Baseball Game

 We took the kids to a BYU-University Portland baseball game last weekend.

Blake definitely outgrew the toddler BYU hat.

We met up with some friends and they shared their gloves and balls with the kids.

This is what I get when I ask the kids for them to get together for a picture. 

Kyle update: He went in to the dentist who was thrilled with how great his teeth looked. We've also been in to the ENT. We've been concerned for awhile about the wheeziness we hear when Kyle cries, gets sick, or more often in winter. We haven't seen an ENT since Kyle's surgery was deemed successful. We went in and Kyle endured a flexible scope through his nose so the doctor could get a look at his airway. His doctor said she saw what was causing the noises we hear. The surgery tightened things up in there and now part of some cartilage hoods a portion of his airway. She says that as he grows, the hooding should become less significant. If for some reason, it gets worse, there is a surgical option. She wants to avoid surgery now so as not to accidentally affect his cleft repair or worsen his swallowing mechanism. 

His eating is doing well. He is gaining weight. 7 ounces in two weeks!

Blake's first concert (UPDATED: fixed video)

I found this draft hidden back in Blogger. I forgot about this little gem.

Blake's preschool had an extra music class that he could participate in this year. They performed at the high school choir's winter concert.

He started in the back, behind the tallest girl in class, but made his way up by the second song. We got a babysitter for Kyle, and Jeremy and I were both able to attend.

Mini chefs

Whenever I disappear for very long in the afternoon, my kids will bring me up a plate of kebabs. This particular plate was carrot, mandarin, banana, and craisin on a toothpick. We've had talks about combining flavors and what they could reasonably expect if they tried to sell a tomato-banana kebab to the neighbors.


Kyle update: He is better from his fever, but his appetite still leaves something to be desired. Last Friday we fed him some calories through his tube because he was really eating poorly. He started to feel better over the weekend and is picking up his eating. At his weight check today, he held steady! I was thrilled. His nurse even weighed him twice to make sure.

We are definitely running into behavioral issues with his eating. Yesterday I made lunch and after a few bites, he pushed it away asking for "mo' chicken." He asks for it with his little pointer finger upraised and the sweetest expression on his face. It is hard to say no, except we need to. It devolved into a tantrum, and I offered him other foods and explained that we can't eat chicken nuggets every day, and that, today, they were not being made. I ended up putting him down for his nap without any lunch after that because he refused everything else. A good weight check helps me feel like it's okay to expand his food options without it being detrimental to his health. He was difficult at dinner tonight and didn't want his lentil shepherd's pie, usually a favorite. But, after Jeremy came home and sat down with him, he ate a hard boiled egg, grated cheese, and 3/4 of a banana.

Doing the cha-cha!

Today we cancelled our food therapy appointment and headed to our pediatrician's office instead. Kyle came down with a fever on Monday (103) that is still hanging around. He's lost weight from eating less and isn't getting enough fluids down to keep him hydrated. He is still trying though. He wants to eat at meal times, but just isn't able to do the same volume. Totally reasonable for any sick kid. Kyle's lost 6 ounces, but his weight isn't the main concern. It's dehydration. Starting Monday, I started tubing in some water here and there to help his little body keep up.

Because being sick is so detrimental to his eating, we took him in to the doctor to rule out various illnesses. My two main concerns were bladder infection (he had shown some signs that this might be possible) and aspiration pneumonia. I have lived in fear of Kyle getting pneumonia since we brought him home. Sometimes he coughs and chokes on his water and that fear in the back of head gets jiggled and awoken just a bit.

His pediatrician ordered a strep test and a urine test to check for infection. I had my fingers crossed that one of those would come back positive. They were both negative though and we headed down to the xray lab to make sure there was nothing in his lungs. Kyle was not a fan of getting xrays done. I held his hands up over his head for one of the pictures and he tried with all his might to get his arms down. He was quite strong! The xrays were clear. Hallelujah!

It's probably viral and we just have to wait it out. It is easy to feel like we are regressing when I can only get Kyle to eat a small amount of cereal, or decline food that he likes. But, on a feeding issue group I am a part of, someone posted this quote in regard to our feeding journeys:

“Two steps forward, one step back isn’t failure — it’s a cha-cha!” 

I really like that quote and just remind myself that his fever will go away, he will start eating again, and we will continue forward...maybe with a couple backward dance moves in between.

