Sunday, September 18, 2016

Hosting thoughts and Jesse's nose

First, Jesse's nose.  He has arhinia - which literally means "no nose".  Unlike our Hope, he does not even have nasal passages.  With Hope, they can build an artificial nose and use the nasal passages.  That is not an option for Jesse.  I have heard that they can do a "magnetic" nose - where they place a magnet under the skin and the nose attaches to that and can be taken on and off.  I have also seen a little girl where they are slowly building up and artificial "bump" where her nose would have been so the skin stretches out naturally over it.  Honestly, she looks very cute! :)  But both are simply cosmetic.  It does not provide another airway, allow them to smell, or to breathe.  We will wait for the cranio docs here to do MRIs, CT scans, etc and then offer their suggestions.  Honestly, we will probably leave it up to Jesse to decide.  He is adorable without it and in some ways I don't think his face is as "shocking" to people as Hope's is.  We just don't know how important it will be to him especially with his lack of vision.

Honestly, it doesn't stress us out more that there is only "one" airway because as we have fully realized with Serenity - everything comes down to the passages in the neck anyway.  If that is blocked, he would be in trouble - nose or not.  We would like to avoid a trach unless absolutely necessary - try every other option first.  This is in terms of sleep apnea, which may be a very real problem.  We will try every other thing first, just as we did with Serenity.

No, he cannot smell and yes, this does probably effect how things taste.  You have the four basic tastes - sweet, sour, salty, and bitter - on your tongue.  You can also taste "textures" - dry bread, mushy mashed potatoes, hard peanuts, etc.   Much of "taste" after that does have to do with your sense of smell.  As he does not speak much English yet, we can't really probe what he likes about certain foods yet, but he does have definite favorites.  (Interestingly, the new pediatrician was the first to suggest that our struggle with Hope and her food may have something to do with the lack of smell as we don't really know if she has a full sense of smell or not.  I am very curious!)  There is not a way to give him nasal passages/smells at this point in medical we are talking (as with Hope) about purely cosmetic things when talking about a nose.  The trach would be the "second" airway if needed.  I will keep you updated as all the appointments start...


I haven't posted a whole lot on hosting, mainly because I am so split in my emotions over it.  There are some very good points.  There are some very hard points.  In the end, a bunch of orphans end up as sons and daughters who never would have otherwise....but I have never been a "the end justifies the means" person.  Both are equally I am just going to leave the pros and cons aside for now.

This is more for the new hosting parents - wanting to know what we did and how it worked...

The first thing I need to point out is that both the girls we hosted had Down Syndrome.  This will make our experience a little different than those hosting kids without cognitive challenges.  Both Nora and Lucy are very high functioning kids with DS, but I do wonder how it did effect their expectations/understanding of the situation.  Nora was 9 when we hosted her, Lucy had just turned 11.

When we were preparing for Lucy, we wanted her to have all kinds of experiences.  We planned for the zoo, parks, the Space Needle, a Mariners game, and even the church camping trip.  We had her for 5 weeks - so we felt we had a lot of time to explore and play.

Her plane came in very late at night so she basically came home and went to bed.  I don't know how we could have done that differently, but it had to be hard on her to lay down in a place she didn't know in a house she didn't know.  She did sleep through the night (or was at least quiet).  Nora arrived in the middle of the day, which was much better for everyone.  We all welcomed her and then took her back to her bed (in the girls' room) and helped her unpack a few of her things.  This helped her calm down quite a bit - to see that she had a "space" for her.  With both girls, we left their luggage by the side of their bed for the entire time they were here.  I wanted them to know that "their" stuff (as little as it was) was safe and accessible to them.  I also wanted them to be reminded that they did have to go back.  (Even though my heart split in pieces at the thought.) 

With Lucy (whom we hosted first), I bought some clothes before she came.  But even though they warned us that she would be smaller than we thought and I downsized even farther than I thought she would be, all the clothes were too big.  With Nora, I only bought a pair of pajamas (elastic waist) and a pair of sweatpants and a t-shirt so that she would have something to start with.  (Even with our experience with Lucy, I had to buy the next size down for Nora!)  Lucy only came with a change of clothes, Nora had several.  Lucy's clothes were obviously newly bought for the trip, Nora's were older but clean.  Both girls enjoyed the trip to Walmart to pick out their own clothes very much.  I am sure even a thrift store would be fun.  I just wouldn't load up on a bunch of things until they are actually there.  It was also very fun and telling to see what they would pick for themselves.  Lucy chose everything "Frozen" and "Hello Kitty" - she was more than happy to "ask" for something.  Nora was very quiet and a little overwhelmed.  She would choose between two outfits but didn't ask for everything she saw as Lucy had done.  If I could go back again, I would have bought Nora some better shoes at the beginning of the trip even though she probably wouldn't have been able to keep them.  It was just something that didn't really register until just before she went back that her shoes were too big and very thin.

As far as food, with Lucy we just fed her what we were having.  She did like milk - and drank a lot of it - but didn't like any canned fruit.  Where she was in China, they probably had fresh fruit much of the time.  She liked sugary things very much - breads were not her favorite.  She really enjoyed that she got a drink and some sort of food whenever she asked for it.  Eating just wasn't an issue other than she fed the canned fruit to the dog. :)  We had talked about taking her to a Chinese restaurant, but it just never really happened.  With Nora, we stocked up on Cup of Noodle soups for some odd reason and it was a good thing we did!  We also had rice handy for both girls.  Don did take Nora for sushi and she devoured it!!  It made us sad that we hadn't tried it with Lucy.  We found out VERY quickly that Nora loved sugar but it made her very cranky and irritable very quickly!  Away went the sugar snacks!  Don said he would tell anyone hosting/adopting to avoid sugar at all costs. :)  Now with Jesse, Peter, and Lucy home, we do keep back up Cup of Noodles just in case.  Jesse will eat anything but sandwiches, Lucy now does not like meat, and Peter does not like cheese.  Hmmmm.  I know some host families do an amazing job at having foods the kids would know and like - and I wish I was able to do that - but with a house full of different opinions, it would be very hard.  I would say at a minimum have Cup of Noodles, rice, eggs, and fresh fruit.  Then just try new things and see what the responses are.  And avoid sugar unless you are sure they can handle it!

