Well it has been a while since the last update and I somehow completely missed doing an update on his 4th birthday! Oops! So a quick recap to get up to speed and then I'll share about his cardiology update from today's appointment.
Kyler started preschool this year and is going 3 days a week. In addition to preschool he is also continuing in Language Lab 2 days a week for his speech services. He absolutely loves school, his teachers, being with friends, and getting to do the same things his sister and brother get to do. While it has been so exciting for him to get to go to preschool and be around other kids his age more, it also has brought its own set of challenges. He has had a rough year of building his immune system. Since he has never attended daycare or preschool, his germ exposure has mainly come from family. This year he has caught all sorts of "bugs" and is getting hit one after the other with all of the normal things kids catch over their first couple of years that he is catching all in one year. Thankfully he, and the rest of our family, have avoided catching COVID(fingers crossed it stays that way). In November he ended up have surgery to remove his tonsils, adenoids, and ear tubes. He handled the surgery well but had to stay out from school and activities for two weeks. Unfortunately, he caught one bug, and then another and missed a month of school. That wasn't very fun. He felt pretty well but kept running fevers so he couldn't go to school until he was fever free for 24 hours before school. He ended up on an antibiotic after running fevers for 2 weeks, and that took care of it. We were all very happy that he was able to get back to school and his friends. Now fast forward to today's appointment. Today was a regularly scheduled check up on his heart. He has had to have one every year due to the CDH and ECMO. This time we had scheduled the appointment with Children's at the Kansas City Campus thinking this would be his last planned check up with them. We had hoped that we could take some time to stop in and see some of the amazing people who cared for me and him before and after birth. We get to his appointment and checked in. Kyler was pretty impressed with the cool decorations he saw in the hallways. First up was checking his weight and height. Our big guy still isn't so big, weighing in at 28 pounds 11 oz WITH clothes on. He is growing in height though and currently standing at 3 foot 3 inches tall. Then next part was the EKG. When the nurse started putting the electrode stickers on him, he started crying a bit and whining. That was quite a surprise for me. He has done so incredibly well dealing with all of the procedures he's had in the past(including x-rays recently) that I was really caught off guard that this was freaking him out. The stickers were a little cold and sent goosebumps all over his body but with some hand holding, kisses, and a bit of distraction by letting him tell the nurse the color of the wire attachments, he ended up doing okay with it. He got to see what he looked like with them on and wanted me to take the stickers off and then he was happy again. After a short wait in which he got to play with the wall toy and "drive" the car, we were taken to a seperate room for the Echo. Again he got kind of worried and fussed a little but he got comfortable and was able to do well for the whole time. The whole procedure he went between watching the cartoon on the TV, doing 100 questions about what we were doing, and watching his own heart on the monitor. He thought it was neat to see and kept asking if it was "beeping". He also wondered why it wasn't in color, like I said 100 questions! The tech turned the sound up and Kyler got to hear his heartbeat from the machine but he didn't like that as much, he said it was loud! After the tech got around 40 or some images of his heart, we were done and headed back to the first room to wait on the doctor. He came in a said that everything was normal and that his next follow up would be in 2-3 years. It was really hard to hear/understand what he was saying but at one point he said something about dilation of the aorta and genetic anomaly. That made me stop him and get some clarification. I asked if there was any dilation of Kyler's aorta and he said not but it was something they were watching with his genetic anomaly. I was surprised by this as I don't recall hearing about that being a part of his genetic anomaly. After we left I got to thinking about that more and I wonder if they have learned more about that anomaly in the time since it was found(almost 5 years now). A friend also said that maybe they are watching for that as part of the study they were doing in which Kyler is one of the case studies for that anomaly. Either way, we have some research to to and see if there is more information available that we need to be aware of! We got our paperwork and headed out of the cardiology clinic. Like I mentioned before, when we had scheduled the appointment for there, we had hoped to get to see some of the people who took care of us. We knew one of the people we had wanted to see wouldn't be there but we ventured toward the Fetal Health area to see if anyone else might be there for us to say hi to. I got confused pretty quickly because the sign for Fetal Health was now on the 1st floor and not on the 3rd floor. I was doubting whether we could even get to the right place when we just happened to run into one of the people we had hoped to see. It was completely by chance and was meant to be. She brought us in the side door to visit with her and she couldn't believe how big Kyler was. She also shared that it was super lucky we ran into her because due to the staff shortages in hospitals everywhere, she hasn't been at that campus for 2 weeks and had been out for a while herself. We asked about a couple of the others and they were out that day too so we are hoping we can schedule a time later once all of the craziness has slowed down(hopefully gone away) where we can make another visit just to see all of those amazing people! Next stop was dropping off all of the pop tabs that people have collected for us. There had been some changes at the Ronald McDonald houses as well. There is now a playground for the families/siblings to use right between the three houses. We dropped off the tabs and headed home. After our visit today, I am praying even more that all of this crazy pandemic goes away or at least becomes much more manageable for everyone. I am so thankful that Kyler was born way before this pandemic hit. Hearing about the staffing issues, bed availability, and the sheer craziness that has come with the pandemic made me realize today, that if Kyler had been born mid-pandemic, our story..his story could be very different. Not only in the availability of the amazing people who helped him survive, but how so many of our family and friends were able to be a part of his first months of life. I know we would have dealt with what we had, but thinking back and imagining the possibility of being up there by myself 100% of the time with not getting to see Mike and the kids, Mike not getting to be there for Kyler's first days or any of the NICU stay, the kids not getting to see and bond with him, just feeling so alone up there would have be excruciating. So now back to our crazy day to day normal and being thankful that Kyler is doing so well.
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Life changing. That is the only statement that can truly describe our little warrior. He amazes me every single day and I thank God that we were chosen to be his parents! Since the last update(almost 8 months ago, oops!) there have been a few things that have happened. After losing the TA waiver and then having issues with our insurance, Kyler didn't get Kalisha back after her maternity leave and he no longer had a home health nurse. We miss her and are so very thankful for the time she was with us. So Mike has been a champ and dealing with Kyler's care at home during the day while the kids and I are at school. Kyler and him have gotten on a pretty good schedule that lets Mike sleep when Kyler naps(and thankfully the kid loves his naps-most of the time) and then I take over when I get home from work. We didn't feel comfortable putting Kyler in daycare with it going into cold and flu season so we felt like making it work at home was the best option for us. We were also in the middle of discussing Kyler's G-tube with the GI team in KC. We finally got approval for us to remove the tube after I had sent the email with all of our thoughts and points laid out. So we made the appointment and on September 11, 2019 Kyler had his G-Tube removed!! It was covered with bandages and we were told it would take a few weeks to close and if it didn't close on it's own, he would need surgery to close it. As September continued on Kyler was busy trying to keep up with Jaida and Gunner the best he could! We got to spend sometime with Kinsley Jo, my best friends baby girl and then we got to meet Kalisha's baby Kamila too! Kyler(and his mama) just loves babies! Kyler's independence has grown every week. Starting with him getting out of his new toddler bed to watch TV in the middle of the night! Sneaky little thing figured out how to turn on the TV and he thought he could just go watch TV instead of going to bed! It had now been a couple weeks since the tube removal and it was still leaking. Then we put some large bandages on him to cover the hole and they had some kind of medicine on them that reacted really badly with Kyler's skin. It essentially cause a chemical burn and the area around his g-tube site became blistery. It looked awful and hurt, and I felt terrible for putting those kind of bandages on him. It took about a week for those blisters to heal and unfortunately he was still leaking from his G-tube site so it looked like he would need surgery to close the g-tube hole. October was pretty laid back with attending bubba and sisters ball games, playing, and a wedding. At the end of October he went back to Children's Mercy in KC for his g-tube site closure. That was a same day surgery for him so we got there early and came home that same day. We were able to drop off pop tabs to the Ronald McDonald house while we were there! Finally it was Halloween. I love Halloween! I love the costumes and this year I loved our costumes a lot! The kids costumes were ocean themed. Jaida was a mermaid and I was really proud of her costume, I made it all! Gunner was a shark, I made his too but it was easy thanks to a sweat suit and some vinyl and velcro! Lastly, Kyler was a scuba diver and we were able to use his wet suit from the summer with a fake air tank to complete his look! Unfortunately Halloween turned out to be pretty chilly but it was still fun! In November and December we got to see friends and family for the holidays. Mike and I finally were feeling comfortable with how Kyler was doing to be able to leave him and the other kids with family while we took a vacation to Mexico. It was good for us to have some time to us and we had a blast with the group of friends we went with. When we came back it was snowing and so cold but we were so happy to see the kids again, and they were pretty happy to see us too! After we were back, we got to enjoy Christmas with our family and we were pretty sad when our Oklahoma cousins had to go home. We got to go to the trampoline park here in town with some other family. Kyler was still working on jumping and the trampoline proved awkward to walk on for him but we still had a lot of fun playing with our cousins and watching them(Lee) be way braver than Kyler and I(neither of us like heights)! The new year rolled around and we celebrated the new year with a Noons Year Party put on by one of my massively creative and fun friends! Then we went to visit Grandpa Joe and tell him we missed him. On the 8th we went to the Children's Mercy office in Junction City for a check up on Kyler's heart. It was part of the routine checkups that were set up due to the CDH and ECMO. He did amazing and was so cooperative! They looked at his heart structure and function. His heart looked normal and did not have any significant structural heart disease. His EKG showed possible left ventricular hypertrophy. They also said that due to the uncertainty of developing cardiac abnormalities, especially aortic root enlargement, he will go back in two years for another check up. February passed in a flash after celebrating Mike's birthday. Kyler did get to go along with dad to bubba's classroom for his valentines party. He thought he was pretty big stuff getting to be there with him! We ended February celebrating Jaida's 9th birthday and then spring break came pretty quick! We loved getting to see our cousin's over spring break, especially Bo(he moves more at Kyler's speed)! We also were able to get Kyler signed up for preschool for next school year! It's crazy to think that it's time for that already but we are excited for him to get to go to Angel Academy like his siblings did! At this point we are planning on 3 years of preschool with him having a May birthday. We did that with Gunner and have no regrets at all! We were all set to head back to school and then COVID-19 happened. We went into lockdown at home and became quite fearful of getting exposed. With Kyler's history, this kind of illness would likely be catastrophic for him. So we did the sanitizing, we stayed home(except for Mike who still had to go in for work), I taught from home while keeping the big kids going and Kyler occupied, we stopped letting people come in the house, started ordering groceries to avoid the stores, and did what we could the limit our exposure or chance of exposure. The kids have been riding their bikes around the neighborhood a lot. Mike and I even got our bikes out and started riding with them. Kyler gets to join in by riding on my back in the baby carrier we have(I know we have to look really silly that way)! Kyler had tricycle on loan from Infant and Child Development who his speech and physical therapy is through but wasn't able to do it independently. We found out that Kyler was getting a specially designed bike from Ambucs that would allow him to be more independent and ride a bike like other 2-3 year olds can. We were supposed to go to a special presentation of the bike but due to COVID-19, that event was