Holding steady

I quit updating when we stopped having so many therapy appointments. We would retreat to my brother's home in between appointments, and I would have no cleaning or laundry hanging over my head. That gave me plenty of time to post.

We are back to weekly appointments. We had a scheduling mishap, so this week, we have no appointment. Wahoo! It's nice to have a break. Although, we have yet to make it through a week this year without a copay for something.

So, Kyle's weight check about 10 days ago was steady, so we stopped giving him calories via tube. The next Tuesday, he dropped down only 3 ounces! We were so happy. And this past Tuesday, he had regained his weight and was back to 21lb 2 oz. I was shocked that he had gained any weight at all. I was really just hoping to hold steady. He looks so little to me. So, although we weren't doing blended food through his tube anymore, we were still pushing through water and some prune juice here and there to help his system along. This is now day 3 of not using his tube at all! He has increased his fluids quite a bit, and his body seems to be adjusting to his new method of eating.

Kyle is finding favorite foods, and we are working on expanding his choices. For breakfast, he either gets cream of wheat or scrambled eggs. Both have calorie amplification through butter and cream. I offer smoothie, chopped fruit, or toast to get him to try some new flavors. He does not like oatmeal. Bummer. He is getting a bit pickier about what he eats, but his volume is steadily increasing for the things he does like. He can pound chicken nuggets or cilantro rice.

I've learned that he is most successful if I am eating the same food as he is. That means I get to have all sorts of foods that I don't like very much. But it is so worth it to see him eat. And enjoy it. I can't remember what food it was, but, the other day, he would take a bite of something, and after every bite, he would rub his stomach and say "mmmm." Worth. Every. Minute.

Day 11

Kyle's food on Tuesday:
2/3 ounce of smoothie (fruit, juice, yogurt)
2/3 scrambled egg
125 cheerios
1 2/3 ounce of cheddar cheese
almost 3 chicken nuggets
23 g pirate's booty (almost a full serving)
14 mandarin orange segments
3 T. lentil shepherd's pie
20 g ice cream

Yesterday wasn't as good but he was having some tummy problems yesterday that have since resolved.

Kyle clocked in at 21 lbs 2 oz on Tuesday. That is a weight gain of 1 ounce since last Thursday. He is only down 1 pound (5% loss) since starting the wean. I was so worried about his weight. I thought our two pound buffer wouldn't be enough because it has been such a struggle to balance keeping him gaining and not overfeeding him. If his weight is good tomorrow, I am going to advocate for stopping all tube feeds. I think that there might be an initial drop, but that he will adjust his eating to his needs. He has shown that hunger is the main motivator for him (as it should be), and I don't think it would take very long for him to adapt. 

Today is his last day of therapy this week. After this, we will return to going just once a week. Even if we stop all tube feeds tomorrow, we still have a lot to work on with him. Mechanically, he has a definite preference for chewing on the right side of his mouth.Remember the extensive staining on his teeth I mentioned awhile ago? It was really bad, just coating most of his teeth, front and back. I noticed that some of teeth were looking better and was discussing it with somebody. We laid Kyle down to look in his mouth. Lo and behold, his teeth looked immensely better, but his left molars were still mostly stained. It looks like the abrasive nature of chewing food cleaned up the stains on his teeth. I don't completely understand why brushing didn't have the same impact, but I am so happy that he won't have brown teeth until his adult teeth come in. I showed his therapist and we are trying to encourage him to put his food in on the left. The little stinker just grins at us, says "other side," and places it in the right side.

Kyle also has definite food preferences. Cheerios and white, plain noodles are his favorites. He knows what he wants to eat and refuses to eat other foods if he sees one of his favorites. This morning I started him on an egg scrambled with butter. He ate it until he remembered cheerios. Then he wouldn't eat another bite. This is a new experience for me because I've never made separate meals for my kids. They always were served what we made for dinner. But Kyle's different and our first goal is just to get him to eat. I think food variety is a battle best saved for a future day.

Off to therapy...

So much progress!

We made it through the weekend, and Kyle is making so much progress. We are all so thrilled. 

We wrote down all the food Kyle ate over the weekend, and it was a pretty impressive list. Yesterday morning, as part of breakfast, he ate 130 cheerios. 130! Jeremy and I kept filling up his bowl after every 20 cheerios. It made us so happy.

