Overview

On Sunday, Greg and I took Caden and went to Napa for three nights. Greg's parents came down to stay at our house with Kyler so we could enjoy some quiet time. I am not ready to leave Caden overnight with anybody yet so he stayed with us. But, on Monday, Greg's parents and sister took him for a few hours so we were able to get some true rest and relaxation at the spa of the resort where we were staying. We were able to get massages and generally relax for several hours. It was great. On Tuesday, Greg's parents had to go home, but my parents were able to get to our house and take over with Kyler until we got home on Wednesday.

Greg actually rode his bike from our house to Napa on Sunday and I drove over and met him there. He also went on a bike ride on Tuesday and decided to ride his bike home again on Wednesday. It was almost 100 miles each direction! And, when he got home on Wednesday, he had to do a pretty quick turnaround to get to the airport to fly down to Southern California for work that afternoon. He didn't get home until late Friday night.

We've had some success with potty training with Kyler! He definitely has a ways to go, but he is headed in the right direction. He will poop on the potty about half the time now which is fantastic! We just keep putting him o the potty every half hour and make him go pee at least. He's starting to get the hang of it and I am grateful!

On Thursday my parents left to start their drive home back to Coeur d'Alene and took Kyler with them. They are spending a few days at my sister's house in Portland before heading all the way back home. I leave this next Wednesday to drive up with Caden. I will also spend a few days in Portland and then will drive the rest of the way to Spokane. I am going to stay with my sister there and my parents will bring Kyler to stay with me once I get up there. It will make my drive up north a little easier to have only one child with me so that is nice. However, in the meantime, we do miss Kyler and his energy around the house. Thursday and Friday seemed so quiet with just me and Caden here.

We kept busy with appointments both days though. On Thursday, Caden had an early appointment with his GI doctor. It was just a follow-up appointment to see how things were going. I let her know my frustration with the lack of communication from her office and the fact that they didn't schedule the swallow study like they were supposed to. She was very apologetic about this. We are supposed to get another study scheduled for three months so we can see how Caden is doing at that point and make sure he is still not aspirating. So, in order to assure me that it would get taken care of, she had me wait in the exam room while her staff made the necessary referrals. The medical assistant told me I would be getting a phone call from the scheduler at Sutter Memorial Hospital in Sacramento to get it set up. We also decided to increase the amount of formula we use to fortify Caden's milk with. So, the dietitian came in and told me she had faxed the order to our home medical supply company to get it taken care of right away. I needed to have it delivered before we leave on Wednesday. However, as of Friday afternoon, the medical supply company had not gotten this taken care of because they said they had not received the faxed request from the doctor's office. So we'll see what happens...

Later that morning Caden had a follow-up appointment with Dr. Van Gundy, our cardiologist. He gave us the results of his last echo which was fantastic. He said all the pulmonary pressures look completely normal, the coarctation repair looks perfect and he is very happy with what he saw. He told us to wean one of the medications down to once/day from twice/day so we're on the right track to getting him off everything. Also, Caden weighed in at 12.2 pounds! This moved him from 3rd percentile to 10th percentile in weight! That's pretty exciting for us. It was a great appointment and wonderful to hear such good news!

On Friday, Caden had two more appointments. First, the child development specialist from Easter Seals came out for her first session with him. She played with him for almost an hour and he did really well with her. He responded well to the different stimulation she gave him with the toys and books. It was very cute to see and it helped give me ideas of things I can do with him to encourage different movements/behaviors as well. She will visit us two to three times/month for now and in six months re-evaluate to see if she should come more often.