postponed. They wanted him to go ahead and get the bike so he could be using it so his physical therapist brought it out to him one evening complete with a matching helmet! Kyler was so excited. We were excited for him! The bike is a tricycle that has a pull system for the pedals to help him. It is size adjustable so he can actually reach the pedals(which have straps to help him keep his feet where they need to be). It also has a handle so that we can help steer him when he needs help. The bike also has a little license plate with his name on it! Since getting it, he has rode it 4-5 times a week and is now at a point where he can pedal himself all the way down the block without help! He can get it started from a standstill(most of the time). You It makes this mamas heart so happy to see him riding along with his siblings but most importantly, he is so happy riding it and doing the same things as Jaida and Gunner! The last couple months I feel like he has really taken off with different skills. In addition to the bike riding, he is now jumping and getting 2 feet off the ground at the same time, running like crazy, climbing everything, and just being a pretty typical toddler! He has been working really hard in speech and really done quite well with tele-therapy for those services. He is talking non-stop and getting easier to understand! In April we started the process of moving him off his IFSP to an IEP by transitioning him from Infant and Child development to Central Kansas Cooperative in Education(who I work for) because he is turning 3 and is aging out. The process was pretty simple, the evaluation team for CKCIE did a tele-evaluation and talked with ICD to determine his areas of need. Then we had an IEP meeting. Kyler's cognitive and learning abilities are looking pretty solid as of now so he did not need any services in that area and the main focus and area of need is his speech articulation. His language and use of language is good but being able to understand him is not the best. Physically he is doing well but with the CDH and patch it was decided to keep him on for consult to make sure there aren't any issues as he hits some growth spurts in the next year and the risk of him developing scoliosis(due to the patch pulling). One of the options they thought would be best for Kyler was a speech service they call language lab, which is essentially a preschool group setting with a heavy focus on speech. This sounded like a good thing for him so at this point we are going have him do his preschool with Angel Academy 3 days a week and Language Lab 2 days a week. He is going to love school and getting to play and interact with so many kids! I am a little nervous about him going from no daycare to 5 days a week of school but we will see how he handles it. So when Kyler turns 3, he will no longer get Miss Amanda and Miss Shayla for his speech and PT services and will instead have to wait until the fall to get speech again when the school year starts up. As excited as I am for him to get to do preschool and get his speech needs met, I am also nervous for him. Since we haven't had him in daycare, most of his interaction with other kids are relatives. I am sure that he is gong to get sick pretty quickly upon starting school just from being exposed to a wider variety of people than he ever has been before. Then to add to that is the worry about COVID-19 flaring up again for another wave. I know he can't be at home forever but it does make me pretty nervous with the timing of him having to start getting out around other settings and having a nasty virus running around. I will be praying that a vaccine or medical break through happens before then. Now it's May and the kids have been playing outside like it's the middle of June, my school had a parade to see all of our students(the kids had fun waving with me), and we've celebrated my birthday. In the last week and a half Kyler has had a couple of appointments. The first was a tele-med appointment with Surgery Clinic from Children's Mercy. I took Kyler in to the hospital here to get X-rays a few days before that appointment. I was super proud of Kyler, it was the first time he'd had to go out and wear a mask and he rocked it. There were so many other people we saw that weren't wearing one or not wearing it properly and here a little 2 year old was marching along the hallways wearing his like a pro! He did awesome for the X-ray tech and we were able to get out of the hospital pretty quickly. A few days later we had his appointment. The x-rays looked good and they could tell the patch was still in place and doing its' job! We got to see Kristen, who has been with us since Kyler's birth in surgery clinic and we learned at that appointment that it was his last one with them unless something comes up in the future. It's been kinda emotional for us lately with losing our ICD team due to aging out and now surgery clinic, it feels like in the span of about two weeks we have lost two teams of amazing people who have been with Kyler since birth/coming home. We know it's a good thing. He is growing, he achieving, he is healthy, and those are all amazing things but we have really connected with all of these people who have played a major role in getting him to where he is now. May 18, 2020- Today Kyler is 3 years old. He is sweet, hilarious, kind, smart, energetic, loving, happy, stubborn, and an all around amazing kid. He had is 3 year old check up today and is weighing in at 24.75 lbs and standing 2.78' tall. Both of those numbers place him in the <3rd%ile for weight and height but there is some good news! His BMI is in the 23rd%ile!! I am ecstatic to hear that he is somewhere other than the <3rd%ile for anything on a growth chart and I know how silly that sounds! His check up was good, although unusual as the power went out while we were there, and he didn't have any shots this time around. He is in that really fun stage where he has favorites, is doing things on his own, wanting to make his own choices, and really trying hard to keep up with bubba and sissy. His favorite TV show is Mickey Mouse Club House. He names all the characters, yells "Oh Toooooodddllessss", and giggles so hard when Willie the Giant burps. He loves cars and trucks and like to count how many he sees on our road. He like to tell us "hold on" or "2 minutes" when we ask him to do something. He is working on potty training, he will go when we ask him to but doesn't do it on his own unless he is trying to delay going to bed. In that case, he says he has to poop and tries to sit on his potty as long as he can! He loves to help. He helps unload the dishwasher, he helps get things for others, and just about anything that he can do to help out he thinks is pretty cool. He is now sleeping on the bottom bunk of the bunk beds and his toddler bed is going away. He is starting to identify some letters and can count to 11! He has been doing this thing where he pretends he can't see something and exaggerates his looking for whatever it is. Jaida was "hiding" (he covered her with two small pillows) and Kyler was "trying" to find her. He walked all over the living room "looking" for her in places like under a lego, and his rocking chair, in the trash can, and all sort of places and each time with a sly little grin he says "not there"! Another funny thing he says is "on it mom" when I ask him to do something, it cracks me up every time! He loves playing Power Rangers with Gunner and will tell everyone what color they are and then run around hi-ya-ing everyone! For his birthday we asked him what he wanted and he said "ramen noodles and cake"! Well he got spaghetti and cookie cake with Mickey Mouse on the top! Also a favorite right now is dancing and boy does he have some great moves! Happy 3rd Birthday Kyler, We love you sooooo much!
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!
"The harder the struggle, the sweeter the triumph" I saw this quote and it screams Kyler to me. He has faced so many struggles and overcame them time and time again. It has been a few months since the last update and so many things have happened so I am going to try by best to hit everything! In February, Kyler's tubes were placed and then a couple weeks later, he had a check up with a hearing test. He passed with normal hearing in both ears! Yay! Then around early March Kyler's belly button was draining and looking infected. After sending off some pictures and having him seen, we put him on an antibiotic and within a week or so, it was looking much better and healing. Since getting his tubes, Kyler has been working really hard at attempting more sounds and getting clearer in saying familiar names(like Jaida). He is currently working on putting two sounds together to start saying more parts of words. The tubes have made a big difference in Kyler's speech and his walking and movement. He is now walking pretty steadily over many different surfaces, climbing ladders, and running. It is the cutest run I think I have ever seen! He throws his hands back and then pumps them back and forth with the biggest grin on his face! He also mastered standing up from the middle of the floor and then quickly moved to mastering standing up without touching anything! He is so active and just on the go now! He loves taking walks around the block or playing outside on the play-set with his brother and sister! Kyler has been doing awesome with his oral eating skills. He is eating all kinds of food that are age appropriate and even ate some raw carrots the other day! He is a typical toddler in the sense that he has certain preferences for foods that change day to day or mood to mood but he loves eating what everyone else at the table is eating. He is constantly asking for food(or going and grabbing a snack from the drawer) and has really developed a desire for food which I am so extremely thankful for! He is drinking milk and water primarily and doesn't care for juice at this point. I am sure there are many things that he is doing that I have forgotten to mention but that leads into the next part. At some point in the last few months we had been given a suggestion to look for growth charts specific to Kyler's genetic mutation. Since then I have been searching and looking for anything. What I ended up finding was not exactly what I was looking for but close. I started with what I know about Kyler which is that Kyler's mutation is at gene location 22Q11.2.3. After searching and coming up with nothing about Kyler's specific gene mutation or CDH I found something that seemed close.There is a syndrome called 22Q deletion that is at location 22Q11.2 and they have growth charts for that syndrome. I was excited but also trying to reign in my excitement because I know that it is not the same thing as Kyler but it was something. After finding those charts I started plotting Kyler and he was at least on those charts(something this mama was excited to see). I also have realized that I won't find charts that will match Kyler's unique situation. There are only 32 documented cases of his specific gene mutation and only 5 of those(including Kyler) have CDH on top of it! So I have been kinda holding on to the 22Q11 Deletion Syndrome as some sort of chart to compare Kyler to. Now I just had to wait for our appointment with Special Care. While waiting for Kyler's April check up with Special Care Clinic, we have been keeping busy with everyday life. We have been enjoying time with family, Jaida started ball, playing outside, and just staying busy. With April came international CDH Awareness day and we donned our CDH shirts for Kyler and we loved seeing others spreading awareness with their shirts or wearing teal! Appointment day finally arrived and we headed to KC. This appointment was scheduled to include developmental testing and would be longer than normal. We ended up making good time and stopped at Crown Center for lunch before heading to the hospital. As we were pulling in the parking garage I received a phone call from Children's Mercy. Unfortunately there is not very strong cell service(if any) in most parts of the garage and so the call was cutting out but what pieces I heard made it sound like they were cancelling our appointment because we had cancelled the hearing test portion. We had canceled that part because he had had his hearing tested after getting tubes and received a clear report, we had also asked the ENT office to send that report to CMH. Well with the terrible signal, the conversation wasn't going well and we just hurried up to talk in person(after I had to run back to the car for my ID since I was distracted while trying to get into the hospital). Once up there we found out they were just making sure we were coming since we had cancelled the hearing portion and they also said they were running behind due to a translation issue. As we were waiting a familiar face came into the waiting room. It was Robin who was Kyler's Palliative Care Person when he was in the NICU. It was nice to see her and we got to visit and catch up with her for a bit which was nice! Kyler ran over and gave her a big hug which just made her day(she had been having a rough day). We got called back to the window and found out it was going to be some time still so they told us we could go grab lunch. Since we had already eaten and we had some time, we decided to go visit our friends up on the 3rd floor in the Fetal Health Center. On the 3rd floor Kyler was pretty interested in their toys, especially the big car tower. Our care coordinator and one of the ultrasound techs came out to visit and had said they were having a rough day so they were glad to see Kyler! We had a nice visit with them and even though Kyler wasn't as interested in visiting as he was playing with the cool car toys, he still gave them some sweet hugs! We wandered back down to the Special Care Clinic waiting room where Kyler played for a bit more. Finally it was time to go back. The first part was for the developmental testing and meeting with the Special Care team would follow. We got taken to a room that had a small table for Kyler and the psychometrist to sit at and another table next to it for Mike and I to sit at. On the table was a Social-Emotional and Adaptive Behavior Questionnaire (Bayley was the name of the test) for us to fill out while the psychometrist did tasks with Kyler. We did not have to do the social-emotional portion and