We went to a cousin birthday dinner last night, and he ate spaghetti and ice cream with all of us. This morning at food therapy, Kyle ate some spaghetti-o's, refried beans, a quarter of a hard-boiled egg, shredded cheese, and a bag of pirate's booty. The whole stinking bag!

We are going to decrease Kyle's bolus feeds to 20% of his needed calories today and plan on his appetite adjusting. Then, if he manages to gain some weight, we quit tube feeds. If he stays steady, then we keep him at 20% for a few weeks and then pull it to see if he will increase his intake. It's a lot of changes for such a little guy, but he has been a champ going to therapy so many times a week. He just seems happier. And so proud of himself. He should be. He's worked hard for this.

Oh happy day!

(Kyle likes to sneak onto the top bunk with his sister!)

Things are looking up around here. Oh hallelujah! Wednesday, Kyle's team and I decided to increase the bolus feeds through his tube. He still gets less than half his needed calories through his tube, but it is enough to get him willing to try to eat orally. 

Thursday was such a better day! His breakfast was pretty nonexistent, but he had a little snack in the car where he ate .75 of a Doritos chip and tried a pb cracker sandwich. 

Then after a few errands, we met up with Molly and her adorable daughter for a lunch date. He did well. I don't know how much chicken actually got into his mouth, but he was trying. For me, that's the key. If we can get him to try, I can wait for his speed and volume to increase. 

His after-nap snack was great. He ate 23 stars out of an Annie's All Stars can (something like spaghetti-os). And for dinner he had another 1/2 ounce of spaghetti sauce, worked on leftover chicken from lunch, had 1 teaspoon of chicken quinoa chili, 1 tablespoon of ice cream, and some hummus. I have no idea how much hummus because it was 10pm, I was tired, and I just went to bed while Jeremy took care of Kyle. 

Making pizzas with Molly at therapy

Yesterday was such a success. My heart is about 100x lighter than Wednesday evening. I went to a meeting Wednesday night so I could think about something aside from Kyle, but just cried on the way home as I was thinking how I could make this a successful experience for him. I have good kids, but it is hard to manage intensive therapy like this and still take care of my other children. Not that I am doing it all, definitely not. People are watching Carolyn and Blake on the days school conflicts with therapy. We are camping out at my brother's house in between sessions because he lives much closer to our therapist. We have support and we are grateful for every bit of it. I just still feel the stress of everything I don't get to finish each day. Our house was cleaned top to bottom Tuesday morning, and you would never know it today. There are 4 loads of clean laundry strewn between the laundry room, kids' rooms, and the hallway. There are dried pieces of food around the house because if Kyle is eating, we let him do whatever he wants. But with all that, I have hope. Hope isn't something I've felt a lot of when it comes to Kyle's eating journey. I've felt patience...endurance...love, but I never saw the light at the end of the tunnel. For the first time, with all this progress Kyle is making with his ability to chew and swallow stress free, I see a glimmer of light far down the road. 

Who needs Penney's portraits when he can pose so handsomely with a meat stick?

Day 3

I do have pictures of Kyle, but if I wait until I have time to get the pictures on the computer, then I probably won't post for awhile. We are on day 3 and it is harder than I imagined. I didn't go into this blind, but I really didn't understand how emotionally and mentally taxing this process is.

Overall, we haven't found the correct balance of hunger and enough calories to keep Kyle from being lethargic. There are times when he doesn't have the energy to eat. He is so cranky. I know he doesn't understand, and we are talking with him and modeling behaviors to explain it all to him. We've called the therapist from Seattle Children's and played a little bit of phone tag. I hope to hear from her tomorrow and adjust his fluids and calories enough to stimulate hunger without giving him a feeling of fulness.

Except today, his sessions with Molly go pretty well. You know how kids are, they always behave better for someone else. I spent a good 15 minutes trying to get Kyle to sip apple juice yesterday, and he just refused. He has the most adorable "Nooo" said in a voice that conveys he thinks you are silly just for asking. Then Jeremy called. He just needed to hear Daddy ask him to do it over the phone, and we got him to drink 1/2 an ounce.