And, then our last appointment for the week was with the feeding therapist. I had been looking forward to seeing her all week. Caden was doing pretty well taking his pacifier dipped in milk. But as soon as we started to use a bottle nipple dipped in milk, he would fight it. He could see it wasn't the same thing and he wanted nothing to do with it! So, Stephanie suggested a few things to try with him over the next three weeks while we are gone. Hopefully we will get him to take the bottle more easily and he'll be wiling to swallow. Stephanie said he was doing some appropriate movements with his mouth and tongue, but he would need to get better at them. And, we need to move the gag reflex back. Right now, he's okay with something going into his mouth to about the middle of his tongue, but if it goes past that, he gags. So we need to move that reflex back so the bottle can go further back in his mouth and he can eat. This definitely isn't an easy process, but she was really optimistic and thought he would progress nicely in time.

Lots of things going on and lots to do to prepare for our departure on Wednesday.

Oral Feedings

Well, we knew it would take some time, but the oral feedings are not going very well. In fact, “feeding” is too generous a term for it. Right now, it's more like “tastes”. We are happy if Caden lets us put his pacifier dipped in milk in his mouth. He is NOT impressed with anything going in his mouth. He has to get used to tasting the milk. Up until now, it's all gone through the g-tube. So he has a lot to learn. And, I think another thing that will make this transition hard is his rapid breathing. Babies have to coordinate the suck-swallow-breathe cycle and if you're breathing 80 respirations/minute (or more), it makes it a lot harder to do that. So, we definitely have our work cut out for us.

Stephanie, our feeding therapist, came on Friday to start working with Caden. Unfortunately, we had a crazy morning and Caden didn't get to nap much so when she got here he was exhausted and very uncooperative. But she was still helpful for me. She brought a special bottle that allows us to adjust the milk flow. And, she suggested for now that we have him suck on it without milk coming out of it. For now, she said just dip the tip in milk and put it in his mouth while he's having a g-tube feeding. We are just trying to get him used to the taste of it and get used to how his tongue needs to cup the bottle in order to suck. I worked with him quite a bit on Saturday afternoon with that and he was starting to do a little better taking the bottle in his mouth. But he still pushes it out for the most part. But we are trying to associate the taste of milk with the feeling of his tummy getting full so he will be more willing to accept food by mouth.

I discussed the possibility of starting solid foods with Caden's pediatrician and Stephanie. His pediatrician said it wouldn't be his first recommendation, but we were welcome to try it if we wanted to. But normally he would suggest waiting longer. Stephanie felt pretty strongly that we should wait until around 6 months. She said developmentally he is just not ready for that and we shouldn't push him to do that before he is ready. I will still talk to Caden's GI doctor about it next week, but I think for now, we will wait on any solids. We waited until 6 months for Kyler, so it would make sense to wait until then for Caden also.

Caden has had a bit of a cold. I figured he caught it from me when I was sick. He has been congested which I didn't worry about too much because he could still breathe out his nose and I could suction him to clear even more. My concern came when he started coughing. He wasn't coughing a lot, but occasionally. After about a week of this, I decided I needed to take him to the pediatrician to have him checked out to make sure his lungs sounded okay. If he gets any kind of respiratory bug, it could be very bad for him! So, I was feeling a little over-protective. But, after listening to him and doing a thorough exam, the pediatrician thought he sounded okay. He said the congestion could be related to teething but who knows. I can't feel anything in his gums so I'm not convinced that is it. But I will monitor him and see what happens. I am very relieved that his lungs sounded clear! That was my biggest concern.

Today we head to Napa Valley for some R&R. Greg's parents drove down to stay with Kyler so we could have a bit more quiet time while we are there. Caden will be coming with us because I am not comfortable leaving him with anybody overnight yet. We will be there three nights and it should be fun. Greg is going to ride his bike over there from our house (yes I know that seems crazy!) and I will drive over and meet him there. He plans on doing some riding while we are there and I will get to have a little spa time. : ) I'm definitely looking forward to that. Greg's parents have to head home on Tuesday, but my parents will be back that day in order to stay with Kyler until Wednesday when we will get home. It should be a fun trip. Hopefully Caden cooperates and sleeps well while we are there so we can all get the rest we need.

