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!
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Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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