I have been slow getting around to the next update but here it is! We kicked off summer with a weekend at the lake. It was nice to be out there, it is one of my favorite places to be! The weather was nice and the water was cool but not too cold! I was camping in a primitive spot and had to figure out how to manage all of Kyler's feedings and cleaning of stuff without my normal set up at home. Luckily we had generators and some running water to allow me to more easily clean his stuff. We had fun hanging out with family. Great Grandpa Bill worked really hard to teach Kyler how to crawl and how to roll it up for patty cake. By the end of the weekend he was rolling it like a pro and quite proud of himself! He was so close to crawling and we think he may have taken a couple crawl steps during dinner one evening but I didn't get to see it. We enjoyed swimming to cool off and Kyler thought it was pretty relaxing. So relaxing that as I floated, he fell asleep on my chest. He slept like that for a good hour at least! When it was time to head home, the kids(and I) were pretty bummed but we were ready for a good shower and some AC! A couple of days later, Kyler started puking a lot, had a fever for 4-5 days, and was needing oxygen during the day for support. On the 4th day we went to the doctor and didn't really find out anything. They thought it might be teeth or something viral, neither of which were anything we could really do much about. As of now we still haven't seen any teeth so I think it must have been something viral. A couple days after that Gunner came into my room in the middle of the night and felt warm, then he woke up and vomited and had a tummy ache all day but then he was fine after that. That weekend we got a playlet for the back yard and Grandpa Art, Uncle Shaun, Great Grandpa Bill helped Mike and I get it disassembled, moved, and then reassembled. The kids were very excited and it has already gotten some good use! A couple days after that we got to see Uncle Shaun and Aunt Britney again and they came over for dinner with my dad and sister. We took the opportunity take a couple quick family pictures before Shaun and Britney had to head back to Florida. The next week started our crazy month! Both Jaida and Gunner started ball games. Jaida is playing with a group of girls that she has played with for the last couple of years and is in her last year of playing with the Knights of Columbus. Gunner is playing for his first time on the "Blues" and is learning how to play the game. He has a full uniform and looks so handsome in it! The first week of games consisted of a game every night! Gunner played Monday, Wednesday, and Friday with Jaida playing Tuesday and Thursday. It was a long hot week! I learned very quickly after the first game that the folding wagon Grandma Colleen got us would be a life saver! It has gone to every game with us since then! It is great because I can use it to carry Kyler, his toys(and food pump when needed), my chair, water, and other things without struggling. After getting set up in a spot it provides a great space for Kyler to play and sit while I watch the game. An added bonus is the shade roof! It has been so hot and sunny and the way the shade is designed allows me to hang a thin blanket on the side of the shade to create more shade from the sun! The game schedule is packed in through the month of June and they won't play any games in July. On June 5th, Kyler hit another milestone. He started crawling! He had been so close for a while and after working on it some in PT the day before, he started doing it unassisted! It was slow at first with short distances but he has now gotten a lot quicker and is roaming all over the place! We have now had to install a baby gate at the top of the stairs and are now looking at baby proofing. His favorite place to play is the kitchen, specifically the freezer drawer(which we just got magnets for him to play with) and the oven drawer(opening and shutting it). Since figuring out the crawling business, he also has decided that he needs to be on the go all the time. He is harder to just hold and rock now because he wants to be moving! We also finally got in for his one year check up with his pediatrician, only he was out so we saw a different doctor. He is weighing 17 pounds 8 ounces and is 28.3" tall. He is still hanging out in <3rd%ile for weight but he looks good still! He ended up getting three vaccinations and having some blood drawn as part of the normal 12 month check up. The doctor who saw him commented on his height saying that it wasn't increasing like it should be and that he needed to be getting more calories a day. After having already told him we are waiting for insurance to approve the blended diet Nourish and that we were instructed to keep him on infant formula until then, I reiterated that we would be increasing his calories once we got that. He wanted us to increase his formula concentration but I was not comfortable having him make changes when he had only just today laid eyes on him and didn't know anything about his history. We are still waiting on the insurance to approve the Nourish so we can get started and I have started calling every week to check on it. I hate that it takes so long. Next up we made a visit to the River Festival. It was a short 2 hour trip because it was so hot. The big kids had fun doing a couple activities and I enjoyed getting to visit and hang out with a friend while we were there. After leaving, we went swimming to cool down! Kyler did some floating in his ring and didn't mind it too bad. Gunner was able to get over his fear of deep water(as in anything other than the stairs) and was swimming in the deep end(with a life vest)! Jaida is a water bug and is jumping into the deep end and swimming like crazy without a floatation device! Kyler got to try out a baby float and liked playing in that while I floated beside him. This week started off with most of the house suffering pretty badly from allergies. Kyler has been hit with them too and has been puking and feeling miserable. He has had some low fevers again with it spiking to 102.5 last night. He has a ton of drainage but it is all clear. Unfortunately with his super sensitive gag reflex, it causes him to vomit easily. We just started a dosage of allergy medicine and it has seemed to help already. He may be fighting something viral still as well but it is hard to tell because he will do great for a couple days with no fever and minimal discomfort but then start having trouble again. This part makes me think teeth but his fever has gotten too high for that I think. This has thrown a kink in his feedings. He was doing well with orally eating and he was taking around 40mL of food by mouth fairly consistently but he hasn't wanted to eat with all of the vomiting and drainage. Unfortunately this also made for a not good first appointment with the feeding therapy in Manhattan. We finally got on the schedule and went yesterday for an initial evaluation and appointment. After talking with an OT and Speech to start off with, we took him to a "kitchen" to eat. The timing was good since it was just a little after his scheduled feeding time and I had preferred foods with me. Before feeding him, they wanted to check his mouth and it ticked him off big time. These new people had their fingers in his mouth feeling around and he was not having it. He was so worked up that it was hard to calm him down(which isn't usually the case). After that they tried to feed him first. Didn't happen. Then I tried. Didn't happen. Finally Kalisha (his home health nurse) tried. It didn't happen. He was not going to eat for us that time. He was really not feeling great which we knew going in but it just kind of stunk because we had waited so long for that appointment. Now that we have gotten in, we will begin traveling to Manhattan once a week for him to get specific work on his feeding with them. We have an appointment for next week and will be getting the rest of his time scheduled after that. Today he has taken a few small amounts of food but not as much as he was taking. Before he started vomiting again, he was doing so well and even took 85mL one evening! Hopefully with the weekly feeding therapy and figuring out his allergies/viral/whatever is making him puke, we can get him eating more. During PT this week, we working on pulling to stand and he showed off his crawling skills. Then later that evening he pulled himself up to standing all by himself! Another milestone! He isn't doing it a lot(actually he hasn't done it since :) ) but I bet it's not long before he is doing it more often! Also this week he got to swing for the first time! We have the support cushions that we use in his stander and they worked perfectly in the swing. He was so happy swimming and let out some baby giggles! His brother and sister took some turns pushing him and he thought that was pretty neat as well! Next week we are looking at the reassessment of his TA waiver that allows him to get home nursing, more ball games, more therapy, more swimming, and hopefully no more puking!
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Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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