Please pray for us as we work on oral feedings. Caden is definitely not as excited about them as we are. And we are more than anxious to get rid of this feeding tube but we're going to need to be patient and that's not easy.

Swallow Study – Passed!

On Tuesday, Greg and I drove Caden over to Stanford for two appointments. The first one was with genetics as a follow-up to monitor how Caden was doing. When they saw him in the NICU they did an overall assessment and ran a bunch of tests to try to determine if he has any kind of syndrome. Those tests came back normal and from the exam there was nothing clinically that stood out to them. So they said they want to monitor Caden and see how he progressed to see if down the road, if there was something that became apparent about him. They are convinced that with as many defects/anomalies as Caden has, that there is definitely some sort of syndrome involved, but they just don't know what it is yet. They only thing they could tell us today is that his head seems small. His head circumference, length (22 inches) and weight (11.7 pounds) are all measuring just under the 3rd percentile so he is proportionate. However, they said that in “normal” babies, even if they do not get the nutrition they need (as in Caden's case for almost the first two months of his life not being able to have any food), their head still grows bigger in proportion to their body. So they said based on that, they believe there is something wrong with him. But to us, he seems perfect. They want him to be seen at one year of age for the next follow-up. But luckily they said we can go to UC Davis which is much more convenient for us. Who knows what the future will bring. But whatever it is, we will love our precious little miracle and treasure him.

During our appointment with genetics, Caden's g-tube started leaking and I panicked because I was afraid it was going to come out again. We are on our 8th tube since coming home from the hospital at the beginning of March! One tube is supposed to last three months! Our last one only lasted 4 days! Last week when I replaced it, I used our only back-up. So when we drove over to Stanford, I didn't have a replacement with me. When I saw it leaking I was worried it was going to come out and we would be in trouble. Thankfully the genetics doctors made a call and set us up to see a GI nurse who could help us assess any problems with the g-tube. She got us in just after 1 pm and was able to determine the balloon still had enough fluid in it. And, she checked to make sure the balloon wasn't leaking, which it wasn't. Then she gave us a replacement tube to take with us just in case. That gave me the peace of mind I needed. I was so glad she was able to get us in. As soon as we finished with her, we rushed over to the hospital for our swallow study.

The swallow study was scheduled for 1:45 and we only had to wait a few minutes before they called us back. I was happy to see Sandra, the OT feeding therapist who worked with Caden in the hospital. She was the one doing the studies that afternoon. They started him right off with regular thin milk and he fought the bottle in his mouth. He didn't swallow very much, but what he did swallow went down the right way and he did not aspirate at all! Yippee!! He definitely has a ways to go before he is transitioned to all oral feeds because he has oral aversions. But now that we have the all-clear on aspiration, we can get started. We have a feeding therapist scheduled to come on Friday to start working with him. I am so excited about it. The OT at Stanford suggested we could start feeding him solid foods because he for sure wouldn't aspirate on those. And, she said the solid foods might progress more quickly than the bottle feeds just because it's something completely different. I will discuss this with Caden's pediatrician, GI doctor, and the feeding therapist to come up with a plan that will work best for Caden. In the meantime, we are celebrating the day's success. We are so thankful we didn't have to wait three months to get the study done because it would have made it that much harder for him to transition to oral feeds. The earlier we start the better. We'll keep you posted.

Here's a photo of Caden with Sandra

Before we left Stanford, I had to take a quick tour of the new CVICU unit at the hospital. They opened in mid-April and we haven't been there since then. It is a beautiful unit and I'm sure it is a nicer place for families to be with their children. However, I hope we never have to spend any time in it again unless it's just to visit the doctors and nurses there to show them how big Caden has gotten and how well he is doing! But it was fun to see the new facilities. As soon as we finished there, we headed home and were happy to get here before 6 pm. It had been a long day with a lot of driving and we were glad to be home. It was also a hard day on Caden. He really prefers to sleep in his bed and doesn't do well sleeping in the car or while we're out and about. So, the poor baby was completely exhausted by the time we got home. Those kind of days are hard on him. But we all survived. Thank you all for your prayers as we work on getting Caden on oral feeds. It could be a long process.