focused on the Adaptive Behavior section. That was difficult for me to fill out(I may have been making it harder than it needed to be) because the options were each line were "Is not able", "Never when needed" , "Sometimes when needed", "Always when needed" and then a box to "check if you guessed". I struggled because he's going on two and has a mind of his own so things are very dependent on wether he wants to, not when he needs to. Also I feel like there is an area between "sometimes" and "always" that wasn't an option! I also do not like saying "is not able" to do task. Anyways, we made it through all 250ish items on the questionnaire. Kyler was AMAZING! He sat there for the hour and half and attempted EVERY task she asked him to do! It was seriously just mind blowing(for real, coming from a teacher that has to work to get kids to sit and focus for 2o minutes at a time!), he just worked so hard for her! A couple times he even had his little tongue sticking out like he was thinking real hard! After her portion we had just a little bit of time where she compiled the results and a psychology doctor came in and asked a few additional questions about Kyler. Leading up to this appointment, I have felt that Kyler's development was right on track, except maybe with speech. It wasn't much longer and the psychometrist came back in with the results. She started out showing us a bell curve and said that Kyler landed in the 95th, 100th, and 106th range for his skill areas. I am familiar with bell curves since I deal with them for work and I was instantly relieved! She went on to explain how anywhere between 85-115 is considered average which means that Kyler's cognitive, language, and motor skills are all within the average range! I was a little surprised his language was in that range because I thought that would be an area that came out low but his speech is only a portion of his language skill. He has good receptive language and he is able to express his wants and needs fairly well too! I was very excited to hear his results. I have felt like he was doing well but with everything he's been through, it wouldn't have been too big of a shock to find out that he had some areas that were areas of concern. Also I sometimes second guess myself in assessing my own child's abilities and worry that I am giving him more credit than he needs. Next we were taken down the hall to get his measurements(height, weight, oxygen saturation, temperature, and heart rate). He weighed in at 19.4 lbs placing him at the less than 3rd percentile for age. He gained 5.2 gm/day with his goal being of 7 gm/day. His oxygen and other stats were good! We then moved into the room across the hall to wait on the team to arrive. Kim(care coordinator) came in first and did a few tasks with Kyler for her assessment and then Kristen(surgery APN) came in, lastly followed by a neonatologist who was new to us. I was disappointed that Dr. Kuhmor who has been following Kyler the whole time wasn't there but it is what it is. We began discussing Kyler and of course his weight came up. I must have had a look on my face because Mike hit my knee quietly as a signal to calm down! They were talking about how he hadn't met his goal of weight gain and was in the less than 3rd percentile(close to 2nd percentile). That is when I brought up looking at other growth charts for one that is more appropriate for him. They listened to what we had to say and then I explained that I wanted to remove the g-tube. They were a little hesitant but after the neonatologist weighed in, they basically said it was our right as the parents. We also shared about how it had fallen out one day and I reluctantly put it back in, the surgery gal said she was surprised I did! I ended up asking if his growth hormone had ever been checked as a reason his doesn't put on weight easily(I personally feel like he isn't gaining weight because he is so active and that combination with burning extra calories just breathing, makes it extremely hard to put extra weight on). They said that it hadn't been checked but they could schedule us with endocrinology to have it checked and that is part of the work up for Failure To Thrive. I am 100% not okay calling him Failure To Thrive because his only area of concern is weight and that feels like such an inappropriate label considering he is thriving in every other way. We discussed adding tube feedings back in(we hadn't done one since Jan.) but we shared our concern of it making him vomit again, and making him eat less orally. Then they asked if we were planning on attending the GI Feeding clinic the next month. We said we were and they just wanted to make sure since we were wanting the tube removed. They left and came back in with the supplies to remove the tube and bandage Kyler up. Before they took it out, they felt like they needed to warn us what GI's reaction might be when we showed up in a month with no tube and still little weight gain. We were told in a round about way that GI might consider it neglect to remove the tube with him not gaining weight. This upset me. After taking a couple minuted to contemplate it, we decided we could leave it in for another month until we meet with GI and go from there. They reassured us that it was our right as parents and we then talked about what else we could try between now and our appointment with GI. We talked about trying something different than Nourish through the tube overnight like Pedisure. We said that we would give that a try but first we would try getting him to drink it in place of milk since he was now drinking milk. In the end the tube stayed in by Kyler graduated from the NEON Special Care Clinic. He will now be followed yearly or as needed in the surgery clinic for his CDH. With that we were talked to about a possible surgery Kyler may need as he hits puberty. This surgery is to correct the pectus excavatum that Kyler has. We were told that 50% of people with it end up having surgery(with how pronounced his is, I would be shocked if he didn't need it). There are two reasons for the surgery and the 1st is that as the body grows it puts more pressure on the lungs and makes it hard to breath. Obviously with Kyler's history, this would not be good. The second reason is that people become very self conscious about how it looks. They started explaining how just recently they have advanced the way they do the surgery and it is way less painful than it has been in the past. It involves placing a steel bar in the chest to push the bones out as they grow. In the past it was a week long hospital stay and lots of pain. Now they are able to numb the nerve endings in the chest which will stay numb for 2-3 months and it only requires an overnight hospital stay. It was kinda strange that it was brought up in this appointment when just the week or so before this surgery was displayed on Children Mercy's new show "Inside Pediatrics" and I had watched it wondering if that would be something Kyler might need. We took some pictures with Kyler's team and we were done for the day. I was disappointed we didn't take the g-tube out but okay knowing it doesn't mean it will never come out. A couple days later, Gunner was in pain crying about his ear hurting but it wasn't draining. Saturday it was still bothering him and now had some drainage and I feared it had ruptured. We made a visit to urgent care where they said his ear drum hadn't but it was cloudy in his ear drum. We were prescribed some ear drops and antibiotic. By the afternoon, Gunner had started running a fever and was sleeping. Then Jaida threw up. Not the best weekend so far. The rest of the weekend was pretty uneventful as Jaida wasn't running a fever still and Gunner was still not feeling the best. Monday rolled around and Gunner stayed home from school since his fever was still present Sunday evening and I headed to work. As I drove to work, I had to stop myself from getting sick while driving. I made quick plans and left to go home, something had gotten to me now. I spend the entire day asleep on Monday and whatever it was passed. On Tuesday Mike took Gunner with him for his ENT appointment and we found out that his ear drum did rupture and there was an infection on the other side. Luckily we already had him on the medicine so we were told to stop the drops and keep the antibiotic going. They also gave him ear plugs that he has to wear while showering, swimming, or anything else that could get water in his ears. Sometime late Monday night or on Tuesday, Kyler started feeling off and he began running a fever now. I had him sleeping in his slanted sleeper on the floor next to my bed and he woke up coughing up mucus and junk. As I went to clean him up he felt extremely hot and wasn't really moving around much. I found the temporal thermometer and took his temp. It read 104! I took it again thinking that couldn't be right and it was 103. I took it a third time and it was 103. I started to get concerned. I went to get the ibuprofen and Kyler's g-tube medicine connector so I could get the medicine in right away(Kyler has been good about taking his medicine but I did not want to chance him refusing to drink it). I got the medicine in him followed by a couple mils of water and he immediately threw up. Now I am really concerned because I don't know how much medicine stayed in him and I was afraid to give him any more medicine. So we start deciding what to do and decided to take him to the ER(the only place open) and let them check him over and see. As I was getting dressed and ready I took his temperature rectally and it was reading 102.8 but I still am worried about not being able to give him meds. Mike called my sister who was going to come over and stay with the kids and I panicked a little and told Mike to meet me at the ER because I wanted to get Kyler there ASAP. Kyler and I got to the ER and didn't have to wait to get checked in. After they asked if he had a medical history and I informed them it should be in their system(not our first rodeo at this ER) they got vitals. Their thermometer was reading 101 rectally(I feel like they thought I was making it up) and his oxygen and other vitals were fine. They started to take us back to a room just as Mike was walking in the door. They ended up giving him Tylenol(which he drank) and took a chest x-ray just to make sure his lungs were clear of infection and after he kept some water down, they sent us home. Of course, in true Kyler fashion, he was being social and didn't look like he wasn't feeling well the whole time we were there. For the next 4 days he ran a consistent fever, was coughing, vomiting, and just feeling bad. He treated the fever with ibuprofen and Tylenol rotations and gave him breathing treatments to help. In those 4 days, he didn't eat much and when we took him to see the pediatrician as a follow up, he had lost 2 pounds. He started to feel better and we ended up giving him some overnight feeds of Pediasure(which thankfully he kept down). Since then his eating picked back up and he was playing and acting normal but he has continued to run fevers off and on since then. The fevers have been low grade but have hit 101 a couple times. After being seen again(after 2 weeks of these fevers, and me thinking he had thrush) it was determined that it was some kind of virus and he is also teething(2 year molars). Teething always hits him so hard so that seems like a good explanation for this off and on fever business. We had stopped the overnight Pediasure feeds once he was back to eating normally. One thing we noticed is that when he is drinking pediasure(which he doesn't prefer) is that he doesn't drink as much as he would with regular whole milk and he doesn't eat as much food. I think he has a fullness level that does not match up with what the doctors want him to eat and when we force in those extra calories he doesn't eat because he isn't needing them. So now we have just over another week before we head to see GI and with him needing the tube when he was sick, I know that we will not be taking it out then. I do not think our appointment with GI is going to be a pleasant one because I think they will tell us he's not getting enough calories and we need to push them into him with the tube just to hit that magic number they have. I am going to be reaching out to some other families of kids with g-tubes and see if they have any information or advice for us before we go in there and we will just see what happens. I hope when we go, they will be happy with the variety of textures and foods that he is eating, and that he has a happy relationship with food but I think they will probably just see his percentiles and not be happy with all the great things he is doing. I found Jaida's well child papers from when she was 18months and 2 years that show she was in the 5th and 7th%ile in weight as completely healthy child with no medical history and hope that they will finally listen that him being small is just part of his genetics! So finally to today. 17520 Hours. 730 Days . 104 Weeks. 24 Months. Today Kyler turned 2 years old. It has been simultaneously the longest and fastest 2 years ever. This time 2 years ago I was staring at my baby boy only able to touch, not hold, him. Wondering if he would live through the night but having faith that God was with us and him. Today our little warrior, our miracle boy, is running around chasing after his brother and sister. He is so sweet and loves to give people hugs. He is eating all sorts of things but has a special liking for Cheeto Puffs. He is sassy and tells on his siblings when they cross him(its pretty funny to watch). He is saying Jaida, Bubba(Gunner), Mom, Dada, grandma, ball, car, and making lots of sounds during speech. He loves cars and balls and can even catch a ball thrown gently to him! He loves waving to cars he sees driving by. He is so active. He loves going for walks and being outside. He is climbing all sorts of things and just today climbed onto the basement couch by himself, he was so proud of himself. He is opinionated and likes to tell you no with a head shake when he doesn't want what you're offering. He will put his hand to his chest and say "mine". He will stomp his foot and look the other way when you tell him no! He puts a smile on everyones face he encounters. He also loves dancing and being silly. He is so loved. Happy 2nd Birthday Kyler Joseph! We love you, Mom & Dad!