Today, Kyle's second session with Molly was a disaster. He refused to touch the food. He wouldn't even play with it. He struggled to buckle his booster seat, which is one of his favorite activities. We gave him a bolus of food to perk up his mood, but nothing worked. He had a meltdown, and I held him for a few minutes before he just fell asleep on me for the last 45 minutes of the session.

With all this, Kyle does have his victories. I didn't expect much for dinner because his therapy session went poorly, and I didn't have much time before Carolyn's soccer practice. But, he ate 9 cheerios and ate 1/2 an ounce of my spaghetti meat sauce. He even chewed and swallowed all the meat chunks. I sent Molly a picture with a caption telling her how he did, and she was proud of him. These successes are why we keep going. His oral motor capabilities have improved many times over since January. The days when he would throw up from having a crumb of food break off in his mouth are far behind us.

We have a lunch date with Molly tomorrow and hope the with some extra calorie boosts along the way, we can continue to help Kyle on the path to oral eating. With that said, we are currently accepting all  extra prayers that anyone might have for us.

Intensive Wean

We are starting Kyle's intensive wean today. We have slowly decreased the amount of calories and fluids he receives through his tube in preparation for today. He still receives a limited amount through his tube over the next two weeks and we really push the oral eating.

We wanted to plump Kyle up as much as we could, so we increased his calories to 1000/day over the last month. We saw a dramatic decline in what Kyle was willing to eat by mouth as we added calories. It paid off though, and we managed to get him to 22lbs and 2 ounces. It will be hard to watch that weight drop over the  next couple of weeks because we worked hard to get it on him. We hope that he will drop 1-2 pounds and level off as he increase oral eating.

He has already made some progress. Over the course of yesterday, he ate 28 cheerios! Until this week, he had never eaten even one whole cheerio. I figured out the calories for it--only about 10. But the practice of taking bites, keeping it between his teeth with his tongue, and chewing and swallowing is invaluable.


Here's to a successful two weeks!

Feeding Tube Awareness Week

The last two years, Feeding Tube Awareness week has encompassed the anniversary of the date Kyle had his tube surgically placed. His first tube was a PEG, and we would use a safety pin to secure it to his diaper so it wouldn't pull down on his little tummy. It was an experience learning how to adjust to this tube hanging off his skin all the time.

Shortly after bringing him home, we noticed he had slight discoloration on his chest. We took him into the pediatrician because, even though he was our third kid, this new situation put us back into hyperactive parent mode. Our doctor examined him, checked to make sure it wasn't fungus, and then decided it was probably a superficial bruise from a thumb. His guess was that Kyle still had very fragile skin and accidentally got bruised one of the times we grabbed him quickly during a reflux episode. I felt embarrassed and dressed Kyle to go home. While I was resecuring his tube, I noticed that when I arced his tube to be out of the way, the port laid exactly over the bruise. I felt very silly for taking him in for a bruise

I did not love the PEG. It was very convenient because we could sneak meds into him while he was sleeping without unbuttoning his pajamas, but I didn't like the way it pulled on his belly, especially during baths.

After he had his tube for about 6 weeks, we went back to his surgeon, and he placed Kyle's button in. Now we could take off the 12-inch tube in between feedings and I felt more comfortable bathing him.

The surgeon taught me how to replace the button myself and gave me a spare to take home. I'm glad he showed me because a few weeks later, Kyle's extension tube got caught between my body and Kyle's crib, and the button pulled out of his stomach. It was nerve wracking the first time I put his button in, and I felt horrible that it was my fault. Since then, Kyle has pulled it out multiple times and we've replaced it because parts of the button begin to fail. We were regularly replacing it every 2-3 months until July 2013. His current button has been in for 7.5 months.

 Kyle had a feeding tube to keep him from aspirating his food and getting pneumonia. We were able to keep him healthy all through his first year until he was big enough and strong enough to have his repair surgery. We were even able to get him very chubby. It shocks me to look back through our pictures and see this super round face peering back at me.

Reflux and sickness have swung his weight to the other end of the pendulum, but he is thriving. Kyle loves to be outside, play with Carolyn and Blake, and is catching up developmentally.

Kyle doesn't spend a lot of time around children his own age, and it is easy for me to compare his progress to other babies that I see. I have to remind myself that he spent his first 14 months being held 10 hours a day to keep his food in him. It was a tough year, but it would have been so much worse without his tube.

