Q: How much longer do you think you will have to stay?
A: Until just after lunchtime TODAY. Thank the Lord!!!!!! We are readier than ready to GO HOME!!!!!!
Q: Will Katie need a G-tube?
A: No, at this point there isn’t a compelling reason to give her a G-tube. She will go home with an NG tube and plans to receive continuous overnight feeds via feeding pump, with three bolus feeds during the day. This will allow her to get the calories she needs to grow, while still allowing her to feel a normal hunger cycle during the day. We can work with that hunger cycle as we teach her to eat.
Q: Is she taking anything by mouth?
A: No. She has only unpleasant associations with being bottle-fed, as the method used to feed her was traumatic rather than comforting. You may remember reading that she was fed using a heavy glass beer bottle with a long teat stretched over the top with a huge hole cut in the end. She was fed flat on her back, and the bottle contents were poured down her throat in a matter of a few minutes, forcing her to gulp rapidly to keep up with it. She did not close her lips around the nipple or lift her hands to the bottle, and she often did not finish her bottles. Her belly was constantly grossly distended due to both the food and the feeding method.
This method of feeding is actually a current endangerment to the lives of any of the other children in her former orphanage who are still being fed in this way, due to the risk of choking, vomiting, aspirating, and asphyxiation. This is only one of the reasons we are praying that God will preserve the lives of the little ones whose families are still months away from getting them. We would love to see the children who are most at risk admitted to the Japanese-run hospital where we took Katie, so they can begin the process of rehabilitation under medical supervision while they await their families. This would take a miracle, but what else has God been doing?? He can do this, too!
Katie willingly allows me to brush her teeth and swab out her mouth, wash around her mouth, and apply chapstick, so she is not generally orally defensive. But she gives such a strong negative reaction to anything resembling a bottle nipple that we have decided to drop that completely, and work toward using a spoon and cup. We expect it to be at least a year before she is able to take all she needs by mouth.
Q: How are you holding up? How is your milk supply?
A: I have felt so well taken care of! Several friends in this region continued to check on me, bring me various necessary items, and bless me with the warmth of their company! And several faraway friends sent thoughtful care packages, including things like striped socks and reading material.
My milk supply had dropped during travel, but it bounced back after I settled in here, so I’ll be taking home a cooler full of frozen milk.
Q: How are all the children holding up without mom around? Especially Verity?
A: By all accounts, they are doing quite well. But I think I will be spending a good deal of the foreseeable future directing operations from the couch, surrounded by small warm bodies. *satisfied sigh*
Q: What did you decide to do about allowing publicity?
A: Today before we leave, there is a possibility that we may be interviewed by a local newspaper, and we’ll see how that goes before making any further decisions.
NAQ: This may sound strange, but what a blessing it is that she has Down syndrome!
A: Katie’s Down syndrome has clearly benefited her in at least one area. If it wasn’t for her hypotonia, or low muscle tone, the fact that she spent so long lying in a bed would most likely have caused hypertonia, also known as spasticity, or muscle tightness.
Q: Regarding her bone strength- is this something that can improve with proper nutrition or will this be a permanent challenge for her?
A: Katie will be getting a DEXA scan at some time in the near future, and we hope that results in more specific answers. For now, we have been told that the process of bone remineralization will be a lengthy process, most likely taking more than a year.
Most of the damaging effects of her severe malnutrition will take a long time to heal; for instance, the gum damage caused by her scurvy will most likely take about nine months to heal. She was a long time getting to where she is, and the recovery process will not be a quick one. But we are happy to give her all the time she needs.
Q: Does she laugh?
A: Yes indeed, she smiles and laughs! She is amazingly interactive, considering her social deprivation. We think some of this must be credited to her loving baba, some is doubtless an answer to so many specific prayers, and we attribute some to her “Down syndrome advantage.”
Q: Will she ever learn to walk?
A: Nobody knows that but God, and He isn’t telling! The rest of us get to wait and see!
Q: Is she understanding any English?
A: We think she is making appropriate associations with the words Katie, Daddy, ouch, and all done. I have a video to show you by and by that will demonstrate her response to the word Daddy.
Q: Do the doctors know if Katie will be able to eventually be at a “normal” weight and height? Clearly, she is unable to walk or talk; is this because of her Down syndrome or because of the lack of help and development opportunities that she received in her orphange?
A: Nobody knows what Katie’s long-term prognosis is, but it is not likely that she will ever completely “catch up.” We will work hard with her, not pushing her, but gently stretching her to go past where she is most comfortable. She has taken many years to get to this point, and we don’t feel impatient to see her progress in her skills. And we are trusting in the Lord to take her as far as He intends for her to go, just as we do with all our other children. We are just so full of gratitude that she can now begin to relax, learn what love and family mean, and bond with us.
And no, Down syndrome did NOT cause Katie’s condition; profound neglect of her needs on every level since her birth caused Katie’s condition. I have stated this before on this blog, but it always bears repeating. What has been done to her and the other little children in her former orphanage who are severely damaged by neglect was totally preventable. We know a little girl with Down syndrome of Katie’s age who plays the piano, reads, climbs trees, has an excellent vocabulary…
Q: How has your overall experience been at CHOP?
A: We appreciated the cautious and conservative approach they took with Katie. They were excellent at prioritizing the testing, and put off everything that could wait for later, and focused on getting her safely through the refeeding danger. There were a few nurses, a resident, and a nutritionist whom Katie and I loved. We also appreciated being able to stay in the private PICU room at the price of a room on the regular floor of the hospital from Monday until today.
Bonus Q: When did you have time to think about the sign for on her bed?
A: When I was collecting Thanksgiving decorations for the house, I realized that it might be fun to have a few of them in the PICU with Katie, so I packed them away.
Q4U: Guess which smart, funny, sweet, happy, curious, affectionate, opinionated little person invited herself to Date Night on Tuesday?