January was a little bit of a hectic month for us! We heard back from the ENT and they were not able to coordinate Kyler's tubes with his surgery at Children's Mercy without pushing back his orchiopexy surgery a few months. This was because CMH would have needed to see and evaluate Kyler for hearing and wouldn't be able to just take the records from another place. We didn't want to wait that long so we decided to move forward the scheduled surgery and get the tubes scheduled separately through the Hutch ENT Clinic. Kyler was scheduled for February 5th to have tubes placed. The plans got changed. We had plans to go to KC on the 23rd for Special Care team and Pre-Op appointment with surgery following on the 24th when I got a call from the hospital verifying some information. During that phone call I was told of his upcoming appointments and they were not what I had down. I was told Special Care team was on the 23rd but surgery was scheduled for the 31st. I informed the lady calling that those dates were incorrect and we would be coming on the 23rd and 24th so that the days were back to back due to us traveling to them. She was unsure what was going on but transferred me to the Surgery Clinic to get it straightened out. In the meantime I was panicking slightly because I had already arranged for a sub for the 23rd -24th and wasn't sure if I was going to have to take off any more days now(I am running out of sick leave very quickly). After connecting with Surgery Clinic, I explained to them that those dates were not what we were told and had planned on. I think they were surprised to hear from me that quickly because they had just changed the surgery date in their system. What I learned was the Surgeon was going out of town on the 23rd/24th and the had to move Kyler's surgery to the 31st. They hadn't called up to let us know because they were still in the process of trying to coordinate with Special Care so that we could seem them the day before the new surgery date instead of the 23rd. So after finding out that his surgery was pushed back and now less than a full week from when he was scheduled to get tubes, I had to call the ENT office and talk with them. After discussing the new dates with them, they wanted to push his tubes back another week as well so his new tubes date is February 12th. Now it was just the waiting game. In the meantime we had our reassessment with the TA Waiver and Kyler continued to qualify(this is was provides his home health nursing) but I think he will lose that coverage in the next month or so since he was doing well with orally eating before getting sick in December. We are weary of how he will do with two upcoming surgeries that aren't too far apart. We also still haven't gotten doctor approval with his oral feeds. So we will be reevaluating this in the next month or two. I am pretty anxious about losing this coverage and our home nursing. His G-Tube is what mainly qualifies him but its his lungs that make the home health nursing so needed for him. When he loses coverage, we will have to decide if we can put him in daycare where he will be exposed to all sorts of illness from other kids that could put his lungs at risk or figure out a way to keep him home. With Mike working nights, we could maybe make it work but it would mean Mike would be unable to get anywhere close to enough sleep each day. One other option we are going to have to look into is possibly paying out of pocket for home nursing. Another downside to losing his coverage is losing Kyler's amazing nurse Kalisha. He loves her and she just feels like another family member to us. Jaida and Gunner both started basketball. Jaida is playing on a team that has games every Saturday and Gunner is doing a parent and me type of camp to learn basic skills. Kyler has been enjoying getting to explore the court area during Jaida's practices. With Kyler still not walking independently, Shayla brought back the walker for him to use. It really seemed like he lost all confidence he had in himself and walking after that hip inflammation. Luckily he started to get some of his confidence back. After a visit to Great Grandpa(Kyler's favorite walking buddy), Kyler was walking all over Grandpa's house holding his finger but doing most of the work himself! The next evening at Jaida's practice, we took the walker and Gunner got to to chase him all over the court. He was wheelin' and dealin' all over the spare court and boy was he pretty proud of himself! There were times it was like he was moving faster than I think I had ever seen him go! He also got quite a few comments how adorable he is(how can you not love a little dude in glasses and a fancy walker!) and he was loving checking out anywhere he could get to. All of that must have been just what he needed and after getting home and beginning to get ready for bed, he decided he was ready to walk again! He started by leaning on the couch and then walked to me! I cannot describe how happy I was that he was walking again, it had been 47 days since his him issue. The next week brought two days of complete madness at work before heading to KC for surgery. I don't get overwhelmed very often but I was feeling so overwhelmed that I could feel tears just pushing to flow. I had my sub lined up and she is amazing but I am not someone who likes to be gone from work and being gone for a single day stresses me out, let alone two days in a row. Then to add to my stress, CMH called to confirm details and review pre-surgery instructions and I was told they were planning on him staying inpatient overnight after the surgery. WHAT!? We hadn't been told that in any of the other conversations and now I needed to make plans to be gone for 3 days(home and work). I ended up getting things all together(after an evening stop to my classroom after Gunner's ball practice) and felt better. I cannot even begin to tell you how thankful I am for the amazing paraprofessionals I have in my classroom, I know that they can keep the classroom running in my absence and are pros about being flexible! Back at home I still had to pack for Kyler and I. Unfortunately I was so mentally exhausted from the high level of stress I was feeling, I just needed to crash. I threw together a handful of the easy to pack things in addition to the stuff Kyler's nurse put together then I set my alarm early and was out! After a quick packing spree in the morning, we dropped the big kids off at their schools and hit the road. We got to hospital and had a little bit of time to kill before his first appointment so we took a ride up to the 3rd floor to see our friends in the Fetal Health Center. They were all in a meeting when we got there so we told the receptionist that we would try again later. We took Kyler to the hospital library to play, this was one of Jaida and Gunner's favorite places to go when Kyler was still in the NICU and now Kyler is big enough to enjoy it! After a little while in there and Kyler making some new friends, we went to the cafeteria to feed him. Appointment time. We headed to the 2nd floor for Special Care and got checked in. We didn't have a very long wait and were taken back to get vitals. Kyler was less than thrilled to have the oxygen sensor wrapped around his toe and it took a bit to get a reading but it was reading 98%. He was weighed and measured, then we were taken to an exam room. A nurse we were unfamiliar with came in and shared that our normal coordinator was not there that day and she started doing updates for medicines, issues, etc. Eventually Dr. Khmour(neonatologist) came in and explained that surgery nurse practitioner was caught in surgery clinic and couldn't get away, and the pulmonologist wasn't there either. So our normal team was now down to one. We reviewed with him what has been going on with Kyler lately and Kyler was busy moving all over the room playing with as much as he could. He even went over to the doctor and raised his arms up so the doctor would pick him up and hold him. Turns out he wanted to mess with the computer he was typing on but he didn't get to do that! There wasn't much we needed to talk about, Kyler is maintaining well off oxygen and we shared how he has been eating orally(as long as he isn't sick) and is finally drinking some milk instead of just water. Dr. Khmour brought up his weight. This is becoming more and more of a sensitive subject for me. Kyler is small, always has been and I don't see that changing. Khmour mentioned adding in one tube feeding per day to help him gain weight because as of the 23rd, Kyler's weight has plateaued a bit. This is where I get really frustrated. We had already discussed how we did put him back on a tube feedings some when he got sick in December with that bug for a week and during that time he lost close to a pound. He had started to gain it back and then he started teething(remember how hard this always hits him) which was making him eat less than normal. After going back and forth a bit(I'm sure I sound as much like a broken record and I think they do) we told him that we wanted to give Kyler another month or so and see how he does after his surgeries and such and then we would look at supplementing with a tube feeding. We are going to try adding in more calories to his oral foods to beef up those calorie counts and we will reassess in a month or so. After that appointment, we headed to the PAT appointment for pre-op assessment. In there they retook some vitals and checked him over. They noticed his nose was draining pretty steadily and asked about it. It had all been clear and I shared that he was teething. His oxygen was at 100%, his lungs sounded clear, and he appeared healthy except for the drainage but they had to call for an anesthesia doctor to lay eyes on him to clear him for surgery in the morning. After talking with us and seeing Kyler, he felt that it was safe for Kyler to proceed with the surgery. Now that his appointments were finished, we headed back to the 3rd floor to see if they were ready for a visitor. Up on the 3rd floor, it was pretty empty. We could hear voices but couldn't see anyone so we decided to wait just a couple minutes before leaving. Right before we were going to leave we saw the social worker who was assigned to us. She quickly said hello, shared that they were all in a meeting(possibly the same one from earlier) but they would be finishing up shortly. She then hurried off to grab something before returning. Kyler was enjoying himself in the toy area so we waited. Just a short time later the doors opened and many familiar faces came out. They were very excited to see Kyler and Kyler had no trouble showing off for them! Alisha and Dana are two of our favorites up there and we got to see them both! They both shared that they had just been in a tough meeting and seeing Kyler was perfect timing! Then out came Dr. Bennett(my favorite of the OBGYNS we had up there) and Kyler walked right over to him and wanted to be held! Then when Kyler got back down he started walking with Dr. Bennett down the hall and then walked to another doctor coming towards him. Kyler is a pretty social kid and just makes people around him smile. Kyler noticed the nurses and staff going in a room and coming out with food and ended up getting a surprise slice of pizza from his buddy Dana! He devoured that slice right to the crust and loved every bite of it! It was time to say good byes and we headed out of the hospital! We got checked in at the Ronald McDonald House(Cherry Street that has been renamed Bernstein House) and I laid down with Kyler for a short nap before heading out to meet my friend for dinner. Turns out that nap didn't help me and I woke up feeling dizzy like I was experiencing a vertigo episode all of a sudden. I continued to feel dizzy and nauseous through the drive to dinner, while sitting at the table, and even worse on the way back. I felt terrible about being a lousy dinner participant(I had to prop my head up with my hand to feel steady enough) and physically not good. The dizziness won as soon as I stepped out of the car back at the house. I proceeded to climb in bed and not move until the next morning. Surgery Day. We got up early and headed over to the hospital to get checked in. I was feeling better but not yet 100%. We got checked in with security and made our way to same day surgery where the waiting room was pretty full. After a short wait we were called back to a room. Once back there, they checked his vitals which looked good and we waited to talk with Dr. Snyder and the anesthesiologist. Dr. Snyder came in and reviewed what surgery we were doing and I asked about doing the biopsy. He said they would see if there was enough tissue available to do. After the anesthesiologist came in, we had just a short while more to wait until they took Kyler back. At 8:30 a nurse who would be with Kyler throughout the surgery and Kyler went right to her. Mike and I were then sent to the surgery waiting area where we were given a buzzer. The buzzer would light up and buzz when they had news about Kyler. Mike went to get us up some food from the cafeteria while I waited in the room(one person has to stay in the waiting room at all times). At 9:30 they called our buzzer number(they didn't activate it). They let us know that he was out of surgery and Dr. Snyder would be down to talk with us soon. We met with Dr. Snyder in a little room and he told us the surgery went well and Kyler did well. They were able to successfully complete the orchiopexy. The testicle was still streaky