Dr. Carlson (Kahlia's Cardiologist) called and left a message for us. She said that because her oxygen sats are going lower, we will be doing another Cardiac Cath probably mid September - and she is hoping the Surgeon will place the stent this time to help her sats stay higher longer. That is good news.
Kahlia is now crawling more then she is scooting - that is GREAT news! She is getting stronger and stronger - and with that I am getting many more "mischief alerts"!! It's all good though - I like to see her "getting into things" - that means she is getting around enough to be able to get into mischief! Brendon and Makenna always yelled "mischief alert" with David (and boy did I have PLENTY!) - and now David LOVES to be able to yell those infamous words. :-)
This morning the physical therapists came out to the house to evaluate her. She did better then they had expected - so that's good! They said she is fine cognitively, and with her fine motor skills (though she has some catching up to do). She has VERY weak ankles - which very well could be why she has not begun to bear weight on them. She also has very low muscle tone which is linked neurologically, so all you can do is make the muscles stronger - she will always have low muscle tone. We need to buy very good quality leather, specifically Stride Rite shoes, for her which we hopefully can find in Eugene next week when I go for Kahlia's appt. there. The only concern is whether we can find supportive shoes in such a small size - she basically wears size 0-1. Hard to find something that is not soft and flexible when it is designed for a newborn! If we can't find a pair, or if it doesn't seem to help her, then we go to plan B - make something for in her shoe or actually have an orthotic made. We'll see, and we'll hope plan A works... :-)
Tonight she blessed me beyond words. As I was holding her in the dark getting ready to lay her down for bed - she reached out to feel my face, then leaned in and gave me a kiss!! Her kiss means mouth open wide and right on my lips!! It was the first time she actually initiated a kiss - I was absolutely amazed, but so excited to see her show signs of love, affection, and attachment to me and our family. She is now hugging stuffed animals, and pats me on the back when giving me a hug. Words cannot describe how happy and blessed that made me feel tonight.
Earlier today, Makenna made the comment "I wish I was Kahlia". I told her no you don't, why do you say that with all that she has to deal with? She said, "because she gets all the love and attention". Oh my - I never expected that from my quiet Makenna. It was actually good to hear that from her because she often doesn't let me know how she feels (unlike her big brother!) and I needed to hear that so I know to make extra efforts to let her know how much she is loved. It will be nice for Kahlia to begin walking, get through her heart and cleft palate surgeries so we can finally get back to a sense of normalcy with our family. Sadly, I don't see that happening anytime soon, so we will do our best to love ALL our kids the best that we can while giving Kahlia all the love and help that she needs to get well, and feel completely a part of our family. God is so good, and I know we are going through this journey to make us ALL stronger for it - including the kids - this is growing them more then they realize, and will look back on these days as good. There is enough love to go around. :-)

We haven't had a computer since Monday, so I have not been able to update this!!! I am now at Scott's office posting a quick update while the kids are swimming.
Wednesday was Kahlia's appt. with a Geneticist. It went well, just informative on what we are looking at long term. She has a 50% chance of passing along this chromosomal defect to her children - it is a partial deletion of the 22nd chromosome. One is fine, the other has the defect. It is a flip of a coin on which chromosome "comes forward". She will have to decide based on her life and how she has "coped" whether she wants to take the chance of passing it on. It is this chromosome deletion that caused both her heart defect and cleft palate, but some with DiGeorge Syndrome do not have these defects - each child with the deletion has a unique "grouping" of what they refer to as "syndromes". Hard to explain, but that's it in a nut shell. Because Kahlia's oxygen sats were low last week at Dr. McKelvey's office (68-72%), the Cardiology dept. decided that since I was coming in anyway for the Genetics appt., that they would go ahead and take her vitals and page her doctor with results. At Doernbecher, she was 70-71%. They have increased her heart medicine AGAIN to help with the oxygen sats - it seems we are running out of options....
On Wednesday, she had her ESD evaluation. Because she does not sleep in the car AT ALL, she had a rough couple of days of traveling, and definitely not getting all her sleep. For the first time in MONTHS, she fell asleep on my lap in the middle of the appt. Not good when they are trying to evaluate her!! So, she slept for about 30-40 minutes while the speech therapist asked me all the questions she could, then we had to wake her up to do her testing portion. Her evaluation was with toys and what she could do with them. The physical therapists came in for about 10 minutes to meet her, and set up an appt. for Monday morning at our home for them to do their full evaluation in her own environment. After that, they will call and set an appt. to meet about the results. We will find out what her developmental age is, and exactly how much therapy we are looking at. This is such a long road....but we're heading in the right direction. Just in the last week or so, Kahlia has started to actually crawl on her hands and knees - that has been so good to see! She only goes a short distance before she falls on her tummy and "scoots" the rest of the way, but it's a step (crawl) in the right direction! :-)
That's the update for now - hopefully we'll get our computer back soon...thanks for all your prayers.

