Time flies when you're having fun! We have been staying plenty busy without really doing a whole lot! Kyler ended up fighting a rhinovirus that was diagnosed after a trip to the ER on June 17th after his fever reached somewhere between 104-105 from what our thermometer was reading. That cold and fever ran from the 13th until the 20th with just some lower grade for a few days after that. It was not fun. He felt terrible and ended up needing some oxygen support, even during the daytime while he was fighting that virus. Unfortunately that illness cause our scheduled oxygen study to be off and it also postponed his surgery. The oxygen study was to be done without oxygen on and for a full 24 hours. I mixed up directions and only put it on him while he was sleeping, and then ended up putting oxygen on him because of his numbers with his illness. So we will have to have that redone to see if when he is healthy, does he need oxygen during sleep hours still. The surgery got rescheduled because it is considered elective and they will not do elective surgeries if they have been sick. He needs to be healthy for 4-6 weeks before they will operate. So it was moved from June 28 to July 26. This was a little bit of a bummer because we had be considering taking a trip around the 25th of July but it's what had to happen. The next couple of days as Kyler continued to get over his cold, he learned how to do the "pat it, roll it, and toss it in the air" part of the Patty Cake song. It is super cute and so fun to watch him do! He also went in for a vision check up and we found out his prescription got a little better. I also had to admit that we haven't had him wearing them as often because he yanks them right off and I get tired of fighting him to keep them on. I did commit to getting him to wear them more now that he is older and seeming to understand "no" and simple commands more. Another motivator to have him wear them is that if he doesn't now, he may have to do some eye patching or even surgery in the future. So I started the battle of having him wear them more by making him a new outfit that says "Chicks dig the glasses" and he is amazingly adorable in it! We also had his new frames and lenses ordered since the prescription changed and his current pair of glasses are from when he first got them at 3 months! All this time we had still be awaiting to get approval and get Kyler's Nourish(the blended food). Finally around the 27th of June(after calling weekly) we got a call saying the company received the approval from insurance(United Healthcare) and we should receive it in a day or two. Hooray!! I was so excited. At the time I had wished it would have come sooner so that our nurse could help work out the kinks but she was leaving for almost two weeks for her wedding. It worked out and I was able to have a plan worked out for when she returned! We started it that Friday after stoping the formula after his 9:00pm feed Thursday. Our instructions from the feeding clinic in KC said to start with 2oz per feeding and daily increase by 1oz as he tolerated it. So Friday he received 2oz at 9am, 1pm, 5pm, 9pm, and 1am. I used a syringe to slow push it in and he tolerated it with no vomiting all day!!! I may have accidentally squirted some onto the ceiling the first time! The next day we moved up to 3 oz at the same times and Kyler did well again. He even showed some crankiness and ate some orally for us! I think it was one of the first times he really felt hungry and that made me excited! Day 3 of the Nourish he got 4oz at a time but this time he didn't get it at the 1am feeding. We were told he needs a total of 20oz per day and we could do that by giving him 4 ounces 5 times a day OR we could give him 5 ounces 4 times a day. We considered how he was already getting almost 5oz of formula before the switch and knew he could mostly handle that much and I wanted to get him off overnight feedings if possible, so we decided to go for the 4 feedings per day schedule. Day 4 he moved up to the full 5 ounces and did pretty well. I accidentally made him puke by pushing it too quickly. It is pretty hard to time pushing in food over 10-15 minutes by hand. The next day I decided that using the pump would be better for us and over the next couple of days figured out that he needed around 22 minutes per feeding to not puke. Since starting the Nourish he hasn't puked as much. He will occasionally still but it has cut down quite a bit already. He is also needing 7 ounces of water per day that is spread out between feedings. I found the easiest way to do this is to fill a container with his daily water and fill a syringe with a couple ounces at a time and give it to him that way. This also allows me to get his water in if we miss a time to give it to him(can't do it too closely to eating so he has room for the food) and I can give him some in the middle of the night if needed. Since he started feeling some hunger he has been way more interested in eating. On the 4th day of the Nourish, he ate an entire baby food container of food in around 10 minutes! That is 4oz of food!! It is so exciting. His oral intake fluctuates quite a bit still but there are times when he is eating enough orally that I have to watch how much Nourish goes in through he g-tube so we don't overstuff him and make him puke it all up. Since it has been happening quite a bit, I started him a MyFitnessPal account where we can log his foods and watch his calories and have a better idea of how much nourish he needs. He has gotten so much better at the oral feeding since starting Nourish and getting stronger with his gross motor skills. He is doing a lot better at moving food around his mouth with his tongue, he isn't vomiting every time he gags, and he is trying a lot of different textures. He has had cheese ravioli, pizza, burrito, spaghetti, beef ravioli, McDonalds cheeseburger, ice cream, marble cheese, breads, and a few other things along with his purees. He is also drinking from a cup! I was beyond excited when he was showing interest and after some spills he was actually taking drinks. I could hear some solid gulps and he wasn't coughing on it or showing any other signs of not handling the water well! Since then he has also had some small drinks of plain and chocolate milk, apple juice, and more ice water(which is his favorite at this time)! July started off with a visit from Uncle Sean and cousin Megan and a trip to Kenwood Cove with the rest of the cousins. He also choose this time to learn how to unhook his feeding tube and drench his bed and himself in food. Okay it was an accident but I think he liked getting a bath after the whole ordeal! Next up he hit another milestone! He pulled himself to standing without help! I had to trick him by putting my hand on his to make him think I was helping but he did it! Next up we got to see cousin Lee and Britney. Kyler got some tough love from Lee in the form of a hug. It was pretty funny as it happened. Lee tried to give Kyler a hug and Kyler started crying. This caused Lee to laugh and then he tried again, only this time he yanked Kyler to him and gave him some love even if Kyler didn't want it! We celebrated the 4th with friends. Kyler did really well with the noises and enjoyed watching the big ones in the sky! After the 4th we finished out Jaida and Gunner's final ball games. We also experienced a new kind of diaper out of Kyler. Since he started the Nourish, his bowel movements have been larger and messier. This resulted in a massive mess when he quietly filled...overfilled... his diaper and proceeded to play in the kitchen. To clean that mess, I had to bring out the carpet cleaner, Clorox, and the laundry stain remover! This has been a trend now. So much so that when he starts his tell tell sign of going, I try to get him to the toilet. It works some of the time and he has gone to the bathroom a few times sitting on the stool! When I miss the opportunity, its a gamble of what kind of mess I will find! As the weekend hit, we headed out to the lake. It was fun getting to swim and enjoy being with family and the firework show was awesome. We took a ride on my Uncle Billy's sailboat and watched them from on the lake. Jaida and I spent some time swimming around the boat while we waited for the show to start. I forgot how much swimming works your muscles and woke up sore the next day! We got to return to the lake the next weekend also to celebrate cousin Kamil and cousin Lee's birthdays. In the middle of all of our running arounds we have been having his regular physical therapy and his therapies in Manhattan. In physical therapy he has been working on crawling over objects and in through things. He wasn't too sure of the tunnel but is getting more comfortable with it. He also is crawling over pillows and working on getting over and through obstacles. He has also been working on standing and cruising along furniture. Most of the time it is guided with us helping move his legs. He has just started moving them himself and walking behind a walker in the last week or so! Another milestone hit! I am always amazed at his progress and even when it seems slow, he gets there on his time. He really doesn't like being told what to do :) Our therapies in Manhattan have only really truly just started. After his initial eval we were set to return but since he was running fevers we had to cancel that weeks appointment. So we went down the next week and I was looking forward to getting a session in. When we got there, it turned out that we needed to do a speech eval and we didn't get to work on feeding. The speech evaluation consisted of her asking me if he could do a particular skill. I had a hard time answering a lot of them because they were things that I think I've heard him do but he doesn't do often. Due to that and the test only have two choices(yes or no), he received a score of "poor" for his expressive language(what he can show us and say) and he was in the average range of the receptive language(what he understands). I was pretty surprised his expressive was that low, I knew he was a little behind but I didn't really think he was that far behind. After that was over, we were sent on our way and headed home. The next week we headed that way ready to some real work finally. We