Week 5

Sorry for posting so late, we had a wonderful but very busy weekend!!!

Last week was overall AWESOME in feeding school!!! Monday, Evan was still sick. He sounded awful even with us doing breathing treatments all weekend. The nurse at the feeding clinic listened to him and said it's time to take him to the pulmonologist to get looked at. He sounded really wheezing and she heard popping of air sacks when he was breathing in. The bright side was he was still eating!!! This is a huge milestone because historically, Evan would stop eating when he was sick, he's never continued to eat when he was sick:) This is good to know because the docs won't take his feeding tube out until he's had an illness and proves he won't shut down. It was also a big day because I got to go into the room with him for his last meal. He looked very confused that I was there but it didn't seem to bother him.

Tuesday was even better.....I got to FEED Evan!!!!! We did so good together:) They added a new food to his list, chicken and mashed potatoes. He did some gagging on it so they faded it (this is when they add apple sauce to the food to make it easier for him to swallow. It's all pureed but some of the puree's are stickier than others, the starchy foods. When you add apple sauce it makes it slipperier making it easier for Evan.) They are thinking they will need to fade most of his entrees. The last feeding of the day was not so great:( Scott left the room completely so it was just me and Evan. He cried the ENTIRE meal and I was unable to distract him back. Scott and I both thought it was because he left the room and Evan was just getting used to the new feeding arrangement. So the decision was made to hold off feeding at home tonight and do three good feedings tomorrow. They don't want to set me up for failure at home:)

On a side note, Evan was seen by pulmonology on Tuesday. They are pretty sure Evan is moving out of chronic lung disease into asthma:( Chronic lung disease is something that goes away with time. At almost 4 years old, it should basically be gone. His lungs sounded like crap so they are pretty sure seeing that Ryan had asthma as a child, Evan now does. So they switched him to a daily inhaler. The bright side, no more 20 minute nebulizer treatment every night:)

Wednesday was a GREAT day!!! He took all 3 meals at the feeidng clinic from me:) I just perfected the squeeze bottle making sure I got big enough drinks for him. We had another graduation at the feeding clinic, another former 23 weeker who is now 5 years old. The kids had a great last day together, we all spent time with each other saying good bye to John. Here are all the kids together, the first of the group is gone!

 

 There also was a fire drill that day. Evan was fast asleep and didn't have a chance to put his pants back on:) The kids loved watching the fire men check out the building! I was nervous Evan wouldn't eat good the next feeding because he only got a 45 minute nap, but he did great!

 

 

 

Evan and Carson practicing chewing! Carson is a twin and was born at 28 weeks. His twin brother does not have feeding issues. Carson graduates on Friday!

 

Here's Evan in his nap room. He wakes up slowly by watching cartoons on his iPad.

 

Evan loves crawling around and chasing Luke! Luke came into the program because he wasn't gaining weight and would only take a bottle. He's 2 1/2 years old. He does not have a feeding tube (not every kiddo does).

 

Wednesday was also a big day because I fed Evan at home for the first time!!! It was kind of a comedy of errors but he did great! Ryan had a fantasy football draft party at our house that night. The rules were for us to have just me and Evan in a room with no distractions (Gia and Diesel couldn't be in the same room with us). So I kicked the guys out of the house onto the deck and Gia was sleeping in the swing in the sun room. We could still hear the guys talking at half way through the meal Gia woke up screaming. Evan looked towards the sun room, pointed and said GG.....but he kept eating!!! He even finished with 2 minutes to spare on his timer:) He's such a rock star!!!

 

We went from a great day on Wednesday, to an awful day on Thursday! The first feeding was good but the last 2 were awful. The second feeding he cried the entire time but I was able to get him to eat and drink everything (not sure how that happened). The last feeding of the day was the longest 17 minutes of my life! There were tons of tears, coughing, and he even tried to bat away my hand. I was taught how to block him (basically hold his arms down with my one arm). The only thing I can think of is he is having digestion issues from switching from tube feeding sometimes to feeding him by mouth with thickners. He never has tolerated switching foods well and I think he's a little constipated. Scott gave me the best compliment however after the last meal. He said it was the best meal he's seen me do yet!!! He said most parents start pleading with the child and slip into old habits. I stayed firm and ignored the crying and hitting. The whole way home I prayed and cried that his feeding at home that night would be good....and it was:) He ate great at home!!! Again, he was finished with 2 minutes to spare!