Potty Training Update

Since my last post about potty training Kyler, a few things have happened. This last week a friend of mine from church was able to take Kyler for a couple days and work with him on pooping in the toilet. On Monday, although she tried, he would just not do it. On Tuesday, she was able to take him for more hours and in the afternoon, he finally pooped in the potty! She called me to tell me about it and was so excited. She said he was so proud of himself and kept saying, “I did it!”. So we decided to see how he did for me on Wednesday and if he pooped, we would continue working with him on our own. So, Wednesday morning, we were at the cardiologist's office for Caden's echo and we were in the waiting room. My mom was watching Kyler play and all of a sudden he stopped for a second, she grabbed him and took him to the potty and he pooped! He had gone a tiny bit in his diaper first but he finished it in the potty. He was so proud of himself he wanted to run back and tell me all about it. So great! Then, that day after lunch before he went to his room for quiet time, my mom put him on the potty again and this time he did it all in the potty. We thought we were on the track to being potty trained.

Then on Thursday, we had some errands to run in the morning, but I planned out the potty stops along the way so we could get him to poop. Each place, he would try but nothing came out. Then, we ended up at the park with some friends. The park had no potty and he ended up going in his diaper. Bummer! But what was I going to do? I don't have a potty chair yet (will have one by the end of this weekend though) so there wasn't really another option for him. But he ended up going in his diaper again later that day also. Then, on Friday, same thing. He went several times in his diaper even though we were watching him like a hawk waiting for any sign of him going. He would just sit on the potty and say “I can't do it!”. It's so frustrating to know he can do it now but just won't. I know he'll get there someday but I feel like that day is too far away! Thank you all for your comments and emails regarding potty training. I know he won't go to college in diapers, but I am really DONE with them. If anybody has any tips they would like to share on this topic, please do!

Kyler Reading "Moses" to Caden

About a week ago, Greg was out of town and I was getting both the boys ready for bed. I was changing Caden's diaper getting ready to put him to bed and I told Kyler to pick out a couple books for story time. From Caden's room, I hear Kyler "reading" the book about Moses. It's his favorite book and he has the whole book memorized. When I tried to take a video of him reading it, it took some prompting from me. But he can do it by himself when he's not put on the spot. At any rate, it's pretty cute. Enjoy! : )

Mother's Day

Backing up a bit from our last post, I wanted to say something about my Mother's Day. I had a great day with my family! Greg made waffles and pancakes for breakfast which were very yummy. And, then after some cleaning (done mostly by Greg), we took the whole family to the park. It was such a beautiful day and this was really our first official outing with our family of four! We got there and Kyler ran around and played on all the playground equipment and chased a dog and got very hot! While he did that and Greg followed him around, I held Caden while he slept. It was so sweet! We got some great pictures also. We left sooner than I thought we might because Kyler was hot and tired, so we headed home and set him up in the backyard with a sprinkler water toy. That made him happy and it was fun to watch him having so much fun with it! Then, that evening, Greg picked up Thai food and brought it home for dinner. Yum! And, later on, Greg was able to put up the curtain rods and curtains in Caden's room (it's only been 10 months since we moved in!). And, also our curtain rod in the dining room. I am so excited to finally have some of these projects coming together and getting done. Our house is finally starting to feel like home now that we can actually put some decorations up. Anyway, overall, I had a great Mother's Day. See photos below.