got to the kitchen and I was the one to feed him. I had an arsenal of food choices to see what we could get him to try. Food options included a puree, marble cheese, cereal puffs, a McDonald's cheeseburger, and cup of water. I was really hopeful because just the day or two before his appointment was when I heard him taking good swallows of water! The speech person hooked him up to a electronic machine that sends pulses through the pads. This was placed on his throat and turned on. It is supposed to help make his body want to swallow. Kyler didn't flinch and she had it turned up all the way. It was a great session and Kyler ended up eating a lot of cheese and puffs, some puree, and about a quarter of the cheeseburger! The only thing he wouldn't do was drink anything. It was very exciting and he got in a lot of swallows. Since he was eating so well, the speech lady ended up trying to work some language in and had him practicing pointing to which food he wanted. Kyler just wanted to grab it and needed help curling his fingers and extending his pointer. As we were finishing she told us we needed to head to the Occupational Therapist next, the week before she had sent us home when we were supposed to go see the OT. So we headed there next. The person we were supposed to see was in a meeting so we met with another lady and she had to do an OT eval on him. That one was pretty close to average for his age but there were a few things he was a little behind on and most of those things are from lack of exposure. So we finally headed home and I had a list of things to work on that he wasn't able to do for the assessment. What was kinda funny was that he started doing a few of the things by the time we had left! So this week we(his nurse and Kyler and I) headed back to Manhattan for more sessions. Feeding was okay. He wasn't super interested in eating but he did take some drinks of water. So we decided to pack up the food and head to her office to work on some language stuff. Before we left the kitchen, I asked to feel the patch thing they put on him(I really need to find out what its called) just out of curiosity. She said sure and said most parents want to feel it first before putting it on the kid, I told her I trusted they wouldn't do something that would hurt him! So she put a patch on me and began turning it up. She had told us that she could only handle 4-5 level and Kyler was at 10! I wasn't feeling anything and began thinking Kyler and I must have really high pain tolerance. Well maybe or maybe not. It wasn't working. After telling her I didn't feel anything as she continued to turn up the levels, she did a test and found it wasn't working. So I don't know if it was working the previous week or not! In her office, she had Kyler playing with some toys and he was doing quite a bit of babbling. After our time was up there we headed down to OT. She wasn't ready for us and we were taken to the waiting room to wait. After about five minutes we were taken back to the OT's room. It was then that I was a little taken aback. She didn't have anything planned to work on and began asking if we wanted to have the OT sessions or not. I was confused because at the very first meeting, it seemed like they wanted him to get as many services through them as he could(we turned down the PT since we already have a great one at home) but were open to the other since they could see him weekly. After saying we would go ahead and continue(or start?) with OT we spent the rest of the time watching Kyler play. He started crawling around trying to get into different cubbies with toys and she just let him get into what he wanted. I was annoyed at this point and started directing him with markers to scribble. When we left I was feeling pretty disappointed in that OT session. I was really frustrated that we spent a half and hour in there and the OT didn't do anything to directly work with Kyler. On the way out of the office I checked in at the receptionist to check in on the schedule. The previous week I had asked about getting him on a Mon/Tue one week and a Wed/Thur the next week type of schedule for when school starts so that Mike could bring him to sessions. I can't take off every other week to go to the sessions. I just an instant "no" and that they can't do that. I personally feel like thats a bit ridiculous that they can't adjust schedules at all. I was told the only way to do that is to call a week ahead of time and see if there was a cancellation. I was very frustrated at the scheduling issue. I went ahead and canceled the next weeks appointment due to Kyler's surgery that's coming up. As I drove home, I began wondering if driving to Manhattan is worth it if they aren't going to be able to work with us to see him weekly once school starts. I don't feel like any of the progress Kyler has made in his eating and speech is because of what they are doing and its more from what we do everyday at home. For the feeding, I am the one feeding him, selecting and bringing foods to try, and noticing his signals. The only thing they have done that I can't is the patch machine. So I am going to be talking to our team of people to see if I need to continue those services or not(we are still getting feeding support with the speech therapist through Infant and Child Development so we are just quitting services if we decide to go that route). Today we got to partake in the 3rd annual Runner's for Gunar's Sake. It is an event to support our friends son Gunar. Gunar's family has been super supportive of us with Kyler's journey and we were so excited to get to be part of the festivities today. There was a walk/run and we did the walking part! Mike toughed out the full walk while I pulled Kyler and Gunner in our wagon for about two miles! I did get Gunner to help walk and pull the wagon for a short while! It was a fun day and we came home with some homemade medals made by Gunar himself! Now we are just waiting to get through the next few days. Mike will be heading out Tuesday evening to go to Mexico on a trip with friends and Jaida is on a trip with a friend so Wednesday the boys and I will head towards KC, picking up my mom along the way, to Kyler's appointments and then surgery on Thursday. While we are in KC, we are planning to take Gunner to do something fun but haven't made any solid plans until we see how Kyler handles surgery. This surgery is to bring down his left testicle. From what I can see from online searches is that it should only take around an hour for the actual surgery time and I know it is an out patient surgery so we aren't planning on a hospital stay this time! Please say a quick prayer for him that his surgery goes quick and uneventful!
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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! These last couple of weeks have flown by. On the 14th we traveled to KC to meet with the feeding team and have Kyler evaluated. We meet with five team members for the feeding team. The team included a dietitian, nurse practitioner, speech therapist, occupational therapist, and psychologist. We started with reviewing Kyler's history and concerns. Next we got out some of Kyler's food and let them see him eating. He started off good with his favorites of cereal puffs and then we moved onto purees. I really didn't think he would even open his mouth for a bite. Then I was surprised when he did open and take a couple bites. The team brought up his coughing since it can be a sign of aspiration. We talked about how he coughs fairly often and it isn't only with eating, it is hard to say if it is aspiration or not. After watching him eat and seeing him turn away from food, the team thinks he is refusing to eat as a way of protecting himself. I had asked about if it was behavioral and he had just figured out that the tube feedings are less work(for him) versus the work he has to do to eat orally. They didn't feel like that was the case. We also talked about his nutrition plans since he was going to be turning one and needed to come off infant formula. I shared about wanting to go to a blended diet and was thinking about a product called Nourish, which is a commercially available blended diet. They agreed with putting him on that and had said they've seem success with kids with reflux on a blended diet. I shared that I have been wanting to have him try it since around 6 months and at that point they may have thought I was a little crazy! The speech therapist did some things with Kyler including trying to feed him. As she worked with him, she determined that he has low tone in his mouth and even though he is moving his tongue more, it appears to be sensitive and not moving as much as it should. These weaker muscles and lower movement make it difficult for him to eat appropriately. She also said that he is nipping at the spoon instead of taking true bites. This made perfect sense to me with how he manages his pacifier and chomps on it versus really sucking on it. After that they recommended that he get weekly feeding therapy to work on the low tone and oral skills. He is currently getting services 1-2 times a month but her schedule is pretty packs and since it is summer, we were given the option to go to another town to get him in for some extra sessions. We ended up leaving that appointment with plans to get Nourish ordered and then get him signed up for extra sessions for oral therapy. We ran into a little snafu with the Nourish when I found out that it will take 3-4 weeks to get it approved through insurance and shipped to us. This was a bummer, I didn't think it would take that long. So after finding that out we explored our options. The first was to order and pay out of pocket for the first month and hope that we could get paid back from insurance. This we found out would be around $1,000.00 for a months worth and there wasn't a guarentee that we could get refunded after insurance approved it. So we went with our second option which was to leave him on the infant formula until we get approved for the Nourish. After that we headed back home to get ready for Gunner's preschool end of the year performance. He was so proud and he insured us that he would actually sing this time! He did good and got to end with a song about dinosaurs!
