We have had a good couple of days. I'm feeling much better and am so thankful for the many faithful prayer warriers that are lifting up our family. I am truly blessed to be a part of the body of Christ - and honestly have never felt such a part as I have these last 6 months. I've never been on the receiving end of so much love, care, encouragment and support. It has been a blessing beyond words.
I'll try to highlight a little of what has been going on around here.
TESTING: Well, we are 2/3 finished with testing here. Yippee!!! Hopefully we will finish up tomorrow. This is Joshua's (7) first year testing and he is doing really well. He is having fun with it and not letting it stress him at all. Rebecca wondered what would happen if she did poorly and I reassured her that nothing bad would happen. I know that she has learned a LOT this year. She has started her own non-profit and raised a large sum of money for an 11yo! She has learned more about medical issues and procedures than I ever knew as a child - and for most of my life as an adult too. She has learned more about caring for children and having compassion on others than I could have taught with a character lesson. The test may not measure all of these things - but she has learned! We all have!
BLESSINGS: I think I shared that some friends pooled money to hire a cleaning service to come in to do a thorough one-time cleaning. It was fabulous! I've had individuals clean once or twice, but these two gals worked so well as a team and got soooo much done! It was so nice! Well I just received a phone call from the cleaning service that my friends have again paid for a cleaning for our house. I just cried tears of happiness and blessing to hear this. What a sweet gift - though not as sweet as the precious ladies that I call friends! Thank you!
FEEDING: Things are just getting worse. I'm not sure if she has "lost" her suck or is in pain or what. I had hoped for a magic bullet, hoped that things would improve and hoped that one day we would just turn the corner. That hasn't happened and honestly, I don't think that it will now - and neither do any of her therapists or doctors. She is averaging 1-2 ounces per day by bottle now. (Total consumed is 28 ounces.)
We have tried some solid foods - rice cereal and applesauce. She doesn't seem to mind either, though I'm not sure how much is going in. I know that a lot of it goes back out, though it did with my other children too. This isn't the most flattering picture, but I thought it was funny.
Today while at feeding therapy, she did swallow some of the rice cereal and began to cry. This led the therapist to think that she is having pain. :-( Poor little girl. It has just been too much. She is still taking the prevacid which should help if there is pain/irritation and also any reflux that would just hurt.
Sometimes I look back and wonder what I could or should have done differently. Not to blame myself or anyone else. I know that we have all done the best that we could. I just wonder sometimes if things could be different. *sigh* The day after surgery she did a great job eating! I think she was weaned too quickly from her meds and honestly maybe sent home too soon as well. (More time in the hospital would have gotten her feeding therapy daily.) She was in a lot of pain and it took almost a week to get her comfortable again. Enough reflecting as it can't be changed now. We were focused on her heart as that was the top priority. I have been assured that she will eat - it just may take time and a lot of hard work to get there.
Now that she is more physically active, she adds her own challenges to feeding. The tube pulling has been the worst! On a note of praise - the current tube has been in for 9 days!!! I think that is a record! The newest challenge is rolling over. We have her bed on an incline as well as a roll of blankets making a little nest around her to help keep her upright. When she rolls over, she often gets stuck on the roll and then has a hard time lifting her head up as well. I'm not sure why she keeps doing it. Perhaps because she can
If you look in the picture you can see the feeding tube attached to the top of her head with the red port showing.
BIRTHDAY COMING: Our sweet Daniel has a birthday coming up soon! I haven't done any planning. I love planning parties and we typically really go all out for them. Well, this year is going to be different for all of us. Thankfully his wants are simple - chocolate cake with candles and eating at McDonalds. We can do that! We are trying to think of a few fun things to do on that day that would make it even more fun for him. I'll definitely post what we are up to - and pictures too of course.
Something silly about me: Today as I was headed to Eliana's feeding therapy I decided to treat myself to a drink. I stopped at Wendy's and saw a picture of a float. It looked good and I ordered it. I wasn't given an option of flavors and when it arrived, it looked like a coke. I haven't had a coke in 3 years and 1 day. (Yes, I know to the day as it was just a couple of days before Daniel was born.) I had many of them prior to that. During my pregnancies it was one of the few things I could keep down. I decided just before Daniel was born that I could probably make it until birth and decided to give it up for health reasons. I haven't been willing to try it since. I loved coke! I think if I tried it and realized how much I've been missing ... well, I'd be a goner. I'm truly surprised I haven't given in during the last 6 months. There are many times I could have used some caffeine! Anyway, as I looked at it and debated, I saw a friend just ahead of me waiting for food. I handed over the drink and hope that someone in their family was able to enjoy it. ;-) I do miss a good coke! :-)
A silly about Daniel: As we were downloading pictures from the cameras tonight, we noticed some that Daniel had taken. He's almost 3yo. It was obvious he was the culprit as he took some of himself and a number of Isaiah as well as items around the house. As I looked at the photos, I noticed that there were more and more of them. He took 95 pictures!!! I couldn't believe he took so many. He must have had the zoom up as most of them were so close as not to be any good. They are funny though.
One last photo. I have to have at least one cute one in here. I'm proud of myself as I figured out how to post these to photobucket and upload them. I haven't figured out how to post a video though. We have a really cute one of Eliana laughing that I would love to share.
Finishing up our last feeding of the day. It is time to go to bed soon. As usual, I'm exhausted.
Love to you all,
Lies, Lies and the Hard Truth
13 hours ago