in shape and once in there, they discovered that there is a thin transparent layer of tissue holding the vas deferens to the testicle. He said there may be microscopic tunnels running through the tissue but we will not know until Kyler is older.We went back to the waiting area to wait until Kyler woke up from the anesthesia. A short time later, we were asked to take a call in the private room. It was the nurse who was with him in recovery. He said that Kyler was starting to wake up and he asked about him staying the night in a room. We shared that we were not sure but it had been mentioned but the nurse said he thought Kyler would be fine going home. He was on room air(not needing any oxygen) and was doing fine. So we thought that was fine. We went back to the waiting area for a while to give Kyler a little more time to wake up. Around 10:30 they called us up again, this time to tell us to head to Reunion Ave upstairs to meet Kyler. Once we got up there he wasn't in the hallway like normal(crazy we have a normal huh!) and then a nurse came out and took us back to the bedside. Kyler was still working on waking up and I got to hold him. Once we knew he was starting to wake up more and that we would be going home, Mike headed to go pack up our things back at the Ronald McDonald House. Well just after Mike had left the beside, the nurse started taking his sensors off and they got final approval for release. It was time to take Kyler home. I called Mike and he hadn't left yet since he had stopped to pick up Kyler's medicine from the pharmacy so the nurse walked me and Kyler down to the lobby to meet Mike. We loaded up in the van, Kyler still extremely sleepy, and settled into his carseat. We headed back to the house and Mike went in to pack up our things and check us out. We hit the road and headed home. I sat in the back and slept the whole way home. I do not know when we will get the results of the biopsy so if we haven't heard anything in a few weeks, I will call and see if I can find out if they have heard. Since the surgery, Kyler has been healing well and walking around. Unfortunately he started running a low grade fever with a runny nose and cough. I think part of it is from him teething and his fever broke but he still has a runny nose and cough. He has been getting breathing treatments that seem to help, he will crawl over excitedly to get it when we show him the mask. After a few more days of breathing treatments, he started to have less drainage and cough. We had a couple days to wait until it was time to get his tubes placed. Monday evening while changing his diaper I noticed his incision on his scrotum was missing the stitches and looked open. It was open but wasn't bleeding or oozing anything but I figured to ask the doctor doing his tubes if they could stitch it back up while he was under for his tubes. Tuesday morning we had to be up around 5:20 to get ready to head to McPherson to get Kyler's tubes placed. My dad came over to get the big kids to school while I took Kyler(still asleep) to meet Mike at the hospital. When we got to the hospital, we began registration and then their computers stopped working so we had to wait for those to come back up before getting fully checked in. Eventually they ended up making identification bands by hand for him. They took us back and did vitals and we got to speak with doctor Gaeddart. I asked him about long term tubes or regular and we asked for the long term with our family history of tubes(only Jaida hasn't needed them). I also asked him about stitching the incision while he was under. He thought it was too late to stitch it back up but said they would look at it. It took 25 minutes from the time they took him back and when they were done and he was working on waking up. Dr. Gaeddart said he had a lot of fluid in both ears but everything went well. We didn't have to wait but maybe another 5 minutes before they took us back to the room we were in before and then they brought him in. He was a little cranky as he was waking up but he handled it way better than Gunner did after his tubes. Of course he has a lot of experience with anesthesia so it isn't as uncomfortable to him maybe. Within an hour we were loaded up and headed home. Kyler slept the entire way and was still letting some of that grogginess wear off. When we got home we ate some breakfast and then he played and relaxed for a bit. They did not end up doing anything to his incision site so I have been putting antibacterial ointment, butterfly closure strips, and water proof bandaids on it to keep it as clean as possible with it being in the area it is. I would hate to see it get infected from having feces get stuck in it. His nurse met us when we got home so I left him with her and went to pick Gunner up from school and then to run some errands. While we were gone, Kyler took a pretty good nap and shortly after we got home he woke up. He seemed to feel good and was already starting to walk around quite a bit. Since then he has been a walking machine! He is so much more stable and is back to walking more than crawling! I am excited to see how his speech progresses from here. He will go back to the ENT in the first week of March to check on the tubes and have his hearing test redone. Some of the best news I can share is that he is now done with all known surgeries! We are not planning on him needing surgery again! There is always a chance that something will come up but for now we are going to celebrate that! We will be going back to CMH to see his special care team in April and it is going to be a long day where they will do developmental testing. In the meantime, we will be enjoying not having appointments and looming surgeries! Happy New Year! Now begins the time where I forget to put 2019 instead of 2018(like I did with this post!). The last 3-4 weeks have been frustrating, joyous, crazy, and relaxing. Kyler had his hip issue that came up and after a couple days he went to the doctor for a post ER follow up. Nothing new happened there and we continued to wait and watch his hip. Unfortunately that Thursday, he started vomiting. Like 6 times a day again. He could not keep anything but water down and he was a little cranky from wanting to eat but not really being able to. After he had thrown up a few times, I called the doctor and they said he might have caught one of the bugs going around when he went in for his ER follow up. They said they had seen a revolving door with kids who were vomiting and not keeping much down. So we stopped food and just gave him Pedialyte for a bit but he was starving for food. The vomiting got a little better but he was still throwing up after 5 days so we decided to give him some feedings via the tube to get him some calories and to see if he could keep that down. Good news he was able to keep that down pretty well. The following week Kyler still wasn't putting weight on his leg and he still wasn't back to 100% with keeping food down. After a call to the doctor again we found out that the bug was hanging on to kids for a week! I felt so bad for Kyler, here he was facing this hip inflammation issue, then got a bug on top of it that was making him puke, and both were projected to last at least 7 days! Not fun! Luckily the vomiting did stop right around the 7 day mark and by the weekend he was eating mostly normally and seemed to be doing better. That weekend brought our first Christmas celebration and the next few days after that we celebrated as well. It was nice spending time with family and friends! At this time Kyler still was not putting weight on his leg and standing but he had started to crawl on it. It had been two and a half weeks now so I began to get worried that it wasn't better yet. So on the day after Christmas we called the doctor again and we decided to get his an X-Ray of his hip again to see if the fluid had gotten any better. We got in that afternoon and all the fluid had gone which was a good thing. So we began speculating that maybe he was scared to try to put weight on it after what he had felt before. Well within a day, he was starting to stand on it some! We went back to the doctor the next day and got his RSV shot and one of his vaccinations(yay for being done with those until he is 4!) and then we had physical therapy at the pool. We thought that might help since he had just began standing on it again. At the pool, Kyler and I got there a bit early and while we were waiting we got in to play a little. A group of ladies who were there came over and offered Kyler some rubber ducks to play with. Since I like to make him work without him knowing it, I spread the ducks out along the barrier and he stood up and started cruising along the cement barrier! I was super excited! After Shayla got there we did some different games with him and he did some more cruising and even stood unassisted and took a step or two(not knowing we had let go). I was SO relieved. I had been feeling very frustrated by his set back in walking and how long it was taking to get back at it. Friday we got to just hang out and then Saturday the big kids and I went with the cousin crew to Wichita to the Urban Air Trampoline Park. It was a lot of fun and it was great spending time with them all. When we got back we got to see Mike's brother and his family and got to enjoy them for a few days while they stayed with us for their visit. The kids had a BLAST playing with their cousins and we had fun just hanging out with everyone. Kyler was having fun showing off for them and really enjoyed his Uncle Sean! Life has been pretty boring since they headed back home! Today we had Kyler's ENT appointment with a new doctor out of Hutch. We dropped the big kids off with Grandma Colleen and headed to their office in McPhearson. When we got there, I found out I forgot to print off the medical history for Kyler like I had planned on doing. Luckily I have it on a document and I was able to pull it up from my phone so I started copying the information over! Kyler's ICD team(local therapy) had already sent the multiple readings from their ear checks so we just talked to the doctor about why we were there. We explained that he hasn't had infections really but they were constantly reading flat and that his speech was starting to get really delayed. After looking in his ears, he said they looked good but we would have the audiologist check him over and go from there. So we were taken to a different room down the hall and they hooked him up to a machine like ICD uses and it showed some movement(of the ear membrane I think) but not as much as you should see. Then they did a hearing test with another machine and found that he was only hearing 1 of the frequencies(I forgot to ask out of how many). The audiologist said that the sound you get from putting your head underwater is what Kyler is hearing. I mentioned that when Gunner had his test done that he was only hearing around 40% and she said that was close to what Kyler was hearing as well. She thought tubes would be helpful for him. She also took quite a bit of interest in Kyler's genetic mutation and apparently taught a class on genetics somewhere at some point. Said she noticed his wide set eyes right away and thought there was something there. I'm not sure what to think about her completely, she said Mike has the same wide set eyes but not as pronounced but the genetics team said Kyler's is unique from Mike and I's genes so I don't know about that. He definitely looks like a Moran though! She also talked with us about family history of hearing and after hearing about that, thinks she wants to follow Kyler to watch for anything related to the family history of hearing. I didn't mention that KC is following him for that too but I figure eventually KC won't follow him and he will still need to be watched by someone more local. Once we were back in with the ENT, we talked about when to get the tubes done and we shared that he has a surgery coming up at the end of the month. He said we just want to avoid that same week. So we scheduled it for the end of next week. Then the nurse came in wanting to know more information about his Chronic Lung Disease. After explaining that his only has one functioning lung, she said he would need to have the tubes done in a hospital and not in the clinic and we would need to find a different day when that could happen. So we asked about trying to coordinate with Children's Mercy and having them place the tubes when he is up there at the end of the month. We thought it might be better to only have to have him put under once. Also, not that we don't trust the ENT to put him under for the procedure, we both just feel better about the doctors at CMH since they are so familiar with Kyler and his special set of issues. So we sent a message to our team in KC and the ENT's office was going to call them tomorrow and see if they can work it out. If not, then we will most likely wait until after his surgery in KC to do the tubes. After getting home and just snuggling and relaxing, Kyler had a speech session with his new speech therapist Amanda. He is now going to be getting speech every week and then working towards having PT every other week.Since he is needing speech more frequently and his feeding issues have gotten so much better, we switch to a new therapist who had more availability but still has some feeding background for support. Shayla will still see Kyler frequently until he gets back to where he was before the hip inflammation but then his time with her will