As far as what to do with the kids?  Again, some host families are AMAZING and do incredible things.  One of the issues for us was that we knew we wanted to adopt the girls and we didn't want to give them a Disney-like experience and set them up for disappointment when they came home forever.  So we really worked to have a balance.  Both girls came in the summer so we took each of them on one of the camping trips that were already planned.    We did more things that we usually would - for their benefit - but still tried to let them experience "normal" life as well.  We had Lucy for 5 weeks and Nora was only 4.  It is amazing how much of a difference that made.  We really felt rushed between needing to get the doctor/dentist/eye appointments done (especially with 4th of July weekend in there) and wanting to spend time with her.  We probably were much more "pre-scheduled" with Lucy (i.e. Wed we will do ______, Thurs we will do ______) and with Nora we winged it more.  But they were also very different personalities.  Lucy is up for anything - always ready to go - especially with Daddy.  Nora was more reserved and needed more "down" time.

Communication?  This is probably the biggest area that the DS played in.  Lucy did not talk clearly or much in Chinese, let alone English.  Nora was pretty clear and communicative in Chinese.  We used a lot - A LOT - of hand gestures and sign language and managed to do very well.  I have heard that the language barrier can be hard for the older kids that were cognitively typical.  There are lots of translation apps you can try.  Our agency had an interpreter available.  With Lucy, the interpreter barely spoke English - almost not at all - plus Lucy wasn't clear in Chinese - so it wasn't helpful at all.  With Nora, the interpreter was amazing and we did end up calling once or twice outside of our scheduled calls to have her talk with Nora.  It was a gift to know what she needed.  (Once was constipation, the other was tiredness.)  I think you just jump in with tools like pictures, Chinese words (if they know how to read), apps, and the interpreter and figure it out.  It is kind of a scary leap - but it works in the end.

You will be told REPEATEDLY to avoid the "A" word - adoption.  PLEASE, please heed this - even if you are convinced that you will adopt them.  It is too long of a process with too many unknowns to do that.  Our agency asked us not to say anything until we had official permission - meaning the LOA/LSC (Letter of Approval/Letter Seeking Confirmation) that comes a few months after you send your dossier in - so think about five to eight months AFTER you start the process depending on how quickly everyone does their part.  The agency did have care package that we could send to the girls.  With Lucy, we thought we had to wait until we had LOA but it turns out we did not.  It broke my heart to realize that we could have been sending things to her for months and she had silence instead. :(  We found a business - - that we really like and have already sent Nora a package in August and then a birthday cake for her birthday in Sept.  We are still NOT saying anything about adoption - but we send her things just so she knows we love her.  It is a little pricey - but worth it to us.

As far as their understanding of what is going on?  This is one of the "negatives" to me of hosting.  It doesn't matter how many times and ways these kids are told they are going back to the orphanage, they still want to STAY.  They DO NOT WANT TO GO BACK.  There is a desperation that builds - honestly, in both of you! - to find a way to not have to go back.  YOU are what they have always wanted....maybe if they are just good enough, or loving enough, or hide their Chinese shoes and clothes - they will not have to go back.  It is heartbreaking - there just isn't another word for it.  There is no way around it.  No way to change it.  As I said, we kept their luggage out and they both panicked when we started packing it again. Lucy tried to hide as many things as possible in her luggage.  Nora kept taking things back out.  Both of them had such a look of heartbroken betrayal when it was time to go back.  I don't know how to fix that.  It doesn't matter what anyone says to them or how they are prepared - they don't want to go back.

We have gotten several pictures of Nora since she left and they are all so very sad.  It is ripping my heart to shreds.  We got nice, happy pictures of Lucy which was so wonderful - but once her Daddy was back for her (see video below) she was NOT taking any chances that someone would take her away again.  She PANICKED when she was asked by the translator if she wanted to go back to her orphanage to say goodbye.  Daddy cancelled that trip immediately.  I can't tell you how wonderful it was to tuck her into HER bed when she came home and put that luggage AWAY forever.

I hope this helps, Melissa - please feel free to ask more questions if you have any!


  1. That was very helpful! Thanks so much.

  2. Thanks for the info on Jesse's nose (or rather lack thereof). I had no idea that there would be no sinuses. I just had a vision of sinuses without the external nose. I guess I thought they could just make and external nose and everything would work. I've taken care of a couple of babies in the NICU who were born without external ears who had no internal ear structures. I've also seen some very significant facial clefs but never arhinia. Interesting how with only a couple dozen cases reported in literature 2 kids with that condition have been adopted through RR. I wish you all the best with the kids upcoming surgeries and recoveries.

  3. O.k. Me again. One last favor? Can you please advocate for a little doll girl on Great walls 'Still needs to be hosted' list. She has Ds. She was actually our first choice, but something about Mr. Artistic nagged at me so we are hosting him. Here is the link: Her handle is 'Miss Photogenic" Thanks again? Know anybody who has an older boy with Ds? I'll email them 'Mr. Charades'...

  4. Oh! All of your kids are adorable. Sorry I was on a mission previously:)

  5. Would you mind doing an update on everyone? I can't believe how grown up Hope is looking, and so pretty as well. How is Serenity doing since she got her hearing aids?