Birthday Boy!

Tomorrow Kellin turns five years old. This tiny little guy who is about as tall as a two- or three-year-old and weighs about the same as a one-year-old has been around half a decade. And while we are excited to celebrate Kellin and I’m so glad he is surrounded by a family who loves him, it’s hard sometimes to think about the fact that he is five. Because developmentally, he is nowhere near five years old.

And then I think about him as a 19-month-old, which is how long he’s been with our family (and really, in many ways, that was the start of his life). Then the picture is much brighter, because I think he could hold his own with most other blind children who are 19 months old, and even surpass them in some areas (I don’t know too many 19-month-olds who use the potty regularly, for example).

Tomorrow we want to celebrate Kellin, and so I thought it would be helpful to make a list of all his recent accomplishments, as a reminder to myself and everyone that Kellin is doing well, moving forward, and just an amazing little guy. I’m not sure I could have overcome two long, lonely, unloved years as well as he has. So here it is - all the things that Kellin has learned to do this summer:

1. Drinks from an open cup, only occasionally spilling.
2. When called to come and eat, leaves his play area, walks to the table, and climbs into his chair.
3. Turns off the music on his toys when moving on to something else.
4. Uses the potty several times a day, stays dry all night.
5. Sleeps in a “big boy” bed.
6. Uses sounds in an attempt to communicate.
7. Figures out new toys after being shown how to use them only a few times.
8. Walks with his cane, even independently if he feels like it (only rarely).
9. Understands that when doing his shape puzzle, if one hand is on the hole in the puzzle, he needs to bring the other hand (holding the piece) to that spot and move it around until it falls into place.
10. Enjoys listening to books and even seeks them out on his own occasionally.
11. Chews food more easily; the muscles in his mouth are stronger.
12. No throwing up in over a month.
13. Puts short and shirt on with minimal prompting.
14. Helps put on shoes and socks.
15. Throws a ball.
16. Shows interest in Braille.
17. Carries toys while walking.
18. “Sorts” his food - feels around for the shape/texture he wants and pushes the rest aside.
19. Stims much less. He still does his two main stims - eye poking and lip rubbing - but the lip rubbing is becoming fairly rare and he almost never covers his hands and mouth with spit when he does it anymore. He does still poke his eyes but again, much less, and he stops when told.
20. Works with me on various learning/therapy tasks without fussing nearly as much (sometimes, no fussing at all!).

Happy 5th Birthday to one amazing little boy!

Yet Another Precious One

A sweet little face popped up on my Facebook newsfeed today. This little girl is nearly three years old, with developmental delays (cause unknown). She is beautiful, isn't she?

I don't often advocate for girls on this blog, for a couple of reasons. One, there are simply less girls waiting for families, so there aren't as many that need advocates. Two, girls are much more likely to find families than boys. It is a fact that the majority of adopting families prefer girls and so a girl with a specific special need will usually be chosen well before a boy of the same age with the same condition.

However, this little girl caught my eye. Isn't she adorable? She's been listed for quite some time. She has a video out there as well that I was able to view. I'm not sure if I can post that publicly so I won't include it here, but please comment if you are interested in seeing it. I can't argue with the fact that the video shows a child with developmental delays. At nearly three years old, she is rolling, sitting up, crawling, grasping baby toys, touching things around her, showing interest in the camera by smiling and approaching, banging blocks together, accepting food from a spoon, and seeking out toys she had dropped. All great skills - but not up to a three-year-old level.

And then I remembered that when he came home, Kellin had NONE of these skills, except perhaps for rolling (if you put him on his stomach or back, he would roll to his preferred position on his side). He did not sit, crawl, hold things in his hands, show interest in things around him, or eat from a spoon. And that was at 3 1/2 years old, several months older than this little girl.

This little girl has no diagnosis. There's no way to know what is causing her delays, whether it's a physical or neurological condition, or if it's more because of the institutional environment she lives in, or a combination of things. But I think it's clear that this little one has great potential. She needs a family to believe in her; she needs good education and therapy; she needs medical care. Who knows what this child could achieve?!

