Life happened, time flew by, and I am finally getting around to update on our journey. Since school started Kyler has been working of his physical therapy skills and of course the feeding. In physical therapy, he has been working on walking. He was doing well with the cruising and even started taking a couple steps(September 24th)! He ended up getting a walker(September 27th) to get his more upright and help get him used to being up instead of crawling all the time. He likes his walker and even went for a long walk down the block with it on October 11th! Since then he had been walking pretty well with the walker and then he started boycotting walking. He would flat out refuse to walk except for cruising. I started to worry that maybe I was pushing him to walk too hard. After a little over a week of refusing to walk, he finally started walking some with Great Grandpa and now he has slowly been working back up to it. He will do it most often with brother and sister holding his hand but I now letting mom and dad back in the game! In just the last week or so he has started to do a lot of standing and is quite proud of himself(and I am proud of him too!). He is even dancing a little while standing unassisted! This gives me hope that he is getting more comfortable with his body control and can start making progress on his walking. I am so ready for him to get walking so he can keep up with his siblings and cousins. Since he still isn't walking, we are being referred to an ENT to just make sure everything is okay there. His history of having fluid in his ears could be interfering with his walking skills among other things. Today he also got SMOs which stands for Supra Malleolar Orthosis. SMOs are basically ankle and foot orthopedic supports. We are giving these a try to see if they will help with his walking as well. Kyler was not a fan of them initially but did better with them as he wore them more. We will see how he does after a week of using them! Physical Therapy has been rough lately. Kyler has been asserting his independence and has not really wanted to cooperate much during his sessions and is giving Shayla a run for her money! He is a stubborn little dude and has figured out that he doesn't have to do what we are trying to get him to do. We have pulled out as many tricks as we know to get him to do the work and he just won't. Luckily he will do the work on his terms at other times so he is still working on those skills! Feeding has been an interesting set of events these last few months. Labor Day weekend at the lake ended up being a little bit of a catalyst for Kyler, even if we didn't know it at the time. We spent the weekend at the lake like normal. Saturday morning I ended up sleeping in while my mom got up with the kids. The big kids were hungry and got out donuts and other breakfast items from our camp and this prompted Kyler to want some too. He ended up eating powdered donuts with them! After I got up, I checked to see about feeding him and found out he had eaten quite a bit so I chose to skip his morning feeding so that I didn't make him puke from getting too much. The rest of the day and weekend continued and he was eating decently and I was only giving him half a days worth of Nourish through his tube to make up his calories. After seeing how well he did for the weekend I decided to try a little bit of a wean. I had read many stories from other families who have tried weaning or had weaned and the large majority of them had said they never saw their child "take off" until they cut the tube feedings by 50%. Now most of the time you cut 30% and then move 50% next but I figured if the other families didn't see any difference at 30% cut, why not jump right to 50% and see what happened. We had two weeks until our appointment in KC with feeding clinic and I thought that would be a good trail time to see how he handled it. So I instructed his nurse to only give him 80mL instead of the 165mL of Nourish he had been getting. Kyler was doing pretty well with it! I was excited! Next up was our appointment. I had already made up my mind that we were going to keep doing the 50% cut and I wasn't going to let them tell us to put him back on full tube feedings. Mike thinks I am crazy sometimes(and sometimes I feel like I am!) but I like to be proactive instead of waiting every 3-4 months for them to "let us" change something. Anyways, we get to KC for his appointment and had a cooler full of food ready to feed him. We purposely held his feeding to make sure he was hungry and ready to eat. After talking with the feeding team for a few minutes, I asked if I could start feeding him so that he wouldn't get too cranky and not want to eat. He ate, and ate, and ate! He ate a variety of textures(Alfredo noodles, goldfish crackers, cheese, cookies) and he even took some drinks from the 360 cup. I shared with them about quitting his weekly feeding therapy's in Manhattan and that we had just been working with him at home. They were impressed with him and said he was a completely different kid from what they saw at our previous appointment. After they left the room to discuss what they saw and type up their recommendations, Kyler kept eating! He ended up eating around 300 calories! If he was getting a tube feed, he would have only gotten 220 calories! When the team came back in they said they were glad that the cut worked for him but it doesn't normally work like that. They were okay with us keeping him at 50% cut as long as he was still getting around 880 calories per day but they didn't want us cutting it anymore and we needed to do a weight check in a couple weeks. While in KC we