The rest of that week zipped by, with it being the last week of school things were pretty crazy. The week ended with the last day of school but more importantly, it was Kyler's 1st birthday! Our little warrior is now 1 year old and happy as can be! He is moving around much quicker and so super close to crawling. He is doing a lot of babbling and sometimes it sounds like he is really trying to say some words(like Bubba). I have been getting him to say "Bad Bad Boy" which he thinks is pretty funny! We had a smash cake for him in the evening and it was fun watching him do that type of celebration like many other babies! I wasn't sure how it would go and if he would gag himself by trying to eat some but I wanted him to get to try it. He did great. He put his hand into the frosting the second I set the cake down and then explored it on his hands a little bit. He wasn't sure what to think about it and seemed pretty curious. I gave him a little taste of the frosting off of my finger and then encouraged him to take a bite. He then started putting some to his mouth more. Before long, he had frosting all over and the red frosting on his lips made him look like the Joker from Batman! I was curious what he would do with the cake(not just frosting) so I flipped the cake over and he dug into it. He even tried to bend down to take a bite but he couldn't bend far enough down to get a bite. After he was done I carried his highchair(with him still buckled in) to the shower and hosed them both off! He then got dressed and got to play with his new puzzles from Aunt Robin and his new monster machine from his nurse Kalisha. He really loved both of his new toys and they are both perfect to help him work on his next milestones! His birthday had me a little emotional. As I held and rocked him I could help but shed some tears, both happy and sad. I am so happy that he is thriving and we have made it to one year. I am happy for all of the milestones he has hit and the obstacles he has overcome. I am happy for the joy he brings our family every day. Then I am also sad that my little baby is getting bigger, he is now long enough to take up my torso. I am sad that my last baby is leaving the baby stage way faster than I want him to. Then I am happy again that I am able to have these thoughts and feelings when a year ago, I wasn't sure I would have these moments. The weekend arrived and after tinkering around the house some, we met up with Aunt Miranda and Grandma Val for some swimming/tanning. The water was too cold for Kyler but he enjoyed playing with toys in the shade. Then we got to see Uncle Sean and cousin Megan when they got to town. Sunday we got to celebrate cousin Haylie as she graduated from high school! After the celebration, Jaida had to go to ball practice and I took the boys with me to my classroom to get some things done before work on Monday. Monday after work(my last contracted day!) I rushed home for Kyler's physical therapy session. Kyler got to try out a crawler machine that is meant to help him learn the motions and get the feeling of crawling without having to do as much of the work to start with. He was not a fan of it. He did some more work on kneeling and pulling to stand. He showed Shayla how close he is to crawling and we talked about ways to increase his hip strength. One thing we will be doing now that we can get in a pool is some water therapy where he can float with the ring and build strength with free kicking. We will also work on him trying to climb stairs by using the pool stairs which should offer less resistance for him. After his session was over we began packing for appointment in KC in the morning. Jaida and Kyler stayed with me and we started getting things together while Mike and Gunner headed out to ball practice. I am sure thankful for the evenings when Mike is home. I am not sure how I am going to manage all the running around to practice and games this summer! Back to packing! We packed stuff for a couple nights stay. I wasn't sure what our appointment would show but I wanted to be prepared for a stay if they determined his fundo had come undone and wanted to get him in for surgery in the next day or so. Then we ran out to Stacy's to get Kyler a haircut before we left in the morning because the hospital told us that they wanted to get a picture of Kyler donating the money from the fundraiser. He did really well for his 1st haircut and looks pretty darn good with his new look! Jaida and Gunner were so excited to get to go to KC with us this time and couldn't stop talking about getting up at 4:30am to go! Finally we got to bed and 4:30 came too early. The kids both got up super easy(way easier than on a typical school day) and we threw in the last couple of things and hit the road. I didn't think the kids would sleep after they were so excited and talking for quite a while down the road. Eventually they did fall asleep(as did I). We ended up running to some stopped traffic on the way but had plenty of time to get where we needed to be. We got to the hospital and headed for a drink from the cafe before heading to the appointment. While there we saw one of the NICU nurses who cared for Kyler(she was the one who did his carseat test and told me about the throw away pads for puke messes). We visited with her for a moment and then made our way to radiology to check in for the upper GI procedure. I was confused about going to radiology because I thought they were putting him under and putting a camera down his throat but that was not how they would check his fundo. To check it, they did a fluoroscopy. That is where they take continuous x-rays while injecting contrast liquid into his tube and watching the path. Kyler fussed a little bit during the part where we had to hold him down to get the pictures correct. In all that appointment took about 30 minutes and we were on our way to kill some time before we met with the surgeon in the surgery clinic. It was too early for lunch and we had about an hour before the next appointment we took the kids to the library in the hospital and they got to play in the play room. I took the opportunity to got visit with health records and information to see about getting Kyler's birth certificate fixed. It has my maiden name spelled in correctly. After giving them the information required, I met back up with the kids and Mike. When it was time, we headed to the surgery clinic. While we were waiting to get called back, I worked on filling out the intake paperwork for the therapy center I choose in Manhattan. Once we got to speak with the surgeon, we learned that everything looked good and his fundo was still intact. This is good news but doesn't tell us why he started vomiting again. We also learned that with a volume challenge he began refluxing but not up high enough to be worried about it. The surgeon also mentioned that Kyler's stomach is quite small. This makes perfect sense with his intolerance or formula we experience early one as well as considering that his stomach was cramped into his chest cavity with the other misplaced organs. He also checked on Kyler's testicles. I got a little scare when he was concerned that he couldn't feel the testicle. I asked if it is possible for them to move back up and he said not really but it could mean that there isn't much left of it. As I started to worry more I realized he was feeling both sides and only his right side had been brought down in February. I mentioned that and was quickly relieved when he said it was all good then. He ended up reviewing that everything looked good and there really wasn't anything to do from a surgery standpoint and we left. I didn't really know how I felt leaving. Relieved that he didn't need surgery but left with no answers or ideas about why he was still puking. I was also feeling weird about not getting to visit with our main team to talk about it. We then has some more time to waste as we waited to meet with the philanthropist person to give them the donations from the CDH shirt/Kyler's 1st birthday fundraiser we did. They wanted to do a picture and had a couple of the people from the Special Care team come down for the picture. They had one of those big checks and Jaida and Gunner got to sign it for the picture. Thank you so much to everyone who donated or got a shirt!! We got a couple pictures with us all in them and then some with just our family and finished off with some of the kids. We were done at the hospital and left to find some lunch. We went to try Joe's KC BBQ but when we drove through the parking lot, there was a big group of people waiting and a van full of people pulled in right before use so we decided to go find somewhere else to eat. We ended up choosing Cheesecake Factory and it was delicious! Kyler even enjoyed it! I gave him some bread and then when he started getting some chunks off of it, I took it away and that caused him to cry a little bit. I made it up to him by giving him tastes of the sauce from my chicken Alfredo. He love it! He let me dip is pacifier in the sauce over and over again. Then at the end of the meal, he had some whipped cream and cheesecake too! We left stuffed and satisfied and headed home. The kids got to watch a movie on the way and the drive went well. We made a stop off in Manhattan to drop off the paperwork at the therapy center and then after we were done in Manhattan we stopped by my moms house in Junction City. Kyler got to see his other Uncle Shaun and Brittney since they were there with my grandparents helping my mom with some things. We didn't stay too long since we were so tired from our long day. Finally we made it home and got the van unloaded. Gunner put himself right to bed and it didn't take long for Jaida to follow. Kyler was talking up a storm so we attempted to FaceTime a few people so he could talk and then we finally connected with Britany and Lee. The boys were super cute and Kyler kept giving Lee kisses through the phone! We are looking forward to getting to see him and other family this weekend at the lake! Now we are basically waiting to get scheduled for the feeding therapies, getting in the Nourish, and starting our summer out for real! Last weekend was a nice weekend spent with family. Kyler got to take a bath in Aunt Robin's BIG tub with his cousins' Lee and Liam. Monday night we had a little trouble and some excitement. First we noticed that Kyler's shirt was soaked and brownish around his tube area. After looking, it was blood that was mixed with stomach acid and getting on his shirt. The area around his g-tube was bleeding. This was something new, it has been irritated before but never bleeding like it was. I took out his g-tube and noticed the top of the stoma(hole leading to his stomach) was raw. After cleaning it up and putting some barrier cream on it, I then dressed it with gauze and put his g-tube back in. I sent messages to one of the nurses and we decided to keep an eye on it. I was wondering if since we took him off the Omeprazole(which made his stomach acid less acidic) if it was letting his stomach acid burn and irritate his skin as it leaked some. I still don't know but that would be my best guess. He also ended up throwing up once on Monday which was a bummer. The exciting part of the evening was that I laid Kyler down to sleep around 9pm and he was sleeping so calmly and his sats were good, that I decided to leave off his oxygen cannulas until his machine started beeping at me. It was 6:00 am and the machine beeped for 10-30 seconds and then didn't go off again. He went all night without needing oxygen and kept good stats all night! We had gotten a new pulse oximeter machine and it seemed to be reading better than the old one. Tuesday rolled around and the same thing, he went all night without oxygen again. I was super excited that he wasn't needing it and had told myself if he went a few more nights like that, I would call KC and see about getting the 24 hour study done sooner. Well those plans got put on hold. Tuesday he puked a couple more times and by Wednesday night, he was back to setting off the alarms fairly often even with oxygen on. Kyler began throwing up more, mostly at night to start with. I was thinking it was due to him cutting teeth. His 3rd top tooth has broken through, but its still working on coming down all the way. At that point I didn't think too much of it. Then my birthday came and Kyler decided to show me how he could get from his belly to sitting! I had seen him do it once