Kyle's progress

We go see our therapist, Molly, weekly. We've spent hours talking about what we could do to help Kyle get over his plateau while Kyle refuses to try anything at therapy. Although Seattle Children's wasn't able to accept Kyle into their program, they have a therapist who has been so helpful to our therapist. She sent all sorts of support documents to Molly and helped her get everything lined up for us to do our own intensive tube wean at home with the support of our regular medical team.

We geared up for a mid-January wean and got doctors on board and lined up 2 appointments a day in Tualatin, 3 times a week for two weeks, etc. Then Kyle got sick right before Thanksgiving (sinus infection), mid-December (GI bug), and at Christmas (flu). The poor kid's weight was back to 20 pounds and we were struggling to feed him all of the required calories in a day either because of vomiting or he just wouldn't digest his food quick enough to get all his calories. This is a very familiar pattern when Kyle gets sick. It takes a long time for his system to recover. He had lost most of buffer he had for allowed weight loss under the plan.

Molly, Kim (his dietitan), and I all got together to discuss if January was too risky of a time to try the wean. Our big concern was that Kyle would lose weight (that was an expectation because of the plan) and then get sick and not have any reserves left on his body and end up in the hospital. Jeremy and I discussed the risks and benefits a lot and really felt it was best to put it off.

Thank goodness because two days after our planned start, Blake started vomiting, then Carolyn, then Kyle. It would have been disastrous for us to be in the middle of his wean.

We have a new tentative start date of March 31. Then we will be spending a lot of time at therapy appointments and with Kyle in a high chair. It would be lovely for this to get him off his tube feeds completely, but my main goal is for him to connect hunger with oral eating, and for him to feel more comfortable chewing. Kyle has made huge progress in the last few weeks, even without any tube holidays, regarding his comfort level with food. I can actually measure the food he swallows now. It is a small amount, usually about 10 grams a day/ but compared to 0 grams that is a nice uptick. His favorite foods are refried beans, spaghetti, and chicken quinoa chili. He actually drank smoothie twice last week--about a tablespoon. It is nice to feel like his therapy is paying off.

He often doesn't perform for Molly, so I take videos of his eating at home to show Molly what he's working on and the improvements he's made. I think we have more videos of Kyle eating than we do pictures of him doing everything else.

Insurance

I've mentioned some of the tricks we are trying at home to encourage Kyle's oral eating. Did you know there is a not-so-wide network of hospital programs that specialize in intensive food therapy? Some are hunger-based, like what we are fiddling with. Some are reward-based, like our food therapy sessions are. They have very high success rates.  One program even boasted 95% success. That looks pretty darn good.

So, why isn't Kyle in one of these programs? The short answer is insurance. Our therapists say that  they've never seen it be covered by our insurance company. The insurance's idea is that eventually the child will learn to eat, so no need to pay the ultra-expensive cost if in a few years the kid could do it on his own.

This thinking makes no sense to me. Because he has a gtube, insurance covers 100% of his formula. For the first year, we only used it as a supplement, so it wasn't very expensive. In January, we switched him to Alimentum RTF, which is a premixed formula without corn. Try finding a formula that doesn't have corn syrup in it. Seriously. It's hard. It was what helped us start having barf-free days. Our home health company delivered a month's supply with all of our other feeding supplies. They charged our insurance over $1,000 for the formula alone. You would think a company would want to invest more money upfront for these programs that have fabulous success rates and stop being on the hook for a giant wad of cash every month. Maybe they don't feel the pinch though because I started blending real food for Kyle and he hasn't had formula since June.

Jeremy and I have mulled over the idea of switching to an insurance that would cover a major portion of a program like these because it is cost-prohibitive to try to pay out of pocket. The hospitals willing to quote me a price gave me figures over $15,000. I decided that Seattle Children's was where I wanted Kyle to go. It is hunger-based, 2 weeks (some are 3 or more), and close to friends and family so I wouldn't be without a support system. We started calling to find out what it would take to get him into their program.  My grand plans were crushed because they are set up as a regional children's hospital to serve Alaska, Washington, Idaho, and Montana and won't accept children from outside that region. Nevermind that I am 20 miles over the border and live much closer than anyone in those other 3 states. Or, that yes, I have two children's hospitals within 20 miles, but neither one offers a program like this. The next closest one is in the Bay Area.

