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