A Special Child

You probably remember seeing this little boy featured on this blog before:

He's called Jesse, and he's been listed for adoption for several years, and I don't think there have even been many inquiries about him. I've been trying for some time to connect with someone that might have updated information about him, as the description on Reece's Rainbow is pretty outdated. And then, just the other day, someone posted this link to a story about Jesse. It's a sad update, but the foster home's love for Jesse shines through every word.

http://butterflyhospice.org/jesses-story/

Jesse still needs a family. The best foster care home in the world is still no substitute for a family. And in China, even the best foster home does not offer Jesse a future. It's even possible that doctors in the US may be able to help where the doctors in China could not. And even if not - doesn't Jesse still deserve his own family? A special family for a very special child.

Jesse has an account on Reece's Rainbow. If anyone feels led to donate to his fund, go to this link here: http://reecesrainbow.org/59002/jesse

What a Week!

 We’ve had a busy week around here! Last Sunday, Rabbit headed off to camp. We are very fortunate to have a camp for kids with Type 1 diabetes fairly close to our home, and this was Rabbit’s third year to attend. I am so grateful for this camp. Because of Rabbit’s diabetes and need for a gluten-free diet, it would not be safe for her to attend just any summer camp, so we are so glad she has the opportunity for this specialized camp. The camp is phenomenal. There are at least two counselors for every cabin of eight kids, and many of the counselors have diabetes themselves. There are medical staff available 24/7. All meals are planned in advance, down to every detail, and each camper receives a booklet which contains a list of everything they will be offered to eat during the week, and the number of carbs in each food. The camper job marks the foods they will eat, and then a nurse checks in with them before every meal to see what their blood sugar is and help them determine the correct insulin dosage. In addition, there are staff members who go from cabin to cabin TWICE during every night to check each camper’s blood sugar and hand out juice and snacks to those who have low blood sugar (very common at camp because of the high activity level during the day). There are systems in place for keeping track of each camper’s medication, blood glucose meter, and insulin pump. The kids do lots of regular fun camp stuff - and they also work on gaining new skills to help them manage their diabetes more independently. Every year, I am blown away by what they manage to accomplish!

Monday marked the start of cross-country practice, so Daddy (head coach this year!) has been busy each morning this week for several hours.

On Wednesday, Pooh and Kellin went to daycare as they have done most Wednesdays this summer (Pooh because he enjoys seeing his friends and Kellin because it helps keep him in the routine for when he goes back full-time in another week). So Wednesday morning, it was just Tigger and I around here. One-on-one time with each child is pretty rare, so I decided to make this a special time for Tigger. I asked him what he wanted to do - and he said he wanted to watch the first Harry Potter movie (he’s been obsessed with those books lately!) and he wanted grape-flavored water and orange slices (candy) to eat during the movie. So that’s what we did! It was fun to be able to spend time just with Tigger. He’s such a happy-go-lucky, energetic, FUN kid!

On Thursday, I picked up Rabbit from camp just as a thunderstorm headed our way, so the end-of-camp program was cancelled in order to get everyone home, or out of the immediate area, as quickly as possible. Rabbit came home sunburned and exhausted but had a great time as usual!

On Friday, Rabbit and Tigger headed to Nana and Papa’s house to spend a couple days, so I took advantage of that to have a “Mommy and Pooh” sleepover night on Friday. I asked Pooh what he wanted to do, and he said he wanted baked beans and ramen noodles for supper, and he wanted to watch Sesame Street and eat M&M’s. Oh, this kid! We had a blast!

Today Rabbit started band lessons. She has chosen to play the trombone, and the school district offers a week of introductory lessons this week before school actually starts in September. So excited for her to have this experience!

We are coming up on our final week of summer vacation. Beginning the following week, Daddy and I are back to work full-time, and the kids all go back to daycare/school. This is a big transition for us every fall, but before long, we will be back into our schedule and things will go smoothly. I hope that Kellin has an easier transition this year than last. Last fall marked his first time of starting daycare and then preschool, and I think it took about two months before he seemed to settle in. Hopefully this year will be better, since it is more familiar.