 

Friday I had to work so Ryan took Evan. They started Ryan's training right away and got him in the room with Evan. He didn't feed him yet but Evan liked having him in the room. I fed him his last meal of the day when I got home from work and it went great!

 

This weekend was the first weekend where we could feed him at home! They usually don't start you right out of the gate feeding all 5 meals by mouth but seeing we think he's gut isn't tolerating all the switching back and forth, we fed all 5 meals by mouth. And he did great! Sunday we had Gia baptized and had dinner at my parent's following the baptism. It was loud with the amount of people there but Evan again ate great! I don't think theres anything stopping him now!

 

I'm looking forward to seeing how the next week goes. Again, they told us he would have an early discharge and we actually got a date of September 9 for his graduation from feeding school:) 2 weeks early!!! Thanks for your continued prayers and support...our miracle man is once again beating the odds!

 

Lindsey



Week 4

Evan continues to amaze me week to week!!! Another great week at feeding therapy this week:) I keep waiting for a set back or for him to quit eating good. He makes me SO very proud!

Monday his therapist Scott returned from vacation. When Scott left, Evan was only doing small amounts of Pediasure off a spoon. So he was shocked when he found out not only is Evan eating 3 different foods, but that he is also drinking from the straw bottle. And not only drinking, but taking a full meal and not needing a tube feeding:) I was also nervous because he had the weekend off. They haven't trained Ryan or I yet, so we can only tube feed at home. I thought that he would have to get used to eating and drinking again after having two days off. I was once again proved wrong by Evan. He ate and drank everything the first meal of the day and he even finished the meal BEFORE the timer went off! He did so well the first feeding, they decided to introduce a fourth food, green beans. This was a big step because everything he's gotten so far has been sweet and green beans is a savory food. Evan in the past has not liked green beans. He did ok with them. He made quite a face and gagged once but he continued to eat them.

Tuesday they continued to work with the green beans along with the other foods he's been eating. He was expelling quite a bit of the green beans out today. They ended up decreasing the amount of green beans in order to give him smaller bites which helped. They want him eating 30 grams of each food for a meal, they decreased the green beans to 15 grams and increased the amount of the other two foods. They again increased his feeding time to 17 min which he tolerated well. Another big change was they took away his added water throughout the day except when he gets his meds. Because of this, I don't have to tube feed him AT ALL for his 12:30 and 3:30 feeding!!!!! His last meal of the day was perfect! He got used to the green beans:) Every Tuesday, I have a care conference with his therapist, social worker, psychologist, and dietician to discuss how Evan is doing, any concerns we may have, and what the plan for the upcoming week will be. They all were raving about Evan! They are so impressed with him that they mentioned EARLY DISCHARGE from the program!!!!!!! He has exceeded their expectations! We got a schedule in place for me to start training to feed him next week, Ryan the following week, my mom the week after Ryan and then he will be discharged (if all goes well)!

Wednesday they bumped him back up to 30 grams of green beans. He did great! No gagging or faces when eating them. Again, he finished eating before the timer went off. After two good feedings, they decided to add beef stew to his meal. He gagged pretty bad the first bite but he kept eating. They did the same thing they did with the green beans and just gave him 15 grams. They don't want any part of the feeding to be negative, so they don't push hard if he starts to gag. Thursday, Ryan was with him. There wasn't any changes from the day before. They just perfected eating the beef stew and by the last meal, he was taking 30 grams of beef stew easily.  Friday was pretty much the same also except they did two non preferred foods with one preferred food during the meal. For instance, they gave him green beans, beef stew, and apple sauce. He was always used to eating two sweet foods with one savory. He did good! They also added cream of wheat and he didn't make any face or gag.

