-
The good, the bad, the adorable…
THE GOOD:
Tomorrow is the big day. Shuang Shuang will turn 14. Dan hit Toys’R’Us one last time for good measure. I think the girl has enough gifts now. We have been counting down the days. We have been joking all week about what she does and doesn’t want for her birthday. She wants a big, pink, princess cake so I keep acting confused and saying “Blue, trucks and cars cake?” and she laughs. Mema got her a pink, princess cake, so all is well. We’ve bought enough pink decorations to decorate the whole house or at least it seems that way. Hopefully, she will have a nice day. I think she deserves a nice birthday. She has spent her 8th, 9th, 10th, 11th, 12th, and 13th birthday in that orphanage. It’s about time for some celebrating.
SOME GOOD AND SOME BAD:
We took Evie, Lainey and Eli to Iowa City for appointments today. I told people I would update my blog when we knew anything. There’s not a lot to tell, but I’ll let you know what I do know. Lainey had all her bloodwork done for her PKU. We will hopefully get her diet back on track and she will feel even better. We’ve seen big changes in her since we’ve come home so I think we are on the right track.
Evie and Eli had EKG’s and echos. Our cardiologist was in the room during the echo, to try and catch what he could, without them having to be examined for a long time. Eli’s was pretty much what we thought. He will need to be seen by Dr. Hanley at Stanford in the next few months. No heart catherization in his future until we get to Stanford. If we did one here, they would just repeat it when we got to California. So we have a few more months before Eli has to have a procedure done. Eli has pulmonary atresia and that is Dr. Hanley’s speciality. Eli’s sats were 78%. He is much pinker than Ben and Evie. Although they said it might be because he’s anemic.
Dr. D has recommended that we take care of Evie’s issues, the Ben’s, and finally Eli’s within the next couple of months.
Evie’s was much more complicated than we thought. We had high hopes that her single ventricle would allow her to have surgery. It doesn’t look like that is the case. It looks like her pulmonary arteries are almost non-existent and she is getting blood flow to her lungs via collaterals and a small PDA. Of course, we won’t know for 100% sure until after the heart catherization. They want to do her heart cath next Thursday. They made time in their schedule for her, but after thinking it through, we are going to wait a while. She is just so malnourished. She doesn’t have much reserve. They warned us that her cath comes with a much higher incidence of death and I don’t think I could take that this soon into it. I know there will never be a time that I say, “Oh now would be a good time to let her go.” But right now seems too soon. I don’t want to risk it. If they said her only chance was to have her cath next week, well then I’d have her go through with it. But they said she’s been sick for a long time, so a few more days or weeks shouldn’t hurt anything. She’s had sats in the low 60’s, high 50’s for a while now. A little time will be a good thing, time to grow and just be with her family. At least after much prayer and consideration, that is what our hearts are telling us. Man these decisions truly suck! There’s a few other choice words I could use, but I’ll be nice and stick with sucks! She is just such a sweet soul. I know no child deserves to die. No child deserves to suffer. But this little girl is beyond special. She charms the socks off everyone she meets. Her whole face just lights up and she is so animated. It breaks my heart. Yes, I knew the odds going in but it still hurts when you are hit with reality this soon.
We will continue to pray for our little girl and love her like crazy. You never know what will happen and only God knows the number of her days. So for now I’ll just spend my time enjoying her cuteness! It’s a tough job but someone has to do it.
ADORABLE:
