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