decrease. The kids and I have a few days left before school starts up again. It has been so nice being home with the kids and just relaxing and I have done a pretty good job of not thinking about or worrying about work much over break. I do plan to get in my classroom and do some organizing and planning that will make me feel better to start back on Monday. Hopefully we will hear back on if the ENT can coordinated with CMH for Kyler's tubes by the end of the week. We hope everyone had a wonderful Christmas and New Year! Kyler's last couple of weeks have been exciting and scary. Kyler had been boycotting walking and decided he was finally ready to walk! It was last weekend and Kyler was walking with sister when she let go of his hand in the middle of the room and he just kept walking! He realized she had let go and he dropped to the floor shortly after that! Next thing we knew, he had crawled over to the couch and used it to stand up. Then he let go, turned around and just started walking! I was so excited that he chose to walk and we were not having to coax him to come to one of us or a favorite toy! Since then, he had been walking pretty frequently! On the 7th Kyler went for a weight check and he had gained .1 of a pound. I was happy with this gain because he has been eating for a month now and he didn't lose weight which is great considering most kids lose weight when weaning to eating fully oral. Well then on Monday I received a message from the GI clinic at CMH. They wanted us to increase his tube feedings by 2 oz per day because he isn't gaining enough. I hadn't talked to them about him not getting any food via the tube yet so that night I wrote back to them(messages are through the online patient portal). I let them know that he had been eating orally for a month and that I wasn't ready to put him back on the tube feedings since he had gained some(even if it was just a small amount). I let them know we would try to get extra snacks in but I wanted to give him another weight or two before going back to tube feedings. I hit send and anticipated they would not be happy with us for cutting his tube feedings since the last time we met, they had said to not cut anymore than 50%. I got a response on Tuesday and was surprised by a positive response. They were glad that he was eating orally and wanted to know how many calories per day he was getting. They also wanted to keep following his weights. Around this time Kyler started getting a little cold and cough. He had a ton of nasal drainage and it was starting to turn yellow. A couple of the nights he was coughing so much and I could hear him breathing from my bedroom! I got a little worried and ended up pulling out his monitors to check on him. After suctioning his nose and not really getting much of anything, his oxygen was reading at 99% so that was great! Kyler seemed to be getting better as the days passed. He stopped coughing, his drainage stopped(and turned clear when it did drip) and he seemed to be in a good mood! Then on Saturday afternoon he was playing and just started screaming out of the blue. I thought he had stepped on a staple in the carpet(we have recently just gotten our floors done) or something like that but I didn't see any marks on him. He was really upset and his cry sounded like a pain cry. I held him and he was grabbing at his leg. He calmed down some in my arms but was still crying as he quickly fell asleep. I assumed he must have just been very tired. I laid him down and he slept for a couple hours. When he woke up he was screaming in pain again. I knew something wasn't right but didn't know what. I changed his diaper and he was shaking in pain when I moved his leg. I started making plans to take him to urgent care. I thought maybe he had somehow fractured his leg, or something. I couldn't think of how he had hurt it, he had been playing quietly, he hadn't fallen, he was fine right up until he started screaming but I knew in my gut something wasn't right. Mike was already at work so he headed back to town to meet me at urgent care, my dad met me there to get the big kids, and we got checked in. Once there, they took x-rays from the hip down after we explained why we were there. The X-rays were sent off campus for reading and the report came back that there were not any fractures or issues with his bones. That was good news but we didn't know what was wrong still. He was presenting fine when he wasn't moving his leg so when you looked at him you couldn't tell there was anything wrong. We were sent home with instructions to give ibuprofen and watch to see if he got better. If he didn't we were to take him to the ER because he might need a MRI or other test done to see what was wrong. We came home and started the ibuprofen and Kyler wasn't doing any better. Eventually I put him to bed and he slept all night. When he woke up in the morning he was trying to sit up and couldn't. He was in pain again. I had a message from his physical therapist that she could come check him out if we wanted(which we did). She came over and looked him over and thought it was something with his hip. She suggested taking him in to be checked since he was clearly in pain. So we made arrangements for the big kids with my sister and mom, and then headed to the ER. Once there we shared the copy of X-rays that Med Express had given us to give them if we needed to go in. The ER ended up taking their own to make sure they had the shots they needed and then the planned for an ultrasound and blood work. Much of the time between the tests, Kyler was fairly calm and wanting to be held. He did not like them putting an IV in or messing with him! While we were waiting for results the doctor came in and said that if he has an infection, the would send us to Wesley because they wouldn’t treat that here. We asked if we could be sent to KC if he had the infection since that’s where his team is. We had a 90 minute to 2 hour wait for the tests’ results. Kyler ended up falling asleep and when the doctor came back in he said it wasn’t looking like he was septic(great news) but he was still waiting on the final results of the blood work. Kyler did have a small pocket of fluid on his hip though and the doctor needed to talk to the orthopedic doctors on what to do. When he came back in he said that the fluid may need to be cultured and the orthopedic doctors here weren’t comfortable doing that and Kyler needed to be at a pediatric hospital. Then he said he had contacted KC and they had a room for him and would keep him overnight for observation and possibly surgery. We weren’t allowed to give him anything to eat or drink incase KC decided to do surgery right away. He asked if we wanted him transported in the ambulance and we chose to drive which he was fine with since Kyler wasn’t in super bad shape. They started gathering documents for us to hand over to KC for a “private” transfer and the nurses took vitals and did some finishing touches before we were sent on our way. We left with copies of their labs and reports and a disc of his ultrasound and X-ray images. After a stop at home to get a bag packed and supplies for a couple day stay, we headed East. The drive there seemingly took forever. I was nervous about Kyler possibly needing the surgery to drain and culture the fluid on his hip, nervous that it was going to turn into an infection and turn septic, and just already exhausted after being in the ER all day. We finally made it to Children's Mercy and got checked in. We were the only ones in the waiting room so we got taken back really quick. After getting vitals taken we were taken to a room and waited. The nurses came in and we shared the files they had sent and they said the would get them to the radiologist and we waiting for a doctor to come in. The doctor came in and tried to move Kyler's legs around to assess him and Kyler was beyond done. He cried anytime they came close to him. Eventually he settled enough they could move him around. That doctor said they would consult with the orthopedic doctor on next steps. The orthopedic doctor came in and said that they looked at the labs and everything and that we would be going home. We were so confused since Salina had said they were keeping him overnight. When we asked the doctor he said he didn't see any reason to keep him since he was only showing 1/5 symptoms of the serious infection they needed to watch for. So now we had to wait for them to verify that was what was going to happen and then get discharged to come back home. We are glad that it wasn't more serious but really frustrated that Salina had sent us to KC and told us they would be keeping him overnight. I don't know what happened or why we were told that but that wasn't what happened. Last night we were pretty upset by the end, confusion, exhaustion, worry, and stress all played apart to being so upset over having to drive to KC for nothing. Another part that added to our frustration was that the doctor that sent us to KC was the one we saw when Kyler was puking up brown stuff at 4 months old and insisted that it was his immunizations causing it, so we didn't have a great first experience with him and now this. That being said, I will drive to KC a hundred times over if it is what is best for Kyler. I have since heard from friends who know how our hospital works and they think perhaps there was miscommunication on terms used and procedures where our hospital thought one thing was happening and the other hospital meant something else. So now we are at home and have to watch for increased pain and a spike in fever. If he spikes a fever we have to take him back because that would be a bigger indication of infection than the fluid on his hip or pain. We are to rotate Ibuprofen and Tylenol to help with pain. The inflammation should resolve on its own within a couple weeks. Kyler was diagnosed with Transient Synovitis which the cause is unknown but usually affects boys 2-8 and usually follows a respiratory virus or viral infection(like the one he had at the beginning of the week). I am hoping that he recovers quickly so this doesn't put a halt to his physical therapy progress since he just started walking. The doctors did tell us that he now has a 20% increase risk of getting this Transient Synovitis each time he gets a cold. So far this morning he hasn't gotten worse and isn't spiking a fever but he is unable to put weight on it still and is now congested again. He is sleeping quite a bit more than his normal but that might be because he can't play like he normally does. Monday's are PT days but we have cancelled his session to give his hip rest and to try and not aggravate it anymore than it needs to be. We will have to see his PCP doctor in a day or two for a check up as well. Thank you all for prayers said for him! Life happened, time flew by, and I am finally getting around to update on our journey. Since school started Kyler has been working of his physical therapy skills and of course the feeding. In physical therapy, he has been working on walking. He was doing well with the cruising and even started taking a couple steps(September 24th)! He ended up getting a walker(September 27th) to get his more upright and help get him used to being up instead of crawling all the time. He likes his walker and even went for a long walk down the block with it on October 11th! Since then he had been walking pretty well with the walker and then he started boycotting walking. He would flat out refuse to walk except for cruising. I started to worry that maybe I was pushing him to walk too hard. After a little over a week of refusing to walk, he finally started walking some with Great Grandpa and now he has slowly been working back up to it. He will do it most often with brother and sister holding his hand but I now letting mom and dad back in the game! In just the last week or so he has started to do a lot of standing and is quite proud of himself(and I am proud of him too!). He is even dancing a little while standing unassisted! This gives me hope that he is getting more comfortable with his body control and can start making progress on his walking. I am so ready for him to get walking so he can keep up with his siblings and cousins. Since he still isn't walking, we are being referred to an ENT to just make sure everything is okay there. His history of having fluid in his ears could be interfering with his walking skills among other things. Today he also got SMOs which stands for Supra Malleolar Orthosis. SMOs are basically ankle and foot orthopedic supports. We are giving these a try to see if they will help with his walking as well. Kyler was not a fan of them initially but did better with them as he wore them more. We will see how he does after a week of using them! Physical Therapy has been rough lately. Kyler has been asserting his independence and has not really wanted to cooperate much during his sessions and is giving Shayla a run for her money! He is a stubborn little dude and has figured out that he doesn't have to do what we are trying to get him to do. We have pulled out as many tricks as we know to get him to do the work and he just won't. Luckily he will do the work on his terms at other times so he is still working on those skills! Feeding has been an interesting set of events these last few months. Labor Day weekend at the lake ended up being a little bit of a catalyst for Kyler, even if we didn't know it at the time. We spent the weekend at the lake like normal. Saturday morning I ended up sleeping in