Swallow Study

Monday I was extremely frustrated because I had been waiting for a couple weeks to get a call back from the GI doctor's office regarding whether or not they had been able to schedule Caden's swallow study at Stanford for next Tuesday, May 19. She said she was going to do it for that day, but I hadn't gotten a call telling me it was scheduled. And, I left more than one message at her office to try to find out. Finally, on Monday, I decided to just go into the office and find out in person. When I got there, I found out the doctor was on vacation this week, so her medical assistant talked to me. She said the study hadn't been scheduled yet, but she would do it that day and call me back to let me know. Later that morning, she called and left a message on my home phone while I was at the pharmacy, and said that she was unable to schedule the study because Stanford was scheduling three months out, UC Davis was at least two months, and Sutter Memorial was also three months out. She wanted to know what I wanted to do. Well, I wanted to scream! I was so frustrated that we had lost three weeks because the ball was dropped and the study didn't get scheduled anywhere! So, I called the office back, and of course, was not able to actually get anybody on the phone, and had to leave a message. I told her to just schedule the very first appointment at whatever facility could get us in the soonest. And, I have yet to hear back from her about this subject.

Later in the afternoon, I decided I was going to do more research on my own and see if I could figure out any other way to get the study done sooner because I can't conceive waiting three months before finding out if Caden is still aspirating. He would be 7 months old by then! So, I emailed the OT feeding therapist who worked with Caden when we were at Stanford to see if she had any suggestions on ways we could get in sooner. She emailed me back right away and said she looked at the schedule for the 19th and thought there was an opening at 1:45 that afternoon but she didn't do the scheduling so couldn't add us herself. She suggested having our pediatrician call and get the request in right away in order to get the spot. So, I immediately got on the phone and called our pediatrician's office and left a message for him to call me as soon as possible. He called me back within 10 minutes (have I mentioned what an awesome pediatrician we have?!) and I explained the situation to him and asked him to please call Stanford right away and see if they could get Caden in at 1:45 on the 19th. He said he would be happy to and would let me know what he found out.

I anxiously waited to hear back from our ped until mid afternoon on Tuesday. I had to control myself from calling his office to find out what was going on. But I knew he would call me as soon as he knew something. And he did. When he called me I asked him what he found out and he said he found out that Caden now has an appointment for 1:45 pm on Tuesday, May 19 at Stanford!!! Exactly what we wanted! Now, we will have both appointments that day just like we hoped. What a relief to be able to have both appointments on the same day, AND to be able to get the swallow study done! We are so eager to find out if he is still aspirating. Because if he's not, we can start working on transitioning him to oral feeds as soon as possible! We have a feeding therapist in Sacramento who is going to be coming to our house to work with us starting May 22 and we really needed the information from the study before we started working with Caden. And, since we will be going on vacation in June for two and a half weeks (the kids and I, Greg only gets a few days), I really wanted to be able to work on the feedings while we were gone and I had the help of my family.

Anyway, the moral of this story is that you need to advocate for your children. You don't have to just sit back and wait for the doctors to do something. You may have to do all the legwork yourself, but it is possible to get things done in a more timely manner! You just have to put in the effort. I am really happy with the way things turned out and am so grateful for our relationship with the fantastic OT at Stanford! None of this would have been possible without her “insider information.” We'll keep you posted on the results of the study.

Week in Review

This past week we had several more appointments. The first appointments were on Tuesday. Both Kyler and Caden had follow-ups with Dr. Van Gundy, our cardiologist. Because both my boys' heart defects are relatively “minor”, I never get too anxious about going to see Dr. Van Gundy. And, thankfully, both boys are doing great. He said Kyler's pulmonary valve still has a little pressure in it, but that is the way he wanted it and from everything else he saw in the echo, all the other parts of the heart are functioning as they should be. Yeah! And, for Caden, he said he sounds great! He hadn't gotten a copy of the echo done at Stanford in April so he couldn't comment on that. But we talked about the medications he's on and what we should do to adjust dosages, etc. He discontinued one medication completely (yeah!). And, he left the other three the same. No changes in how many times/day or amounts he gets. But because he is gaining weight (he weighs 10.2 now!), he is outgrowing the dosage so at some point, he will have weaned himself off completely. So we were happy about the report from Dr. Van Gundy. We actually spent some time discussing Caden's sweatiness. He gets really sweaty and hot sometimes and we weren't sure if that was something to be concerned about. After talking to us some more about it and doing an exam on Caden, Dr. Van Gundy said he thinks it's just Caden and that he runs hot. He doesn't think it is anything too serious so that is good. Overall a good report on both our boys!