before but this time I was able to catch it on video! It was totally awkward but it worked for him! Ever since then, he has become a pro at it and does it much faster and just a little less awkwardly! He is so proud of himself and he is loving being able to move himself. On Friday we took advantage of the beautiful weather and watched big brother blow bubbles in the front yard. We like being able to get out of the house now! Kyler and Gunner enjoyed playing with the bowling set that evening. In the morning the boys got dressed and were wearing matching outfits. Gunner was very proud that his brother matched him! It didn't last long though because soon, Kyler had a blowout and that outfit had to come off! We spent the rest of the weekend just getting things done around the house, a graduation party, a surprise birthday get together, and then the first ball practice of the year. Kyler had a lot of fun hanging out on the blanket and enjoying the fresh air! Kyler has had some fun movement things happen. I already mentioned the getting to sitting position. He is spinning himself all around to see everything and he is getting up on his knees and arms! He looks like he is so close to crawling and I am super excited about that, but it also means I will have to do some more baby proofing! During his last session for PT(but without the physical therapist) he even scooted just a bit on his knees! I really think he might figure it out and start crawling before long. He has also been working on pulling to kneel and pulling to stand and he is getting pretty good at it. The trick with him is finding what will motivate him enough to want to stand or kneel. Usually its try to get to his pacifier! He has also figured out how to sit on his car and press the buttons to make it make sounds. He is also starting to wave more consistently and he is signing "all done". Oral feedings hit a major wall since last Monday as well. He has been basically refusing any food by spoon and even my little tricks aren't working. He will still attempt some foods by mouth if he can hold on to them but even those have been gagging him and making him vomit. He was on such a roll and it has been so discouraging to see him stop eating. I am especially saddened because we go to see the feeding clinic in four days and I was hoping he might be able to show them some eating but his track record the last couple of days doesn't look promising. Luckily I do have videos of him eating when he was doing well! Since Pukey McPukerson is back in town, I sent a message to the special care team in KC. I included the information about his g-tube site bleeding and the increase in vomit. I shared my concerns about his stomach acid being too acidic for him since he's been on a acid reducer his entire life. I also shared my concern that part of the vomiting might be due to gagging and choking on drainage from what I think is allergies. Both Jaida and Gunner are on daily allergy meds year round because without them, they get hoarse, hacking coughs. Since Kyler has been having clear nasal drips, cough, and excess vomiting, it would make me think he may have allergies as well. The surgery member said we could have his pediatrician handle the allergy bit or the special care team. I let her know I would visit with his pediatrician first. She also asked about when school was out so that they could schedule him for an upper GI. They are wanting to check to make sure his fund has not come undone as the reason for the increase in puking. I am in that weird place of wanting two opposite things with that. First I want it to not have come undone so that we can avoid another surgery but on the other hand I want it to have come undone so it would explain the sudden increase in vomiting. Life with a medically complex kid is weird and mind boggling. Then I started this morning with a call from KC telling me they have scheduled Kyler for the day after I am done at 8:30am. So much for starting off my summer with sleeping in! So now we are back playing the clean up puke everywhere game and I am optimistically hoping that I can get the kids in the pool this weekend but that will depend on how Kyler is doing! Now we are awaiting our trip to KC to see the feeding clinic and then another trip to get the upper GI done. Little Man is now 11 months old! He is currently weighing in at 17 pounds 7 ounces and is 27.5 inches tall! He is so fun and gaining new skills each day! On the 19th we wore our CDH awareness shirts along with a lot of friends and family(check out the photos below)! We did the shirts as a fundraiser for Kyler to donate for his first birthday in May! We still have extra shirts if you would like to get one still! Kyler got a ride on toy as a gift and he loves it. He sits on it big and proud! He is learning how to make it make noise and is even throwing fits when we take him off of it. On Monday of this week Kyler had physical therapy and he learned a new skill in only a couple tries! It was super exciting because his normal is to spend quite a bit of time learning how to do something new and after only two practice tries with help, he was doing it by himself! He is now able to turn around while sitting. He was just rotating his torso as far as he could to try to look around and see what was behind him but now he will move his legs and is able to turn his whole body! So exciting to see! He also worked on pulling to kneeling position and while it wasn't his favorite skill, he began trying it by himself later that night. He pulled him self up to his knees to see in his toy basket! He has also started moving his legs and leaning onto his arms in a way that looks like he could pop up and crawl! He isn't ready to crawl yet but the progress he has been making, keeps me hopeful! On Tuesday Kyler had his ears checked to see if they had fluid and were clear enough for us to go through with the scheduled hearing test in KC on Wednesday. When Kim came out to check them, Kyler wasn't very happy with her messing with his ears so she didn't get the clearest of readings. I ended up taking him in to the office after work and they checked them with the big machine and they were clear! It was the best results he has had for them! After he flirted with the ladies a little bit, we went home and started getting things together for his appointments in KC. Wednesday morning came and we headed out, through the rain to the hospital. It rained the entire way there and at times we weren't sure if we would make it to our appointment on time. Ultimately we made it 10 minutes to spare. We got taken back to the sound booth and started the test. It started out pretty well and he was reacting well to the sounds. Then he started to get silly. He was trying to play so we tried sitting him on the chair with me in front and his nurse behind him. He was trying to play peek-a-boo and was just not focusing enough so I held him again and we finished the test. He passed it! His hearing at this point is normal! I was so happy to hear that because I thought for sure he would need to get tubes from all of his fluid he's had. Now that the hearing test was over, we headed to the Ronald McDonald House to drop off pop tabs and some donations we were given to take to them. Next we stopped for lunch at a little Mexican restaurant called TeoCali that is right next to the hospital. We then headed to the hospital and had some time to waste. We ventured up to the 3rd floor to stop by the Fetal Health Center and say hi. We keep trying to catch Dr. Burke who delivered Kyler but haven’t been able to catch him. He wasn’t in again when we stopped by. As we were about to head towards the appointment we saw Robin, one of Kyler’s team from the NICU, headed our way. We then got to visit with her for a while and catch up. She was happy to see Kyler looking so good! Next we headed toward the elevator to make our way to our next stop. As we waited for an open elevator, we heard “wait wait wait” and turned to see the receptionist chasing after us. It turns out Dr. Burke just happened to come through and they stopped him and then chased after us! So we finally got to get a picture of Kyler with Dr. Burke! We visited with him for a little about Kyler’s glasses and how his own son was tested with the machine that told us he needed glasses. Dr. Burke is a funny guy! After our chat, we checked out the gift shop and also saw Michelle, the NICU nurse practitioner on surgery team. Finally we made it to our scheduled appointment. It didn’t take long to get called back. After getting vitals, we got to see Kyler’s team. We went over how he was doing and they did their assessments one him. They had toys and such for him to play with and were watching for those developmental skills or delays. The main things that were discussed were feeding and oxygen. Kyler has still been on 1/2L at nighttime only and just room air during the day. They were surprised he was still on that much oxygen at night and we told them how his pulse ox machine still goes off a lot a night. In order for it to go off, he has to have his oxygen sats drop below 90 and they want him at 94% or better sats. They were worried that he was still on that much because he could become dependent on it if he isn’t really needing it. We also told them that we didn’t feel like our pulse ox was accurate because it will go off and say his oxygen is at 85 when he is perfectly happy and oxygenated. With that we planned to get a new machine to make sure we can tell if he is really needing more oxygen or not. I also shared how he is a mouth breather and I wasn’t sure how much of the oxygen via nasal cannula was getting to him anyways. The hope is that he can get weaned off the oxygen completely this summer. We also talked about his medications. I wanted to know if we could take him off them yet. Especially the reflux med. He hasn’t been vomiting as much and with the surgery, I didn’t think the reflux medicine was necessary. They agreed with that so we have gotten the reflux medicine discontinued! The diruil they want him to outgrow so he is still on that one but it did get reduced to once a day. The other big thing we talked about was his feeding. I shared how he was taking some orally now. Then we also talked about the conversations we’ve had with GI and people they referred us to. They suggested getting him set up with Pedisure when he turns 1 since he will have to come off infant formula. I mentioned the blended diet again and there is a commercially made option. The surgery lady had heard of it and knows of other tube fed kids on it. In the ended we decided to hold off making any decisions about his feeding plan until after we meet with the feeding team for that evaluation. We also talked plans for Kyler’s next surgery which was schedule for early June. We have now moved it to the end of the month so that we can coordinate his next NEON appointment and required pre-surgery appointments on one day with the surgery to follow the next day. Another good point of the appointment was that Kyler has been gaining 11g per day since the last appointment and the want to see 8g. So he is gaining more than they need him to but they still consider him underweight. I put his height and weight into a tool the doctor at the last GI appointment gave me, and it said his height to weight is in the 21%ile which is what I feel like we should be looking at versus just his weight. We had one final stop at radiology before we could head home. They needed an X-ray to check his lungs. Finally we were on the road again traveling through lots of rain once more. There was so much water on the road getting kicked up by cars that it was like driving through a cloud. At times visibility was pretty low. Today Kristen(the surgery lady on his team) called to let us know that his X-ray looked good and they were able to confirm the new surgery date in June. We also got a different oxygen monitor to try out and see if it reads any differently. I have been so excited to see Kyler’s progress and it seems like he makes a lot of progress in a short time and then hangs out for a while before making more progress. Tonight during his bath he pulled himself to kneeling in the bathtub! This doesn’t sound like much but when I consider that he was in an infant tub with uneven floor(it has supports built in) and that it was slick, it’s pretty impressive for him! Now we await May 14th for the feeding evaluation. It’s two weeks away but that time will fly by.