while my mom got up with the kids. The big kids were hungry and got out donuts and other breakfast items from our camp and this prompted Kyler to want some too. He ended up eating powdered donuts with them! After I got up, I checked to see about feeding him and found out he had eaten quite a bit so I chose to skip his morning feeding so that I didn't make him puke from getting too much. The rest of the day and weekend continued and he was eating decently and I was only giving him half a days worth of Nourish through his tube to make up his calories. After seeing how well he did for the weekend I decided to try a little bit of a wean. I had read many stories from other families who have tried weaning or had weaned and the large majority of them had said they never saw their child "take off" until they cut the tube feedings by 50%. Now most of the time you cut 30% and then move 50% next but I figured if the other families didn't see any difference at 30% cut, why not jump right to 50% and see what happened. We had two weeks until our appointment in KC with feeding clinic and I thought that would be a good trail time to see how he handled it. So I instructed his nurse to only give him 80mL instead of the 165mL of Nourish he had been getting. Kyler was doing pretty well with it! I was excited! Next up was our appointment. I had already made up my mind that we were going to keep doing the 50% cut and I wasn't going to let them tell us to put him back on full tube feedings. Mike thinks I am crazy sometimes(and sometimes I feel like I am!) but I like to be proactive instead of waiting every 3-4 months for them to "let us" change something. Anyways, we get to KC for his appointment and had a cooler full of food ready to feed him. We purposely held his feeding to make sure he was hungry and ready to eat. After talking with the feeding team for a few minutes, I asked if I could start feeding him so that he wouldn't get too cranky and not want to eat. He ate, and ate, and ate! He ate a variety of textures(Alfredo noodles, goldfish crackers, cheese, cookies) and he even took some drinks from the 360 cup. I shared with them about quitting his weekly feeding therapy's in Manhattan and that we had just been working with him at home. They were impressed with him and said he was a completely different kid from what they saw at our previous appointment. After they left the room to discuss what they saw and type up their recommendations, Kyler kept eating! He ended up eating around 300 calories! If he was getting a tube feed, he would have only gotten 220 calories! When the team came back in they said they were glad that the cut worked for him but it doesn't normally work like that. They were okay with us keeping him at 50% cut as long as he was still getting around 880 calories per day but they didn't want us cutting it anymore and we needed to do a weight check in a couple weeks. While in KC we also had a surgery check up which went well with no concerns and we scheduled his 2nd part of the surgery from July(to bring down his testicle). A little before his weight check, I noticed he wasn't eating as much so I upped his tube feeding back to 100mL. At his weight check he had lost between 1/2 and 3/4 of a pound. So we kept his feeds at 100mL and continued trying to get him to eat more orally. He started drinking a lot more from the cup but would only drink water. Sometimes exciting things happen when you least expect them. On November 3rd we realized at dinner time, that Kyler hadn't needed any tube feeding at all and had eaten all of his calories for the day! It was exciting but we didn't know that it was the start of something great. The next day he ate all of his calories again, and then the next day. He was still needing water through his tube to get his water amounts for the day but I was so excited about his eating! After a week I was giddy and afraid to say anything and jinx it. He seemed to be doing well, some days he would eat slightly less and others he would eat more than enough. He started having some trouble with stooling and we started putting juice and extra water through his tube to loosen up his stools. We are now on THREE WEEKS of eating orally! We are still using the tube for fluids and meds but I am so very excited about the food part! We are adding extra calories to his foods in the form of coconut oil to get him the good healthy fats he needs for brain growth since he mainly drinks water. He has begun to drink some milk but typically only if it is with cookies or a ding dong! I am hoping I didn't just jinx him by talking about how well he is doing but I just couldn't hold it in any longer! He is going to get a weight check this week and I am anxious to see what his weight is now. I am hoping that he has at least maintained his weight and not lost any. If he has lost any, we will have to start adding some tube feeds back in again. I also haven't talked to his feeding team or CDH team at this point. I am really wanting to make sure it isn't a fluke before updating them. What I do know is that they won't remove the tube until he gets through illness and shows he can continue to eat and drink enough during that. I am cautiously optimistic that if he continues to do well, that perhaps he can have the tube removed this spring or summer! I am looking forward to the January appointment for his ears. Kyler's speech hasn't really been progressing and though he seems to understand things, he isn't using words very well. He does a lot of vocalizing with yells and some approximated sounds and I know what he is wanting but not everyone can understand his grunts. The last 4-5 times his ears have been checked, have shown that he has fluid in his ears and we need to rule out that he is able to hear and determine if he needs tubes. One of his anomalies is that he has ear pits on both ears, one of them will leak fluid when you press around it. I don't want Kyler to have to have another surgery but part of me hopes he isn't hearing well and needs tubes. I only want this because it would explain why his language isn't developing. If that isn't why, I am not sure what is the problem. It's a strange world being a medical child's mom. A world in which you hope things are the problem instead of hoping they don't have that problem(the lesser of two evils type of thing). In other news, we got to attend a NICU Reunion hosted by Children's Mercy at the KC zoo the weekend before Halloween. We saw a couple familiar faces, one of which was his OT while in the NICU. She remembered him(hard to forget those big blue eyes) and we had quick chat to catch up. There were a lot of people there and after eating, the kids got to trick or treat around the zoo. We skipped most of the candy booths(lines were CRAZY long) and just enjoyed our walk around the zoo checking out the animals. We didn't get get through the whole zoo so we will be making another trip back when the weather is better! The kids were dressed up at Violet(Jaida), Dash(Gunner) and Jack Jack(Kyler) from The Incredibles and they sure looked good! Kyler had a mohawk and all! Kyler has been really fun to interact with lately. He is doing silly things to get laughs and is trying to keep up with his siblings more and more. He is still sleeping well and is able to put himself to sleep when we lay him in the crib awake! He is a drool monster and I don't say that lightly! He will sometimes soak through a couple shirts a day! I can't see any other teeth coming in but I can't check easily either! Once a finger goes it, he starts biting! Both Jaida and Gunner had school performances in the last month and Kyler enjoyed watching them sing and dance! They both did great and make us proud! We enjoyed Thanksgiving spent with family and then an extra day home thanks to the snow. Kyler didn't get to play in the snow but Jaida and Gunner made it fun for him from the other side of the glass! He was loving watch them play from the comfortable inside! Now we are counting down to Christmas break and then January will be filled with appointments and at least one surgery. We are hoping that Kyler will start walking unassisted more often and we can move forward with his physical therapy skills! I will try to keep this updated more often than every three months but we will see how well I do at that! Thank you for keeping Kyler in your thoughts and prayers! Love, The Moran's Things have been all good here since our last update. Kyler is still healing from his surgery but his bandages have come off and his incision sites are looking good. The one that is still healing up the most is his belly button. It was looking pretty rough from what I am guess was some scar tissue since every surgery has cut open his belly button and gone back through that way. They aren't bothering Kyler at all and he is all over the place being crazy active! He has started putting two signs together and is saying "more food"! I am super excited about this but he is now doing it ALL DAY LONG, starting at .00002 seconds from him putting a bite in his mouth and continuing up until the next scheduled feeding time. I am thinking the all day signing is partly due to him figuring out that we know what that means and so does he, and it is fun to be able to communicate. I also think that he may be wanting something to chew on to sooth some incoming teeth. Either way, I am glad he is signing and understanding how to ask for food!
I started getting back into my classroom in the last week and that left Kyler a little upset. He has gotten used to having mom home all summer and on the first day I went and worked in my classroom for a whole day, he ended up crawling to the garage door and crying three or four times. He has gotten better but these last few days, he has had Jaida and Gunner here with him so he may struggle some more when they start back to school as well. In the past week Kyler got a hair cut and did the overnight oxygen study. He looks so grown up with his hair trimmed up! I was hopeful when we started the overnight oxygen study. When I put it on him it started reading 98% right away and that was promising but I put him to bed and waited to see. After a couple hours, I went in to check and it was still reading 98% while he was fast asleep! I went to bed hoping it stayed that way! We got it turned in and then had to wait for the results to be sent to his pulmonologist in KC for analysis. I estimated it would be about a week before we heard anything. A day or two later we ended up discontinuing his feeding therapy sessions and I requested copies of his files. We then took another trip out to the lake. It was fun being on the lake and getting some sun! Kyler really enjoyed the boat ride! As we cruised around and he saw Gunner whooping and hollering, he started copying some of the sounds. It was really funny when we headed toward the bridge and went under it. The whole way leading up to the bridge in the no wake zone and back under the bridge he was just yelling "BA! BA! BA!" over and over again with a hand raised in the air. He continued to yell until we went back under the bridge and out on more open water. I don't know what he was trying to say but he was sure ecstatic! Since being home from the lake Kyler is showing off some new skills! He has figured out how to crawl in and out of his mini inflatable pool that I bought for him to have in the living room, he is cruising along furniture and even starting to stand by only holding on with one hand! He also went up the stairs for the nurse without complaining today! Today we got the results of the overnight oxygen study and it was good! It said that 99.6% of the time his oxygen was 90% or greater and that the lowest he dipped was 79 during a 4 minute long desaturation episode in which most of the time it was in the mid 80s. It said that those numbers with the change in his heart rate at that time meant the lower numbers were consistent with being caused by movement. This means he wasn't really having lower oxygen, the sensor just wasn't ready great because of him moving around. This is great news, because we get to take him off oxygen at night! He is now off oxygen all the time!! We will be keeping it in the house for when he gets sick and to make it through the winter(aka cold and flu) season since we know that he does require some support when he is ill. We are super excited for the progress he has made and are so happy that there is one less thing for him to have to deal with for now! I am excited because it means that I may be able to clean up my living room and get some of his stuff out of the area since it won't be needed as much now! Exciting things for us! I officially report to work tomorrow and the kids start school next week so we will be getting back on a more routine and regular schedule again. At this point we will mainly be doing life until September when we return to KC for feeding clinic and surgery check in! Last weekend we got to see cousin Lee again and as always it motivated Kyler to get moving a bit more! He followed Lee up a flight of stairs with no fussing and did some of the steps all by himself! The next day we took a trip to Rolling Hills Zoo with Lee and Britany. That day ended with therapy and Kyler did good cruising along the couch(he does best going to his right) and climbing stairs. We attempted to go down the stairs but he wasn't having it at that time! Tuesday evening we said bye to daddy as he headed out for his trip and we finished packing and getting ready to head to KC on Wednesday morning.