It’s been a good summer for Kellin. He’s gained quite a few skills, especially in communication and eating (our two biggest areas of concern). He is making sounds regularly to try and communicate and has (kind of) a few words. He seems to say “mama” and “more” and “on” but to be fair, he uses those sounds to mean about a zillion other things too. I really think he thinks he is talking and doesn’t have a clue why we don’t understand, and he can get very frustrated with us.

In terms of his eating, we are still seeing some mixed results with the new approach. He has tried quite a few foods - creamed corn, muffins, cheese, raisins, pretzels - but the number of foods he is choosing to really eat is pretty narrow, mostly cereal (dry), bite-size crackers, veggie straws, Cheetos, yogurt, applesauce, and juice. Sometimes he will sit for an hour and eat Fruit Loops slowly one at a time, sometimes he eats practically nothing but drinks several cups of juice, sometimes he happily eats yogurt and muffin bites. I estimate that he is eating maybe 100-200 calories per meal. I can only hope that is enough to keep him growing. It is incredibly difficult for me to watch him eat so little, and I worry so much about the effect it may have on his health. But I also remind myself that all the vomiting probably had a negative impact on his health too, and that has completely stopped. I am anxious to see how this all works out in the long term.

A few fun pictures:

It's very rare for Kellin to play with his brothers, so this was exciting!

Kellin is really starting to be interested in books!

Dog ears!

Waiting Cuties

I am part of several orphan advocacy groups on Facebook, so I see pictures and descriptions of waiting children every day. This little guy popped up yesterday and something about him really caught my attention - so I wanted to share him here. Isn’t he ADORABLE?! He has one medical condition that has already been surgically repaired, a heart condition that may or may not need future treatment, and facial paralysis. Nothing that can’t be addressed with good medical care and the love of a family. Plus he’s so cute! His file is currently with an agency and I would be happy to point any interested families in the right direction.

And a new picture of Quinntavius! While I’m always glad to see new pictures, I am so saddened by how miserable he looks. Someone really needs to give this little one a big hug! He has an account on Reece’s Rainbow, so if anyone wants to donate to his fund, that would be so appreciated! I’m not exactly sure what it is about Quinntavius that gets to me so much, but I just know he is very special and would be a wonderful son.

http://reecesrainbow.org/93916/quinntavius

Trusting Kellin

Those who have been following the blog for a while are probably very familiar with the feeding issues we have faced with Kellin, but if there are any new readers out there, here's a summary.

When Kellin came home at 3 1/2 years old, he was used to eating only from bottles (formula and biscuit crumbs mixed with hot water). He weighed 19 1/2 pounds, which is about what my other children weighed around 6-12 months of age. He could not suck from a straw, bite, or chew, and he would not touch any food with his hands. He would not tolerate a spoon or any food near his mouth, unless it was in a bottle. Over the last 18 months, we have worked incredibly hard to put weight on this kid who does not think eating is enjoyable AT ALL. Through hours and hours and hours and hours of work, tears, and vomit (yes, he has always thrown up on a regular basis - at least a few times a week), he has learned to feed himself and chew dry, crunchy finger foods, and he accepts a variety of pureed or slightly lumpy foods (oatmeal, soup, yogurt, etc.). But mealtimes have always been a battle. He doesn't want to be at the table, he doesn't want to eat, so he cries and often throws up all the precious calories I worked to so hard to get into him.

While reading about other families' experiences with feeding issues, I came across the mention of a book called Love Me, Feed Me. After seeing it recommended several times, I decided it couldn't hurt to read it. The book is intended mainly for addressing feeding issues in adopted children. Although it is more common for formerly deprived children to overeat and hoard food, children who dislike eating and are underweight are also addressed in this book.