Today Kahlia had an appointment with Dr. McKelvey, and her oxygen sats are getting lower and lower. Today it was between 68 and 72%. Not so good. :-( She will let Dr. Carlson (her Cardiologist at OHSU) know and we may be doing another Cardiac Cath to balloon open the arteries again and putting in a stent. We'll probably know more in the next week or so. Yesterday, she completely emptied TWO packages of wipes all over the floor. The little stinker was acting like a normal mischievious almost 2 year old!! I was almost happy to see her do it - it means she is doing "normal" things. :-) Exploring, discovering, testing the boundaries. Her favorite "testing of the boundaries" is the removal of her hair bows. It has been my constant battle that I refuse to give up on. She looks so cute with her little bows, and we go around and around. She knows she is doing a "no no" because as soon as she takes it out, she looks at me and points her finger which is what I do to her when I say "no no"!! It's cute, but I can't let her know it's cute!
Next Wednesday is her ESD evaluation. Can't wait to get started on her speech and physical therapy. They will also be giving her a hearing test next friday - it will be interesting to see how much hearing loss she has from all her infections. Also, DiGeorge kids tend to have some hearing loss also - so between the two - the odds are not in her favor - we will see.
A lot is up in the air right now. We are just living one day at a time - enjoying each moment as they come. Today is David's birthday - he is now 6 years old. I love my little guy and the blessing that he is to our family - I can't imagine life with out David - he keeps our home lively and loud - but I wouldn't want it any other way. God is good, and I am so grateful for each one of my family. I am blessed. :-)

Our social worker has come and gone - our first post-adoption visit/report was done tonight. We gave her several pictures of Kahlia and our family to send to India - and she updated her info. on how everything is going. I am SO VERY grateful that we have nothing but positive reports in all areas except medical. Bonding/attachment/transition/family dynamics,etc - all doing so well! Medical, well, let's just say we gave her pen and hand a good work out tonight on that report! :-) Hopefully with each report, we will have less and less to say in this area - but for now - it is quite extensive!
Note to self - do not procrastinate in fixing Makenna's door knob any more (hers literally does not stay on -she stores it somewhere in her room, and just has a hole - you can't close her door, or you cannot get the door open unless you put that door knob in the hole to make it open). So, our social worker is here taking her report...the next thing we know, Kahlia scooted into Makenna's room, closed the door behind her, and we all realized that no one could get her out. Scott had to bring a ladder around outside, bring Makenna through the window, so she could open the door - just a little bit embarrassing!! Of all the times for her to do that....oh well - it just keeps life interesting around here - never a dull moment! :-)
One more day of the swim meet - 2 days down...it's been a long couple of days. Brendon got his new tackle football uniform today - he was SO excited to play/and especially try on his new "duds"!!! He is SO excited to play tackle football this year for the first time! I wanted to take a picture, but didn't have a free second with getting ready for our social worker to come over tonight. Good night all! :-)

Kahlia getting a ride in the little red wagon. :-) Kahlia's first hair cut - her bangs!

David caught and reeled in his first fish -all by himself! His hair is hilarious - he just got back home from swim practice - with no brush - and asked daddy if they could go do a few casts right after dinner...

Kahlia getting a taste of cotton candy for the first time at the fair - she couldn't get it in her mouth fast enough! :-)
Scott and I sporting our "Scott Roberts for State Representative shirts" at the fair. Scott spent over 40 hours at our Coos County fair campaigning - on top of his normal work week - it was a LONG week! He took a 4 hour "break" to be with us when we came to the fair. :-)

Tomorrow our social worker through IFS is coming down for our first post adoption report. It is a requirement for all families who adopt from India to have several post adoption reports for the first few years at least. Hopefully all will go well! :-) We are enjoying our last few weeks of summer - hard to believe the kids start school again in less then a month!!! Brendon starts football tomorrow morning, and both Brendon and Makenna have a home swim meet this weekend - busy times in the Roberts household - as usual!