We have had some exciting things happen since our last update. Kyler got to experience his first Easter and while he didn't hunt for eggs, he did get to spend time with family! He and his cousins had fun playing together! On the physical therapy front, he has been movin' and groovin' all over the place by rolling mostly, so much rolling that sometimes he gets himself stuck when he can't roll out of where he's moved to. We are wanting him to roll to his belly and then pivot side to side to reach toys. Instead he just keeps on rolling and rolls over it or way past it. He has been giving Shayla a hard time during his sessions with her. He smiles at her and hams it up until she starts making him work, and then he starts crying big crocodile tears. He has been wanting to stand up a lot. He will help pull to stand and is even starting to stand by holding on to the couch or other object at the right height. He is also dancing! He will wiggle his body when we say "dance, dance baby dance, dance!" Kyler has started to really show or rather tell us when he doesn't like something. He will let out a pretty good yell when you take away something he has(like the syringes and tubing). He has continued to be a drooling machine and had his 4th tooth pop through but then it went back up just enough that its not sticking through. I think maybe his gums are really swollen from it. The interesting part of this news is that it is a lateral incisor instead of the other front tooth! We had a few nice days recently that allowed us to go outside finally! We took an opportunity one evening to sit on the porch swing and watch brother and sister play in the yard. Kyler was very excited about the swing and was trying to get it to rock while he was on it. He got another outside experience on a nice but windy day when we went to watch cousin Haylie play a softball game. We were able to rig up our wagon and used the canopy to attach a blanket, which created a nice wind block. Kyler liked being outside and seeing some new sights. In the last week we also go to help celebrate his Godmother's birthday! He also got to spend some time with Great Grandma and Grandpa and showed them how good he could share his toys! It was super cute watching him pass his toy back and forth with Grandpa! All of that was fun but the two most exciting parts of our week have yet to be told! First the shirts we ordered arrived and look amazing! We love them so much and can't wait until Thursday to wear them for International CDH Awareness Day! A huge THANK YOU to everyone who got one and we hope you are able to wear it on Thursday. If you can't wear it Thursday, anytime in April is awesome! I am asking that if you would send me a picture of you wearing yours, I would like to put them on here to save and show Kyler how much love and support he has! We do have some extra shirts incase you didn't get one and would like one! The second exciting thing that happened, and even more exciting than the shirts is that Kyler started eating purees by spoon!! Friday the 13th(not so unlucky after all :) ), Kyler was offered some sweet potatoes for lunch with Kalisha(his home health nurse). He ended up eating 16mL for her! This was great for him! He hasn't been too keen on purees and usually just spits them out or straight out refuses to open his mouth. I had come up with an idea to get him comfortable with the spoon and we transitioned into getting puree in his mouth. We started by just putting a cereal puff on his spoon and getting him to take the spoon in his mouth with the preferred food. After a while of that we kind of tricked him into taking some puree by first getting some on the spoon and then placing a puff on top. He would study that spoon hard and then decide he wanted the puff so he would open and take the puff and puree in one bite. Finally he was willing to take bites of puree without a puff on top! I am so thankful I have a background in special education. I believe it has given me a different set of tools to use when working with and trying to help Kyler make progress in his areas of delay! Then Friday night he ate 20mL of sweet potatoes but he didn't stop there! He also ate about 7 cereal puffs, 7 baby cheese puffs, and 10-15 bites of my ice cream! I am so proud of him! That was the most he had eaten orally since he was in the hospital(early on even), and he didn't gag or throw up once. He seemed truly interested in eating! This meal was later than normal and it got me wondering if we need to cut back on his tube feedings to try to get that hunger to kick in now that he's starting to do more orally. With him eating so late and way more than I thought, I only gave him a half feed of formula and used a syringe to push it through. I didn't want to give him a full feed and have it make him too full where he vomited everything he just ate. I then set my alarm for 1 am to turn on the pump for his regularly scheduled feedings. Well that didn't quite work out and I ended up sleeping through the alarm and didn't wake up until 6am(2 missed feedings) to Kyler fussing. I think he was actually hungry for one of the first times in a long time. I started his feed and we both went back to sleep. In the morning I waited a little while past when he was scheduled to eat since I had fed him an hour late at 6am. I offered him food and my amazing little man ate 52mL of puree!!!! That is almost 2 ounces of food! Again, I was thrilled with him! We decided to kick the schedule for the weekend and see what happened. Each time I offered him food to eat, he ate around 15-25ml of food. His success eating depended a little bit on if he was tired, how distracted he was(siblings are fun to watch but not so great when you are trying to get his attention to take a bite!), and how long it had been since his last amount of food. Overall I think he did really well and was quite proud of himself even. I got nervous about getting formula in him for hydration purposes since he won't drink by mouth yet so I ended up giving him formula via his G-tube in between oral feedings. I know he needed it but I also think that made him less hungry and effected his desire to eat. We have his food amounts recorded and will be able to take that with us on May 14th when we get to go to the feeding clinic at Children's Mercy(that appointment got scheduled and was quicker than we thought it would be). I was able to get some good videos of him eating to take with us like they have requested and I am hoping that he keeps this forward progress going and can just wow them when we show up! Now we continue to work on trying to build up his stamina and speed of eating so that we can get a swallow study done(he has to take 30mL in 10 minutes) and we await his next check up on April 25th with the NEON clinic. Though there were some exciting times for our family, our community has experienced a great loss. A friend of ours was called home to Heaven after 6 years of showing cancer what strength looked like. Our friend Tammy was an inspiration and an amazing person and this week we will celebrate her life and the incredible impact she had on everyone who met her. Please say a prayer for the Thaxton family and friends. The last two days since returning from spring break have been exhausting! Monday after work we headed to a local shirt printing company to get ideas on a fundraiser shirt for Kyler. After discussing options we submitted our design and are now in the process of taking orders. After that I hurried home to check on Kyler and how he behaved for the substitute nurse. He was a good boy and she was impressed with how much he's changed since she last saw him(back in December). The rest of my evening was spent finishing up gathering what I thought I needed for taxes and snuggling the sweet boy. While I was playing with him and leaning him way back, I noticed a patch of white on his upper gum. His 3rd tooth broke through! Today has been pretty busy and tiring as well. This morning started with Kyler being really fussy, not really his m.o. As I snuggled him before I had to leave for work, I thought he was struggling with that tooth and asked Mike to mention it to the nurse when she got there so she could give him Tylenol if needed. At work my caller ID popped up with a Children's Mercy number. It was someone calling to get us set up with the Interdisciplinary Pediatric Feeding and Swallowing Program that GI referred Kyler to last week. I was surprised to hear from them considering we were told there was a long wait list, I had assumed it would be this summer before we heard from them. The lady on the phone said that she would be sending me an email with a survey to fill out and then once they have the survey, they will call back and schedule his first appointment. I gave her my email and continued on my day with plans to fill out the survey tonight. After work was over I quickly left and met Mike at the Tax preparer's office to get our taxes done. There were just a couple things I didn't have with me, like the kids birth certificates which the IRS are now requiring. At home I began pulling out the kids' certificates and realized we never got the corrected copy of Kyler's. The one we were sent after his birth has my maiden name misspelled by one letter and I had requested that the hospital correct the error and resubmit for us. I was told they would but had since forgotten about it and have never received the updated one, so I will be making some phone calls in the morning and trying to get that sorted out again. As I got the report from the nurse as she was finishing her shift, I found out Kyler is running a temperature of 99.5 and slept most of the day. I am hoping it is just teeth because along with the one that just broke through(and is still coming down), it feeling like another on the bottom isn't too far behind. I am a little suspicious that it could be another ear infection since last week at the hearing test he had fluid in his ear. I have asked Kim(ICD nurse) to check it out when she sees him tomorrow. After starting his 5:00 feed, I snuggled him up and he was defiantly warm. After a dose of ibuprofen and