Wednesday morning came way too early after a restless nights sleep. The boys and I loaded into the van and headed out. We made a stop in Junction City and picked up my mom and then continued on the way. The boys slept most of the way there. Just outside of KC we stopped for gas and food and Kyler had another blowout(its becoming a habit). After getting him cleaned up, we set back out. Once we arrived at the hospital we had enough time to get Kyler redressed and we made our way up for his first appointment. Surgery pre admission testing. I made a mistake about where the appointment was and after getting redirected we got checked in. We got called back where they took his vitals(weight, height, oxygen, blood pressure, etc) and then asked questions about how he has been feeling and reviewed which surgery he was scheduled for. After reviewing his information they asked us to take him to get labs drawn to check his glucose, it was low the last surgery so they wanted to check it. They also had to check his lab because of the Diruil medicine he takes. We went over the fasting instructions and then went on our way. Originally we were scheduled in PAT at 1:00 and Special Care at 2:45 but on Tuesday we got a call asking us to go to special care as soon as we were done in PAT because one of the doctors had to leave early but wanted to see Kyler still. Then later we got another call asking if we could come to PAT earlier so we can get to Special Care sooner and I tell them we can. So now that our appointment in PAT is over we made our way to special care. When we checked in there, they didn't have down that we had been requested to come early so it was going to be a while. Then they called our team and we didn't end up having to wait too long to get seen. We got to skip the vitals since they were already done in PAT and we just got taken back to a room. Kyler was crawling around and playing and even walked behind a car toy that worked like a walker. First our coordinator came in and we started discussing Kyler's regimen and how he's been doing. I shared about his starting Nourish, eating better(and what a variety he was eating), puking decreased, and how he is active and making progress on his motor skills. We went over his oxygen use, which has been about every other night at 1/8th a liter. One night he is sating 95-100 all night and not needing any oxygen support and the next night he sats 95-91 and needs a little oxygen. He hasn't been needing it during the day since he has been healthy. The other team members trickle in when they can and the information gets relayed. I was waiting for the time when I get told that he needed another feeding added in each day because I had noticed that he hadn't really gained any weight from his last check in Salina. Much to my surprise, that wasn't exactly how that discussion went. The coordinator noted that he had leveled out on his weight but when the neonatologist looked at it, he commented on the chart not being as big of deal. He talked about how Kyler looked and how he was active. He also said that Kyler has always been in that range and it is probably just where he will be. I was sitting there thinking "FINALLY!! I've only been saying that for 14 months!". They did look at his growth per day and did come calculations and would like us to adjust his feedings to give him 2 more ounces per day and some more water daily. I don't think that is unreasonable and think we can work up to adding those extra ounces in over time so that he doesn't start puking more again. We discussed his oxygen again and decided to redo the oxygen study now that he is healthy and if that looked good we can stop oxygen at night unless he is sick. We know from his recent illness that he needs more support when he is sick and we are getting ready to hit fall and winter months which means sickness is going to become more prevalent. We discussed the swallow study and the neonatologist asked if it was necessary. He felt like it was a lot of radiation to expose Kyler to if it wasn't needed. We have been waiting to get one for most of his life to make sure he was safe to be eating and drinking but based on what he's been eating and drinking at home and the fact that he hasn't developed pneumonia or respiratory distress, they felt like he wasn't aspirating. We decided to cancel the OPM(swallow study) and if we felt like he was having issues, we could have their OT team look at him to see if it was needed at that point. We discussed his medications and decided to discontinue his two prescriptions. He no longer has to take Duiril and Nexium! If he starts having a harder time breathing then we will have to start back up on the Duiril. We talked about the upcoming surgery and what the plan was. Next we talked about next appointments. I was surprised to hear that the special care team didn't need to see him again until APRIL! No more every other month appointments! That is until pulmonology mentioned that they will want to see him around 6 months to check on his oxygen status and surgery will also need to see him back to check up on his testicles after the surgery. We also have to head back in September for feeding clinic and will now plan to see surgery then. We will return in January to check in with pulmonology and surgery again at that time. It is exciting that we are turning a corner and don't have to be seen so often now! Before we were completely done I asked them to check Kyler's skull, he has a protruding ridge where it feels like his skull plates have collided and "mountained" up. After feeling it, we discussed if it was an issue. They felt like it was mostly cosmetic but mentioned possibly a helmet to shape it and having the plastic surgeon look at it to see if it is an issue. They felt like it was mainly just cosmetic and one of the team members thought it was too late for a helmet. They aren't concerned about his head shape but it may be something that gets looked at later on. If its just cosmetic, its not an issue but I want to make sure that it isn't something that will cause issues later on. We also discussed the feeding therapy we have been doing in Manhattan and after sharing with them that I am the one doing the actual feeding, selecting and bringing the variety of foods, and the scheduling issue, they felt like it wasn't worth our time since I could do everything but the stimulation machine at home. So when Mike gets back, we will discuss not continuing those sessions once I have to return to work. Finally our appointments were over and it was time to go get his labs drawn and head to the hotel to check in. After getting checked in, we went to find an early dinner since we had a later breakfast and skipped lunch altogether. After dinner we got on our suits and went swimming. The pool was fairly cold but Gunner really enjoyed himself! We got cleaned up for the night and I got our day bags packed for surgery day. I had to have Kyler at the Same Day Surgery at 7:30am after stoping all food at 2:00 am and only clear liquids until 5:30am. I didn't sleep great up was up around 6 and was able to grab some breakfast at the hotel while the boys stayed asleep with my mom in the room. Then I got Kyler and headed to the hospital. Gunner got to stay and sleep in and then was going to get to do some fun things with grandma while the surgery was going on. Kyler and I got checked in at Same Day Surgery and after a short wait, we were taken back to a room. Once in there they reviewed the procedure, Kyler got undressed and in a gown, and the nurse looked at the surgery schedule. There was a mix up and we were told the wrong time to come in. Kyler wasn't on the schedule to go back to the OR until 9:45(two hours later from when she looked). She thought that was a mistake so she went to check. It wasn't wrong, we had been given the wrong arrival time. They went ahead and had us talk to the surgeon(Dr. Snyder) and an anesthesiologist to get that part out of the way so when they were ready, he could go back without any other delays. After that was done they offered to let him go back out to the waiting room to play(more toys available out there) instead of waiting in the small room we were in. I though that would be better suited to keeping Kyler bust and to help him not focus on being hungry so we headed out there. Kyler played with all of the toys out there and was pretty happy while we waited. I was very glad I got up early to eat before coming to hospital because I would not have had time to grab anything with the delays. It was just under 2 hours when they called him back again. We returned to the room and I handed Kyler to her. To my surprise he didn't cry or fuss at all(he's been pretty clingy to me lately). I was then escorted to the elevators that would take me to surgery waiting room(a different one that is one floor down and allows food and drink). I didn't really need the escort, I know my way around pretty well but they have people specifically for that type of thing. It was going to be around 2-2.5 hours from that time until I would get to see him. That time was for about 75 minutes in the operating room and then another 45 minutes to an hour in recovery. After that they would take me to meet him at "Reunion Ave" and then to an observation room for 2-6 hours depending on how he was doing. I got to the waiting room and found a table to set up at. I used that time to do some internet browsing and worked on making some stuff for work. At about 10:30 the surgeon came out to let me know how it went. He started off with telling me that Kyler did good for the surgery but his anatomy was "weird". It was a little concerning to hear that coming from a surgeon who has seen thousands of patients. So they had planned to do a Laparoscopic One-Stage Fowler-Stephens Orchiopexy which would bring release the testis and then move them down to the scrotum. They were not able to complete the procedure and ended up only being able to do the one part. Kyler's testis are abnormal as we know from his last orchipexy. The complication they ran into this time was that his Vas Deferens(the duct that carries sperm) went down to his scrotum but there was no testicle in the scrotum. So they had to pull out the instruments and make another incision to look for the testicle(which they had seen the last time). Eventually they found it again. It was very high and wrapped up around his kidneys. The "weird" thing was that they couldn't see how but the Vas Deferens was up and connected to the testicle. With all of that, they were only able to do part of procedure and they ended up freeing up the testicle but leaving it in his abdominal cavity. Dr. Snyder asked if we had had any genetic testing done and I shared about his SPECC1L gene mutation but he clarified and was asking about male/female genes. I told him I hadn't been told there were any issues with that part of his genes. He shared that shape of his testicles was something that sometimes they see in kids with gene issues. He also said that he thinks it would be in our best interest to have the testicle biopsied when the next step of the procedure is to be completed in about 6 months. So I am left not really knowing with 100% certainty what all of that means. I am thinking that the biopsy is to check to make sure what they think are his testicles are actually testicle tissue and that they actually formed during development or if they(or one) didn't finish developing and its just a tissue mass that doesn't do anything. They said his right side(that was done in February) looks good and is still down in his scrotum so that is promising. After I was done talking with the surgeon, I had to go back and wait for another 45 minutes or so before they called me back to go meet up with Kyler. When they brought him out, he was calm and content in the rolling crib bed. The nurses shared that he did really well and in the recovery room his oxygen was at 95 on room air. That is really good for him coming out of anesthesia. They had oxygen on him at the moment because they wanted to give him a buffer and not exhaust him. We got escorted up to 3 West room 11 which was the surgery observation room. When we got up there he started fussing and I got to hold him. While I was holding him, they checked his vitals and he fell back asleep. After about 30 minutes we decided to feed him and make sure that he was tolerating that. We opted to be safe and set the dose to run over an hour instead of 20 minutes. We gave him some Tylenol and I was given a prescription for oxycodon. I decided to hold of on the oxy and see how he did with pain first. About halfway through his feeding we took the oxygen off him and watched his numbers again as he went back to sleep. His numbers were fine and his feeding finished without vomiting. The nurse came in and thought that he could leave in about 30 minutes! I laid him back in the crib and started getting our things organized in the stroller and pulled out an outfit to dress him in. He was calm laying there and almost went back to sleep. It was time to leave and I started getting him dressed and I changed my mind about the oxycodon. I knew we would be going out for dinner and not sure what else and I didn't want him to be uncomfortable so the nurse gave him a dose and I made a plan to stop at the pharmacy on the main floor of the hospital before leaving. After getting our bracelets cut off we made our way back to the main entrance and the pharmacy. I gave them the prescription but was told it would be around 30 minutes to fill it. I was impatient and just wanted to get back to the hotel where Gunner and Grandma were waiting so I decided to not fill the script and figured I could hit a Walmart for some ibuprofen to alternate if needed. Back at the hotel Kyler started playing with toys while Gunner told me about the adventures he had with grandma. He got to explore at Science City and see the Dinosaur exhibit(which scared him). He built a little car at Science City and got to get in a helicopter! We spent a little time just relaxing and updating people on how it went and then we decided on an early dinner. I hadn't eaten since 6am(minus some beef jerky and chips ahoy cookies) and I was hungry! We made our way to Overland Park and found The Cheesecake Factory. Kyler was interested in eating and was have small bites of some of our food and kept signing for more even before his mouth was empty! After that we went across the street to a Walmart to get some long pants for Kyler and some medicine. It was getting cool and I had forgotten to pack long pants for him. I decided that I might as well try to get his prescription filled since we were there and had some stuff to look at. I dropped it off and was told it would be 20 minutes. So we went about looking for baby pants. Their selection was terrible but we found a two pack that would work. We also found him a couple music toys that he could play with back at the hotel while I took Gunner swimming. Kyler loves music and has the cutest little dances that he does! I went back to pick up the prescription and they had a problem with insurance and needed 15 more minutes(I was kicking myself for not just getting it at the hospital now). So we wandered around the store some more. Went back and after waiting in line behind 3 people, it still wasn't ready. This time I was told that if I wanted to sit there and wait they would call me us as soon as it was done(there was now a line of about 6 people behind me). So I sat and waited. About 10 minutes later I was finally able to get it we were able to leave. One our way out my mom had the idea to check the glasses store inside Walmart for infant/kid glasses strap for Kyler's new glasses. We had got them shortened to fit his head better but in doing so we lost the holes for the straps to attach to. Without a strap the glasses would only last on his face for about 30 seconds before he yanked them off. With luck we found a couple different types and I got them to try out. Luckily they worked and now we can keep his glasses on(unless he is being particularly feisty). The next morning we got up and had breakfast and then packed the van back up so we could check out of the hotel. Before heading home, we made our way to crown center. After exploring through the shops, we moved over to Sea Life. Gunner got to do a mission pack that had him looking for certain things as we went through. It was fun and Kyler enjoyed seeing the ocean life they had in there. After that we started making our way home. It didn't take long for both boys to fall asleep. As we got close to Manhattan, we decided to take a detour to Pillsbury Crossing. My mom and the boys had never been. When we got there we could see it was pretty dried up so I didn't get to show them how cool it is when water is flowing over the rock but we took some time to explore the dry river rock bed. We ended up seeing a bunch of frogs from large to teeny tiny. Lastly we walked over to where there was water and I saw a snake just hanging out feet from where people were swimming. The snake had a small black fish in its mouth that was only a couple of inches long. After a google search and sending the photo to someone who is out in nature more than us, we identified the snake as a Northern Water Snake. We left and continued home after dropping mom off at her house. Kyler is doing well and hasn't needed any pain meds since yesterday around noon and we are awaiting Jaida and Mike's arrivals back home in the next couple of days. Next up for us is me getting back into my classroom to get ready for my official first day back and just getting the kids ready for back to school again! We will be waiting for September when we go back for feeding clinic and surgery check up. Thanks for all the prayers for Kyler's surgery! |
Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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May 2020
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