Unfortunately, Evan is starting to get sick! One of the little girls had to go home on Wednesday because she was running a fever and now Evan has a pretty bad cough and runny nose. Historically, when Evan gets sick, Evan won't eat! However, he did great Friday even with all his coughing! So this weekend we are pushing breathing treatments and motrin in hopes to get rid of whatever is brewing. I don't want anything holding him back or making him go backwards.

So we are more than half way done and I couldn't be happier! Thank you for continuing to keep us in your thoughts and prayers. They are being heard and are working!

Lindsey

Week 3

Another week is under our belts! And what a GREAT week it has been:) Each week gets better and better, I hope this trend continues to keep up!

I had to work Monday, so Ryan was with Evan. I got a text after his first feeding from Ryan saying they reintroduced the squeeze bottle and he did AWESOME with it. They also increased his feeding time from 12 min to 15 min to give him more time to eat. He handled all the changes wonderfully. I was back with him on Tuesday and they continued to work with the squeeze bottle. He was pretty uncoordinated with it the day before so they wanted to work more on shaping his drinking with it. He took a total of 4 ounces of both drink and food so I was able to decrease his tube feedings by 4 OUNCES!!! I was now tube feeding less than what he was taking by mouth. What a great feeling! He also is becoming very used to the routine of the therapy. He takes a bite or a drink and he gets rewarded every time with either getting to play with a tractor (John Deere of course), blowing bubbles, playing with a drum, etc. every single bite or drink. He goes wild during the playing time (which only lasts about 10-15 sec) and than calms down immediately when they take the play thing away and say "Evan take a bite/drink".

Wednesday made me a little nervous. He has two therapists he works with. Mr. Scott is on vacation this week and Miss Amanda was doing intake exams. So Evan had a new therapist he has never met. I was certain he wasn't going to do good for her because he was used to the other two. But he proved me wrong!!! He again did amazing and each feeding I was able to decrease his tube feed by 3 1/2-4 ounces every time. They also added food this day:) He's only been getting his thickened Pediasure on the spoon and the squeeze bottle, but today they added applesauce. His first bite was hilarious. He gave the therapist quite the look like "hey what the heck was that". But by the end of the day, he was a pro and was taking huge bites. She was scrapping the bowel by the end of the feeding session. The funniest thing he started doing today was opening his mouth as soon as the play thing was taken away without being prompted by them saying "Evan take a bite/drink". Thursday Miss Amanda was back which made Evan happy. He did the best he's ever done with the squeeze bottle by keeping all of the drink in his mouth! He is taking huge drinks, they want at least a 5gm drink and he was consistently taking 5-7 gm:) They also added sweet potatoes in. So no he was just getting apple sauce and sweet potatoes, no pediasure on the spoon just in the squeeze bottle. He did great with it! Again made a face the first bite but quickly adapted to the new food.

Friday was the BEST day yet!!!!! They added another food to his meal, fruit cocktail. So he's back to eating 3 different foods with meals. The goal is a fruit, vegetable, and an entree. He's never done very well with the entree part of the meal so they decided to not start that on a Friday. They will probably start that on Monday or Tuesday. He ate like a champ. Amanda commented that he acts like he's been eating forever:) But the best part was.............HE ATE AND DRANK EVERYTHING FOR ALL 3 MEALS!!!!!!!!!!!!!!!!!!!!!!!!!!! I didn't have to tube feed him ANYTHING except for his meds and his extra water:) WAHOOOOOOOOOOOO!!!!!!!!!!!! I can't believe he's gotten this far in just 12 days of therapy!!! He is definitely a rock star!!!

I've also noticed he's talking a lot more! His therapists are all speech pathologists, and being SP's they can't help themselves by working on his speech during the meals:) They prompt him to say 'go' to make the tractor drive, 'more' for playing with things, 'dd' for what animal he wants to sing about (our dog), when they ask him which direction he wants the bubbles blown he says 'down'. He is really talking up a storm since starting therapy! We are getting two therapies for the price of one!