some rocking, he was fast asleep. I laid him in his crib while we ate dinner and he didn't wake back up until 8:45. I may have a long night ahead of me. In addition to him sleeping, Gunner fell asleep on the couch in the 10 minutes it took me to finish dinner and set the table. Apparently we need to catch up on some sleep around here. With diner done and the kids in bed, I started in on the surgery from the feeding clinic. It started off with me filling in most of Kyler's medical history(this part I felt was a little silly since all of his major services have been done at CMH and the minor things have been shared with them). I was about 1/2-1/3 of the way done and my browser timed out due to the large memory usage(I didn't even know it could do that). Of course I hadn't scanned all the way to the bottom to see the "Save and return" button. Lesson learned. So I started again, this time saving and returning every so often. A couple hours later, yes I said a couple, I finished the survey. I wanted a record of it so before submitting, I saved it to my computer. The final document was twenty-seven pages long...27! Whew, I am glad that is done! After the surgery was submitted, it said we should be contacted within a week to schedule the appointment. In the original email with the survey link, there was information about the 1st appointment which is an evaluation. It said that we should expect for the appointment to last 2-3 hours and that the Multidisciplinary Feeding Team consists of a medical provider (physician or pediatric nurse practitioner), speech pathologist, dietitian, occupational therapist and psychologist. They will watch him attempt some feeding and do an assessment, then they will step out and discuss him and what they saw. After that they will return with suggestions and a plan. We were also given a list of things to bring which basically included any and all feeding tools or foods that we use with him. We were also asked to bring medical paperwork, early intervention paperwork, and videos of him feeding at home. Now we wait to get the appointment scheduled.
As I mentioned before we are taking orders for the shirt for Kyler's fundraiser. The shirt is $15.oo and all proceeds will be donated by Kyler to Children's Mercy for his 1st birthday. If you are interested in ordering a shirt you can do so by clicking the link. Order Shirt Here We are having a fundraiser for Kyler's 1st birthday. He will be donating the proceeds to Children's Mercy Hospital. April is CDH awareness month with April 19th being International CDH Awareness day. We are taking orders until April 5th so that we can get them out before the 19th! Please check out the link below to place an order!
https://goo.gl/forms/ghzxJi9aNh4BvJbB3 It has been a couple weeks since the last update and not too much has happened during that time. To start with, Kyler received his last RSV shot for the season. The nurse said that she was hoping insurance will extend the season so that he can receive a little more protection because they are just now seeing a peak in the RSV cases. Unfortunately that isn't up to the doctors offices, it is what insurance says, so we are just assuming he is done for this year unless they contact us and tell us differently. We made it to spring break and kicked it off with a weekend full of family. Baby Lee came to town so we got to spend some time with him and the rest of the family and on the 17th we celebrated Liam's 1st birthday! Kyler had a lot of fun playing with the balloons and showed a new trick off. He is now making kissing sounds to people and it is incredibly adorable! We then got to spend the day with family and ended the evening enjoying food and playing cards. Kyler and I even took a quick trip to a friends house to wish her happy birthday as well! The first weekend of spring break, Kyler turned 10 months old. He is rolling to get to toys he wants and is signing "more". He is also "tasting" more foods. If he can hold it, it will go in his mouth. He has thrown up some from getting pieces too far back unexpectedly, but he is really showing an interest in eating food! To end out the weekend, we took a trip to visit Great Grandma Hargadine in Little River. We haven't been able to see her in a while due to the nursing home having a lot of illness and they were finally clear. Grandma had fun seeing Kyler and the kids! The next week started out with messing around the house, taking care of things that have been put off for a while. Then Kyler had PT. He showed off his rolling skills but then he had to work on pivoting to get to toys instead of being a roly-poly! What we want to see him do more often is roll and then moves his arms(while pushing up on them) and the rest of his body to turn to get to something instead of rolling again to crash into it. Next up for our week was heading to KC for Kyler's appointments. For these appointments, Jaida and Gunner were getting to go since they weren't in school. They were pretty excited to get to go to the hospital. We loaded up and headed out around 7:30 am. We arrived and got up to the first appointment which was with GI. This was the appointment we weren't looking forward to because of the issues we had the previous week. When we got into the appointment, we didn't get to see the doctor. This was disappointing because we wanted to speak to him about the medication issue, not a nurse who was just joining in on Kyler's care. We ended up speaking with a nurse practitioner for the appointment. We brought up what we were upset about and she then explained what the medications were for and why they were prescribed. One was prescribed because even though his test was normal, sometimes there can still be delays in emptying. The other was prescribed to help with the stomach relaxing to accommodate more volume easier. We ended up not doing either of the medications because he hadn't been throwing up much, and what he has been throwing up seems to be caused by congestion and drainage. I also brought up my desire to do a blended diet over a toddler formula when he turns one(in 2 short months). The nurse practitioner thought that sounded okay and said that they could have a dietitian contact us because we could probably start trying some out. They also decided to put in a referral to get him on a feeding team for another set of eyes to help with his nutritional needs. She also said that the team could communicate with local people since he would only be seen by them every 3-4 months. There is a pretty long wait list so its possible he doesn't get in with that team until this summer. His measurements at this appointment showed he is weighing 7.695kg (16lbs 15oz), he is 69.5cm(27.4 inches) tall, and his head is 46cm. Next up we had some time to kill waiting for his hearing test so we visited the 3rd floor and saw Dana, and a couple others briefly before heading to grab lunch at Subway(except for Gunner who was dead set on having chicken strips from the hospital cafe). After we had lunch, we headed to the outpatient clinics to have the hearing test done. Mike and big kids stayed in the waiting room and I took Kyler back into the booth. The first part of the test was the tech using a machine to check for fluid and measuring some levels. This test showed that one ear wasn't reading and the other had some fluid. The tech wasn't sure if the test would work based on those readings but we went ahead and gave it a try. She went to a connected booth to control the test, and I had Kyler on my lap. It didn't take very long before I suspected he wasn't passing. I was hearing noises and he wasn't even reacting in anyway to them. Sure enough she came out an explained that the test was showing mild hearing loss but she wouldn't be surprised if that was due to the congestion and fluid in his ears. We made a plan to reschedule for when we go back to KC in April for Special Care Clinic and re-check them then. I mentioned that Kim(ICD nurse) could check his ears like she did before starting the test and she thought it would be good to do that a day or two before the appointment. If the test shows he still has fluid, then we will cancel the hearing test and be referred for ENT. I would really not be surprised if he still has fluid and needs tubes. Gunner needed them and was only hearing about 40% at the time he had his placed and he is just planning on getting his removed in the next month after a few years! With the appointments done, we had a good chunk of time to spend while waiting to meet up with my friend Brandi for dinner. With the weather being a little chilly with some sprinkles in KC that day, we decided to go to the mall for a while before finding something fun for Jaida and Gunner to do. Jaida and Gunner had fun riding the carrousel in the Oak Park Mall. Then Jaida and I enjoyed some nerdy fun checking out Harry Potter and Doctor Who merchandise in a store called Box Lunch! I ended up getting a few new pieces to my wardrobe which was difficult, because I really don't like buying clothes! After we finished shopping, we took the kids to Monkey Bizness. We had gone to one in Colorado a couple years back and the kids enjoyed it. This one was smaller but there was still plenty for the kids to do. We ended up spending a couple hours there and Jaida and Gunner went full speed the whole time. Kyler was the only baby there at that time, so he got the whole infant area to himself. That was nice because it was feeding time so I was able to hook him up and he could play and roll around without worrying about other babies around(germs and cords)! We had a 40 minute drive to meet Brandi so we finished up and headed out. I was glad for the longer car ride because I had two tired children who really needed some kind of nap and the car ride was perfect for that. We actually made it quicker than the GPS said so we waited in the car for a little extra rest. Soon it was time for dinner and it was so nice to see Brandi and Abe. After a delicious dinner, we hit the road home. It was around midnight before we got home and I was so thankful for getting to sleep in a little bit on Wednesday morning! We started