The main idea is that every child knows - or can learn, through positive eating experiences - how much food his body really needs, and what "full" and "hungry" feel like. The parent's job is to present the food (when, where, and what) and the child's job is to decide how much and which foods to eat, without praise or pressure.

Upon reading this book, I found the whole idea terrifying. After all, Kellin doesn't like to eat! If I didn't make him eat his meals, he'd never eat, right?!

Well, maybe.

We decided to give this a try. We had to modify the whole idea slightly, because a main emphasis is on the child seeing different foods and seeing others eat them. Since Kellin is blind, obviously he misses out on this part of the experience. The program also says not to force children to touch foods until they want to - again, because Kellin is blind, in order for him to "see" what is offered, I do take his hand and have him touch each food while I label it. And because he can't see us eating, we do narrate what we are eating at mealtime sometimes.

So now for each meal and snack, we set out Kellin's food (always at least one food we know he will eat and then at least one food that he is unfamiliar with or hasn't preferred in the past). We choose a mix of spoon foods and finger foods, always offering foods we know he is capable of chewing or foods that may challenge him just a bit. We "show" him what's there, and then let him eat. We try to sit next to him and chat with him, trying not to just talk about the food but about other activities of the day and random chitchat.

So, I know you are wondering . . . is it working??

And the answer is YES! Well, in a lot of ways anyway.

Here are the positive changes we have noticed:
1) Kellin has gone from eating twice a day (breakfast and supper) to eating at least a little bit of food five times a day (three meals and two snacks).
2) He has not thrown up AT ALL - NOT ONCE! - in the last three weeks since we started. He doesn't even gag as much as he used to, although I still hear it now and then.
3) He is happier at the table and sits calmly for most meals (but still has the occasional fussy meal).
4) He is eating a greater variety of foods - but still within his preferred categories of dry, crunchy finger foods and pureed or slightly lumpy foods from a spoon.
5) He will sit for 30 minutes or more and feed himself.

And here are the parts of the program that are difficult:
1) Kellin is eating fewer calories. He's eating much less of the high-calorie oatmeal and soups I previously fed him every day.
2) He seems to have lost weight. His shorts are looser around his waist.
3) He prefers to primarily eat dry cereal and crackers.
4) It is very difficult for me not to put food into his mouth, or to pressure him to eat more, or to praise him when he does eat well.

Overall, we feel that this is successful. Kellin is happier and we are all happier that mealtimes are much more peaceful. We are seeing Kellin actually seem to enjoy food for the first time ever. We LOVE that we are not cleaning up vomit all the time anymore. In theory, by continuing to offer him a variety of foods, he should begin to increase the number and kinds of food he will eat, and in the process, hopefully increase the number of calories he is taking in so he can continue to gain the weight he needs. Time will tell if this will truly work for us - but for now, we are enjoying moving in a positive direction!

Our Big Trip!

We've been planning a big road trip for a while. Back in the spring, we learned that there was a reunion planned for July 30th in Nashville, TN for the children (and their families) who had lived in the Bethel foster care program that Kellin lived in as a baby. When I first heard about it, I thought there was no way we could attempt that long trip with the four kids, but as we talked about it, we realized that it could be doable, if we planned carefully. We packed a separate (labeled) bag for each hotel with the number of outfits that each family member would need for the day or two we were there, and then packed another bag with all the things we would need every night (toiletries, pajamas, diapers, swimsuits, etc.) so we only had to lug in two bags each time we arrived instead of separate suitcases for everyone. We also had a cooler and bag of food so we could picnic in the car or hotel for some meals, and each kid had a backpack with toys and snacks for the long car rides. We planned our trip so we most of our trips were under 5 hours, with the exception of our final day.

So last Saturday, July 23rd, we left home and headed for Illinois. We have family there and spent a couple days seeing some relatives that we hadn't seen for a few years. None of them had met Kellin, so it was special to be able to introduce him.

After we left Illinois, we headed to Indianapolis to spend a couple days. We visited the children's museum and the zoo there, and both were impressive. Kellin wasn't really interested in too many of the exhibits and animals, but he was content (most of the time) to be in his stroller or carried by Daddy.