I tried to ask how long I would have to move back in with my parents in Alaska for him to qualify as being from Alaska. The therapist I talked to was interested in Kyle's case and said she would present it to the board of the program, but hasn't gotten back to us. Normally, we could wait, but Jeremy's open enrollment ended Friday. So, we are still with Kaiser. It was too great a risk to switch insurance without knowing they would accept Kyle. A switch would've meant getting an entirely new medical team, which I was okay with if there was this amazing program as a benefit, but it wasn't worth a calculated risk.

Instead, we hope to try these tube holidays and as he progresses and consumes more (hopefully), increase their frequency until we convince him that eating is delicious! And doesn't always have to include retching with it.


PS: We have fabulous insurance. It has kept us financially solvent over the last few years, and I will say this has been my first complaint.

Tube Holiday

Two weeks ago we experimented with a tube holiday for Kyle. Working with his medical team, we decided to encourage hunger by skipping his regular meals pushed through his tube. We drastically increased his time in the high chair and offered numerous options of food for him to try orally to see if we could get him to connect hunger with eating.

Sunday, November 3, we started off pretty well. He licked some drops of milk off a straw, had a sip of apple juice, put 3 cheerios in his mouth and mashed them before spitting them out and licked a tiny bit of hummus. He likes to suck off all the powdered cheese from Cheetos, so he did that too.

We took him to church and worked with him in his nursery class during snack time. Kyle's interest in food was way up. He was licking all the crackers offered and even got half a graham stick to dissolve in his mouth--here's the big step--and swallowed it! He rarely swallows anything besides water and never something that was solid.

Our next big success was at dinner. He loves the brothy part of taco soup. We made it for dinner and I blended it up to offer him. He was amazing. He fed himself some bites and when he got tired of that he actually let me feed him bites! This was the most he has ever eaten in one day. It is still a very small amount, but the progress we saw was wonderful and enough to bring tears to our family's eyes.

Even though we weren't giving him his regular meals, we did want him to stay hydrated. So we pushed about 20 fluid ounces of a pedialyte-water mix through his tube at meal times.

The next day didn't go well. He was too tired from not having any food to even try to eat. We canceled the rest of the tube holiday and started giving him small meals to perk him back up. By Tuesday, he was his regular self again.

When I showed the video to his food therapist, she was thrilled as well. We are trying it again for 48 hours starting tomorrow. But, this time, we are going to give him about 25% of his calories along with fluids and see if that will help him make it through a second day.

7 months is a long time not to blog...

We are going to jump right back in with some good news. The last 7 months have been challenging. There's really no other way to put it. We've been blessed immensely and have been able to juggle everything, but it's been hard. Kyle is not progressing with his oral eating. We thought we were making some progess because I could get him to eat about 40 calories a day. Then, under the direction of his doctors, we messed around with some medications. That sent all of our progress, including 3 glorious, barf-free months, out the window. We've spent the past six weeks trying to get his system calmed down.

During this time, I noticed some staining on Kyle's teeth and became concerned. I made an appointment with a pediatric dentist. After I gave his medical history and explained about his intense oral aversion, she did a quick check in his mouth and decided she should refer us up to the OHSU dental school for treatment. She was concerned about enamel erosion and that Kyle might need caps on his teeth to protect them from his vomit. Today, we drove to his appointment (I would be happy if we never had to go up to the OHSU campus again!), and had my best doctor's appointment in months!

Yes, he has staining. Much more than a typical child his age. But, they prodded in his mouth and declared no cavities and no erosion--which means no general anesthesia to undergo dental treatments. Oh happy day!

As far as his feeding goes, we are increasing his therapy from monthly visits to weekly. I love his therapist and am willing to make the long drive to work with her. Not that there are any closer food therapists, but we could always go up to the OHSU feeding clinic. Have I mentioned I would be happy never to go back? Although, their feeding specialist is pretty awesome too. We really hope that increasing therapy will help us see some improvement. Kyle seems to be afraid to swallow. When he gets food in his mouth, he starts gagging to try to remove it. Hopefully, as we are better able to communicate with him, we will be able to ease his fears.

 This picture is from one of the first times he put something in his own mouth. It was so momentous that Jeremy and I both had to take pictures of it.