the morning with cleaning Jaida's room. This involved going through her clothes and getting rid of things that no longer fit, as well as finding a place for all of her things. We worked on it until the afternoon when, Jaida and I went to her 7 year old check up. She is weighing 48 pounds and is 46.4 inches tall! After her appointment we stopped by to pick up some medical supplies for Kyler and then went to the store. It was fun getting to go with just her, we don't normally get just girl time together. The rest of the day we spent finishing cleaning and organizing Jaida's room(it was so messy) minus some time we took to go help my dad and then have dinner with him. The next day it was Gunner's turn to get his room cleaned and organized. Luckily his took only a fraction of the time and we finished pretty early in the day which allowed me to get started in the basement. Jaida got to spend a few hours at a friends house playing. I have decided to have a garage sale and so I pulled out all of the boxes of clothes I have had stored and put them in piles of things I want to save for keepsakes, things for Kyler to grow into, things to save for my best friend, and things to sell. I made a giant mess in the basement and after making the piles called it quits for the day. I was exhausted from all the organizing and cleaning from the last two days! Friday Jaida had a friend over for the day and we mainly just hung out around the house. The girls did a pretty nice job of including Gunner and letting him play with them! Kyler spent most of his time with the nurse who was here most of the week. We won't get to see her for a while because she is taking vacation for the next week and we will have a replacement nurse for that time. Luckily the nurse that is filling in is one who we had for a few days after we had to fire the first nurse. The home health lady who called to set up the replacement told me that once this nurse heard who it was for, she said yes before ever hearing the hours and days needed! Kyler is loved by so many! After dinner Jaida and I had a date to watch Moana and make some shirts, Gunner ended up joining us for the movie! I made the kids each a Gryffindor Quidditch shirt and I made me a shirt to wear next time I play cards! Saturday we hung around the house and had a couple visitors. Jaida and Gunner got to play with Harper while the moms went through clothes and I even got them organized thanks to Cheryl's help! Then we got to see Miranda also! We finished our night watching the KSU basketball game. Today was pretty busy. First we had Palm Sunday with Gunner's preschool. He got to sing some songs and then we had a lunch and Easter egg hunt. Kyler was pretty tired and ended up sleeping through the whole service, even with loud songs playing! After church, we had a home visit from Amy, who is Kyler's case manager through medicate. We had to update his paperwork and talk about his goals for the future. After we were done with that meeting, we started getting things together for taxes. This year we have a lot of stuff to put together with all of Kyler's medical stuff. One thing I had to do was go through and figure out mileage for all of his appointments. That took a while but thankfully our final NICU nurse, Carol, had told me to keep the NICU logs to use for figuring out trips for taxes, that was a huge help. I also was able to pull up appointment history from all of our providers to get the rest of the trips. I just finished getting what I could get together now and will be glad when its all turned in. In other news for Kyler, he has been vomiting off and on again. I think it may be due to congestion and drainage but it could also be due to the increase in volume I gave him. When he was keeping stuff down, I was able to move him to a 30 minute feeding time instead of an hour. That has been nice since he is now rolling, he gets tangled up pretty easily. I knew that the doctors are looking for him to gain more weight so I went ahead and upped his feeding volume by 5ml each feeding. This basically gives him an extra ounce each day. He has been vomiting some since making that change but again, I am not sure if its the volume or the congestion. We slowed is feed time down to 40 minutes and that has helped some but it doesn't help all the time. I think we might just have to deal with surprise episodes of vomiting. I am still hopeful that once he starts a blended diet, that the heavier foods may help reduce the vomiting more still but time will tell. One thing we are looking forward to is that April is CDH awareness month with April 19th being the international CDH day. We are looking to make up shirts to spread awareness and possibly use it as a fundraiser in which Kyler can donate the profits for his first birthday. We are looking to donate to either CMH or Ronald McDonal House. Along with that he will be donating his clothing that is designed for wires and tubes. When I went through the boxes of clothes in my basement, one pile was made for side snap onesies, pajamas that button, and other clothes that we would like to donate for the babies in the NICU. I am hoping to get the shirt design and ordering figured out this week so that we can get the shirts out to people in time for April 19th but more information will be coming on that as soon as I can. We are set to go back to CMH on April 25 so until then we will enjoy a month of no appointments, and start the countdown to his 1st birthday! One more thing to add! Kyler is featured on the CMH website for our flight from Salina to Children’s Mercy! Here is the link! https://www.childrensmercy.org/fetal-health-center/taking-flight/ Last Monday I awaited a call from KC to find out if Kyler was going to get to have the gastric emptying study done. By 10:00am I had not heard from them so I decided to call. The first lady I was able to speak to in radiology was able to get Kyler on the schedule for the following day when we were going to be down there. Thankfully it wasn't quite as early as I was told from the other lady I had spoken with! He was on the schedule for 8:30am which meant we only had to leave around 5:30 am instead of 4:30am! Monday afternoon Kyler had his physical therapy session and we met with the case manager for his ICD services to resign and update his IFSP. This is done every 6 months and Kyler has already gotten services for that long. Kyler wasn't too excited to work for Shayla. He was working on his core muscles and control by sitting on a stability ball. He worked on reaching across his body and trying to transition out of sitting by putting an arm down for support. He also worked on tall kneeling by wearing some support shorts that help him hold his hips together instead of them spreading way out. While updating his IFSP we had to set the goal for him for the next 6 months. We aren't very sure he will crawl with such a big noggin and weaker neck muscles so his goal is set to be pulling to stand independently and working on him cruising around the furniture. After we were done with that session we started getting the things together to head to KC in the morning. Since we weren't staying the night, what we had to take was drastically less but I still have to make lists of everything he might need, just in case. After loading up as much as possible the night before it was time for sleep. Unfortunately I wasn't able to get to bed very early since I had to wait to start his night feed and then get him rocked to sleep so 5 am came very early for me. We loaded the baby up in his jammies and I took a pillow and blanket and we headed out. Thankfully Mike does much better than I in early mornings and little sleep because I was able to rest on the way there while he drove. We arrived about 30 minutes early and didn't have to fight much morning traffic. We got Kyler changed into some clothes and made our way to get checked in. I was obviously very tired because I couldn't press the correct elevator button to get us where we needed to go! We got Kyler checked in and he was called back. They gave us a gown for him to wear and we gave them his formula. They started by mixing 60ml with 10mL of the radioactive fluid that would be used to see the movement of the formula. Next they pushed it in with a syringe while Kyler laid on the table. They pushed the full amount in within 10 minutes. I was worried that he might vomit with it going in so quickly but he handled it just fine! Next they wrapped up his right arm and tied down his legs so that they would be able to get the pictures clearly. They left his left arm out so that he could hold his pacifier. I was pretty impressed with how well he did with being tied down(I wouldn't have done so well myself). They told us that this test would take an hour and if he vomited, they would have to stop the test. I was not sure how he would handle being stuck in that position for a whole hour! They got him in position and I was able to sit right beside the machine and talk to him. He spent a while playing the dropsy game with his pacifier, singing to himself, and using his free hand to explore the part of the machine he could reach. About half way through he started to get a little fussy so I asked for the lights to be turned down and I sang to him and rubbed his head. He fell asleep and stayed asleep for the last 20 minutes or so of the test! He is such a champ and handles things so well. After they were done we were told that we would get notified of the results in 24-48 hours. The tech said that they would send the images(it took one per minute for the whole study) to a radiologist who would tell the ordering doctor what they read and then the ordering doctor would call us with the results. The order doctor in Kyler's case was his GI doctor. We then had about 45 minutes until his next appointment with surgery and it was too early to eat lunch so we took a trip the 3rd floor to see if our friends were free to say hi. Dana was free and we got to see her along with a couple other people who recognized Kyler from the calendar he is on! We also got to see one of the ultrasound techs that did the scans before