also had a surgery check up which went well with no concerns and we scheduled his 2nd part of the surgery from July(to bring down his testicle). A little before his weight check, I noticed he wasn't eating as much so I upped his tube feeding back to 100mL. At his weight check he had lost between 1/2 and 3/4 of a pound. So we kept his feeds at 100mL and continued trying to get him to eat more orally. He started drinking a lot more from the cup but would only drink water. Sometimes exciting things happen when you least expect them. On November 3rd we realized at dinner time, that Kyler hadn't needed any tube feeding at all and had eaten all of his calories for the day! It was exciting but we didn't know that it was the start of something great. The next day he ate all of his calories again, and then the next day. He was still needing water through his tube to get his water amounts for the day but I was so excited about his eating! After a week I was giddy and afraid to say anything and jinx it. He seemed to be doing well, some days he would eat slightly less and others he would eat more than enough. He started having some trouble with stooling and we started putting juice and extra water through his tube to loosen up his stools. We are now on THREE WEEKS of eating orally! We are still using the tube for fluids and meds but I am so very excited about the food part! We are adding extra calories to his foods in the form of coconut oil to get him the good healthy fats he needs for brain growth since he mainly drinks water. He has begun to drink some milk but typically only if it is with cookies or a ding dong! I am hoping I didn't just jinx him by talking about how well he is doing but I just couldn't hold it in any longer! He is going to get a weight check this week and I am anxious to see what his weight is now. I am hoping that he has at least maintained his weight and not lost any. If he has lost any, we will have to start adding some tube feeds back in again. I also haven't talked to his feeding team or CDH team at this point. I am really wanting to make sure it isn't a fluke before updating them. What I do know is that they won't remove the tube until he gets through illness and shows he can continue to eat and drink enough during that. I am cautiously optimistic that if he continues to do well, that perhaps he can have the tube removed this spring or summer! I am looking forward to the January appointment for his ears. Kyler's speech hasn't really been progressing and though he seems to understand things, he isn't using words very well. He does a lot of vocalizing with yells and some approximated sounds and I know what he is wanting but not everyone can understand his grunts. The last 4-5 times his ears have been checked, have shown that he has fluid in his ears and we need to rule out that he is able to hear and determine if he needs tubes. One of his anomalies is that he has ear pits on both ears, one of them will leak fluid when you press around it. I don't want Kyler to have to have another surgery but part of me hopes he isn't hearing well and needs tubes. I only want this because it would explain why his language isn't developing. If that isn't why, I am not sure what is the problem. It's a strange world being a medical child's mom. A world in which you hope things are the problem instead of hoping they don't have that problem(the lesser of two evils type of thing). In other news, we got to attend a NICU Reunion hosted by Children's Mercy at the KC zoo the weekend before Halloween. We saw a couple familiar faces, one of which was his OT while in the NICU. She remembered him(hard to forget those big blue eyes) and we had quick chat to catch up. There were a lot of people there and after eating, the kids got to trick or treat around the zoo. We skipped most of the candy booths(lines were CRAZY long) and just enjoyed our walk around the zoo checking out the animals. We didn't get get through the whole zoo so we will be making another trip back when the weather is better! The kids were dressed up at Violet(Jaida), Dash(Gunner) and Jack Jack(Kyler) from The Incredibles and they sure looked good! Kyler had a mohawk and all! Kyler has been really fun to interact with lately. He is doing silly things to get laughs and is trying to keep up with his siblings more and more. He is still sleeping well and is able to put himself to sleep when we lay him in the crib awake! He is a drool monster and I don't say that lightly! He will sometimes soak through a couple shirts a day! I can't see any other teeth coming in but I can't check easily either! Once a finger goes it, he starts biting! Both Jaida and Gunner had school performances in the last month and Kyler enjoyed watching them sing and dance! They both did great and make us proud! We enjoyed Thanksgiving spent with family and then an extra day home thanks to the snow. Kyler didn't get to play in the snow but Jaida and Gunner made it fun for him from the other side of the glass! He was loving watch them play from the comfortable inside! Now we are counting down to Christmas break and then January will be filled with appointments and at least one surgery. We are hoping that Kyler will start walking unassisted more often and we can move forward with his physical therapy skills! I will try to keep this updated more often than every three months but we will see how well I do at that! Thank you for keeping Kyler in your thoughts and prayers! Love, The Moran's
0 Comments
Leave a Reply. |
Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
Hospital Visiting Hours and Rules
9:00am-7:00pm 8:00pm-9:00pm Archives
May 2020
Categories |