On Wednesday, a physical therapist from Easter Seals came to evaluate Caden and determine where he was at with his fine and gross motor skills to see if he qualified for services or not. She was here an hour and a half and did lots of play exercises with Caden to see how he responded. She said she was really happy with what she saw. She said he is definitely delayed and qualifies for services. But she said he seems very motivated to do things and he is making appropriate movements with his arms and legs which indicates that cognitively things are in working order. Overall, she said the delays she sees are probably solely due to the eight weeks he spent lying flat on his back in the hospital, not related to any other issue. We're not sure when therapy will start, but I'm hoping soon. She said there can sometimes be a waiting list but they will let us know as soon as they have a therapist who can take him. He will start out with PT once a week and then as he gets older and can tolerate more, they might move him up to twice a week. But that will have to get approved through the Regional Center since they are funding the therapy.

Then, on Thursday, our service coordinator from the Regional Center and the RN from Sacramento County of Education (SCOE) came to get everything in place for Caden's services from both organizations. We are getting him set up with PT, a feeding therapist (whose background is speech pathology), an infant development specialist, and respite care through the Regional Center. And, through SCOE, we will be getting monthly visits from an RN, an OT evaluation (who will work in conjunction with the PT) and possibly a speech assessment when he is a little older. So, a long list of services for a little guy. But we are really happy to be getting him going so early. We know from our experience with Kyler, that early intervention is huge in helping kids catch up in areas of delay.

This week was complicated for us by my coming down with some kind of bug. I think I had some sort of flu because a couple nights I woke up completely drenched in sweat. But I never felt a fever during the day. I've just had sort throat, congestion, runny nose, achy body, and now coughing and respiratory issues. I don't enjoy being sick, in general. But the worst part about this is the risk it places on Caden. He can't afford to get any respiratory illness. It could be very devastating for him! So I have been trying to limit my contact with him, but that is hard since I am his primary caregiver. Greg was out of town for work on Thursday and Friday and that is when I got the sickest. Thankfully I had a friend who was able to come help me out for a few hours on Friday morning so I could rest and stay away from Caden. And, another friend brought us dinner so I didn't have to try to get that done in the midst of everything else. And, today we have some friends that took Kyler to church and Sabbath School so Greg could be home to take care of Caden. We are truly blessed with our wonderful friends here!

I ask for your prayers for me to get well very soon and for Caden to not get sick!

Pictures

We finally had a chance to get "newborn" pictures taken of Caden and our family. We thought they turned out really well so I am posting a few from that photo shoot. Enjoy!

Potty Training

As if life wasn't busy enough with all Caden's special needs, we have a 3-year-old who needs to be potty trained. I realize that all parents go through this struggle of potty training their children, and they often have to deal with younger siblings when they go through the process. But, somehow, this task seems insurmountable to me right now!

Kyler is capable of staying dry and peeing on the potty as long as I take him every 45 minutes or so. However, he WILL NOT poop on the potty. He just won't do it. I have spent many hours with him in the bathroom trying to get him to do so. I read books to him, I show him a jar of lollipops he can have as soon as he goes. I have done everything I can think of but this stubborn child will not do it.