On Thursday morning, we left Indianapolis, and an hour out of the city, we realized we had left Kellin's playpen in the hotel room. We bought this playpen when Rabbit was a baby, and it has accompanied us on nearly every trip for 11 years. It folded up easily and was very sturdy. Although we've certainly gotten our money's worth from it, I was a little sad to realize it was gone (along with the sheet and blanket that were tucked into it). We decided it was not worth 2 hours of extra driving to go back and get it, though. So for the next few nights, we had to be creative about where Kellin would sleep. Luckily, he does well sleeping just about anywhere, so we used couch cushions and a sleeping bag to create a corner for him in the hotel rooms. He slept just fine. We had a variety of hotel rooms on this trip, from standard rooms with just two beds, to larger suites with fold-out couches and even one family suite with a separate bedroom for the kids (free upgrade - awesome!). We probably tried every combination of sleeping arrangements too, since we discovered that Tigger and Pooh could not successfully share a bed (too much kicking, pushing, stealing covers, etc.) so there was a lot of switching around. But everyone managed to have a spot each night.

Anyway, on Thursday we arrived in Nashville and settled in to the hotel. On Friday, we went to the science center and enjoyed the exhibits there, including one about WOLVES (so Tigger was thrilled). After we left there, we went to tour Hermitage, Andrew Jackson's mansion and grounds. It was a hot day, but still fun to see the fancy mansion and then the much simpler buildings where others lived and worked.

On Saturday, we headed for the reunion! There were quite a few families there with children adopted from Bethel, from little ones like Kellin all the way up to teenagers. It was really special to be able to connect with people who had met Kellin when he was a baby, and it was also reassuring to see the older kids and how well they were getting around with their canes. Kellin is in a unique situation, since he was at Bethel as a baby and then spent two years in the orphanage afterward, whereas most (probably all) of the other kids there were in orphanages when younger and then went to Bethel. All of the children there were probably ahead of Kellin developmentally, at least partly because of the good care they received in those months and years before adoption. Still, I'm glad we went and it gives me great hope for Kellin's future.

Saturday evening we left Nashville and headed for St. Louis (to make the drive shorter the following day). Our hotel here was not quite as nice but we only needed to sleep there and headed out fairly early the next morning. Yesterday was a long day of driving (about 9 hours) but the kids did amazing! We stopped for a few potty breaks but no meal breaks (we ate in the car) and arrived home around suppertime. Whew! The reason we had to rush back was because I had to work first thing this morning; otherwise we probably would have stretched out our trip back as well.

What a trip! I was proud of our children. Yes, we had whining and some arguments, and they got overtired and overexcited, but for the most part, they did really well. We are fortunate that Kellin is really a pretty flexible kid; he likes to have us nearby but as long as we are there (okay, mostly if Daddy is there), he generally handles new environments without much fuss.

If you follow the link below, you can see some of the pictures from our trip.

Pictures of our trip!


In other news:

I have held off blogging about this because I was so scared to jinx it, but we are finally seeing some real progress with Kellin's communication! He has figured out how to use sounds to communicate! He isn't saying real words yet but he is making lots of sounds - mama, me me, baba, booboo, nana, wah-wah, a "huh" sound, and lots of vowel sounds - and he is using them as words! He will have "conversations" with us, babbling back-and-forth. He "sings" along with his favorite songs and will chime in when you say "your turn." He uses these sounds to get attention or help. If you take a toy from him, he will say "me me" to get it back. If you tell him to "say ____," he will make a sound back to you. Most of the time, it doesn't sound like the word you prompted, but still, he is trying! He is sometimes making sounds along with his signs (like making an "ah ah" sound when he signs "all done"). He has made that vital connection that making a sound gets him something he wants. This is our first real indication that Kellin is capable of speaking, and we are so excited! We are working hard on making him "talk" for things that he wants, so he practices often. Can't wait to see what he will accomplish next!