Kahlia had her follow up appt. with her Cardiologist on Friday - just over 2 weeks since her Cardiac Cath. She seems to be doing really well - though her oxygen sats are back down in the high 70's - they were 78 on Friday. She said "Uh-Oh" for the first time at the doctor's office when she pushed a book off the table. She's learning!! :-) The plan is - Dr. Carlson would like to put off her surgery closer to the 6 month time because they really want to see her get stronger. It's not the actual surgery she's worried about, it's the recovery afterward - particularly the first 48 hours when her body has to be working so very hard to accomodate a blood flow level she has never seen. A lot of things can go wrong, and they want her to be in the best health she can possibly be in with out waiting too long to make matters even worse. She's a trooper, and doing great. We need to schedule an appt. with Dr. McKelvey (her Pediatrician) every other week to see what her oxygen sats are, and if they start dropping, then they may do another Cardiac Cath in the interim to give her another "boost" before the big surgery. We're just taking one step at a time. She gets evaluated with ESD the end of this month -so we will then start with Physical, Occupational, and speech therapies - most likely.
After her appointment, we spent the rest of the weekend up there as well. Scott and took the three older kids to the zoo for a fun family day. My mom had some alone Kahlia time so we wouldn't have to rush back for her nap. They had a nice time - and so did we! :-) On Sunday, Scott, Kahlia, and I headed for home via visiting an old friend that was in town (Jennifer Swanborough!) and left Brendon, Makenna, and David at my parents so my sister could come pick them up and take them to her house for the week to spend with their cousins Wade and Aspen. They were SO excited to go - hope they have lots of fun at Twin Rocks Friends Camp this week! I'm hoping to get lots of scrapbooking done -we'll see how much Kahlia lets me get done. Thursday night I drive up to the camp to bring the kids home friday morning for a swim meet starting Friday afternoon - should be a fun week for all!

I'm home - safe and sound. :-) SO GLAD to be home and sleep in my own bed. Good news, her O2 stats are up a little - low to mid 80's most of the time. I wasn't able to leave until 3:30. I thought for sure since she arrived with out even a fever that I would be able to leave fairly early today. But things don't go quite like you would think when she is watched closely by 3 different specialists at Doernbecher: ENT, Cardiology, and Endochronology. She has to be "cleared" by all of them and the communication between departments to residents to nurses to me often times is like the old game "telephone". How it starts out isn't exactly what it ends up by time it trickles down to me. First I was told I would be a possible discharge on Monday - I was completely floored being that she arrived perfectly fine. Then I was told that I was indeed going home. The issue was the fact that since the Cath was only 1 1/2 weeks ago, they wanted to make sure that the cause of the fever was not an infection that had gotten in the blood stream during the procedure. They took a blood sample at our hospital here, but we won't know the results until tomorrow. I'm just grateful her fever didn't last long, and I'm sure it was just a little bug that had been going through my family. Everyone but me had been sick through out the week at least for a few hours, so I really wasn't surprised. It's amazing the steps they took just for a fever - I pray she stays healthy and we don't have to go through that again!
Thanks to all of you who "stay in touch" through our blog, and pray for us. Sometimes it's easy to fall into the thought "do my prayers really matter". THEY DO! If I have learned anything through this experience, it is that there really are a lot of people who care about us, who pray for us, and those prayers, I believe, are carrying Kahlia through these months of preparation for her eventual open heart surgery. With all the precautions they take for such seemingly "minor" setbacks, it really scares me at how fragile her little body really is. Fear sneaks in sometimes - wondering how she will do when the time comes for her surgery. Will she be strong enough to withstand the surgery? I/we love her more and more with each day God has given her to us. She is such a huge blessing to us - but there is an underlying fear even in the kids. When I told them yesterday I was taking Kahlia to the Emergency Room, Brendon said, "she's gonna die, isn't she?" Deep down they're all scared, and truthfully, I can't honestly say an adament "no". All we can do is trust the Lord to carry us through this time. He's in charge of her future, and I truly believe He has great plans for her. This is where true trust and faith have to be shown through action. These are very real emotions and tough times for our kids to watch us go through this with Kahlia. But I truly believe that God will be glorified through this process, and they will be stronger spiritually because of this - even at their young ages. They are watching us and how we react, and I want to learn and grow from this whole experience as well.
On the flip side, we have to make sure that ALL our kids' needs are being met - not just Kahlia's. They all need to feel loved and cared for - that's where the balancing act of life comes in. They have to learn to be flexible and unselfish (which are tough lessons to learn sometimes when you're a kid who wants everything your way!), and Scott and I have to learn to be sensitive to their needs so they don't feel left out or not loved as much as Kahlia. I think we're doing an ok job, we just need to keep those communication lines open!! They still ALL adore Kahlia, fight over her, and touch and hold her probably too much. It's good to see their love for her - it makes it easier for them to make sacrifices for her since their love for her is also getting stronger and stronger. God is good. And with that - Good night! :-)