I thought if I put him directly in underwear (which he was very excited about), if he went in his underwear once, he would realize how much he didn't like it and he would then decide to go in the potty. Unfortunately, I was wrong! One day he had been doing really well in underwear staying dry, but he had not pooped yet. I sat with him in the bathroom for as long as I could get him to stay there but he wouldn't produce anything. So I finally gave up. Then, not more than 15 minutes later, he came to me and told me, “I pooped.” And, sure enough, in his underwear!!! So, I did my best to clean it up without throwing up myself. Then, he did it two more times that day! That is just more than I can take. Because in the midst of all of this, somehow I have to feed Caden, give him his medications and pump myself. Oh, and somewhere in there, Kyler and I have to eat. I honestly don't know how other people deal with this.

My mother-in-law thought she would get him to go on the potty, but only succeeded in tanking him up enough so that he ended up pooping on the lawn in their back yard. So, apparently he is stubborn enough and has decided he is just not going to do it. I have talked to a friend at church who is going to try to take him for a week and get him potty trained. She has trained many children and doesn't have small children to care for so there is a possibility she could be successful. I am praying this is the case. Because I have had my fill of 3-year-old poopy diapers and underwear! Wish us luck!

Busy Week

This week has been a really busy week with appointments for Caden. On Monday, an infant development specialist from Easter Seals came to evaluate Caden. Easter Seals is contracted through Alta CA Regional Center to provide this service for us. The Regional Center provides free therapies for children birth to age three. It's a wonderful program and we are so happy to be a part of it.

The infant development specialist evaluated Caden in many areas. He definitely has some delays, not a big surprise considering he spent the first two months in a hospital without the ability to do many things. For now, we will probably see this specialist once or twice a month for the next few months. Once Caden gets a little older, she will start coming more often, probably weekly, to make sure he gets all the help he needs to develop “normally.” I am happy to have this service and look forward to starting.

Then, on Wednesday, Caden had an appointment with a pediatric surgeon regarding his g-tube. This was the surgeon that the ER doctor had talked to when we had to have the foley catheter placed. She had wanted us to come in so she could put the Mic-Key button back in. However, we had seen the pediatric gastroenterologist on Friday and she had put one in already. It was smaller than the original one we had, but we were so happy to have an actual g-tube back. So, when we saw the surgeon, there wasn't much for her to do but she decided to try to put in the larger size we had started with. Luckily it went in easily and she didn't have to dilate the hole. And, she decided to put silver nitrate on the granulation tissue around the opening of the hole where the g-tube goes in. It helps stop the growth of more scar tissue. It burned and caused him considerable discomfort, poor baby! Other than that, it was a short appointment and we headed home.

On Thursday, a speech pathologist who specializes in feeding therapy came to evaluate Caden. She works through the Regional Center also. Because we don't know yet whether or not Caden is still aspirating, there isn't much she wants to do yet with feeding. However, she wanted to start us on some pre-feeding things to prepare him for more oral feeds. He doesn't reach for toys yet or bring them to his mouth so she wants us to do it for him. She wants us to take toys with different textures and feels to them and put them in his mouth for him. Rub them on his cheek and face and on other areas of the body as well. The idea is that by exposing him to different textures in his mouth, it will help pave the way for food when the time comes. We won't see her again until toward the end of May, after we have the next swallow study done. But at that point, we will be working with her weekly on Caden's oral feedings. That is assuming he gets an all-clear in regards to aspirating, which is what we are praying for!

And, lastly, on Friday, an RN who works for Sacramento County Office of Education (SCOE), came to assess Caden as well. SCOE also offers free services for infants birth to three with developmental delays or medical issues. He talked to me about the program and took a health history on Caden. I think it is something where he will come check in on us periodically and make sure we are doing okay. It would be nice to have so we'll see how it all works out with coordinating the services from all the various agencies. We are so grateful for the services that are out there and available to us. Sometimes it's a matter of knowing what the resources are so you can ask for them. After next week's planning meeting on Thursday with our service coordinator from the Regional Center, I should have a pretty good idea of what services we will have in place for Caden. Several more appointments await us next week so I'll update more then.