he was born. It is fun to get to go back and visit with those people who were part of Kyler's team in the beginning. We were asked about being support people for other families and we agreed. Now we just wait to see if any families want to visit with us about our experience or to have someone to ask questions and get information that might help them. Next we headed across the hospital to the surgery clinic. Again, super tired, I pressed the wrong floor. We made it eventually and got checked in. Two nurses came back at the same time and called for Skyler and Kyler so after a chuckle we went with the assigned nurse and taken back to a room. They took Kyler's weight and he was 16 pounds 4 ounces. Not quite the weight gain I expected since he hadn't thrown up for a half a week. When the nurse practitioner came in she checked up his incisions and they all looked good. His testicle was down and palpable. We talked to them about how he was still puking after the surgery but we had the test done in the morning and he hadn't vomited in about 4-5 days. Then we talked about the surgery to bring Kyler's left testicle down. They proposed sometime in August which I promptly said wouldn't work. I asked if we could do it over the summer so I wouldn't have to miss work for it and they thought that would be okay and said a scheduling person would be in touch with us. We loaded up and headed out of there. We decided to stop in Topeka on the way back for a bite to eat and I was excited that Kyler took a couple small bites off my fork at the restaurant. The rest of the week went by pretty fast. At one point my Facebook "On this day" popped up a reminder of 5 years ago when Jaida had turned 2. At 2 years old she was 21 pounds. That is only 5 pounds heavier than Kyler is currently. I saved a screenshot so I can show Kyler's doctors so they might believe me when I tell them I don't have large babies and they are concerned about his weight! The end of the week got a little interesting. I kept checking the patient portal looking for the results but the study was saying "pending until March 9th" under the radiology tab. While I was looking, I found the notes from our meeting with surgery and read them over. When I opened the document I noticed it looked different and then at the very bottom I saw where the results from the study were listed. According to what I read, his emptying was normal. I was expecting a call from them to explain the results to me and to confirm what I had read. Friday morning we had passes the 24-48 hour time frame we were given for them to be calling and giving us the results but my phone rang during a meeting at school and I excused myself to answer, expecting it to be the test results. It wasn't. It was a lady from the GI clinic wanting to know if I had seen the patient portal message. Since I had been on there yesterday and there wasn't something, I assumed she meant a new one. I told her no and she said that Dr. Cocjin said we could trial him on a medicine or he could come in for an emptying study. I stopped her right there and informed her that he already did the test and we were waiting on the results. "Uh. Umm. You already did the study? Ok. I am going to have to have someone call you back." I was in disbelief. I couldn't believe they didn't know we had done it. We talked to a nurse last week who had the doctor put in an order for the test(otherwise he wouldn't have been able to get it done) and they didn't know we were done when we should have been given results already! I didn't hear anything the rest of the day from KC. I was getting ready to leave work when I had a text from Mike telling me to call his ASAP. He had received a call from our pharmacy for a new medication for Kyler but he didn't know about it so he was wondering if I had talked to KC. After explaining to him the call I had gotten that morning I called the GI clinic and tried to find out what this medicine was. The person I spoke with couldn't tell which the new medication was out of his list, and I didn't know the name of it so they asked if the pharmacy could tell me. I hung up and called the pharmacy. They were able to give me the name of it, and it was something I hadn't heard of. I was expecting it to be the medicine for delayed gastric emptying. I asked who prescribed it and was told it was Dr. Cocjin and then I asked was it was for. They told me it was for allergies. I was now annoyed and confused. I had no idea why they would prescribe him something for allergies and I was annoyed that they didn't talk to us first. I called back to the GI clinic and ended up having to leave a message. I asked what this medicine was, why wasn't it discussed with us, and let them know we were still waiting on hearing the results of the test. 30-45 minutes later I got a call back and it was a nurse in Dr. Cocjin's office. I probably was a little short with the nurse but I was pretty upset by this point. I asked what it was and she told me it was an appetite stimulant. WHAT?! is what I was screaming in my head. Then the nurse said "nobody has talked to you about this?" No, I wouldn't be ticked if we had discussed this with the doctor. After hearing this and after I said that we still didn't have the results of the test and the nurse said she would have someone call us but it probably wouldn't be today since it was so late in the day. I had now been told it was an allergy medicine and an appetite stimulant, neither of which made sense and I still had no idea why it was prescribed. In addition we didn't have the official results of the test. I was getting more annoyed and upset as time went on. Our home health nurse was just as confused and so I called his ICD nurse. She too didn't understand the medicine for an appetite stimulant. 1st off, Kyler doesn't get to choose when he eats so his feeds aren't based on hunger cues so that wouldn't help anything. 2nd, some of the ICD nurses other g-tube babies are on an appetite stimulant but they are in the weaning process and actually eating food orally. Nothing was making any kind of sense and I just was getting mad that we found out about a new medication from the pharmacy and that we weren't at all included in the discussions for any of it. Over the weekend I was able to let it go and knowing that we would be seeing his GI doctor face to face over spring break to discuss this helped. We ended up taking Kyler out to a restaurant to see a whole bunch of my family that was getting together. It was fun to see everyone and Kyler got some love from some family he doesn't see often. At one point one of our cousin's took a picture of him being held by her son and overtime she showed the picture to Kyler she smiled the biggest smile. It was so funny! The rest of the day was spent at home laying around playing. On Sunday we had some friends over. Jaida and Gunner got to play with their son Brody while we chatted. It was fun to get to be social for once in such a long while. After dinner on Sunday, we made a quick run out to Aunt Robin's house to see Britney and baby Lee. It was fun to see the boys together again. They were practicing sharing toys! This morning I got a call from KC but missed it so I called back and had to leave a message. Finally a couple hours later they called again. It was nurse telling me the results of the test and that Dr. Cocjin prescribed the medicine for Kyler's vomiting. I was told the results showed normal emptying. I told the nurse that we were pretty upset that this medicine was prescribed without someone talking to us and that we were supposed to hear results after 24-48 hours and it was five days later and we are just now hearing. Then she said the results weren't available until Friday and thats why they were calling now. I didn't call her a liar but I wanted to because I accidentally saw the results last Thursday! I that since nobody has followed up with us for us to be able to tell them that Kyler hadn't thrown up in about ten days. Then she said "well then I wouldn't give him the medicine." I had to hold back and not yell but I told her in a not so happy way that I would not be giving him any medicine since I had no idea what it was or what it was for. She just said she understood and wanted to know if there was anything else I wanted put in the notes. I said no and we ended the call. I am just flabbergasted at the GI clinic. From not knowing he had the test done(even though they ordered it) to prescribing him a medicine(which I was told 3 different reasons for) and especially for not being notified or consulted on adding a medication and us finding out through our local pharmacy! Since Kyler was still vomiting after the fundo, I really started thinking more and more about doing a blended diet with Kyler. That is where we take "normal" food and blend it to a consistency to push through Kyler's G-tube. With Kyler coming up on one year soon, he will have to switch off infant formula and I am really interested in doing a blended diet over a toddler formula. Kim, our ICD nurse, has a contact who is a RN at the same pediatricians office Kyler goes to and has personally used the blended diet. I am wanting to meet and get more information soon so that I can be prepared to start it with Kyler when it is appropriate. Now that we have the test done and it was normal, and Kyler isn't vomiting for the most part, we are now just doing our daily thing until our next appointment on the 20th. We will meet with GI and that isn't going to be the nicest of appointments as we discuss and share our displeasure over the situation that happened. Then we will take Kyler for a hearing test. He will be routinely checked because he is at high risk for hearing issues. He is now old enough to attempt the hearing test in the booth. I don't anticipate any issues since he will turn at look at all sorts of noises around home. We are counting down the days until Spring Break starts and we get to have some "stay home days" together. |
Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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May 2020
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