So this weekend we have NOTHING to do:) I don't have to work and can just spend time with both kids and Ryan....and I'm going to take full advantage of it! I hope you all have a great weekend, and I look forward to telling you what our miracle man does next week!!!

Lindsey

Week 2

Well we have the first full week under our belt and it was a GREAT week!!!!! The protocol feeds started Monday and he rocked at it! He did so well that they advanced him to actually getting "food" on the spoon on Tuesday:) Ryan was with him on Monday and he kept texting me all day on how well he was doing. I was shocked when I came on Tuesday and saw for myself. I've NEVER seen his mouth open so big. He's like a little robot, they saw Evan open and touch his chin and he opens! AMAZING!!!

So what is a protocol feed? Last week they trial and errored several things to find out what works best for Evan (what seat to feed him in, what utensils work best, and what type of cup to drink out of). At the start of each meal they say "Evan, we are going to eat and drink now. You are going to start your timer and when it goes beep beep you are all done". They have Evan hit the start button on a timer and they begin. The timer lets Evan have an expectation on how long his feedings will last. He also knows that when the timer goes beep, if he is in the middle of either eating a bite or opening his mouth, he's not officially done until he's completed his task. They are very persistent with him and they will not give in to bad behaviors. They have a different approach to bad behaviors in fact. Where you and I will try and convince him to take a bite by talking to him or saying if you take a bite I will do this, they won't even pay attention to the behavior. They say if you make a big deal out of him not eating, he will learn he gets attention from the bad behavior and continue it. Therefore, if he keeps his mouth shut and won't open when they say open, then they keep the spoon or squeeze bottle at his lips and say open your mouth every 15-30 seconds until he will. They will wait until he does it before moving on. I really think these people have the patience of a saint!

So Monday, they started the protocol feedings without any type of food or drink. They used a dry spoon to put in his mouth and a dry squeeze bottle to get him used to having each of those things in his mouth. They told us to expect to do this for at least a week or two before introducing anything. They were so happy with how he handled the first day of protocol feedings that the next day they introduced pediasure off the spoon!!! And he did GREAT! The psychologist sat with me to watch how he would do and told me to expect bad behaviors because it was new to him. But there weren't ANY bad behaviors:) She was shocked ans said Evan made a liar out of her. He took about 2/3 an ounce each feeding which wasn't enough to decrease his tube feeding amounts but it was a great start! And imagine trying to drink a glass of water off of a spoon, it would take much longer than if you were to just drink it out of a bottle/cup.

He continued to do well the next morning so they decided to put liquid in the squeeze bottle also! He was going warp speed through the program. However, this back fired and he resisted:( They decided they were pushing him way too fast and they needed to slow down. So the rest of the week, they just would do pediasure off the spoon and continue to work with the dry squeeze bottle.

Today, he ROCKED!!! Since Thursday, we have been able to decrease his tube feeding by one ounce because he was consistently taking an ounce by the spoon. Today, he is doing even better and I've been able to decrease his feedings by 2 ounces!!! They are scraping the bowl to get him all of the pediasure by the end:) They also increased his feeding timer to 12 minutes up from 10 minutes because he actually acts disappointed when the timer goes off. He loves his therapists Amanda and Scott! They are once again talking about retrying the squeeze bottle on Monday:)

So we've had a great week! I actually look forward to coming here instead of dreading it. I'm excited to see how Evan eats. Today, we celebrated the graduation of another kiddo from the program. I got tears in my eyes thinking about when Evan gets to graduate! I'm already planning his graduation party:)

Today is Gia's 4 month birthday! It's hard to not be with her during the day. I only get about 5 hours a day with her and this weekend I have to work. But I know she's being loved on by grandma, aunts, and great aunts! And like I've always said....This too shall pass! This is just a short period of time and the results will be well worth it! Have a great weekend:)