Catching Up

So, it's been awhile since I've posted anything. I was without my computer for a couple weeks and that made it hard for me to write up any entries. So I have a bit of catching up to do. We've been pretty busy over the last couple weeks. Lots of doctors appointments and therapies as usual but some fun things in there as well.

First of all, Caden is fully recovered from his respiratory infection which is a good thing! It took him a couple weeks but the breathing treatments made a big difference. Also, his feeding therapist said she was shocked at how much he had changed in regards to his oral issues. He is not taking any food by mouth yet, but he is definitely getting more oral. He puts his hands to his mouth all the time and also puts toys in his mouth. Now to most of you, this sounds pretty normal, but to us, this is HUGE! Caden hasn't been doing any of this and he is finally doing it. He is tolerating things in his mouth much better than before. Unfortunately if we try to put a drop of milk on the toy he is putting in his mouth, he gets highly offended, examines the object trying to figure out what is wrong with it and ultimately ends up throwing it down in disgust. It's pretty funny to watch, although it is also frustrating as we so badly want him to eat by mouth.

We have an appointment scheduled with a pediatric GI doctor in Walnut Creek for a second opinion. I don't think I've mentioned this on the blog before, but Caden's current GI doctor is recommending that we change him from a g-tube to a j-tube. In fact she was ready to do it the week that she mentioned it to us. That was back in August. Greg and I did not want to jump on that too fast because we wanted to be able to do some research first. One of the downsides of having a j-tube is that he would have to be on continuous feedings. He would always have to be attached to the feeding pump. That just makes his life and ours a little more complicated. Don't get me wrong, we will do what we think is best for him, but we just want to gather all the facts first.

For those of you who don't know the difference between them, the g-tube goes straight into the stomach, but the j-tube goes into the jejunum, which is part of the small intestine, past the stomach. The reason she wants to do this is because of Caden's retching. Because of the Nissen at the top of his stomach, he is unable to throw up. However he retches/dry heaves a lot. It is awful to watch and very painful for him. It's so sad! When he does it he gets really wet sounding in his upper airway. This is concerning to both the GI doctor as well as the pulmonologist because they are worried that during the winter months, this will be a brewing ground for bacteria and infection. So... that's where we're at. Our appointment is on the 28th of October.

Caden's 6-month review for services with Alta was scheduled for November 5, however we are now trying to change it to the following week. He has surgery with a urologist scheduled for the 4th and I just don't want to be too stressed to focus clearly and get the appropriate services in place for the following 6 months to a year. It is outpatient surgery but I just want to be mentally prepared for the review meeting and not distracted by a fussy baby in pain.

I am also trying to sort out a few other things for Caden regarding his therapies. Since he qualified with enough of a delay in speech and language, they initially recommended having someone from SCOE (Sacramento County Office of Education) come out once a month and have a session with him. I really would like something more often than that. I just know how much it benefited Kyler and I want to make sure Caden has all the help he needs. So I talked to our nurse case manager about it and she thought he should receive speech therapy once a week and that I should advocate for that at our review meeting. Our infant development specialist said the same thing.

Then I went to a retreat this past weekend and attended a seminar on sensory integration by a speech pathologist who works for Alta. After listening to her, I realized how much help Caden needs in this area so I talked to her afterward. I told her all the therapies Caden currently receives and that we might be starting speech as well. She knows quite a bit about Caden because her husband works with Greg. She said we should absolutely get him evaluated by an OT who specializes in sensory integration and we should do it sooner than later because that is one of the things the state is looking at cutting back on.

Also, starting the beginning of November, Caden is supposed to start receiving Synagis shots once/month to help prevent RSV. We don't want him to get this virus because it could be very deadly for him. So, this is just one more thing to add to our list of appointments.

On September 29, Caden's g-tube came out during the night. I discovered it just before 5 am and it had been out for many hours because the hole was closed too tight for me to get a new one back in. And, Greg was just heading out the door to the airport for a business trip. I needed to take Caden to the doctor and didn't really want to have to wake Kyler up to go with me. So I called a dear friend to see if she was able to come over for a little while and stay with Kyler. It is a good friend that will answer the phone at 5 am and say they will be right over, that is for sure! Sharon, you are absolutely amazing! Thank you!

Luckily, when I got to the ER, the doctor came in right away and was able to dilate the hole open enough to get the g-tube back in. And, it was all done relatively quickly so I was able to get home before 7 am. Kyler hadn't woken up yet and didn't even know I had been gone. It felt like a pretty long day to me, but I survived it. And, I was just grateful to get the tube back in Caden so they didn't have to do surgery to place a new one. That is always the fear that I have.

Photos of Caden in the ER while we waited to get a new tube:





So, many things are still up in the air, but I feel like they are starting to take shape and hopefully by the middle of November everything will be in place that needs to be. I would really appreciate your prayers in this area so that Caden can receive all the therapies that he needs in order to catch up with his peers and thrive. And we ask for your prayers for wisdom as we try to decide how to proceed with Caden's feeding tube. The answers are not always clear and we have to make the best decision we can based on the information we have. We know your prayers have brought us this far and we continue to ask for more.