I blink and time slips by. Here we are a few months out from our last update again! After our last check up in KC with Special Care Team, we got a referral to see endocrinology to see if there was a growth hormone issue. We met with that office on May 29 and after a short visit, the doctor felt like Kyler's growth issues were not because on a hormone deficiency but we would revisit in six months to confirm what they thought. This was good and bad news. The good news is that there isn't something else to deal with but bad news because we are still trying to figure out why Kyler isn't gaining weight quick enough. On the same day we had our visit with GI clinic. As always his weight was a main topic of discussion and I brought up looking for other charts and not really finding any that fit Kyler. We shared what he was eating and how much each day since we had been logging every bite into My Fitness Pal to keep track of his calories. We shared with them that Kyler was eating all day long. Seriously, asking for food all the time. When he asked, we gave it to him(we were trying to hit that magical calorie number they wanted him at). We discussed how he was eating normal foods and that we added calories when we could but we also were making him eat balanced meals with veggies(no calories or very low) and not letting him have Ding Dongs all day long. Finally they backed off on insisting that he eat a magical number of calories and instead said we shouldn't let him eat all day long. In my head I was screaming at them. All they have preached for two years is pump him full of calories, hit that magic number, do what it takes, etc. Now they are telling us to not give him food when he asks and have him eat 3 meals with snacks 2-3 in between. I was all for not counting calories anymore so we agreed. They were not willing to remove the tube and we agreed to give him a little more time before removing the tube. We headed home and tried the new schedule for about a week and found that it didn't work well with our life. We are not that routine(especially when I am on summer break). We found that he wasn't eating as much when we limited him on when he could eat so we stopped and let him tell us when he was hungry. June was spent at the ball park watching Jaida and Gunner, swimming, playing at home, and doing what we felt like! We started low key potty training which meant we started trying to catch him about to poop and ran him to the toilet. We are still working on this! He developed a habit of putting his hand down his pants and hasn't stopped since. I think he figured out the pockets on one of his shorts and then the next pair didn't have them so he made it feel like his pocket. Then he discovered there was more down his diaper than there is in his pocket and we cannot get him to stop! Kyler got to see some big machinery when we had our basement worked on and he thought those were pretty cool. At the end of June we went in for a weight check. He weight 20.6 pounds! A new record for him! We were so excited. From 10 months until 24 months, he had bounced between 17 and 19 pounds. Gaining some, then losing some, gaining some, then losing some, repeat. July brought more ball, swimming, lake, and enjoying summer. Kyler got really good at swimming with a puddle jumper. We found that he did better in it that one of the infant life jackets because he was able to control his body position and movement some much better. He also went tubing with mom and dad a couple times! We also got to welcome a new baby cousin to the mix. Baby Boyd(Bo) is Kyler's favorite right now. He loves hugging, kissing, and telling him "hi"! We got to take a short trip to Nebraska to meet Bo and play with cousin Lee. It was fun and Kyler really enjoyed the trampoline park we went to! Towards the end of the month, we took a trip to Blaine, KS for the Moran Family Reunion. We went to check out the old farmstead which is still owned by a Moran. We met a ton of relatives and spent some time figuring out how everyone was connected. Kyler was a hit with everyone, saying hi and smiling to anyone who looked his directions and giving hugs to those he could! The big kids had fun playing with cousins and doing the photo booth! This month we also took the side off his crib and converted it into a toddler bed! He is doing well sleeping in it and has only fell out once! Now that it was the end of the month it was time for another weight check. Kyler weighted 21.2 pounds! More good weight gain! He has gained 2.6 pounds since May! He also grew almost 2 inches! Amazing growth for Kyler! Now we were sure we wanted the tube removed so we emailed GI and Surgery Clinic to let them know we wanted to remove the tube and asked what steps were involved and follow up care. Surgery clinic responded that it could be done in the office with GI's approval. GI took a little longer to respond and that's when things started going downhill a bit. They replied that he qualifies for "severe malnutrition" and that they were concerned that with the cold and flu season coming up, if he might fall ill and need the tube for hydration/food. They also went on to say that they want to watch his trend over time and not compare him to a normal chart. They want to see zero tube use and weight gain over 6 months before removing the tube. I was furious. Mike was furious. I called to talk to Kyler's PCP about them labeling him as "severely malnourished" and he suggested we ask what they used for that qualification because he didn't think he was malnourished, small yes, but not malnourished. We were flabbergasted that now after 2 years of trying to tell all of his doctors that his small size wasn't a big concern because of how small our other kids were/are and that we need to look at Kyler and not numbers on charts, now they act like this is a new idea. Then on the point about cold and flu season. We take a lot of precautions to limit Kyler's exposure to illnesses. His lungs will always be compromised and we will always worry about cold and flu season for that reason but as his PCP said, he will face winter every 6 months for the rest of his life. That is not a good enough reason to leave in a tube that hasn't been used for 7 full months. I also noticed that they were not looking at the most recent weight check because they said they didn't have updated height. This bothered me because I checked with his PCP and they sent it 5 days before I emailed them. I had to take some time to respond because I was still furious about their reply. When I calmed down, I attached a copy of his most recent weight/height and asked them to explain the "severe malnourished" diagnosis. I received a reply talking about his z-scores(which are taken from the growth charts, the same growth charts they said in the previous email we shouldn't pay attention to) and they dropped the "severe" off and now he's just malnourished. They went on to say that there aren't charts that match him so that limits their interpretation a bit and I quote, "That being said, if he would continue his current growth pattern for 6 months, without the use of the tube, I would be willing to remove it. No matter if he was "malnourished" by the charts or not. His trend is what is the most important. I just want him to be in a healthy, safe place before removing it." I was beyond mad. They labeled him severely malnourished based on the charts that they say don't fit him. I feel like they put that there as a scare tactic to keep the tube in longer. I am also ticked about keeping the tube in for 6 more months, he has already not used it for 7 months and shown he is able to gain weight. I talked to many different people on Kyler's local teams and none of them felt like he was malnourished, or had concerns with removing the tube. Now we are being overruled by a team who has seen Kyler a TOTAL of 5 times. It was recommended that we go for a second opinion from a different GI but I am not ready to go down that path yet. I want to see if we can work it out with our KC team before involving a whole new team of doctors. I started compiling my argument/evidence to send back to the KC GI team. I needed a week a or so to calm down so that the first words out of my mouth back to them were not something I would regret later. Some of the main points included he is gaining weight and height with 0 tube feeds for 7 months, he will face winter every 6 months(so are we going to leave it in for the rest of his life), it is just an open site for infection(it also catches and pulls on things as he is running around), he is hitting all of his developmental milestones, he is very active, he eats the same food as the rest of the family, if he were to get sick enough to need the tube he would be hospitalized in which case he'd get nutrition/hydration through an IV(or a NG tube), and we would continue to watch his growth very closely and take action should any concerns arise. As I was taking time to collect all of my thoughts and figure out how I wanted to respond, school started and I got side tracked. Next thing I know, its the end of August and time for another weight check. This time Kyler weighed in at 21.7 pounds(.5 pound heavier) and grew another .2 inches making him 33 inches tall! More growth. Now I was ready to reply. I got some help wordsmithing my start of the email and then went through each of our points. I think it sounded very clear and I let them know that we felt very strongly about the tube removal. Now we are waiting for their reply back to decide our next course of action. In the meantime, speech continued to work on imitating and producing more sounds, putting together sounds to make two syllable words, and naming familiar things. He is really good at saying "Jaida", "Dada", "Bubba", "Mama", "Bo", and "Lee". He is starting to make the Bl blend like in Blippi(his favorite tv show) and Billy(great uncle). He is starting to really attempt different words and sounds. We have been working on animals sounds and I think he is hilariously cute when he does them. He says "woof woof" anytime he sees or hears a dog, he makes the "clicky clack" sound of horse hooves when he sees horse, and he folds his arms like wings and attempts to say "bock bock" for chickens. He is doing other animal sounds but those are my favorites. He recently learned "no" and while I am happy he has a new word, I am not particularly thrilled that he knows how and like to use it! In physical therapy he has begun walking down the stairs just holding the wall for support, he is attempting to jump, and his run is getting quicker and more steady! He got to try out a tricycle this summer but was just a bit too short for it at the time so maybe next summer he will be tall enough for one! In August we made a trip to KC for fun for once! We made plans to attend a CDH meet up at the Deanna Rose Children's Farmstead. It was a rainy and wet day but still a handful of families made it out. Most were from the KC area with us having traveled the farthest and one other family coming from Topeka. It was neat sharing stories and meeting others who had gone through or were going through the same things we did. We met an expecting mother of a CDH baby who we've been able to pray for as they prepare for their warrior's birth. While we were in KC, we celebrate Gunner's 6th birthday. He got extra spoiled by birthday dessert at every restaurant! In the last month we have had some major changes as well. Since Kyler is no longer using the g-tube and hasn't since the start of the year(yay for 8 months of no tube use), he no longer qualifies for the TA Waiver which allowed him to have a home health nurse. We found out that Aug. 30 would be his last day of coverage. This was disappointing because the home health nurse is needed to lessen his exposure to illness that could get to his lungs by keeping him in the home as much as possible during winter. To add to that, our amazing nurse Kalisha went out on maternity leave just after the start of Aug. and we had a substitute nurse for the rest of the month. We realized just how spoiled we were with how amazing Kalisha was when we had a different nurse for a bit! With taking everything into consideration, we felt like it would be best to keep a home health nurse and pay out of pocket now that he no longer is on the TA Waiver. We also learned that in moving from the TA Waiver to private pay, we have to switch companies. We were very concerned about this because we wanted to keep our nurse and weren't sure if that was possible. Luckily it was, the companies are sister companies and we are able to keep Kalisha with us(once she returns from maternity leave)! We have a few more weeks and in the meantime Mike is on Kyler Kare during the day and sleeping when he sleeps. We will also be using family to help Mike get some sleep before work each night. In other exciting news, my best friend had her beautiful baby girl on the 13th! I love her already and even though the kids haven't met her yet, I know they are going to love her too! I am hoping to get to update soon with good news from GI so stay tuned!
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Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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