IEP Meeting and a Link

SEE ADDITIONAL NOTE BELOW PICTURE!
Well, it could have been better and it could have been worse. We will meet again on May 19 to continue this process. I will say, I've never been a part of a county who makes things as stressful and difficult as this one does. BUT, my girl is worth every second...take a look at this sweet face. You'd fight for her too, wouldn't you........

On another note, please visit this blog. http://wwwourchinagirl.blogspot.com/
We met this family while in China. They have an AMAZING story...absolutely amazing!!
I can't wait to see God work in this situation.
Thank you for checking in on our girls. We are having a lazy, rainy Saturday!

Follow-up with the Surgeon

We went back to the hospital today for a 1 week follow-up. Dr. Boyajian said Anna's palate looks good, he sees no holes, and really doesn't expect them at this point! Thank you God! We were so hoping that he would say that! She still has to wear the arm restraints and stay on that hated, liquid diet...but we will do it! I'm not going to mess up his artwork in Anna's mouth. Here is a picture from today of my littlest beauty. Keep praying for her to eat and for her mouth to continue to heal as well as it already has.


I've also got a Lauren prayer request...I mean, aside from the usual ones. : ) We have her annual IEP meeting at school. This is the meeting that stresses me out to no end every year! And this year it is a bigger deal than ever! Lauren turned 5 so she is supposed to go to kindergarten this fall. We don't know if that is the best thing for her right now. We will meet with a team of 9 to discuss Lauren and classroom possibilities at 1pm on Thursday. Please pray for us. Pray that God will give us a clear direction for her. We want whatever is best for Lauren and sometimes that is not clear. But we are praying that He will guide us through this process. The whole thing seriously makes me feel ill. It is this time every year that I ask myself why I'm not homeschooling her! Thanks for praying us through it! I've attached a picture of my #3 beauty too!


And so I don't leave out my big girls, they are good too. Actually, Emily has strep right now. And it came in the form of a rash instead of fever and sore throat...weird! But she tested positive for strep so she is on antibiotic for that. I was so happy (not!) to hear that it was strep...now we wait for the other 3 to get it! And of course we found all this out after sitting for 2 hours in the waiting room for Anna's appointment. So when we left our pediatrician's, I got in the car and said, "Oh Man!(Yep, too much Dora!) Emily has strep and we just sat in a packed waiting room for 2 hours! Who knows how many people we infected!" And do you know what my sweet Sarah said to make me feel better about it?? "Oh mama, don't worry! They won't know it was us that gave it to them!" Who is raising this child????
And with that, I'm going to bed!

3 Days Post-surgery

Anna continues to do well. She is tolerating the arm restraints amazingly well. She wears them all day and night and rarely even notices them. Now, the diet is a different story!! She HATES the liquid diet...... and that syringe?? She hates it even more! Today we have not even picked the syringe up! It just makes her mad to see it. She is drinking everything from an open mouth cup. Today she has had pediasure, a vanilla shake from McDonalds, and pudding mixed with half and half. Getting food in her has been a huge struggle. She is not accepting food from me very well at all. In fact, tonight she ate the pudding that I gave her and that is the first time she has taken food from me since Thursday. As far as how she is feeling....she seems to be healing nicely. She doesn't seem to be in pain. (She only cries when we try to feed her.) Her activity level is normal. We think we may be hearing some new sounds from her...no real words, of course, but we like hearing new sounds. So, prayer requests?? First, that she will do better with her food and allow me to feed her. Second, that her mouth will heal perfectly and no holes will open back up in her palate. (That is why we have a liquid diet and the arm restraints) We see her surgeon on Tuesday AM and are hoping that he will say everything looks great! I will be sure to post after that appointment. Thank you for your prayers.

Home Sweet Home

BEFORE
If you look back in there you will see the gap in her palate.


Waiting for the doctors to come get her.



Recovery Room----This was about 5 minutes after we first saw her.



Anna's crib at Children's National Medical Center



Thursday morning--Emily and Sarah came for a visit and Anna perked up considerably!



AFTER
Swinging with Mimi this afternoon


We made it home about 1pm today. Anna was happy to be here. As soon as she saw her crib she pointed to it which is her way of asking to get in. I put her in there, she rolled around for about 30 seconds, stood up and was ready to get back out. So much for that nap I was already thinking about! : ) She has acted pretty good since coming home. She definitely wants more to eat than she is able to have. I think it may be a long 21 days!! She has figured out how to get out of the arm restraints in about 30 seconds flat! We are now putting them on and then putting one of Emily's long sleeve tee-shirts over it. Works today because it is 65....I don't know what we will do on Sunday when it is 82! Any ideas? I've included pictures taken over the past 2 days....the aunts were requesting them! I haven't tried to take one of the inside of her mouth but I have looked in there. It actually looks really good. I'm not a nurse, don't like "nursey" things, but it wasn't that bad to look at. Hopefully I will be able to get a picture soon. Dr. Boyajian is an amazing surgeon. Thank you all for your prayers. Keep praying for pain management and for her to adjust to the diet and the arm restraints.

WE ARE OUTTA HERE!!

heading home.more later......

A long night....a new day

Good Morning. We all survived the night but no one got enough sleep. Anna prefers to sleep on her tummy and her respirations would slow when she got into a deep sleep. Needless to say, that kept me from sleeping at all! Around 2:30 Shawn got up to take a turn because I couldn't stay awake any longer. Anna did fine through the night. They had her IV running so she really wasn't all that thirsty. We turned it off about 6AM to help encourage her to drink more. She has tolerated both clear liquids and pediasure but they want to see her drinking more. Br. Boyajian has surgery this AM but we should see him midday. We are going to try to get her to drink a lot between now and then so he will let us go home....of course, right now she is sleeping so we have to get her to wake up first. She is definitely feeling better this AM. She has been waving to the nurses and checking out the room. We are happy to see her moving around more. I will post here when we know our discharge plans. Thanks for all your prayers. Please keep praying for pain management. We discontinued morphine and are going with tylenol with codeine now. Pray that Anna will continue to feel better and that she would drink for us.

Progress

Anna was moved to her room at 5pm. She is doing better but is still sleeping most of the time because she is still on morphine. Our plan is to get her off the morphine through the night and transition to tylenol. She has had almost 4oz. of juice through a syringe and tolerated that well. She has "no-no's" on her arms which keep her from putting her hands in her mouth. She also has packing in her mouth that they will take out in the morning. We are still expecting her to be able to go home tomorrow as long as she keeps drinking.
Mimi went home and has the big girls- all three were excited to see her. Please pray for Anna to have a restful night and to continue drinking. Thank you!!